Since moving to a state with one of the highest rates of opioid deaths, my new provider discontinued my Tramadol, a synthetic opiate I used for moderate to severe pain. He “wasn’t comfortable” writing the prescription I’d taken for 1.5 years without abuse. Referred to Cleveland Clinic for pain management, we made the four-hour trek with hopes of more specialized view about my pain and management thereof. So came my introduction to the rising trend in chronic pain patients sent to Chronic Pain Rehabilitation Programs.
After a brief records review, a limited physical exam, and hurried assessment questions, the pain management doctor recommended discontinuing the tramadol. In addition to this, he referred me for to the Chronic Pain Rehabilitation Program. He also prescribed Gabapentin, offering an abrupt explanation of the program benefits specific to my pain. He said my chronic, progressive conditions. won’t get better so I must learn to live with my pain now.
Let me just say, I am thankful for the gabapentin. Fortunately, the medicine decreases my pain and helps me sleep in ways Tramadol never did. I chalked it up as a win even though I felt miffed we drove four hours for something my local neurologist could prescribe. Still, the referral for the Chronic Pain Rehabilitation Program felt insulting. My hubs thought the same. He sees what I go through every day just to get a quality of life out of living.
A Recommendation for What???
Before the recommendation, I reported on all the non-pharmaceutical techniques used in managing my symptoms along with my limited use of as needed pain medication. I described my dedication to physical and occupational therapy routines as well as my holistic principles used in managing my illness. My active participation in psychological therapy for aspects of my illness made worse by my neuropsychiatric disorders and history of trauma impressed the PA as she stated: “It’s good you already have ways to manage.” My assertion of expectations didn’t include “pain-free” but only taking the edge off a process poulticed daily with complementary therapies. Lastly, I made it clear I stopped the tramadol more than a month prior with no major issues besides an increase in pain levels, fatigue, and subsequent activity intolerance resulting.
Knowing the importance of accurate medical records, I checked the appointment note afterward. I found only a brief note, citing Tramadol and heat for pain relief. The note also included an inaccurate, full body assessment I did not undergo. The doctor claimed he explained the risks of opioids and why chronic pain gets worse with opioid management. He never mentioned any of this to my husband or myself. On a side note, he documented my symptomatology as having a “Fibromyaglianess” quality, a potentially negative term in the mind of the wrong practitioner.
The recommendations for my treatment plan included all the things I already do, almost verbatim in my own words. Yet, no credit for any of my health seeking behaviors. My suspiciousness felt validated with this information. Chronic Pain Rehabilitation Programs don’t treat “addicts” but target people with chronic pain and symptoms, treated with narcotic medications.
I scoured the net for experiences with the intensive 3-4 week Chronic Pain Rehabilitation Program to make an informed decision. In order to do the program, I must leave my family and stay out of town alone. If I went, we must cover all food and lodging out of pocket.
The pamphlet indicates the program includes intensive PT, OT, and CBT while consulting with neuromuscular, neurological, psychiatric, and ortho specialists. Getting patients off addictive medications is the main goal of the program along with improving functional status. The few authentic success stories admitted continued illness but reported better coping leading to better quality of life. Diggingpassedthe gleaming reviews, touting success with over 300 patients a year, I found the program uses “tough love.”
Frighteningly, many experiences were negative with damaging consequences reported. One account described the prohibition of assistive devices (cane, wheelchair, braces). Another related discharge from the program because of orthostatic intolerance with POTS. Reportedly, discussing diagnoses or pain violates the program rules.The central theme of these abrogating reviews alluded to Cleveland Clinic using ableist strategies in managing chronic, disabling conditions.
Obviously, we all know the benefits of a “well” life style. Even so, we deserve respect for the chronic processes we fight through each and every day. Retraining the brain to focus on the positive is great. What’s not is the practice of invalidating patient’s experiences, efforts, and pain. This isn’t only negligent but downright damaging on multifaceted levels creating the human existence.
More critical and constructed reviews point to the possibility Chronic Pain Rehabilitation Programs stand as a straw man, maximizing insurance payments, ensuring the highest sums go billed and credited without question.
Is Cleveland Clinic, a hospital setting the bar nationally, forgoing traditional medical models for complementary medicine in efforts to maximize insurance revenues while perpetuating a culture of ableism harmful for those with disabilities with the Chronic Pain Rehabilitation Program?
This all or nothing theme is alarming; Perhaps, a forewarning of practitioners taking our issues with even less concern than we already muddle through. Ostensibly, Cleveland Clinic reinforces chronic illness as a state of chosen neurosis rather than a tangible experience. No amount of mindfulness, stress reduction, clean eating, or yoga can suspend these processes into oblivion, sadly. Nothing stops genetic defects causing chronic disease from making life a living hell given the right stipulations. Absolutely, wellness activities do benefits of wonder for some of us, but not all and not all the time.
Naturally, I am not accepting the recommendation for the program.
The experience creates a sore knot in my stomach. The doctor took my case and deleted all the positives. I’m painted a patient overwhelmed with pain without any coping techniques but narcotics…Oh, and a heating pad.
Truly, I am overwhelmed by pain some days but not to the point I need behavioral boot camp. Frankly, this program might help a limited few but makes an even greater case for ableism in healthcare. Still, what consequences might the Pain Rehabilitation Programs play out in the chronically ill and disabled community?
What do you think? Could Cleveland Clinic’s alternative approaches hold the answers to managing chronic pain without opioid medications? Is taking away assistive devices and barring illness talk a better effort to improve the illness condition? Do you think tough love helps people with chronic pain? Is pseudoscience the only option left for chronic pain patients caught in the teeth of the opioid epidemic? Is there value to pseudo-science practices? If you have chronic pain, would you volunteer for this treatment route? Why or why not?
Welcome back to the second edition to my neuropsychology testing chronicle!
In the first post of this series, I discussed my recent admission appointment with a neuropsychological practice for long-term troubles with Anxiety, Depression, PTSD, suspected Autism Spectrum Disorder and worsening cognitive impairments. Neuropsychology is the marriage between the neurological and psychological processes of illnesses allowing the complete view of the complex pathology of neurodegenerative disease. In the not-so-distant past, these components were separate and faulty as a result. Neuropsychological testing is an important part of medical monitoring in chronic illness life with Ehlers-Danlos Syndrome just as much as all the scopes, scans, and blood work. The testing examines processes which cannot be objectively defined otherwise while offering validation to those suffering from permanent and/or progressive deficits.
Finally getting this type of evaluation was a long time coming in my lengthy chronic illness story. My experiences as a Psychiatric Registered Nurse and chronically ill, undiagnosed Medical Zebra frightened me to the point I avoided any type of psychological care for the last several years in fear of mistreatment.
Ten years of declining neurological and cognitive functions, long-term struggles with anxiety, depression, PTSD, and suspected Autism Spectrum Disorder combined with recent, notable exacerbations of these issues make neuropsychological consult an absolute must.
This important step establishes a solid baseline of data for future comparison when the inevitable declines hit. Medical monitoring is a crucial but necessary evil in Chronic Illness Life with Ehlers-Danlos Syndrome. In the USA, every action in healthcare finds billable justification for treatments within the never-ending volume of ICD codes. Grievously, these ciphers are faulty with too stringent of criteria leaving access-denied bodies littered along the wayside of the road towards proper diagnosis and management. I urge every Spoonie to investigate the route of neuropsychological testing to better illustrate the difficulties experienced and better shape symptom management options towards improved quality of life.
Truly, it’s a daunting task even considering this route in my journey after decades of years proving my medical complaints were not Only in this Head. Appropriate coding and criterion noted by a diagnosing practitioner makes a world of difference in navigating the turbulent waters between providers, insurance companies, and access to care, especially with rarely diagnosed, complex disease processes like the Ehlers-Danlos Syndromes. Taking this step is a pivotal point of my journey. Furthermore, the choice took great courage and gumption because sometimes knowing is scary!
Neuropsychologicalevaluations offer quantifiable evidence of cognitive function with a definable focus on intelligence, memory, mental processing, behavior, and mood.
My troubles in all these areas start with my first memories but in more recent times a sharp, notable decline took my brain by storm over the last few years. I cannot recover my bearings as I once did. Sharing this experience is an effort to help others facing similar struggles in hopes they may find support and information in the lessons offered in this cathartic exchange.
My newest life’s mission incorporates weaving invisible disability and disease awareness into my writing. Sending off my neuropsychiatric journey to the vastness of cyberspace is terrifying but not so much as the lack of awareness still pervading modern culture to this day. After endless years of symptoms undiagnosed and undertreated, my nervous system is spent! I liken it to a broken phone charger: if you hold it like this, maybe twist it like that, and then leave it lay perfectly still it gives off a few more amps of power… Just not enough to keep me going before everything goes kaput again…Not anymore!
As a whole system, the body aims towards balanced responses to intrinsic and extrinsic factors affecting homeostasis. Using administrative privileges as needed, the body powers down less vital systems to make up for the ill effects of other systems gone rogue. Fundamental quandaries in cellular function run amuck, causing metabolic dysfunction. Eventually, natural defenses break down, leaving no system is unscathed by the disequilibrium.
Predicaments disrupting the natural ebb and flow of the body are often times first evidenced by neuropsychiatric symptoms. Even “just depression,” “just stress,” or “just anxiety” may be caused by degenerative processes beyond our emotional states. The processes work insidiously, damaging neurological functions over time with the only signs and symptoms being mental disharmony.
Depression, anxiety, mental fog, memory issues, difficulties with problem-solving, lack of attention to details, and inability to sit still are just a few cautionary signs of neuropsychiatric illness too often disregarded as psychosomatic symptoms by practitioners who lack interest or time. Such complex cases end up worse for the wear because of this common tendency to disregard a person’s complaints as simply stress induced.
What’s worse is everyone deals with psychosocial stress in life. These mental effects are normal reactions to life stressors. Neuropsychological testing illuminates the blurred boundaries between normal and abnormal changes, allowing for clarity and objective data collection from a chronically ill brain’s reaction to life as a result of pathophysiological illnesses affecting the nervous system.
Including an hour break for lunch, it took nearly five hours to complete all aspects of the testing. I answered a variety of questions measuring my intelligence, comprehension, recall abilities, and how my mind processes reality. This line of questioning proved nerve-wracking as my attention to detail is great but my ability to process incoming details is severely impaired. As I experienced difficulties in several categories, a sense of validation entered my conscious thought: Finally, quantifiable evidence.
One of the most memorable aspects of the testing included the Rey Osterrieth Complex Figure Test. This test entails the subject (me) drawing a picture of a simple spaceship design shown below. Per the instructions, I copied the picture once initially while the sample was still visible. Then I copied the figure from memory after a half an hour. Finally, I reproduced the design a third time at an hour out from the original drawing. This test measures cognitive abilities on a scoring system giving points for correctly drawing details as well as a consideration to the time it takes to reproduce the figure.
Theoretically, the results reveal incites about a person’s ability to function, measuring cognitive deficits in memory, perception of objects in time and space, attention span, and even planning and executing functions essential to living.
Another component of my exam included the Kohs Block Design Test which measures intelligence. What’s unique about this particular intelligence test is it doesn’t require spoken or written language, thus making it particularly useful when language barriers prevent accurate intelligence assessment. I was instructed to copy patterns from a book of pictures using blocks with shaded sides.
The simpler patterns were easy enough but as the designs became more complex I felt mental blockades stopping me from any quick discernment to an embarrassing extent. The Kohs Block Design Test measures frontal and parietal lobe functions, quantifying difficulties expressed in neuropsychiatric illnesses such as Bipolar Disorder, Alzheimer’s and Traumatic Brain Injury. When scored this test reveals mental age and level of executive functioning objective from the subject’s experience.
With frontal lobe dysfunction, emotional and behavioral control becomes much more difficult. This effect compounds in the form of interpersonal issues along with difficulty in scholastic efforts, career, and social adaptation.
The frontal lobe holds the gage on impulse-driven behavior. Dysfunction leads to disturbances in the ability to manage impulses and/or respond to extraneous stimuli in a productive manner. Problem-solving, planning, and organization declines with damage to the frontal lobe. Personality shapes in response to frontal lobe function, making personality disorders such as Borderline Personality Disorder or Antisocial Personality Disorder more prevalent in those suffering brain damage from disease, trauma and most often, both. Multiple Sclerosis, Parkinson’s Disease, Vascular Dementia, and brain tumors are a notable few causes of frontal lobe damage as a result of neurodegenerative processes.
Feeling the frustration from the difficulties I experienced while undergoing these different tests exhausted me into a haze for more than a week after testing day. Even before my career ending injury, I began noticing mental delays and poor decision making when under stress in myself. As those stress levels peak and trough throughout life to extreme degrees, each swell serves to chip away at the stability of my faculties a little more. Now at the precipice of my decline, I feel fortunate to still possess cognition knowing I need the changes defined and documented in my records for future comparison.
[Gif description: clip from the movie Girl Interrupted. Susana played by Wynonna Ryder is sitting in her doctor’s office on a chair in front of large white framed windows. Susana is wearing a black and white striped shirt with black pants. Her hair is dark and very short. She is smoking and ashing the cigarette in a glass ashtray on the table next to her seat. The doctor is seen from a third wall view from behind. The text reads: Doctor-Explain it to me. Susanna- Explain what? Explain to a doctor that the laws of physics can be suspended?]
There were quite a few more aspects of the testing I cannot recall due to my poor memory. The table below lists several testing modules included.
The last activity for my big day of neuropsychological testing was a personality assessment comprised of 350 questions rated on a sliding multiple choice scale from “very much like me” to “not like me at all.” These questions surrounded more emotional and mood related connections as well as assessing for antisocial personality characteristics, suicidality. hallucinations and delusions.
I was familiar with the testing as it was common to see it ordered during my stint as a psychiatric nurse. I was as authentic as possible while answering the questions. My doctor gave me the choice to complete the personality testing portion or not, stating my exhaustion from the day was obvious and those results wouldn’t play into my overall results a large amount. Still, I wanted as much data as possible for my doctors and caretakers to have a clear picture of the challenges I face on a daily, minute-to-minute basis so I plundered through the assessment fighting off the urge to rest my head on the desk.
To Be Continued…
While no results were revealed the day of my testing, my doc danced around possibilities of completing the puzzle considering my trauma, history of mental illness, poor tolerance to stress, social disinterest with ineptitude, and numerous sensory/perceptive difficulties.
Just like the first appointment, the doctor used functional label terminology, stating I present with “high functioning Asperger’s type of ASD.” Considering such terminology is largely unhelpful, inaccurate, and harmful when describing the grand spectrum now known as Autism Spectrum Disorder, this reference makes me feel overwhelming alarm as opposed to validation. Using functional labels damages society’s approach to Autism, implying only those who function within certain societal expectations for leading a meaningful life may be considered functional aka valuable to society.
Please check out Functional Labels 101 by Feminist Aspie for accurate descriptions on why functional labels pose threats to the wellbeing of everyone along the spectrum. In my case, this statement indicated my practitioner was not updated and aware of the issues those who are #ActuallyAutistic face.
When I started this journey to diagnosis, I knew pursuing a suspected Autism Spectrum Diagnosis was likely to meet with controversy. Few local doctors understand the extent to which the spectrum now spans since the updates to the DSM in 2016. Sadly, regards to Autism in media and not-so-helpful awareness organizations perpetuate a stereotype, creating complex problems for those of us conditioned to put on a neurotypical mask. Awareness campaigns strive to redirect this misinformed characterization but ignorance still pervades.
#ACTUALLYAUTISTIC, A HASHTAG COMMUNITY ORIGINATING ON TUMBLR INTENDS ON BEING A SAFE SPACE FOR THOSE WHO ARE ACTUALLY AUTISTIC TO SHARE RELEVANT POSTS ABOUT AUTISM WITHOUT BEING EXPOSED TO DISTURBING ABLEISM AND MISINFORMATION REGARDING THIS NEURODEGENERATIVE PROCESS.
Hearing my neuropsychiatrist say “high functioning” brought on a momentary instance of panic into my mind sphere. All the horror stories of people with Autism Spectrum Disorder abused and belittled for non-conforming behavior crowded my thoughts. My nervous system surged begging me to react and debate this term but then my anxiety and neurotypical conditioning to behave got in the way.
Please check out #RedInstead for more information regarding the difference between organizations that stand up for the rights of people with Autism versus organizations that promote harmful dogmas damaging to the quality of life for ASD population.
The day was exhausting. I can’t be sure how many days it took to recover but I know it was almost two weeks before my mental and physical faculties regenerated from the energy expenditure. I barely get through interactions with those I love without crapping out let alone people I share no emotional attachments with. The doctor recognized I was exhausted by the day and trip so my follow-up appointment for the results was scheduled for over the phone in a month from my testing date.
The pressure I feel with my cognitive abilities slipping away like dandelion fluffs in the wind while a myriad of effects disrupt my flow lessened once the testing finished. The relief knowing an objective measurement of the decline I am experiencing was established refreshes my spirit for the rest of the journey. While it is a disheartening tale regarding loss of function, my hope is other Spoonies will read about my experience and also seek out neuropsychological testing to better define the impact of chronic illness on the mind’s ability to reason and function accordingly. Next stop: The Results. Thanks for reading!
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We’ve danced this exhausting dance too many times before. There is no use beating around the bush, we both know these overreactions don’t help.
Yes, there are things I want you to attend to but please do not set off alarm systems for every petty variation in my experience!
It’s exhausting and I want it to
STOP, STOP, STOP!
Disclaimer: I received this product free for honest review as a part of my membership with Chronic Illness Bloggers Network. Although this product was a gift, all opinions are my own and in no way influenced by the compensation of this product. See the Disclosures for more information.
The Gupta Programme is an intensive therapy used to retrain the brain’s responses to physical symptoms from a state of panic to a conscious state of mindful wellness. The creator of this therapy is Ashok Gupta, self-proclaimed “former” victim of Chronic Fatigue Syndrome/Myalgic Encephalitis. After falling ill ten years ago at the hands of CFS he was able to reverse his symptoms after three years of illness. Ashok details an intensive fifteen years of research and personal experience resulting in the fruition of Amygdala Retraining method, the core action of the program’s principles.
The Gupta Programme is designed for those living with CFS/ME, Fibromyalgia, Multiple Chemical Sensitivities, Chronic Pain conditions and Anxiety. According to the retraining’s philosophies, over-reactive conditioning over time causes maladaptive changes to our alert systems, placing our neurology in a constant state of fight or flight. In Gupta’s evidenced-based theory, reconditioning the Amygdala’s emotional reaction to physical symptoms will decrease time spent in hyper alert states; Thereby, calming the body’s defenses to non-life threatening stimuli and allowing for healing.
For my demo of The Gupta Programme, I wanted relief of anxiety; However, I hoped for help with managing symptoms of chronic fatigue, chronic pain, chemical sensitivities, and POTS. While there is a definite physiological foundation to all these issues, two things are for certain: my system tends to run in overdrive regardless of the situation and this only exacerbates all of my symptoms further. Finding a method to control the overdrive reactions is essential to managing Chronic Illness Life with Ehlers-Danlos Syndrome. This intensive program is an exceptional way to install “mind over matter” routines in defense from the symptom assault cycle common to chronic illnesses. What you get with The Gupta Programme is formalized guidance on applying regular meditation practices and techniques akin to cognitive behavioral therapy. The different methods presented help manage “symptom thoughts” in a more productive manner from a neuropsychologicalperspective.
The Gupta Programme Website lists the DVD Programme with three months of personal group coaching by Ashok for $250 USD including the following features:
Full DVD Home Study Course sent on purchase
I received a full workbook with all DVD materials in printed form along with worksheets and motivational wall hangings.
12 Weekly Webinars in a group and access to Recordings
You can catch up on recordings of current Coaching series, or join the next one
Gupta recently employed the use of Facebook Groups and Facebook Live to the program to increase the community feel using the program and for more accessibility to all who take on this intensive response retraining protocol.
On the Gupta Programme’s Youtube Channel is a detailed explanation of Ashok’s experience with CFS/ME, Fibromyagilia and Multiple Chemical Sensitivities embedded below for a free preview of what to expect with the program.
I found The Meaning of Life Experiment Videoson Youtube a few years ago. This series explains the mindfulness perspective of consciousness. I embrace consciousness development, anything involving self-improvement and the goal of peaceful harmony with the universe. Gupta did a wonderful job presenting on these topics with this series of videos to accompany The Meaning of Life App available on the Google Play Store here or on Itunes here. The Meaning of Life Youtube channel is updated regularly with new content aired on the Gupta Program Facebook Live Series. This program is religion neutral and can be combined with any spiritual practice as needed.
The Amygdala Retraining Technique is a relatively simple cognitive action done over and over to recondition an injured Limbic System into moving from a state of panic to one of mindful wellness.
The technique is easily applied to any chronic illness concerning cognitive neurology with event processing. Utilizing these methods reduces time spent in hyperdrive on a neurological level, soothing the assault on the body from an “all systems go” level.
Gupta implores program attendees to put away any preconceptions and resistance to the program for a six month period while instituting the practice into a conditioned response. During the webinars, he frequently reminded my group not get hung up on timeframes for “getting better.” He recommended taking a year to work diligently on these methods for the best results. Above all, Gupta reminded us often there is no pressure in this space to rush into wellness. The supports employed by the three-month program provides a grand cornucopia of tools for a lifetime of healing so no need to feel pressure while completing the program at your own pace.
From the beginning of my more serious health problems, recommendations to reduce anxiety and stress levels resounded long before symptom management or even diagnosis. For awhile, I thought they might be right. Many years of antidepressants and antianxiety medications left me feeling like a zombie until finally, I quit them all. It was only then I realized these medications weren’t right for me, a fact proven recently with genetic testing revealing issues with drug metabolism of SSNRIs, SSRIs, and certain benzodiazepines. No wonder I felt so horrible during those years!
From a rather young age, I remember being excitable. I over-reacted to life by nature whether it be with joy, sadness, fear or trepidation. I didn’t know how to behave unless I went over the top with the reaction I thought most appropriate. As an adult, I constantly struggled with knowing how to react as within a few years of adulting I realized my reactions were viewed as odd. Add in a lifetime movie dose of traumas and there’s the perfect recipe for How to Make a Chronic Illness Worse with Anxiety.
Despite my illnesses, I am all about health and wellness activities. I’ve used meditation for many, many years in various forms. Before I hit my big injury in 2015, I sported a cool hour Yoga and Pranayama practice daily. I even continued a modified practice until I could no longer stand due to POTS and now, the practice is further tailored to accommodate the significant decline in my malady over these last few years. Over my lifetime, between flares of illness and periods of wellness, I was active in life and work. I took my health struggles like the waves you jump through to get further out into the ocean, intuitively knowing I absolutely must try harder if I were ever going to get past the backpedaling of the curls. I did not account for the undertow at work in my genetics, getting stronger with each inapplicable assault of adrenaline coursing through my body. I didn’t see the predisposition to injury and lasting debility until it fell upon me with harsh consequence. The peaks and troughs of my illnesses continue but through it all, I learned no one method is adequate in managing life with chronic illness.
Employing The Gupta Programme helped me reintroduce healing practices into my life, making my anxiety work for me instead of against me. When I gain adept knowledge, I recall the information much like a supercomputer processor, taking all the little bits of data received and then translating it into the highest probability based on my knowledge base. While this ability is an enormous benefit while advocating for myself using my previous nursing experience, the same practice works to unnerve me with all the possibilities flying up into my conscious thought haphazardly causing undue stress on my body and mind. It is for all these reasons my participation in the program helped me regain some control in life by retraining my thoughts towards ideas of wellness rather than impressions focused specifically on my debility.
For me, The Gupta Programme was the boost I needed to get back to employing more dedicated and mindful meditation practices.
Yes, I still have symptoms. What changed is I use the techniques from The Gupta Programme to help me stay calm when my symptoms flare rather than letting my anxiety in on the chaos to make things worse. This physiological cascade of anxiety in the long term spectrum results in further damage. Using Gupta’s techniques, I manage my reactions to symptoms through a conscious effort, repetitively employed and eventually integrated as a habit on my sub-conscious level. This retraining reframed how I view my illnesses and exacerbations of symptoms into a more productive perspective. My mind can now take breaks from the constant symptom chatter so I may refocus on crucial pursuits like spending quality time with my loved ones, meditation, creating and writing.
Simply said, employing this program provided the mental reset I so badly needed since my health went downhill again.
It is important to address any behavior modification plan with your pertinent healthcare providers. I presented The Gupta Programme to my therapist and nonsurgical orthopedic doctor, ensuring this program would be okay for me to employ. Both agreed it was a good route for me to take in managing my disease processes. Ehlers-Danlos Syndrome is a lifelong, incurable diagnosis with countless surging consequences throughout the entire body. My vitality is sensitive to stress levels. Quelling the inner storm of fear when aspects of my illness take over is essential to survival.
In honest review, The Gupta Programme is an excellent resource for those dealing with any chronic illness worsened by states of anxiety. The theories behind the retraining are substantial when understanding the physiological mechanisms set forth by the body in reaction to stressors. There’s no denying the benefits the retraining offered in managing my anxiety with greater success, especially when it comes to my body flaring out of control from problems related to EDS and POTS. By the end of the 3-month program, I could better recognize when my worries were getting the best of me and stop the process. I am not cured but I definitely got some recovery. Gupta’s methods, effectively applied, decreases the stress response and improves quality of life from an important, often neglected viewpoint of the mind-body connection. Although the program is over, effects of the retraining remain.The Gupta Programme is the perfect adjunctive therapy for regaining control of life lost to illness.
Thanks for reading my review of The Gupta Protocol for Anxiety!
My goal is to provide valuableinformation thru chronic illness product reviews whilst intertwining the account of my EDS history and diagnosis. My hope is my work will serve as a beacon to the undiagnosed Zebras looking for examples of Zebra life as well as providing the chronic illness community with real erudition on the innumerable goods marketed to those enduring disease and debility. While an EDS diagnosis doesn’t include a cure, employing multiple strategies improves quality of life, invariably improving the overall prognosis of this insidious process. My mission at Only in this Head is providing sincere product reviews the chronic illness community can trust ❤
Health Care Induced PTSD is an incidence those with chronic illness all too often encounter on the road to diagnosis and even after diagnosis is established.
Some health care providers jump straight to conclusions with damaging biased judgments against us before we even state the whole spectrum of issues.
We go through gas lighting and medical neglect when the routine battery of lab tests doesn’t show the problem.
Diagnoses like depression, anxiety and somatoform disorders threaten detraction from the true malfunction. This puts us in unsafe waters in the sea of healthcare providers one encounters when chronically ill.
My own experiences with gas lighting tactics from healthcare is extensive. After the Ehlers-Danlos Syndrome and POTS diagnoses became obvious, there was a gauntlet to endure in order to finally recieve my official diagnoses. Not to forget about the twenty-some years of trying to get help from the medical system. It actually baffled me at times because I did not understand what it was about me that made these practitioners question the validity of my claims.
I was a hard-worker when I was able to work. I took all the steps to get control of my lifestyle factors and then some. There were times I was in impeccable superficial health. Unfortunately, this seemed to work against me when my system suddenly seized up and through me into painful crisis. All too often I was treated improperly or even poorly because my local doctors did not know what was wrong with me but there egos were too big to just admit they no interest in trying to find out my underlying problem. I was labeled, demeaned at times, and as in effect I avoided the doctors as much as possible for longer than I should’ve in consideration to the issues now uncovered with the VEDS diagnosis.
After my sudden, acute kidney failure which was likely brought on by my undiagnosed POTS, I went to my doctor’s office for my follow-up. I still felt horrible and the medicine prescribed in the hospital gave me the worst headaches. I expressed to the practitioner how I was still not doing well at all and requested help in filing for short-term temporary disability until we could figure out what was going on and get me better, again.
The practitioner looked me dead in the face and said she would not “risk her license” to help me with the request.
I was shocked. Never did I ever feel judged so wrongfully without rational reason as I did in that moment.
At this point, my medical history was packed full of numerous medical crisis and eventful hospitalizations except for the prior two years. During that time, I avoided health care all together after yet another three week hospital admission leaving more questions than answers. That admission changed how I express and deal with the daily, often constant stomach pain so to the point I choose pain untreated rather than be accused factitious for my pain poorly managed.
I made diet changes and took on dedicated Yoga/Meditation practice. I hit the wellness forums online hard for suggestions in managing all my whack-a-mole symptoms. This made no difference to the practitioner as if I’d been a “problem patient” all along.
I could barely stand without the severe pain in my head from the medicine. I was 34-years-old going into kidney failure for no good known reason. Suddenly, all my gastrointestinal issues returned, my face was broken out in some kind of Lupus-like rash and I felt awful. Everything hurt inside and out. The medication prescribed on discharge was to help my chest pain but it was impossible to do anything around the headaches! This was after being functionable by all appearance beforehand. I just woke up one day with palpitations and shortness of breath that turned into severe chest pain and carpopedal spasms by the time I finished work! I wasn’t trying to slide a sly one past this judgemental practitioner. I just needed help.
My cardiology follow up showed “unusual orthostatic issues and tachycardia” with the recommendation for my primary to order a rheumatological consult. She blew this recommendation off with a flippant “We are not sending you to rheumatology with a negative ANA.” Even though all this information was present and correlated with documentation, I was treated as though I were drug seeking party-sized prescriptions of narcotics for recreational use rather than answers for my unusual health crises.
My shock led me replying to this brash retort with “I understand why you would feel that way.” I hung my head as if I did wrong and should show shame. I don’t even remember the rest of the appointment. I left choking in tears as I slowly processed what just happened. Once I got home, I proverbially kicked myself multiple times for not putting this awful practitioner in their place. It was here when I gave up on the medical system and treated myself. I was jaded.
I quit the medication and never went back to that practitioner’s office. I managed okay with peaks and troughs over the next three years until an injury set off the most debilitating decline as yet in my years of illness.
The decline led to my diagnosis, so for that I am grateful but there is no excuse for the traumas inflicted upon my psyche by the medical system, a system I was employed in, just because my practitioners were not knowledgeable enough to see the whole picture. I went on with life slowly working my way back up to a fairly functionable level until my insidious EDS struck again. This time, I haven’t returned to any level of previous functioning and should not expect to as these things started breaking down long ago.
Progressively debilitating chronic disease is nearly impossible to reverse once the damage is done. I feel anger when my mind drifts back to this example of trauma. The darker side of me wishes this practitioner would one day experience the pain of being regarded as feigning when being sincere and in need of help. I don’t really want for this but the thought comes up nonetheless.
The experience shook me into an obstinate state of denial. From that time until my injury certain red flags in my health shot off but I ignored it telling myself all the pain and other more distressing symptoms were a figment of my overactive imagination. This dangerous delusion led to my thinking it would be okay to go back to floor nursing after getting out of that game four years prior due to shoulder injuries from patient care. Interestingly, it took a work injury I could not recover from for doctor’s to final recognize there was something more global at work in my cases beyond all my flares of “idiopathic” illness.
This is one small, short story to stand out as an example of the multiple instances of negligent medical care I endured throughout the years and at times even unto now. This story is mine but this stagnant behavior on behalf of the medical community is not uncommon in the countless stories found across the chronic illness blogs of the world.
I’ve followed Rosie’s story for a couple years now when I began investigating the similarities between myself and what is now called Autism Spectrum Disorder. Rosie’s awareness videos and (affiliate link, see disclosures) her books (click to view and/or purchase) were a huge help in validating my experiences as a person under the radar but on the spectrum. It was only by chance she was a Zebra as well but good luck! I enjoy Rosie’s artistic works and activism efforts through sharing her journey, showing bravery in speaking out against the barriers to care she experiences.
Because of the difficulties getting appropriate care, Rose is at times afraid to use the emergency room for fear of being misunderstood despite dangerous symptoms and a declining condition. Her body is in failure mode and no one has any answers except pointing at the anxiety created by health care induced trauma. Family and friends are helping her promote a crowdfunded a trip to the USA to seek a more competent care. She has two children and a hubs who love and need dearly. The whole family is scared for Rosie’s wellbeing because of lack of EDS and POTS awareness.
Health Care Induced PTSD creates barriers to care, lined with sharp knives to cut those who need help the most but do not have the strength to withstand the pain, panic and isolation caused by practitioners who haphazardly wield a biased battleaxe of non-specific diagnoses instead of completing due diligence to help suffering patients.
If you are suffering because of Health Care Induced PTSD, you are not alone. Unfortunately, this is more common than not but if we all band together and keep sharing our stories eventually we will bust through the ignorant paradigms! I’d love to learn about other people’s experiences with this dangerous, negligent practice so please comment below or email me at DawnMeeks80@gmail.com to speak privately. Please subscribe here to get updates to this blog delivered straight to your inbox!
The neuropsychologist looked at me with all the typical body language indicating sympathy and said (paraphrased):
“Everyone one has a plate in life.
Your plate is overflowing.
As your plate’s contents grew,
some things fell off.
We will look at those things.”
It took me roughly 24 hours to process what exactly this meant. I tried to figure out the technicals around all the angles but only after around 16 hours of intermittent sleep could I clearly see this means I may finally get validation for a life of neurodivergence.
Neurodivergence is a newish concept I’m researching for better understanding and implementation into my theory of life. Per Wikipedia:
The term Neurodivergence describes those of us who do not think like the majority aka neurotypicals. Initially, I was shocked everyone doesn’t think like me. I realize we all have individual thought process influenced by the grand variety of factors life offers but it never occurred to me the reason I felt so outlander like was because my perception of reality is far different from the neurotypical version.
As I leaned more on the online disability community for support with my new diagnosis of Ehlers-Danlos Syndrome and POTS, I saw myself in countless reblogs, tweets, and status updates from the Neurodivergent community.
I saw myself in a new, more holistic perspective free from the shroud of mystery and internal debate theming my existence. It’s taken thirty-six years to unravel this mystery. I am thankful to unite with my answers through the EDS and other medical diagnosis but this last piece of the puzzle is equally important to improving the quality of my chronic illness life.
I got a comfortable vibe from the doc and within a few minutes of conversing I felt my mask slip away and everything underneath, the real me, began to ooze out from underneath.
For once, I didn’t mind letting go of the disguise and I let each of my statements hang out with all authenticity and weirdness without fear of judgment. After all these years of avoiding this avenue of my care, I knew it was in my best interest to force my authenticity forward. This is a rare occurrence for me at doctor’s appointments. Even with my psychologist providing Cognitive Behavioral Therapy, I find myself guarded. It is a weird ego thing I only recently became aware of but now I see how my experience as a registered nurse creates a situation in which I have trouble putting away my nursing persona so my practitioners can’t see me, the patient. My nursing persona is how I managed the mildly successful, eight short years in the career field without [completely] blowing my cover.
When I twenty-something gamer I loved playing the PlayStation game called Persona.
It was an RPG, classic-style game in which a high-school and town is taken over by evil forces and these fashionable students band together to banish the evil from whence it came.
The students morphed into different personas, some being much greater and more fantastic than their regular selves. These alter egos allowed for super cool battle attacks or mass healings during fights plus the looked amazing. It was one of my favorite games, probably because it represented how I am not quite myself around others because over the years I’ve adapted to my stress with socialization by creating the personalities to fit the situation. It’s like being an actor except way less cool and glamorous. It is an exhaustive feat and only now do I realize how damaging it is to hide myself wherever I go for fear of people who don’t understand.
Preoccupied about minding my non-verbals and responding appropriately, every social interaction becomes a performance I must overcome.
Any time I need to be someone or something other than the who and the what I am, an appropriate persona takes over automatically based on my study of the role, fictional characters in books or videos in similar situations and close inspection of the other’s behaviors and reactions so as to modeled my behavior accordingly and hopefully avoid social ruin. This worked most of the time but there were times when I was physically sick and everything interpersonally spiraled out of control. I am not disingenuous, only lacking in an understanding of what normal is, exactly.
Finally, I came to terms with a life of disassociation during 2015 and 2016.
Unfortunately, my body now recognizes every social instance as a potential fight or flight situation. For me, social nuances, boundaries, and analysis of situations realistically is my greatest challenge. I get lost in the interpretation of all the unsaid rules innate to most but not for me.
This article contains a couple Amazon affiliate links for books recommended. Using these links to purchase on Amazon earn me a small commission.
Over the years, I cultivated a mask for almost every situation. I forgot who the real me was hiding beneath all the masks piled atop to deal with the world. Only after my total disability in 2015 did I discover what the masks were all about. In my own case, as I delved into understanding every facet of EDS, the possibility of Autism Spectrum Disorder became exceedingly clear. All my life, that thing separating me from them, finds appropriate validation with an ASD diagnosis. It makes the things my longstanding depression, anxiety, and PTSD never explained make perfect sense!
I readEveryday Asperger’s by Samantha Craft and Rose Whitson-Guedes account The Misunderstood: A Theoretical Profile of the Hidden Savant. It was like my diary was a stream of consciousness to inspire the authors. Each new autobiographical book from Autistic Writers struck a chord deep in my awkward soul and I finally felt I found the “missing piece.” For many years, the pages of my numerous diaries spoke to my constant sense of not belonging. I felt like a loner and a nomad from day one.
Armed with a better understanding, all the things I learned to bury deep beneath the surface for fear of judgment and ostracizing are now laid at for all to see, even myself. I don’t feel embarrassed by these discoveries, only validated for all the confusing moments of my life. As my neuropsychologist asked me questions and I responded in my usual tangential way, I could see my symptom checklists virtually added up as silently equated estimations of my chief difficulties.
Soon after the questions started, he pulled out an ASD criteria sheet to go over with me regarding my symptoms.
Hubs was there and gave valuable input especially when I got lost in my own details, unable to explain my point or find my way back to answering the question. The Neuropsychologist appreciated the additional input. By the end of the session, the doctor said he doesn’t think there will be any problem getting my insurance to approve my testing. To paraphrase the unofficial ruling was probably Aspergers if it were still a diagnosis but not severe autism… even if it is severe autism you are probably high-functioning on the spectrum still.
Now we wait for a testing date.
A neuropsychological evaluation on my symptoms needed to come several years ago when the neurological portion began getting worse but for some reason, I never seemed capable of coordinating my care enough to get this important assessment until Fall 2017. After all the struggles, all it took was a call to a Neuropsychological Group that accepted my insurance and I got an evaluation appointment scheduled about three months later.
This is a big event for me. I want to illuminate my ASD diagnosis to make it easier for my daughters and son to also get an evaluation. All my kids are obviously on the spectrum. My daughters are adults now but motivated to get diagnosed soon after we move because of vocational and social issues but my son is still young and I am unable to get his dad to agree to the evaluation. He holds to the mentality “There’s nothing wrong with my boy!” It a frustrating, useless, and damaging stance to take while my son is expressing difficulties in school as illustrated by his grades. He would do so much better with an individualized education plan in place.
My other expectation for getting the testing done is so my medical doctors will better understand my experience with physical pain and distressing symptoms. All my life, I’ve met with quizzical looks when describing my physical sensations. I remember when I became aware of this fact during my second pregnancy. I called my midwife almost daily with all my symptom reports. Things like”it feels like someone is jamming a knife in my cervix” to “It feels like my intestines are swelling up” and so on makes it easy to see my sensory experience of pain is different than others. During my second major hospitalization my GI doc told me I suffer from “hyperalgesia” in which I feel visceral pains where “normal” people do not.
To better illustrate my case, I prepared a portable USB drive with all pertinent information including childhood pictures, writing samples and all my medical and psychiatric history.
(Click a picture to open the slideshow!)
The doctor expressed gratitude for my preparation saying it was helpful I was so organized. My thoughts played loudly in my head: If only you knew… In former years, my preparation for this type of an appointment would’ve been pristinely organized with more than enough, if not too much information, along with obtaining copies of all my recent tests and providing a portfolio of all my medical history. Even so, being somewhat prepared was more helpful than not for presenting a clear picture of my case.
What I find most interesting in researching the incidence of ASD with EDS, I’m hard pressed to find anEDSers without ASD features. Conversely, I’ve yet to find someone with ASD who doesn’t fit the EDS picture. Part of my mission here at Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome is adding my experience to the growing body of evidence correlating EDS and ASD as cohort diagnoses.
Illuminating this connection in my own case explains much of my life with an undeniable validity. I share my journey in hopes of shedding light on the topic from a real life perspective for others facing similar circumstances. While #SelfDiagnosisisValid, getting my ASD diagnosis verified to bring clarity to not only my experience but other people’s experience of me and others like me feels like an important part of my journey. Thanks for taking the time to be a part of my neuropsychological path in my advocating for my best interest in healthcare! I’ll be updating as I get more information. Please subscribe here for updates to this unfolding story and other Chronic Illness Life with Ehlers-Danlos Syndrome related content!
The year twenty-sixteen is coming to a close and I cannot believe how much has changed since this time last year!
Chronic Illness Life with Ehlers-Danlos Syndrome peaks and troughs constantly, often without warning. Since getting my official diagnosis, research on how to best manage my FINALLY named disease helps and I’m adjusting as more things are managed and monitored. Life is SUPER busy right now with lots of changes on the horizon so I wanted to take a moment to update before things get MEGA busy as the upcoming changes go into action.
“Life is a series of natural and spontaneous changes. Don’t resist them; that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like.”
― Lao Tzu
We are buying a house! Even though I still spend 99% of my free time sedentary, being the most internet savvy in the house led to many hours of searching real-estate listings over the last 6 months since we set our goal on becoming homeowners. I took on the task to the same obsessive degree I take on any project but it finally paid off and we should close on the house by the end of December!
What made this such a difficult task is the size home we needed to accommodate our large family. Currently, we are living in a 3 bedroom house with 5 adults, 1 child, 3 kitty cats and 2 pups. While everyone has privacy, there is little space to spread out and live. The stress of the close quarters is compounded since February 2016 when I became a full-time wheelchair user. Getting around the house became challenging with narrow doorways and halls making maneuvering no easy task. In addition to this consideration, I needed to choose houses appropriate for my mother-in-law who is also disabled with multiple chronic illnesses.
We wanted something big enough to so my mother-in-law can have her own living space and so could we but we would all still be under the same roof. Since the initial event fueling my total disability, we’ve taken to communal living to share the weight of the rising cost of living. The first round was with friends in an effort to eventually move to the great state of Colorado. That didn’t work out. We ended up seeing these friends off and moving my ma-in-law in to share housing costs. Splitting the housing expenses made a big difference for all of us. It is a win/win situation we are taking to the next level by finding a house to suit all our needs to buy rather than rent. The new house will have three living rooms giving everyone a space besides their bedrooms to leisure and commune.
The only thing needed before we can move in is the installation of a wheelchair lift from the first to second floor.
Luckily, my mother-in-law is awarded home modifications as a part of her service in the military so the cost is covered as is the installation. The neighborhood is small and beautiful with a lake nearby. There is a wheelchair accessible walking path through the whole town. We will have a little less than an acre of land so the dogs will be able to enjoy a nice big backyard and the kids are already planning on putting in a garden. The new house is a little over an hour away from my family but not so far it will be very difficult to transverse the distance.
The most exciting thing about the move is I will be able to go to Cleveland Clinic and hopefully get better management for my case of Vascular Ehlers-Danlos, POTS, and some other concerning health issues popping up over these last few years.
While I recognize my treatment options are limited, the level of knowledge regarding these diagnoses is sadly lacking at WVU, save to say a few specialists who actually understand these rarely diagnosed problems. The severity of implications, along with the accepted protocol for monitoring Vascular Ehlers-Danlos Syndrome patients left neglected increases the risk for mortality. My hope is Cleveland Clinic will help better manage my POTS and investigate the possibility of a Chiari Malformation. Another strong point about our move to Ohio is a future of better pain management since cannabis is now legal for medical with initiatives to provide for the need in the works.
Still, before moving all my healthcare over the state line, there are several more medical procedures to complete due to some concerning findings on recent testing. The result I am most nervous about is the mass the found in my pancreas as well as the bulging of the duodenal bulb. At the beginning of the year, I was diagnosed with Exocrine Pancreatic Insufficiency for which I now take enzymes before every meal to aid in my digestion of fat since my pancreas is not producing the enzymes to digest fat on its own. At the time, no doctor was able to give me a viable explanation for this finding other than I needed more follow up.
This is terrifying because my grandmother died in her early fifties as a result of pancreatic cancer the doctors said started in her thirties.
There are days when an excruciating pain under my left rib cage buckles me into submission with my disease process. My baseline indigestion is getting worse. My issues with early satiety began years ago but there are days when it takes me eight hours to get a substantial enough appetite where I can tolerate an actual meal. Suddenly, I started with really bad hiccups that bane my existence at least once daily. I really hate to complain but when each day presents debilitating challenges in this area, worse with each passing year, it is beyond my ability to completely disconnect from the physical experience any longer.
All the years of damage compounded heavily against my nervous system caused my nerve endings to fry out like an overloaded motherboard. The effects extend from head to toe, with my flight or fight response being the most severely affected after my associated dysautonomic GI complications. The hyperalertness of my nervous system is exhausting me in light of this most recent scare. Fortunately, I have the best support system a Spoonie cold ask for as I travel this tale in life and I am managing quality despite the increase in these suspicious findings.
These are all things I remember from my grandma’s battle with cancer so many decades ago. The “Big C” runs thick in my family so each cancer scare from my health causes my anxiety to spike to painful levels while waiting on the results. Still, I wonder how many cancer scares one person can have before it’s actually cancer. I get a cancer scare every few years since beginning adulthood. To avoid the massive weight of my own mind, I focus on creating, my interests and anything to make myself believe this stuff is no big deal. Still, after getting my raw genetic data analysis and looking round at my risks it feels like it is only a matter of time before the game of hide and seek ends.
To distract myself from the over activity of my mind, painting and other forms of artistic expression are now my outlet and passion. I love painting because it slows down my thought processes and allows me to separate from the bridge of life as I step into a serene mindfulness state of mind. I have several pieces nearing completion and so many ideas to come as time and health allows. My hope is to stock an online gallery of my work over at Stomach-vs-Heart: The Art of Survival. Art is my most favorite therapy for my mind and body when other tactics are no longer feasible.
I used to take nature walks and drive to shake off stress but since getting out of bed became a three-hour ordeal and West Virginia is lacks in wheelchair accessible nature trails, my coping strategies began changing by necessity. Driving is out due to vision loss, sensory disturbances, limited range of motion in my neck along with numbness and tingling in my extremities. Of course there are many days I am too ill to even sit up in bed let alone venture out into the world.
My adapted coping techniques focus on activities to enrich my soul without exhausting my mind and body. Usually, I keep afloat the tides of chronic disease by employing art as a means to transmute my suffering into something greater. The way art works, quieting my never ending neural dialogue stream and frazzled neurons, distracts my attention from the woes of chronic illness life in a way no medication, supplement or salve could ever achieve.
I soon start another round of modulated physical therapy for my neck pain. While I do well to keep up with my physical therapy exercises at home, the benefit of the more therapeutic component of physical therapy is something I’ve need for awhile. My neck and upper back, as well as lower back and hips, cause issues if not from swelling and dislocating, it is a burning nerve pain gnawing away at my energy and mood. An incidental finding on my cardiac MRI indicated I have a spinal hemangioma on my lumber spine. This may be the cause of many of my pain issues in my back as well as the sudden issues with urine retention which may result in my having to self-catheterize to prevent complications. I have a CT scan at the end of this month to see what else is going on in there from a focused perspective. This is long awaited as my back feels as though it is crumbling beneath me and these problems began plaguing me at as early as fourteen years old.
Just another reminder of my ancestors as I recollect tales of my grandmother needing several bladder surgeries as well as a first cousin on the same side. When I look at my genetic data obtained for free through a wonderful program called Genes for Good, I see why my former physician always said “Next time you decide to be born, choose better parents.” No offense to my parents or any of my family but our genetics are a big bucket of mutated function and high susceptibility to disease. I think of my life traumas in relation to my shoddy genetics and no wonder my life’s challenging. All branches of my family tree harbor the decay of illness and the rot of cancer and this makes sense against the instability of health.
Last week my uncle died after a battle with cancer he won but later developed complications of some other processes ongoing in his body. I imagine some of these processes are EDS related. It makes me shudder to think of all the pain he went through, unrequited over the years. He was in his late fifties, struggled with severe back pain due to degeneration the last few decades of his life and his cancer started likely ten year before diagnosis. He struggled with quite a few health problems. He was an impeccable nurse and talented singer who I could talk to about anything and everything.
My uncle was the first of my mother’s siblings to pass away and the only immediate family member death on my mom’s side since my grandfather died in the early 2000s. I see the pain all over my mother as she re-experiences all her most painful losses through his passing along with the new wound of losing him all too soon. I behold with adoration as my mom morphs into the matriarch of my family during this trying time. She holds together the kinship just like my grandmother did when she was still living. Watching her bloom into her greatest version with titanium-like strength in the most difficult of times is an honored experience driving me forward as I hurdle my own challenges in life.
As the year winds down all these aforementioned parts of life are making 2016 a year I am glad to say goodbye to. As we prepare for the move soon after the first of the year, I am struggling not to blow my top not being able to do much to pack. I have faith in my hubs ability to get it all done but my extreme need for order and routine to moving is trying to warn me otherwise. Everyone is excited to move on with life from this town and its memories. Blogging may take a backseat as these transitions rise but my hope is to write a little about my experiences every day, whether I publish it or not. Who knows? Maybe I’ll end up publishing more content than I would otherwise in the long run!
In closing, I recall my former self, this time last year. Walking was just beginning to become impossible without aggravating my POTS to the point of passing out. Every ounce of energy I put out beyond basic functions negated two more as a penalty in this vicious process. While I considered things were going downhill, I never thought it would happen so fast. What is it all for? The question is ever present in my mind, trying to understand all these challenges involved with chronic disease and progressive disability. I feel much like Alice tumbling down the rabbit hole, unsure of where I am going and fearful I may never find the way out.
Even so, life is good. Despite the depravity of illness and untreated symptoms there are many things to smile about. I have a loving family who care for me greatly, both existentially and literally. We are moving into a beautiful home, big enough to house our love for each other. My health is a constantly changing form but now with diagnosis I feel better prepared for the path to come. As the year winds down and the countdown to the New Year begins I am happy with all the choices leading me to this place in life I call home.
Thanks so much for joining me as I recount my journey in Chronic Illness Life with Ehlers-Danlos Syndrome. Talking about the real life experiences medical zebras go through is the number one way to raise awareness about this rarely diagnosed condition but also is a great way to connect with the countless EDSers online working to shed light on this challenging, individual specific disease process widely neglected by medical communities around the world.
New to EDS? Don’t worry! I have you covered with the links below!
I am one of the cursed ones, doomed to live life with chronic, progressive musculoskeletal pain. Whether it’s my muscles, joints, bones, ligaments or tendons acting up, my diagnosis of Ehlers-Danlos Syndrome plays out painful effects throughout any one or all of these system components.
Finding a pain management strategyto improve my quality of life is an Art of Survival. Sharing what I learned through research, trial, and error is the mission of this humble website, so without further ado here is my Chronic Pain Toolkit: 5 Tools to Improve the Quality of That Chronically Painful Life™
This post contains affiliate links which I may receive a commission if these links are utilized. This is a great way to support my work at no extra cost beyond the purchase. No forms of compensation were provided by the companies for these product links and all opinions belong to the author of Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrom. Please see the Disclosures page for more detailed information.
#1 Hot and Cold Therapy
My muscles strain and sprain for no rational reason more often than not. My doctor prescribes an opioid and muscle relaxer to help, which is great except for the increased side effects and leftover pain unrelieved by prescriptions. Adding Hot/Cold therapies to my pain management toolkit helps where the scripts leave off.
I purchased this Sunbeam heating pad from Amazon a few months back to replace the one I lost. The original heating pad made it 5 years without malfunctioning, so I was confident in the brand and purchase.
One of my favorite things about this heating pad is the length and width. Laid out flat, it covers my entire back or I can wrap it around my belly when my gut is acting funky. My intermittent subluxations, dislocations, and frequent strains/sprains make this a must have on hand item for those bad days. Heat helps promote circulation, which is often impaired with injury and inflammation occurring with EDS as well as other chronic pain conditions.
Cold packs reduce harmful inflammation by slowing circulation. With musculoskeletal injuries, circulation may too quickly deliver important immunity components to the area of injury to hasten the repair process. An overzealous effort floods the area with interstitial fluids beyond the tissues capacity. The resulting damage caused by pressure to delicate structures and nerves in and around the area, thereby making the original injury even worse. Applying a cold pack immediately after an injury helps to reduce damaging inflammation.
I use these hot/cold packs by Therapearl are great because they don’t stiffen in the freezer so I can easily use it on any area without causes pain from a hard, awkward, frozen block. Using anything frozen on my body activates my cold intolerance quickly. This pack is made with a gentle, velvet fabric to keep the direct coldness off the skin. Plus, these packs are just the right size to spot treat sore areas on my back. As far as the “hot” usage goes, the heat dissipates too quickly to be effective. One even popped while heating in the microwave. I can’t recommend these for hot therapy. Nevertheless, I can’t say enough about these handy cold pack for combating my musculoskeletal pains.
I was SUPER impressed with the power of CBD lotions for my chronic pain. Right now, The Fay Farm’s Rejuvenation Lotion is my favorite pain relieving lotion, but I also am quite fond of Noxicare, an all natural pain relieving cream formulated by physicians specifically for musculoskeletal pain.
Both these products contain powerful ingredients, known to reduce inflammation, swelling and related pain without harmful side effects. Unfortunately, my chronic illness story includes a load of hypersensitivities to certain foods, additives, and chemicals. Neither of these products aggravated those issues. Anytime I begin feeling strain or swelling in my muscles and joints, applying topicals reduces my pain within 10-15 minutes. With continued and daily use, the reduced muscle tension works to improve my other symptoms. Even if this intervention only provides a fraction of relief, it is relief that cannot be achieved in any other way.
#3 Relaxation Techniques
Any practitioner equating my pain only with stress automatically loses my respect if they know my history. It feels invalidating as if being told, “You are only in pain because you fear pain.”
Why can’t they understand it is the pain stressing me out not the other way around?! Regardless, relaxation during pain flares is important for the best outcomes. With the right tools in my Chronic Pain Toolkit, it isn’t an insurmountable endeavor and helps considerably.
The relaxing intervention I use to help lull my pain into submission includes indulging my olfactory senses with essential oils. The sense of pain is much like the sense of hearing, taste smelling, sight, and feeling. It sets off processes in the body to prepare for incoming stimuli, whether it being pulling away from a painful stimulus or initiating secretion of digestive juices after smelling an appetizing meal, our olfactory senses are always sending messages about the environment to our brains so the body can be ready. At the same time, when one sense is negatively overwhelmed, adding stimulus to other senses will help divert energy from the offending sensation to respond to new incoming stimuli. This is how aromatherapy works to help reduce pain by inducing relaxation.
Essential Lavender Oil is exceptionally helpful when experiencing a pain flare. Rubbing a few drops into my hands, cupping my hands over my nose taking deep inhales and exhales transcends my soul beyond the pain of the flare. While I do not believe essential oils cure chronic illness, I believe there are therapeutic effects available to augment more conventional therapies.
Sound provides countless therapeutic effects, especially within the realms of relieving chronic pain via the use harmonic and resonant tones. Known for healing properties. my Tibetan Singing Bowl helps me focus my mind and calm the racing though often accompanying pain flares.
When I use this beautifully hand-crafted work of art by Geshe’s Dharma, those nagging realities dissipate into the abyss so I can focus on allowing the pain to pass without overtaking me. The tones this calm my mind, creating a slight vibration on my forehead between my eyes. I imagine ancient magic aiding my pain plight.
My toolkit wouldn’t be complete without luxurious and pain relieving Epsom’s Salts. My soaks in the tub with lightly scented Epsom’s salts help on days where nothing relieves the stiffness, swelling and pain. Soaking in an Epsom’s salts bath for a twenty minutes or more helps tremendously to loosen things up so my other tools will work better. I tried several different brands, but am partial to any of Dr. Teal’s Epsom Salts. My favorite is The Soothe and Sleep Lavender for I’m a little addicted to the Lavender scent.
#4 Compression Therapy
My hands cause a significant amount of arthritic pain. Eighteen years after the first utterance of arthritis, it is now widespread throughout my body throughout my whole body. Sadly, my hands look like a 105 years old.
One management strategy proving helpful is compression therapy. This works by confusing pain signals via pressure application. It also promotes circulation via the gentle vacillation the compression simulating the pumping action of the skeletal muscles.
The Vive Health Products on Amazon offer great deals on quality medical equipment. I looked hours for at compression gloves to find one well reviewed. After foraging the compression gloves section of Amazon checking options and customer reviews, I felt confident spending $15 USD on this product. This glove met my needs and looked great no matter what I wear (usually PJs!).
The Vive Arthritis Compression Gloves are quality crafted. Fashionably, the material’s stylish gray/black pattern fusion is neutral and exceedingly versatile. I feel evocative of the C-punk movement wearing these gloves! That makes me a
awesome despite my pains!!! The open-ended fingertips allow for the gloves to be worn even when I am using my tablet.
The material stretches gently, but provides light support. Breathable and moisture wicking, using these overnight tames my tendency to clutch my hands into a contracture while sleeping. Although the gloves take a few days to get accustomed to and sometimes I get a sore area on the skin between my pointer finger and thumb, this never causes further issues or takes longer than one minute to forget.
The seams are well-secured and even. The glove is sturdy to all day use and the dark color hides accidently stains until the next wash. I wash mine in the sink and hang them on the towel rack to dry. Consistently, the elastic pressure continues to provide the same support and relief as they did on the day of arrival. The material is warming, which is something very important to those of us with very cold hands (despite our warm hearts)!
The pain relief provided to my arthritic hands is significant! I love the pressure, seemingly diffusing the pain response when worn an hour or more. I can take them off an hour later to find a reduction in the swelling and a satisfactory level of pain relief to type or write for a little longer without a break. Employing these gloves will do the same for anyone experiencing pain and stiffness secondary to swelling in the hands. Compression is well known for its medical benefits in treating chronic pain and Vive compression gloves live up to the expectation!
#5 TENS unit
A TENS unit is a must have for anyone living with a chronic condition causing frequent muscular sprains, strains and tension. Over the years of dealing with progressive musculoskeletal pain, my TENS unit saved me from going to the urgent care more than once!
With my disease process, strains and sprains are a part of everyday life, but having a this TENS unit on hand makes a big difference! I can lay in bed in utter despair due to pain or lay in bed receiving relaxing, massage effect from the stimulation this little unit provides until my muscle tension dissipates. I’ll choose the latter. Amazon has loads of TENS unitsavailable for you to review here. Be sure to pick up the electrode gel and extra pads because this will be the first thing you run out of!
#6 Distraction Techniques
The other day during a haphazard scroll through Facebook a Nursing Page I follow posted the following meme the Willy Wonka meme regarding the patient’s report of pain versus the nurse’s perception of the patient’s actual pain level.
Any nurse sharing this meme should be ashamed and quit nursing. Distraction is one of the first interventions discussed in pain management courses during nursing school. Distraction is an effective, positive coping mechanism in dealing with pain levels of any intensity.
When I was in the final stages of labor with my son, I painted my nails and did my makeup all while waiting on his arrival. It was the only thing I could do to keep me from being overtaken by the painful experience. In regards to chronic illness, during every single one of my hospital admissions my laptop and cell phone served to distract me from the miserable experience of being hospitalized. If it weren’t for the countless hours of streaming media between Youtube, Amazon Prime and Netflix I would have lost my mind a long time ago living with chronic pain on a daily basis!
Distraction is a great technique for diverting attention away from the pain of an experience. Never let any nurse bully you into thinking true pain is staring blankly into space. Not only is this maladaptive but it will make pain worse! Instead, remind them of their nurse’s training with this tidbit provided and watch how quickly the attitude changes. Then, continue to use whatever distraction techniques works best for you.
As I said, one of my favorite ways to distract myself is with streaming media. I have a Youtube Red membership because advertisements, but even with a free account access to original content is never ending . With this and my Amazon Prime membership, I can always find something of value to distract me from my pain enough to make life a little more worthwhile. Prime benefits must be made for Spoonies because the extra services and perks to the membership save countless spoons!
My relationship with Amazon Prime was on and off from 2010 to 2015. Amazon makes it super easy to cancel the membership before being charged as you can initiate this action immediately after sign-up and still enjoy a full 30 days of prime membership benefits!
Since 2015 I’ve maintained our Amazon Prime membership as it offers a load of benefits beyond the 2-day free shipping saving us hundreds of dollars and loads of time. With Prime, I get access to Prime Video, Prime Music, and Kindle Unlimited all under my annual membership fee. All these services help to distract me from my pain so often that I think I would cry if we lost our membership!
The benefit far outweighs the cost when considering how much these services cost individually from other providers. My household used to pay $10 a month for a streaming music service, $20 a month on video streaming services, and at least $50 in video rentals a month. That’s $80 a month in just entertainment, which adds up to almost a thousand dollars a year!
Prime media streaming services offer a massive catalog of music, books, movies, tv series and documentaries to keep me distracted from the toils of chronic pain.
With access to thousands of Kindle books free with my Kindle unlimited add-on subscription, I am learning new things and increasing my reading speed. This is great despite my cognitive and neurological issues troubling most of my days.
If there is a TV series on premium cable I want to watch, Amazon makes it available as a series to purchase and stream or I can just add on a premium channel to my Prime video subscriptions.
Not to mention the fact that all the previously recommended products were purchased via my subscription!
Give Amazon Prime a test run free for 30 days. The offer is super transparent and canceling is no hassle under the account tab with a few clicks of the mouse. You get loads of streaming distractions that will be sure to make your nurse spend her off time making mean memes about patients instead of enjoying life!
In Conclusion of The Chronic Pain Toolkit
Successful pain management is multi-faceted and adaptive to individual needs. I put together this Chronic Pain Toolkit as a resource for those struggling to find nonpharmacological pain management to complement medically managed care. While this collection of strategies is not a substitute for medical advice or direction and is for informational purposes only, all too often practitioners fail the chronic pain community with a lack of direction provided to patients regarding non-pharmacological pain strategies. With balanced tactics against chronic pain outcomes improve and quality of life increases!
Thanks for reading! What are some ways you deal with chronic pain? What ways don’t work? I’d love to hear the contents of other Spoonie’s Chronic Pain Toolkit! Light and Love my sweet Spoonie friends! <3
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❤ Thanks for reading and may your days be blessed with peaceful calming vibes❤
My goal is to provide valuableinformation thru chronic illness product reviews whilst intertwining the account of my EDS history and diagnosis. My hope is my work will serve as a beacon to the undiagnosed Zebras looking for examples of Zebra life as well as providing diagnosed Zebras with real erudition on the innumerable goods marketed to those enduring chronic disease and debility.
While an EDS diagnosis doesn’t include a cure, employing multiple strategies improves quality of life, invariably improving the overall prognosis of this insidious process. My mission at Only in this Head is providing sincere product reviews the chronic illness community can trust❤
Ehlers-Danlos Syndrome is an inheritable, genetic disease affecting the quality of collagen in the body.
Collagen is one of the most abundant proteins within the body, making up the tissue structures of ALL body systems.
The faulty collagen produced in the body of the Medical Zebra ranges in effects from benign hypermobility to severe musculoskeletal debilitation.
The effects don’t stop with the musculoskeletal system as some EDSers experience GI issues from irritable bowel syndrome to malabsorption.
My diagnosis with EDS didn’t happen until I was 35 years old. Despite a long medical history with bizarre, acute health crisis my doctors never mentioned genetic testing. Only after diagnosing and advocating for myself did I get them to listen. After 15 years battling an invisible, “idiopathic” disease process, I finally have a name to put to my issues. Now, I can advocate for myself with the luxury of having an Official Diagnosis.
Below is the table I prepared for my genetics appointment listing the sordid details of my case. I am sharing this table as a part of my article Ehlers-Danlos Syndrome: My Experience with the Geneticist. The document was too extensive to include in the post so I am leaving it here as a resource for those questioning an Ehlers-Danlos Syndrome diagnosis.
Please remember, each Medical Zebra Tale is uniquely individualized based on a number of factors. There are people with EDS without these complex issues just as there are EDSers with even more complex histories than mine.
Please enjoy and feel free to share My Ehlers-Danlos Syndrome Medical History!
Mother reports forceps were used and I had black eyes; reports she was highly medicated for the labor and doesn’t remember much
Severe ankle sprains due to joints rolling out when walking down the steps; Behavioral & Depressive problems; Several severe infections, majority treated at home; Began to have RLS at night and severe cramping in my legs; Menses at age 9; severe PMS (all my life as well); Terrified of the dark; Difficulty reading aloud and was seen by the eye doctor who said I had a lazy brain to mouth connection; difficulty with peers; very good at gymnastics d/t flexibility; difficulty with dance
Kidney Infection; Episodes of graying of vision and dizziness; Found out it wasn’t normal to not have a BM but once a week; Pregnancy with first daughter
Gave birth to first daughter; pernicious anemia during pregnancy; uncomplicated and surprising quick delivery (<6hr) within a week of due date. during prenatal care with midwife it was noted my cervix was tilted and something was abnormal about the hinge of my tailbone; PPD, severe fatigue and back pain after pregnancy
Gave birth to second a daughter; labor was difficult; 1 month overdue with severe braxton hicks contractions daily; Possible miscarriage of twin during first month of pregnancy; Labor took over 24 hours and was very physically distressful not because of pain from labor but severe and uncontrollable restless legs syndrome; Pernicious anemia during pregnancy; PPD
Divorce.Severe episode of spontaneous vaginal bleeding. ER treated with fluids and check for immediate danger but said I would have to follow up with a doctor. I did not follow with a doctor yet at this time, nor did I have a doctor from years. Severe lower abdominal pain went to ER told it might be endometriosis; Severe ribs pains went to ER told I had arthritis throughout all my ribs; Blacked out for 12 hours during a drive back from TN went to ER and no neurological or other medical cause could be found. Severe stress at the time; 1 spontaneous abortion
Self admission to psychiatric care for 3 day stabilization for suicidal ideation; Diagnosis Major Depression and substance abuse disorder (I was drinking a lot at the time); Stopped drinking. Quit job, moved back home and started college
Primary care initiated when I got pregnant with my son. Pregnancy was uncomplicated besides increased fatigue, depression, severe back pain at times, tearing of the muscles in my upper thighs and even more deep stretch marks; Delivery was uncomplicated and only 4 hours long. I progressed much faster than my doctor thought I would based on my effacement when arriving; My son was healthy at birth although as a baby he would sweat really badly when I was nursing him and he also broke out in a lot of rashes and had a lot of constipation; PPD; Began to have distress from constipation and heart palpitations, got shin splints from normal activity; more fatigue; more joint pain
Cont issues and finally saw doctor; Cariology did a stress test (negative) and a holter (highest 145, lowest 44, occasional PACs and PVCs) Put on Zoloft and Inderal, treated for GERD; Had a bad reaction to Zoloft; Went to new PCP
Cont issues worsening in severity; Weight loss, nausea and vomiting as well as severe stomach pains with meals, at random and with bowel movement; IgE testing revealed a very high level of IgE mediated immunity and calcoprotein; very high levels of serotonin in urine; diagnosed with diabetes insipidus and HTN & leaky gut syndrome; Slight Scoliosis; Received physical therapy & chiropractic work for back pain and spurring & reversal of the cervical spine shown on xray; MRI was normal for pituitary tumor; Barium studies showed GERD and slightly delayed motility. Delayed hypersensitivity reactions to foods showed multiple food allergies; severe depression and PTSD reaction diagnosed in therapy after my second divorce in 2008. Multiple ER trips for gastrointestinal distress and false heart attacks. Abnormal pap smear
3 week inpatient hospitalization at for ERCP-induced pancreatitis with pseudocyst formation; ct scans showed my left lower lung was collapsed at this time and a cyst in my lungs (I just remembered about this when gathering records and I was supposed to get follow up but never did)
3 week inpatient hospitalization for PICC line seeded infection of multifocal pneumonia and for continued elevated liver and pancreatic enzyme. RNY and cholecystectomy completed at this time.
1 week admission for paralytic ileus and fecal impaction following 6 months of at least one ER visit a month for GI pain and distress
3 week inpatient hospitalization for metabolic disturbance ; Transferred to speciality unit for suspected sphincter of oddi disorder. Received diagnosis of SOD Type I and underwent ERCP with pancreatic stent placement; Immune testing revealed previous infections of EBV, CMV, & 1 speckled ANA
Multiple ER trips for flares of GI disturbance and neck and other muscles strains * WORK INJURY (2011): severe back and neck strain during normal nursing duties with patient care; sought medical evaluation and was told I needed to find a new career because I had something very wrong with my neck. PCP was notified and I was sent for an x ray which revealed reversal of the cervical spine. No other follow up was received, but continued to have significantly issues with back/neck pain from this point on instead of occasional.
3 week hospitalization for severe abdominal pain and findings of pneumobilia, transferred to specialty hospital for specialized follow up due to complicated history; testing revealed dysfunction in the liver enzyme of unknown function which eventually returned to normal upon release and clear liquid diet; underwent psychiatric evaluation to r/o factitious disorder; factitious disorder ruled out, but significant for depression and anxiety. Discharge with orders for follow up with outpatient testing gastric motility, but at the time I discontinued care with specialists and went to a local GI.
Cont GI exacerbations and frequent neck and back strains with normal activity; Colonoscopy/Endoscopy showed gastritis and mild eosinophilic congestion; Cut gluten out of my diet and switched to organic foods. No more major GI distress for 1 year. Overall improvement in symptoms, quit taking all medications for GI; Only 2 ER trips one for a feared heart attack and the other for a neck strain that caused my vision & hearing to get weird
Began to have twitching under eye and the right side of my fae began to look like it was dropping; started to have increased hip pain with effects on my mobility when flared up; developing bumps on knees and elbows and angiomas and petechia all over my body; Woke one day with slight chest pain and could feel my heart racing, went to work all day but when i got home it was worse. Went to ER treated with fluids and o2 for acute kidney failure d/t dehydration however I drank plenty of water and electrolyte containing fluids that day, but was having a flare with excessive urination as I sometime do; Referred to cardiology d/t chest pain, sudden HTN after no HTN for 4 years and EKG abnormalities. Stress test was negative. Discovered a murmur and slight mitral valve regurgitation. Want rheumatology to follow up with me but PCP did not make referral because my ANA was negative; Discharged, but started to decline a lot from this point overall with my GI symptoms coming back and more neurological symptoms appearing (arthralgia, dysphagia, tremors, vision changes, sensitivity to light and noise, brain fog ect) Requested PCP to write leave for work but was refused so cont to work but boss would let me work from home often.
Constipation issues becoming distressful again requiring enemas. Joint, neck, back and hip pain became increasingly worse when I changed jobs to a more physical nursing position. Neurological symptoms and heart racing increased with the position change as well. Injured 4/2015 at work when a 300 pound patient fell on top of my injuring my hip, back and neck. Did not recover. X Ray showed reversal of the cervical spine, straighten of the normal thoracic curvature and an discrepancy between my right and left leg lengths. Comp denied claim beyond the diagnosis of neck and back sprain indicating their physician felt I had some sort of connective tissue disease based on his assessment of my medical history and the report from comp physical therapist regarding my flexibility and descriptions of pains; Severe mobility impairment, starting using a cane and limping badly; Started with a new PCP, but quickly discontinued because he thought I was just depressed even after an ER trip in which the physician recommended I got to Morgantown next time because “they need to biopsy your skin and muscles.” I had uric acid, ketones, protein in my urine as well as elevated eosinophils. Treated for pleurisy/chest pain with 1 night observation; went back to cardiology echo negative except for trace mitral regurgitation; holter showed tachycardia and bradycardia. Started on digoxin and endotolac. Colonoscopy/Endo negative for issues; CT scan showing small cyst on right kidney, small bowel anastomosis and small bowel intussusception. Was told this was due to my previous surgery in 2007 however, no other scans state the abnormality. Continued to loss weight, strength, balance, increased joint pain/swelling/night sweats, insomnia. Deteriorated, worse chest pain shortness of breath. Self-monitoring showed heart rate of 160 and o2 sat 70s. Admitted and found deficient in all essential and nonessential amino acids as well a vitamin B12 and pancreatic enzymes. Spent two week on TPN. Still having chest pains, heart racing, shortness of breath, severe nausea and constipation. Doctor diagnosed Ehlers-Danlos Syndrome due to family history of EDS & Chiari Malformation in great maternal aunt, score of 7 on the Beighton scale, in review of my family and personal medical history, and after looking at my skin hyperextensibility and severe stretch marks for someone who has never been overweight. Researched and requested transfer to University for to see if I needed to be on the TPN actually and to get my POTS diagnosed as no practitioner here would diagnosis it although the cardiologist on my case locally agreed it was likely POTS, but I needed to go to a bigger hospital to get it diagnosed.
Admitted to the university hospital. TPN was discontinued due to a normal albumin level and I was told the testing of my amino acids wasn’t reliable; TILT table testing results met diagnostic criteria for POTS; Stool testing revealed fat malabsorption. High 5HiAA and high normetanephrines; High vitamin b 12 and slight hepatomegaly. Discharged to home with Home PT/OT/Nursing, wheelchair, orthotic order, pain, bowel and malabsorption prescriptions; follow up with cardiology, switch to PCP for primary care and ordered to follow up with GI for further investigation of malabsorption and GI problems. PCP referred to sport medicine for EDS treatment and neurology (appointment upcoming) per recommendation of GI to eval for symptoms of MS GI: referred to medical nutrition doctor for assessment of the need for parenteral nutrition due to GI distress, malabsorption and EDS; Swallow eval showed slight dysphagia with incomplete epiglottic inversion and recommended esophagram which is upcoming. Motility study was normal at 4 hours, but the morning of the study I vomited an entirely undigested meal from 9 hours before so my gastroparesis is suspected to be transient in nature; Awaiting scheduling is an ultrasound endoscopy with biopsy to assess my pancreas and to check for eosinophil infiltration as my eosinophils are elevated again. Sleep study ordered showed no need for a cpap, but also showed only hours of sleep, no REM sleep, o2 desaturation to 82% however not sustained, tachycardia and they failed to mention how I had to keep sipping fluids all night, my husbands was in the room and he saw my hands up in the air moving while I was sleeping and I also bit my tongue very hard during the night and cried out; However none of this was mentioned in the report for some reason. This was a good night for me actually as I didn’t even break out into the severe night sweats I usually do
Bed/Chair bound due to symptoms of POTS, loss of vision and weakness/imbalance with standing, painful unsteady ambulation with severe neck, back and hip pain with walking or lifting; Neurological disturbances; severe fatigue; continuing to loss weight due to problems with nausea, early satiety and pain, still having constipation, bleeding gums, bleeding internal hemorrhoids, poor muscle control with bowel or bladder movements; petechia after showers, polyuria, dysuria; joint pain/ swelling/subluxations/rib/hip/shoulder/neck/wrist/ sometimes thumb subluxations; insomnia with night sweats; increased brain fog, confusion, sensory overload, loss of nouns, arthralgia; numbness/tingling in hands and feet; weird tingling sensation wrapping around from front to back; increased anxiety with ridiculous startling; sensory overload; forgetting what I am saying while I am saying it, visual static and colors, other disturbances; high pitched ringing in ears, sometimes roaring in ears; small aspirations with drinking fluids; pills and food getting stuck in throat; Completely dependent on others for assistance for self care; symptoms are bad even when only sitting upright; ovary pain with severe increase in physical pain and symptoms during PMS. Short heavy, painful period
Content originally posted on Stomach-vs-Heart.com and migrated to OnlyinthisHead.com because of updates to SVH’s purpose. Read more about the changes coming to Stomach-vs-Heart here.
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My diagnosis of Ehlers-Danlos Syndrome (EDS) took a very long or short time depending on the perspective.
While all my signs and symptoms tell the tale, my ability to persevere in spite of great challenges along with the ignorance of my local medical community resulted in a 16-year battle, at times desperately seeking a reason behind all the whack-a-mole symptoms my practitioners were chalking up as idiopathic.
Figuring out I have EDS and getting my physicians to listen is one of my greatest accomplishments as yet on my chronic illness journey.
Although, the hoofbeats were obviously Zebra quality, without a geneticist’s diagnosis there wasn’t a proverbial leg to stand on in getting access to care nor with my disability case.
I am only thirty-something. Insurance companies deny claims for referrals unless there is documented proof of the condition for which a treatment or evaluation is being ordered to address. The powers that be grow stricter every day on what officiates necessity based on the narrow criterion lacking updated research on many of the not so visible disabilities. Insurance companies impose stringent criteria, creating a slippery slope leaving some patients out to dry on answers, appropriate care and follow ups.
Getting the EDS stamp of approval from genetics is often the difference between open and closed access to treatments, therapies, and medications EDSers need for improved quality of life cognizant of the potential and probability of progressive and sometimes rapid deterioration seen in many instances of this disease process.
In my case of Ehlers-Danlos Syndrome, it felt at times impossible to get a physician to acknowledge my case. No specific markers in general laboratory workups to point to this “rare” genetic disease. A great majority of practitioners only receive a brief description of EDS in medical school. They only understand EDS in the most extreme form and disregard the less obvious cases. To make matters worse, Ehlers-Danlos patients are often misdiagnosed with psychosomatic or malingering type diagnosis, permanently damaging the patient’s credibility as an active member of their healthcare team.
Somehow, I found my way to genetics within one year of determining Ehlers-Danlos Syndrome was the diagnosis behind my dozens of non-specific “idiopathic” diagnoses. Some of it was the grace of higher power. Some of it was advice and knowledge obtained researching Ehlers-Danlos Syndrome blogs online for stories I could see my own reflection within. Most importantly, some of it was me finally standing up for myself to stop the neglect brought on by poor primary care experiences in the past. I share this story for the undiagnosed medical Zebras out there as a beacon from the land of official diagnosis. [Tweet theme=”basic-white”]For The Undiagnosed Medical Zebras | Stomach-vs-Heart.com | #EDS #Genetics #ChronicIllness[/Tweet]
May my Zebra tale light your way <3
It Started as a Work Injury
The last time I worked was well over a year ago. Twas the night shift I saw my nursing career crumble along with my body. The night I will forever remember.
I worked on a skilled and continuous care unit. That evening, I was the only RN for 54 patients and we were also short staffed on LPNs and CNAs. It was one of those dreadful nights in healthcare when you arrive for your night shift and the unit is reminiscent of a war zone. Day shift looked desperately to oncoming night-shift staff, eager to give shift report and escape the day’s madness.
Shift report took 45 minutes, orders were still rolling in and blood and IVs were scheduled for the night so I hit the ground running. Luckily, the few staff on that evening were strong, seasoned providers and for the most part, it was going well despite the chaos. I checked items off my to-do list while managing the unexpected issues as needed.
Finally, I was able to sit at the charge desk to start working on my nightly documentation duties when I heard a bed alarm go off down the hall. I got up to check the alarm and it was coming from the end of the wing. The ancillary staff members were busy elsewhere on the unit, so I did what any good nurse would do and followed the sound of the alarm.
The Fall to End It All
I saw a tall patient emerge from the room.
Shuffling unsteadily at a slow pace into the hallway, the patient was clearly confused and at high risk for a fall any second.
I hastened my pace to meet the patient before the fall risk became a fall reality.
With calm instruction, I got the patient turned around and headed back to the room. I walked alongside as a support, helping the patient safely ambulate as my nurse’s training taught me years ago. Things were going okay the first few feet until the patient began leaning to the right. I attempted to support the lean but I was no match for the large, 300-pound frame.
I collapsed under the patient’s weight and we both fell to the floor.
The patient landed in my lap with my legs twisted beneath me. Pain ripped throughout my neck, back, and hips. My adrenaline was high and I couldn’t accurately estimate the extent of the damage done. The night went downhill from there as full chaos ensued. I didn’t go for medical evaluation at the time for a number of reasons, but mostly because I underestimated the extent of my injuries and overestimated the priority of my nursing duties over my own well-being. I struggled to get through the night, but took a larger Ibuprofen dose and somehow made it through until morning.
Completely exhausted with pain and the toils of my shift, I went home, took another mega-dose Ibuprofen dose along with a hefty dose of Valerian Root to relax my strained muscles. I proceeded to sleep for the next 24 hours.
When I awoke, I couldn’t move.
The pain was so intense. I knew something was definitely wrong!
I mentally chastised myself up for not going to the ER right away. I spent the next couple days in bed, hoping rest would heal my wounds but when it came to the third day when I was supposed to go back to work, I called off my shift and let my boss know I’d be filing a comp claim because I still could barely move. I began to realize my injuries were beyond a simple muscle sprain or strain. My hip hurt terrible, weight bearing on that leg became impossible without excruciating pain and my shoulders and neck locked up with every attempt at normal range of motion.
Go Ahead! Add Some Insult to my Injury!
The next day I went for an evaluation at my job’s corporate health department. The doctor ordered x-rays and put me off for work for four weeks. He ordered physical therapy to treat my muscle “strain.” Nevertheless, each week passed by with only more evidence of serious, ongoing damage and increasing pain with further debility. The physical therapist and the corporate health doctor continually remarked on my flexibility despite my injuries. After a few weeks the comments on how my injuries should’ve healed within this time began.
My x-rays showed straightening of my thoracic spine, reversal of my cervical spine and my left hip being higher than the right, The doctor recommended an MRI and more specialized physical therapy. As soon as those orders went out, the compensation department quickly denied myclaim.
I was left without insurance from my job, nor coverage and/or compensation to recover from my injuries. Things only got worse as many of my chronic symptoms came out of remission into full flare in response to the stress and inflammation from the injury.
The key phrase in my denial letter was “connective tissue disease.”
This non-specific, diagnostic umbrella of a term was behind the reasons why my injury was not healing as it should.
This is why compensation only took responsibility for 1 month of my lost pay from the injuries but no more.
It was no surprise to me there was a much more clandestine process at work beyond the general diagnoses of arthritis, scoliosis, IBS, depressionand anxiety. On the contrary, I was astonished how quickly the corporate health physician was able to determine what type of disease process I was dealing with as I’d spent the previous 16 years trying to get my physicians to figure out what exactly the problem was to no avail!
My Latest Decline
I was sick all the time but never could get any doctor to piece my puzzle together into the global diagnosis Ehlers-Danlos now provides. It took this catastrophic event of losing my ability to work for me to have a platform to work from in getting a primary practitioner to listen to me. Despite several lengthy hospital admissions over the course of ten years, genetics were never suggested by any of my practitioners. I gave up on doctors for several years because they offered no answers or help I couldn’t curate on my own. I managed symptoms using a natural, holistic approach… and at times, sheer denial.
Over the course of my lifetime of living with a chronic, unnamed illness, I learned to internalize pain and distress. This system of defense comes with a hefty price when used too often for too long to cope with chronic disease. Societal expectations, invalidation from medical practitioners without appropriate consideration to rare disease processes and my tendency to think pain was a part of life worked in tandem and tore down my defenses.
Nevertheless, the art of survival is to continue, even thru most strenuous of circumstance and that’s what I always do. [Tweet theme=”basic-white”]The art of survival is to continue, even thru most strenuous of circumstance and that’s what I always do[/Tweet]
My system went into yet another serious failure to thrive mode. This time, instead of just losing a little weight and spending a few weeks on IV nutrition, I went from walking to using a wheelchair and lost almost 40 pounds in 10 months time. Standing became exhausting as my heart raced upwards towards the 200s with any position change. My GI symptoms came out of remission with full force and maintaining my weight turned into an impossible dream. My long-term neurosensory issues worsened and new symptoms began appearing.
I tumbled down the chronic fatigue and muscle deconditioning paradox.
I couldn’t manage my disease process on my own anymore. With the denial of my workman’s compensation claim, I needed to find a doctor to help me quantify my chronic disability case with updated testing and officially channeled diagnostics. My spirit fought the idea of filing for disability years ago when someone suggested the possibility I would always be sick. Almost ten years later I see this is true and I’m tired of fighting.
It’s more about accepting this process and adapting accordingly.
Nowadays my energy is better spent enjoying life rather than fighting my disease. EDS works in a wide variety of ways under the pressure of heredity, environmental, interpersonal, and psychosocial stressors. My story is inundated with unusual stressors and traumas in all these areas. My chosen career field turned out damaging to my already unstable musculoskeletal system while no less exhausting me with work stressors taking more of a toll on me than I could observe it taking on my peers.
Basically, I really should’ve seen all this coming. I never thought my life’s story would include filing for disability at 34-years-old. Ten years ago when my system first went haywire, I never even imaged the possibility I could one day be disabled. Working was always a struggle because of my health but the reality of my declines and symptom flares never seemed serious until I couldn’t push myself to work any longer. I grieved my nursing career and let that door close shut for once and for all.
Back into the System
I scheduled with a new primary physician in hopes of getting my “connective tissue disease” diagnosed. I secretly hoped to at least to get it ruled out so I could further pursue compensation. Walking safely met using a cane. Working outside of the house or at any set amount of time proved impossible as each one of my systems starting to send off alarms of malfunction. I focused on finding ways to make an income from home and putting my medical team back together.
For once, I slowed down to heed the warnings.
I collected all my medical records, prepared for the appointment and the many appointments to come.
My records were scattered between 3 different hospitals, 2 different general practitioner’s offices and across 2 States. Gathering and reviewing my records was no less painful than it was exhausting, with enough records to fill two large, three-ring, binders. My chronic illness struggle is well documented despite the years I avoided the system. The full picture of my years battling an invisible disease process was easy to see only in retrospect. As a medical professional, it was clear to me; however, little did I realize how difficult it would be to find a doctor to provide appropriate diagnostics and treatment.
For some reason, local physicians still diagnosis many chronic symptoms as idiopathic or psychiatric. This is not only a dangerous practice but also a damaging process to endure. Invalidating the experience of the chronically ill in this way deflects important attention away from the core problem. After working within this system as a nurse, I fear it more than the legions of hell. Psychiatric conditions are real and important to diagnose and treat appropriately but more often than not these diagnoses become barriers to medical care and used against the patient as the primary reason for physical distress.[Tweet theme=”basic-white”]Psychiatric conditions are real and important to diagnose and treat appropriately but more often than not these diagnoses become barriers to medical care and used against the patient as the primary reason for physical distress.[/Tweet]
Archaic and corrupt is this type of “Healthcare.”
Undertreated, underdiagnosed and unrecognized.
That is the theme of TOO MANY stories across the chronic illness communities of the interwebs.
As a former psychiatric nurse, I was gravely aware of the stigma attached to chronic illnesses like EDS, fibromyalgia, chronic fatigue and even multiple sclerosis. I heard the judgments of fellow practitioners and was subjected to those judgments when I was still actively practicing despite my frequent flares of illness.
Those with chronic, physical illness stuck in the mental health system are often subjected to psychologically abusive practices like withholding of appropriate referrals and testing. Many healthcare workers make inappropriate assumptions about people living in chronic pain or with chronic fatigue. Please check out my article Regarding Chronic Illness and the Unproductive Perspectives in Healthcare Professionals for more on my experiences as a chronically ill, psychiatric nurse learning to practice despite the harmful bias and negativity culture propagated in health care. We must refute this stigma and bias. The damaging reality created when society mistreats its most vulnerable populations is when society is truly at its worse. Somehow I avoided getting caught in that web, but it was a narrow escape as you will see.
We must refute this stigma and bias. The damaging reality created when society undervalues its most unprotected populations is when society is truly closing in on its demise. Somehow I avoided getting caught in that web, but it was a narrow escape as you will see.
My extensive records forewarned of something looming inside me that would tear me down little by little, bit by bit. Reviewing my records from the previous 10 years revealed a correlation with anytime I was stressed, tired, sick or in any way overextended on energy, my systems went into shut-down mode.
I often ended up inpatient or treated in the emergency for these flares.
Review of my records from the previous 10 years revealed abnormalities in my testing never reported to me or referred for follow-up. I discovered there were cysts on my ovaries, liver, and lung. Many abnormal labs pointing towards a connective tissue disease and possibly autoimmune problem. One report said my pancreas was “small and atrophic” for someone of such a “young” age. Finding out all this new information just before the appointment with my new primary made me determined to make this primary work for me and my case. I organized my records chronologically and typed up a professional summary of my medical history for the appointment.
First Appointment? More Like Total Disappointment.
I left the office in tears. I spent all that time and effort gathering my medical records, preparing a nice summary of my medical data and the jerk didn’t even bother to look at any of it.
He was pompous and dismissed most of my concerns. The appointment turned out to be everything I was afraid of it becoming.
He asked me “How do you feelabout all these issues you’re having?”
I looked at him and said with a tremble in my voice “I feel sad! I feel sad I can no longer do the things I used to because of my all these physical problems.”
I wondered to myself if people like him even have a soul.
Condescendingly, he said “You know, anxiety and depression often require lifelong treatment. I think this is more the issue, but I’ll go ahead and order some labs to check if you’ve got an autoimmune problem. I am sure it will be fine. What you really need to work on is your depression.”
Knife.In. Heart. Turning and Twisting.
This is NOT what I came to this doctor for! I wanted help with my musculoskeletal injuries from work and appropriate referral for this “connective tissue disease” preventing me from collecting full compensation for my nursing career in ruins from just doing my job. My depression and anxiety were managing quite well until this latest decline. These stressors were beyond my control and despite the losses, I felt I was doing very well from a psychological standpoint.
I began to question if I accidentally stepped into some sort of weird, alternate universe where doctors have no idea what they are doing because ordering imaging studies and orthopedic consults for my injuries was the most obvious interventions at the time. Nevertheless, this doctor put this concern on the back burner stating something about a dorsal rhizotomy someday.
At this point in my journey, although I was realistic in filing for disability, there was still a part of me holding on to being “fixable.” This appointment was supposed to go a certain way for the best outcome for my case and instead I was forced to face the harsh reality that is having a chronic, invisible and undiagnosed disease.
My spirit was horribly battered in that 15-minute appointment. I felt guilty for even trying to get help and for still being in pain and limited by my injuries. I completed the lab work in hopes something definitive would result so I could get the help I needed to recover or at least stop the ongoing damage.
Because it would not be Chronic Illness Life with Ehlers-Danlos Syndrome™ if these test results didn’t come back normal, all the testing he ordered came back really normal. At first glance, you’d think I was the picture of health if only referencing my labs. However, in comparison to previous years, my labs show a more distinct pattern of decline.
My pancreatic and liver function tests show declining function. Hematology shows an underlying macrocytic anemia and eosinophilia few practitioners will comment on. In recent years, my kidney function tests are beginning to show signs of damage. Then there is the business of my small bowel telescoping itself in such a way that my nutrients are not being absorbed. These are just a few examples.
“Normal” lab values are thefatal flawof the healthcare system as the individual homeostasis of the body does not care about ranges. What is normal for the person of average height, weight, and metabolism are much different for me who is short and underweight with a lightning speed metabolism. Alas, these relatively “normal labs” would not help me out with the dismissive nature of my new primary care physician.
I Look Like Steven Tyler
About a month later, my decline was worse still with hair loss, increasing pain inside and out, increasing neurological problems with completely new, scary symptoms, weight loss and GI distress ongoing.
The decline continued spiraling as did my ability to ward it off with my usual organic, vegan eating and yoga positivity practices. I watched my energy reserves dwindle as I became weaker each day. For the next appointment, I brought along my hubs for backup.
If I was going to leave this office crying again, at least I would not be alone this time.
Although confident about this appointment, I rationalized I was overwhelmed at the first appointment and would not be so easily rattled this time. If only I could change the doctor’s mind about my depression and anxiety being the priority of my case, things could start going in the right direction.
I felt an urgency to make sure he understood my depression was well managed despite my physical complaints. Armed with all my data, records, and backup defense system, I reported all the issues to the doctor with confidence and proper terminology.
Smugly, he reported my “normal” labs. I showed him my “sick” pictures (a sad collection of selfies I began taking in January of 2015 after noting the left side of my face appeared to droop). I included a comparison photo of myself a year prior to this time and “now” shot illustrate the difference.
He commented on how my “now” photo resembled Steven Tyler of Aerosmith. He declined to speculate what was causing my facial dropping and trailed off on some self-absorbed storytime.
I declined to pay attention to the nonsensical BS.
Endings are not Always Happy
He skimmed over my list of symptoms and said a neuropsychiatric referral would be helpful because of my cognitive issues. He slowly explained the difference between psych and neuro psych, emphasizing his belief I may be experiencing some sort of neurological disorder. I knew the difference but humored him because you must do that sometimes to survive.
I accepted this as he was not willing to tackle any of my other issues at the time and this was better than nothing. I waited to hear from his office for a month before I got a call from the local child psychologists office reminding me of my upcoming appointment.
Apparently, my insurance would not pay for a neuropsychiatric referral but only a psychological evaluation. Not only was his office horrible at notifying patients of appointments made on their behalf, but also at the referral process.
I was frustrated. The doctor I was referred to is an infamously worthless practitioner. What’s more is a conflict of interest existed as I also worked with him when I was a nurse in children’s psych. There was no way I was going to this man for any type of anything!
I knew my symptoms were neurological. I was a nurse for 8 years for goodness sakes! I called my primary’s office and told them I needed a different referral. I wasn’t going to take this treatment without a protest!The reasoning was absurd. This was even more insulting as I know how state insurance works from years of dealing with it as a case manager nurse. I told the nurse I was losing faith in their ability to help me because obviously if they’d written the request for neuropsychiatric evaluation RIGHT, the insurance company wouldn’t have denied it.
I went on to name off my symptoms calling for a neuropsychiatric evaluation.
Things like loss of consonants and nouns, sudden stuttering and prosopagnosia warrant medical investigation before ever considering psychological interventions.
I informed the nurse I planned to discuss this matter with my husband and I would get back to the office on whether I would continue care with this practice or not.
The nurse scoffed and hung up on me as if I’d been ridiculous.
I got a letter a few days letter dismissing me from the practice. This was ok, the plan was to find a new doctor anyway.
Let’s Play a Diagnostic Game
At this time, my best guess for my invisible, mystery illness was Lupus.
Lupus, being an autoimmune disorder involving connective tissues seemed to fit the bill as many of my symptoms were Lupus-like (joint pains, rashes and sores on my face, Shaw’s sign) Even though I am ANA-negative (the end all and be all for lupus diagnosis for most clinicians), I still question the possibility of an ANA-negative Lupus diagnosis comorbid to my Ehlers-Danlos case.
After all, EDS and autoimmune disease are often close bedfellows.
Getting a doctor to agree to the possibility and order further evaluation was like pulling teeth. The symptoms were very similar to mine and my maternal lineage but didn’t quite add up. Surely someone would have had a positive ANA at some point in the history. I continued to sort through the possibilities in the arena of connective tissue disease and suddenly Ehlers-Danlos Syndrome popped up and my limbic system fired up with a memory flashback from several years previous.
A friend, and coincidently Medical Zebra with Multiple Sclerosis, told me at 30-years old to investigate a possible EDS diagnosis what with my weird and dramatic gastrointestinal issues. She showed me how she scored on the Beighton score and explained this as part of the diagnosis. Even though I had the same stretchy skin, flexibility, deep and severe stria and the associated diagnoses included IBS and Sphincter of Oddi, I never thought about it again until this momentary memory flashback.
Sadly, I think I blew it off subconsciously as I was too naive at the time to question the proclaimed infinite wisdom of my physicians.
The EDS suggestion faded away as quickly as it came as my mind went into full denial mode over the years I struggled to be well.
Motivated by this recollection, I began researching EDS types, incidence, and prevalence. I read thru countless scholarly articles, message boards and connected with others going through interestingly similar circumstances. The more I learned, the more I wanted to cry from the rooftops, “Eureka! I’ve found it!”
Finally, it all made sense. My own suffering and the suffering of my mother’s side of the family finally was connected to the root cause with the discovery of a Chiari malformation uncovered in the family history.
The bad backs, stretchy skin, fatigue, musculoskeletal pain, severe gynecological and gastrointestinal problems scattered throughout mine and maternal family’s histories were all a part of the same monster.
In my research, I found grand validation for the evidence of the Ehlers-Danlos gene in my bloodline.
This was it.
Undoubtedly, this was the answer to the question countless physicians and specialists were never able to answer until posited.
I made an appointment with my former primary from one of my first serious hospitalizations. The last time I met with this doctor was in 2005, but he was my best bet in getting a physician to understand the whole picture of my illness. Moreover, he wasn’t a fan of psychiatry so I felt safe to express my physical issues without fear of being written off as psychosomatic. This physician also cared for many of my older family members. This also kept me from having to start all over with yet another doctor. My parting ways with this physician in the past was only due to insurance changes, so it was no problem to go back.
I presented this doctor with all of my medical records since I’d last seen him in 2005 as well as a typed list of my chief complaints. I provided a printed table of my symptoms and history compared to EDS, Lupus and Polymyalgia Rheumatica (casually suggested by ER physician). He agreed there was definitely some sort of connective tissue problem at work but he wanted to rule out a few more things first before settling on a diagnosis.
The Issues is in My Tissues, Not My Blood!
He checked my immunological function and tested for Lyme’s disease with Western Blot. My Lyme antibodies were borderline/unequivocal. An asymptomatic strep infection showed up. My vitamin levels for deficiencies were in the low range of normal, which was surprising with my poor nutritional intake due to nausea and evidenced by my continued weight loss. He was still questioning what pathology was causing my dysautonomic symptoms and inability to maintain weight.
I reminded him that this is common phenomena for certain folks in the Ehlers-Danlos Syndrome community. He agreed Ehlers-Danlos was one of my issues but continued to press more could be at work. He was probably right in retrospect but at the time it was frustrating knowing in order to have the official diagnosis to build my disability case upon I needed to see the appropriate specialists. This doctor simply ignored these requests and continued ordering tests to better define what mechanisms were behind my sudden, severe decline.
Always remember with Ehlers-Danlos Syndrome, the issue is in the tissues, not the blood.[Tweet theme=”basic-white”]Always remember with Ehlers-Danlos Syndrome, the issue is in the tissues, not the blood.[/Tweet]
EDS doesn’t show up on routine labs specifically but the effects do! By the time EDS evidence shows up in blood work the tissues may be so badly damaged beyond the point of control. Managing EDS related issues with less aggressive measures won’t work at this stage. Get ready for the big guns.
By the time EDS evidence shows up in blood work the tissues may be so badly damaged to the point of no return. Managing EDS related issues with less aggressive measures won’t work at this stage. Get ready for the big guns.
So with no other obvious diagnosis found, my doctor agreed the Ehlers-Danlos diagnosis was appropriate and likely the cause, in one way or another for my worsening musculoskeletal problems and active dysautonomia.
At this point, I was going blind up for 10-15 seconds at a time sometimes as many as 30 times a day with standing because of the tachycardia and deoxygenation. He still didn’t write for the appropriate referrals but promised to work with my pharmacy to compound a medication to help control my autonomic nervous system dysfunction. While waiting on this to take place, I saw my gastroenterologist in Pittsburgh and local cardiologist as I was already established as a patient with these practices and could go without consulting my primary physician. My hope was one of them would make the referral for genetics or at least rheumatology.
From my research, I knew this was POTS but I also knew only a cardiologist could provide the diagnostic orders for a definitivePOTS diagnosis to compliment my unofficial EDS label. My episodes were also frightening to my family and myself as they often resembled small seizures and were getting worse every day. I was seeking symptom management because it was making it even more difficult for me to get around the house, let alone be productive or go places. My activity tolerance dwindled to that of a 90-year old end-stage COPD patient. So is the condition known as POTS.
The medication my primary care doctor wanted to use to control my dysautonomia was called Bellergal Spacetabs. Apparently, this medication is no longer available in trade name form and must be compounded by special order. When first marketed it was used to treat menopause and nervous tension. This was taking some time and after 6 weeks of being stuck in bed because my symptoms were so bad, I was doubting if it was even going to happen.
I visited my cardiologist about my worsening POTS symptoms. He had no idea what POTS was, but the EKG in office showed my issues with orthostatic tachycardia clearly. I provided him with a print out of my pulse and blood pressure measurements I’d taken over the course of the previous month. He said with conviction, this must be endocrine or nutritional. I further explained the connection of POTS with my new diagnosis of Ehlers-Danlos Syndrome but I doubt he was listening as he was already focused on typing orders as he said his peace on the matter.
He prescribed me Digoxin for what he called a “tachycardia arrhythmia.” He urged me to ask my primary to determine the cause of my dysautonomia because, like he told me when I went into acute kidney failure at 33-years old, he didn’t want to do a heart catheterization on someone so young.
I waited several more weeks for my primary to get the compounded medication ordered before I decided to take the Digoxin.
From my research on the treatment of POTS-related to EDS, management of the associated tachycardia with digoxin was not only inappropriate but borderline dangerous. Nonetheless, I was in a pickle to find relief for my constantly racing heart.
I thought if it did mess me up maybe it would get me to the specialist I needed to get a good medical team to manage what I could already foresee on the horizon.
The problems started within two weeks of starting the medication. Digoxin made no improvement to my issues with tachycardia. In fact, there were times I measured my pulse and it would go to 32 beats per minute suddenly with no postural change. My neurological issues worsened as I started seeing green, yellow and blue hues everywhere. My fatigue was worse than ever and I began having shortness of breath just from rolling over in bed.
Finally one morning I awoke to horrible chest pain and shortness of breath. I got up to the bathroom, losing my vision multiple times. I checked my heart rate and oxygen level because I always check my vitals before making a trip to the ER. My heart was 180 when standing, but 35 when laying down and my oxygen was dangerously low at 85%. I felt terrible and was hearing strange ethereal music all throughout this episode.I woke up my hubs and we headed to the emergency right away.
Another long hospital admission to add to the tale.
At the ER I know I must’ve looked really bad because I’ve been there a thousand times but never once met with such urgency to get me on the monitor and oxygen. My vitals told the same story as my home measurements. Soon they were getting all sorts of labs, x-rays, and other tests. The nurse brought in an aspirin, Nitroglycerin and placed an IV in my arms and started fluids. Within ten minutes the resident doctor came in to tell me I was going to be admitted.
As stated, my history with hospital admissions is pretty thick. This was yet another 3-week stay in which myself and my family were frightened for my wellbeing. I was started on oxygen and a CPAP at night because of the spontaneous oxygen desaturations.
My amino acid testing came back showing multiple occult vitamin deficiencies and a serious deficiency in all essential and nonessential amino acids. In addition to these issues, the testing uncovered an exocrine pancreatic insufficiency, explaining my inability to maintain or gain weight as this causes fat malabsorption.
My doctor started me on intravenous nutrition, vitamin b-12 injections, vitamin c and omega supplementation, a beta blocker and pain management for my chronic musculoskeletal pain. Within a few days, I was on 24/7 oxygen because my frequent bathroom trips were causing distressful oxygen desaturations. My blood gasses showed hypercapnia but I was not having anxiety attacks to explain the problem.
The only other issue was with my constipation. I showed symptoms of delayed gastric emptying and poor motility. He put me on a heavy duty bowel management regimen, but my guts were barely responsive. He ordered testing and surprisingly all my motility testing came back normal. Stranger still, I ended up throwing up the barium from one study hours after they said it had passed through to my small intestine and was “normal.” My doctor was frustrated but determined to keep me admitted until he exhausted every possible avenue with diagnostics.
While he understood the Ehlers-Danlos Syndrome diagnosis, he did not see the importance of sending me to a facility that could most importantly diagnose my POTS officially. The cardiologist covering my case at the hospital recommended I be sent to a hospital better equipped to handle my delicate case. My primary wasn’t the type who worked well with other doctors. Regardless, EDS and POTS are conditions requiring a multidisciplinary team for successful management and I needed specialists opinions to get access to treatments and my disability case.
I was sick and distressed by his disregard for my patient right to be evaluated be specialists familiar with these rarely diagnosed conditions. After talking it over with my family and a helpful Zebra friend, I demanded to be sent to the state university hospital.
As a young human filing for disability, providing significant evidence and opinion on the disabilities is essential or the case will undoubtedly be denied. This means, the opinion of one doctor is not enough by any means. The fact is the opinions of multiple practitioners, family, friends, and employers are very important in justifying a case of disability in anyone younger than 60 years old.
I tried to explain this my doctor, but he didn’t understand in any way helpful to my case. He continued to behave possessively towards my care. Finally, with much pressure from the nursing staff at the hospital, the cardiologist on my case and my own refusal to accept any more of his treatments he transferred me to the state’s university hospital. This move was catalytic to my journey to genetics, but also held its own consequences in regards to my care that are still playing out presently.
Within 4 days, the physicians at the university hospital diagnosed my POTS officially with a tilt table test. See the video from eMedTV on Youtube to understand what this test entails.
My pancreatic exocrine insufficiency was confirmed with 24-hour stool collection test. I was evaluated by a nutritionist and given EDS related recommendations for using medical protein supplements with added collagen proteins to bolster my nutrition despite the inevitable process. The team of doctors discontinued TPN as my protein levels were now normal.
Physical and occupational therapy assessments qualified me for a wheelchair since my mobility was limited my the syncope with my POTS, the dislocations and pains in my hip and back and the discrepancy between my leg length. They ordered home nursing, physical and occupational therapy to help me transition to my new, officially disabled life at home. All in all, I was pleased and hopeful to finally have a team who understood my diagnosis and knew what orders were appropriate.
All in all, I was pleased and hopeful to finally have a team who understood my diagnosis and knew what orders were appropriate.
The physicians suggested the amino acid testing my physician based his decision to start the IV nutrition on was not accurate and perhaps I should’ve never been on IV nutrition. I decided to ask for new primary care management in my case considering my troubles with my primary and need for better-educated practitioners. One of the residents on my case spoke up eagerly volunteering to take my case via her outpatient practice at the hospital.
I felt confident at discharge as I was sent home with all the right supports in place. Finally, I was out of the warped space that is my local healthcare system. These physicians were more up to date with current research. Things were going in the right direction and even though I was beginning to understand I would never get all the way better, I felt hopeful I wouldn’t have to worry about getting uneducated treatments nor if disability would question the validity of my case.
Start of Care with the University Health System
By the time of my first follow-up appointment with my new primary, I gained 2 pounds back but experienced little improvement with my POTS symptoms or the issues with my neck, back, and hips. All these things were getting worse as my once muscular physique deconditioned further still. Difficulty swallowing was making adequate intake even more troublesome with my constant nausea and intermittent dysmotility. My neurological symptoms continued to frazzle out as well.
I attempted to show my new doctor research I’d found on using IV fluids to treat POTS, but she barely responded brushing the responsibility of that decision off to cardiology, which I was also following with at the university now. She referred me to sports medicine for help with my musculoskeletal issues related to Ehlers-Danlos Syndrome. She prescribed a few more medications to better manage my symptoms. She said she’d see me again in 3 months and in the meantime, I could contact via email if anything came up.
The appointment was less than 15 minutes. My hope was for so much more as this was our first appointment and we’d not gone over all my medical history in the hospital. I was slightly concerned with her perceived disinterest in my case now we were no longer in the hospital; However, I held to hope because I knew sports medicine should at least have a better understanding of what to do with me. I needed referrals to genetics and for addressing my orthopedic and neurological issues as well. I told myself Rome was not built in a day and I couldn’t expect all of my issues to be addressed in one appointment when there were so many.
Down the Referral Wormhole
The sport’s medicine doctor was familiar with EDS but questioned me as to why my doctor would be sending me to sports medicine rather than rheumatology or orthopedics. I felt my heart sink when he asked this as I figured this was the opening line of another dead end appointment to add to the vault of reasons why doctor’s appointments are a PTSD trigger for me.
He said, “I don’t think there is anything I can do with you without an official diagnosis.”
The second knife, twisting in my heart deeply.
“I do have EDS, I’ve just not been typed for EDS,” I told him as tears swelled in my eyes threatening to burst if he didn’t understand.
Quickly, he rephrased his statement to say insurances would not cover the things I need without an official diagnosis. He said I would need to see the pediatric geneticist as there was not an adult one available at the university. He completed and limited physical assessment and concurred the suspicion of an EDS diagnosis.
He promised the geneticist was well versed in EDS and could connect me with the referrals I need to preserve my quality of life.
I began to tear up.
Finally, I was getting somewhere with this! The validation from the appointment and promise of the long sought after genetics referral gave me more hope in getting appropriate supports and maybe a sliver of quality in life back.
Meanwhile, by this time my issues were even worse as my POTS symptoms were keeping me in bed most of the time. I could barely tolerate being upright in my wheelchair let alone standing and/or walking. The beta blocker to control my tachycardia wasn’t working enough to allow me to stand longer than a minute. My deconditioning from immobility continued to make it even easier for my joints to pop out of place just rolling over in bed. I lost the 2 pounds I gained in addition to another 3 pounds in a month.
Another month went by with my POTS uncontrolled and continued immobility and weight loss. I heard nothing on my genetics referral so I emailed the sport’s medicine doctor and he said he would follow up. Within a few days, I got a call to schedule the appointment.
Fortunately, the geneticist I would see travels my state and had an opening for an appointment in my town the following week! What luck, especially after so many years of struggling to get an appropriate diagnosis for all my issues, this was a great relief! I prepared as much as possible for the appointment. I went over and over what it would be like in my head as I related all the EDS webinars I’d watched to the potential of the experience. My hopes were high.
Preparing for my Appointment with Genetics
For the appointment, I prepared a detailed medical history outline for the geneticist to see the whole picture of my EDS diagnosis. While extremely personal, I am sharing it as a resource to others who may suffer the same ailments, but not yet diagnosed with EDS.
Another beacon from the land of the officially diagnosed going out to those still trying to get validation from the difficult-to-navigate healthcare system. It is a bit lengthy and a little choppy but for authenticity sake, this is what I provided the geneticist to help her thoroughly evaluate and diagnosis my case.
I figured if I could wrap the package of my health history up in an easy to reference timeline this would help the geneticist better direct orders for the management of my case. I was proud of the list’s brevity, despite lengthiness, because summarizing 35 years of illness is no easier of a task than actually living Chronic Illness Life with Ehlers-Danlos Syndrome™, for real. I faxed the document a few days before my appointment so the geneticist could have a chance to review it beforehand. I nervously waited for the day of the appointment, barely sleeping and further flaring my system, but unable to shut my mind off from thinking about how the appointment would go.
Expectations versus Reality: My Appointment with the Geneticist
Online forums were a great help to me in figuring out where I needed to go and what to expect with getting my self-diagnosed EDS and POTS cases diagnosed officially. I knew what treatments and specialists I needed a connection to but knowing does little to make a doctor order these things.
That takes some finesse.
Getting to the geneticist was supposed to be the pinnacle of Ehlers-Danlos diagnosis.[Tweet theme=”basic-white”]Getting to the geneticist was supposed to be the pinnacle of Ehlers-Danlos diagnosis.[/Tweet]
My fantasies included a beautifully written novella for my doctors to refer to when ordering my treatments and therapies. I envisioned hugging the geneticist for taking the time to meet with an adult Zebra like myself. I thought over and over on how I wanted this appointment to play out. The reality was quite different from my geneticist daydreams.
The reality was quite different from my geneticist daydreams.
Appointment day finally came. My hubs accompanied as a resource and support (and a ride as my neuro issues took my ability to drive away in Fall of 2015). We were excited and hopeful.
We sat in a busy waiting room for 4 different traveling doctor’s offices. I quickly spotted another Zebra from across the room. She was a teenager and reminded me of my daughters. I knew she was here to see the geneticist for the same reasons as I’ve become pretty adept at picking out the telltale signs of the EDS gene.
My mind flashed back to my early teenage years. I saw the medical Zebra in me everyone missed at the time.
Because I’d already investigated my geneticist online via the university’s website, I recognized her countenance as it approached to summoning me for my appointment. I was suddenly stricken with an attack of tachycardia and sweats but I quickly regained my composure.
She left us to copy my insurance cards. “Here we go…” I thought as my hubs wheeled me into the small exam room.
She was pleasant enough, but I fear thrown off by my overzealous responses and occasional blubbering of gratefulness during the appointment. There was something familiar about her, but I could not put my finger on it just yet as my focus was in discussing my story. She asked me why I thought I have Ehlers-Danlos Syndrome. I showed her some of my tricks and referred to my medical history along with my maternal family’s poor health histories riddled with all the hallmarks of EDS.
She hadn’t seen my detailed timeline, which was a big disappointment because since my decline I no longer am able to rattle off medical histories on the fly with concise clarity.
I did the best as I could to detail the significant part of my medical history with my hubs filling in the blanks as needed. She did a limited physical assessment of my EDS “tricks” and succeeded those expectations. My Gorlin’s sign was on point. I showed her how I could partially dislocate my shoulder at will. I stretched out my skin to show off its hyperextensibility. I showed her the sucker bite like bruising I get from the pressure of the water coming out of the showerhead.
“You have Ehlers-Danlos with a high suspicion for the Vascular type” She went on to tell me if it isn’t the vascular type, then perhaps a crossover of Classical or Hypermobile Types with vascular type traits.
She went on to tell me if it isn’t the vascular type, then perhaps a crossover of Classical or Hypermobile Types with vascular type traits.
I felt my mind instantly calm its ever racing thought processes and teared up. I said, “I’ve waited for this moment my whole life!”
She urged me to check out the Ehlers-Danlos Society website and made the general recommendations made to one with EDS: increasing vitamin c, aqua therapy and increasing my fluids. We talked about my kids and the likelihood they’ve received the gene as they are displaying early signs and symptoms of the defect already at 19, 18 and 13 years old. We talked about disability and limits on activity for Ehlers-Danlos. She stated that a career in nursing is not exactly the best choice for someone like me, but my kids should be able to make better career choices with the knowledge of their genetics and hopefully avoid overuse injuries from the profession they choose.
Then she showed me her EDS tricks.
This is what I was picking up on as far as her familiarity beyond her general appearance! She outed herself an EDSer but reminded me my case was different because of having systemic involvement beyond the hypermobility. With relief I didn’t have to feel bad about myself and level of debility, I gushed with more statements of gratitude.
The difference between our cases shows the great variance between individual cases of Ehlers-Danlos Syndrome.
The appointment lasted about 45 minutes. She was kind and trying to helpful, but my intense study of EDS over the last year and hyper alert state made it hard for her to tell me anything I didn’t already know. While I was trying to convey my understanding and what adaptations to typical recommendations I made to provide a better quality of life, I think she took me as over-zealous and difficult to “counsel.” Nevertheless, she promised she would be in touch about the testing once my insurance authorized it and she would prepare a report for my primary and specialists regarding my diagnosis of Ehlers-Danlos Syndrome, probable vascular type.
I didn’t hug her as I’d fantasized but I was satisfied with the appointment… hopeful even. I was confirmed with genetics for Ehlers-Danlos Syndrome regardless of the type almost exactly 1 year from the fateful night at work that whole thing off into high-speed motion. I was happy with the outcome, although it minimally met my expectations because I hoped she would write orders for my consults as none of my other practitioners seemed to know what to do with me.
She didn’t seem to know what referrals I would need in this case and was hesitant to provide any direction on my case in regards to my injuries or my neurological issues. She said she would send documentation to report the confirmation of my diagnosis and management strategies and resources to guide physicians in my care. What seemed like an impossible dream was finally a reality! We were so relieved to finally be connected with a practitioner competent with EDS who would direct my other physicians in managing my case.
At last, I felt as my Healthcare was working for me! Even if the genetics appointment didn’t completely fulfill my expectations, the promise of a good report to help with both my healthcare and disability case was enough for me!
Waiting in the Interim Between Illness and Rehabilitation
We waited for the report for a month and a half, which is expected. Each day I begged family members to check the mail because I so anticipated the delivery. By this time, my health was even worse with serious constipation issues and another 4-pound weight loss. Still stuck in bed most days because of my tachycardia heart and desaturating oxygen levels continued to challenge my activity tolerance, my life stayed sedentary. My pain was poorly managed but with all the other issues my last concern was getting appropriate pain management before addressing the most vital issues.
In the meantime, there were plenty of doctor’s appointments whilst waiting to continue stating my case. I saw my GI a few more times and was diagnosed with mild esophageal dysmotility, fluid aspiration with dysphagia and suspected transient gastroparesis with IBS-C. Gi’s concern was my surgery from all those years ago when an outpatient surgery turned into a complicated 3-week hospital stay was coming apart!
I met with a medical nutrition specialist to address the weight loss, malabsorption, and vitamin deficiencies. My BMI creeps closer and closer to the “underweight” category from at 18.9, only 0.4 away from being officially deemed with the diagnosis of malnutrition.
It was a long few months but holding on to the hope the genetics report would gear my doctor’s treatment decisions more inline with the Ehlers-Danlos Society recommendations made it bearable.
The Genetics Report
Adding a geneticist to my team was supposed to be paramount in getting the correct treatments for my Ehlers-Danlos and POTS.
In particular, I was hoping she would recommend an orthopedic doctor or rheumatologists to address my musculoskeletal issues and order bracing. I expected she would refer my cardiologist to controlling my POTS with blood volume expanders and IV fluids. I played through the possibilities in my mind and daydreamed about the document being the document to end any struggles with getting treatment for Ehlers-Danlos Syndrome and POTS.
The letter finally came in a thin business size envelope. I was struck with impending doom. I was expecting a thick manilla envelope and this looked no different than the usual letters I get from the university. [Tweet theme=”basic-white”]If I were a geneticist my reports would be thick enough to need a special envelope to send it in[/Tweet]
I would provide my patients with the most detailed assessments, findings, and correlations that they’d never again struggle for recognition in the healthcare system.
There was a total of 6 pages in the document. There were inaccuracies in the report but generally it was a thorough summary of mine and my families health issues. The rest of the document lacked any of the recommendations I researched as current, approved treatments for my conditions. There were no recommendations for my weight loss, malabsorption, nor the discussion of the higher incidence of GI shut down in the EDS population. There was nothing written to address the debilitating effects of my neck, back, and hip still seriously out of whack! The report was short and sweet but sadly lacking in helpful points for my doctors who know nothing of the true nature of Ehlers-Danlos Syndrome.
Another knife in my heart!
How could this practitioner, with EDS herself, miss some of the most key components to helping me get access to the testing, management, and treatments I need to recoup some of these losses with this genetic plague?
I tried not take it personally. I don’t think I’ll ever figure this one out but this doesn’t stop me from advocating for myself and appropriate medical management. With the vast resources available online regarding management and care with EDS, I am well researched and know what my doctors should be doing. Sadly, most doctors refuse to admit they don’t know it all, especially when it comes to EDS.
https://secure.assets.tumblr.com/post.js Perhaps with time this will change. Until then I bring current research to my appointments and challenge my practitioner’s modus of Operandi with Ehlers-Danlos Syndrome. The only way anything will change in getting recognition for EDS is education on the need to reduce the risk for further debilitation beyond the effects of this disease with early diagnosis and evidenced based treatmentpractices. Too many practitioners subscribe to an inaccurate, outdated and extreme EDS case description. While rarely diagnosed, EDS is all but rare. Once one knows what to look for, one will realize there are EDSers of all kinds of striped patterns!
Even with Diagnosis, Challenges to Healthcare Access Abound
So even with the genetics seal of approval on my Ehlers-Danlos diagnosis, I still must insist upon appropriate referrals. Each system in my body is going haywire. Baseline testing is needed for future reference as this is chronic progressively debilitating, multisystemic disease process proves to be unstoppable.
While EDS is incurable, early diagnosis can change outcomes 100x for the better.[Tweet theme=”basic-white”]While EDS is incurable, early diagnosis can change outcomes 100x for the better.[/Tweet]
Early diagnosis protects against psychological pain and trauma comorbid to unrecognized, invalidated and unnamed illnesses. Genetics should provide a care plan template for the Ehlers-Danlos patient so all team members are on the same page. While my journey to genetics only took a year from figuring my EDS and POTS diagnoses, my symptoms began long before during childhood.
This is just a flash in my thirty-year journey to diagnosis.
By sharing this snippet of my story, I aspire to provide a useful comparison and contrast perspective for those considering an Ehlers-Danlos diagnosis and wondering what getting to a geneticist could potentially entail . If it were not for bloggers sharing experiences like these I may have never found out what was hiding behind the guise of idiopathic illnesses.
Keep in mind, not all cases are as extreme as this just as some cases are much worse.
Please be sure to talk with a doctor about EDS suspicions. Learn as much about EDS as possible beforehand and prepare to dispell common EDS misconceptions. If met with ignorance or complete refusal to consider the possibility, fire that doctor and seek another opinion. That Chronic Illness Life™ shouldn’t include unsupportive practitioners. Don’t waste time with practitioners demeaning to valid concerns or resistant to providing important specialist referrals.
While my experience with genetics was less than I’d hoped for and my physicians are far from fluent on the treatment Ehlers-Danlos Syndrome and POTS, having my genetics stamp of EDS approval made a big difference in how seriously my new physician and specialists took my case. The road to EDS diagnosis is windy and unpredictable. The path is wrought with potential trauma and threats to render one powerless against the system if certain cautions are not considered. If I can save one Medical Zebra from the toil of invalidation by sharing my story than the time taken to construct it is worth it!
Thanks for reading about my experience with genetics!
Please share to raise EDS Awareness and have a blessed day!
Content originally posted on Stomach-vs-Heart.com and migrated to OnlyinthisHead.com because of updates to SVH’s purpose. Read more about the changes coming to Stomach-vs-Heart here.
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Google Ehlers-Danlos Syndrome and you will soon find yourself submerged in a world of chronic pain, joint issues, progressive disability and dense medical explanations for the multi variants of this genetic syndrome.
Or maybe, you’ll just see some cool party tricks and hear nothing of how debilitating the condition can be.
When EDS first crossed my chronic illness possibility dashboard, I was a bit overwhelmed by everything available online. What I needed was a simple way to explain this diagnosis to friends, family members and even most of my healthcare practitioners.
What I’ve come up with is an analogy to start with an easy to understand illustration of the effects of EDS on potentially any system in the body!
Tissues of a non-EDS gene carrying person is like quad-ply toilet paper. Thick, sturdy and absorbent.
Tissues of the EDS Zebra are like bargain toilet paper. Thin, weak, easily torn and leaky!
When discussing genetics, it helps to prime the conversation with something the inquisitor can grasp. Painting a clear visual of what the visible and invisible issues in EDS do help engage the mind, making the massive amount of information a little easier to digest (Pun totally intended to my fellow Zebra warriors)!
Once the visual is out of the way, everything goes down just a bit easier. This is important because EDS is going to make everything just more difficult in general. The syndrome works in complex ways too boisterous for even experienced medical professionals to comprehend.
People with Ehlers-Danlos Syndrome go undiagnosed for many years. Many receive diagnosis too late to reverse the damaging winds of time on the fragile frame of the EDS patient. Recent studies uncover a higher than once speculated prevalence of Ehlers-Danlos Subtypes amongst the population.
What’s more are variants in the gene expression, not yet identified by current testing methods, continue to morph the genetic presentation of the signs and symptoms as new generations of Medical Zebras spring into existence!
Check the Ehlers-Danlos Society’s contribution to spreading EDS Awareness during EDS Awareness Month 2016 with this video entitled #ItsOurTime
As you can see, people with Ehler Danlos Syndrome are going through a lot to get to diagnosis. My own diagnosis journey took roughly 20 years. I feel the pain in the eyes of each of these fellow Zebra Warriors in this video. It is a pain all too familiar to my own journey.
Ehlers-Danlos Syndromes are a group of genetically inherited syndromes with subsets classifications by symptom presentation, medical history, family medical history and if medically indicated, genetic testing.
Read more about the EDS Types on the Ehlers-Danlos Society Webpage.
Ehlers-Danlos is typically diagnosed by a rheumatologist, primary care physician or physical therapist. This diagnosis is optimal confirmed by a Geneticist with a genetic counseling session and if needed genetic testing.
Genetic testing is considered ideal if there is a question of Vascular Type Ehlers Danlos Syndrome due to the higher chance of morbidity due to the complications of the disease. Most types will not kill you or make you stronger…
You only learn how to live life despite suffering. #EDS
Ehlers-Danlos Syndrome is a chronic, debilitating disease. This means there’s no cure. It gets worse with time. Even if it gets better for a little while, all the while it’s working in the background in undermining processes.
The genetic defect implicated in the expression of EDS degrades the quality of collagen. Collagen is a protein in all tissues working to construct the form of the body. Without collagen, our bodies begin to come apart under stress.
The effect is most readily seen in tissues of the skin as it is very stretchy and easily torn, scarred and bruised. At a slightly more insidious angle, tissues of the musculoskeletal system commonly degrade more quickly with one being able to perform great feats of flexibility and the oddities of the double jointed body.
Suffering repeated injuries over the years leads to the progressive decline so many with Ehlers-Danlos live with everyday!
As a result, chronic joint pain and arthritis often develop early. Frequent partial and/or complete dislocations of minor and sometimes even the major joints create heavy tension on the skeleton, ligaments, tendons, joints, and muscles.
Muscle strains, sprains or both occur frequently with superficially benign activity. Injury is also related to an inappropriate awareness of the body’s positioning in time and space (aka proprioception). This most commonly manifested in clumsiness.
These outward characteristics may speak to a deeper malfunction ongoing for certain EDS types. The unluckiest of us suffer from increasingly debilitating effects of faulty collagen beyond the integumentary and musculoskeletal system.
The gastrointestinal, urinary, reproductive, respiratory, cardiovascular and neurological systems all are subject to deterioration given the right variation of the syndrome.
In these cases, ingested proteins leak thru the interstitial spaces of the body. Delayed hypersensitivity immune reactions just below detectable levels on usual laboratory work in aiding the evading diagnosis in going undetected for years to come (or as in my case, decades).
The systems set off alarms pleading for medical professionals to piece together the diagnosis! Instead, the puzzle is left scattered out over the course of a lifetime. Often, the patient is made to feel as though all their problems are psychological without medical basis.
Common Nonspecific Diagnosis Related to Ehlers-Danlos Syndrome
More often than not, EDSers receive harmful psychiatric diagnosis like factitious disorder and malingering. Those with chronic pain related to EDS often require more medication than the average individual to get pain relief due to genetic mutations. This compounds issues with access to care due to chronic pain bias and the need for further education regarding chronic pain in Health Care. (Read more about my experience as a Registered Nurse with chronic pain bias here)
Such a devastating disease!!!
Good thing it is so uncommon. Except it is way more common than one taught.
Unfortunately, the only common acknowledgment with Ehlers-Danlos Syndrome is many health care practitioners across the board lack up to date education, thus reducing the efficacy of care.
An EDS diagnosis and typing is based upon cardinal connective tissue disease signs and symptoms. The variant forms of expression an EDS patient displays must be cataloged and explored to further understand the complexities of this disease. This is our only hope for any advance on early diagnosis and management.
One EDSer may have super extensible skin over their whole body, while another may only have slight hyperextensibility across the skin of the chest and face.
No two Zebras share the same stripes!
For instance, my geneticist also lives with EDS. She deals with joint problems related to the flexibility, but nothing more. This differs from my type as I have lived with prolonged, distressful gastrointestinal and neurocardiogenic problems. These issues are in addition to the musculoskeletal complications haunting all my days since my early childhood.
What with the ever expanding population and the 50 percent chance of EDS being passed on to children, the population of people with varying forms of the genetic condition is rumored to be around 1 and 10 people as opposed to previous estimates of 1 in 5000 people in the population (will reference this someday when I have more spoons, until then check the EDS Society Webinars on Youtube).
Think about this, then look around your social circle.
Who fits the general criteria? I bet you’ll find more than one.
Knowledge of the presence of EDS before life takes its toll will improve the chronic illness lifers prognosis by leaps and bounds. Steps can be taken to avoid a career in which repetitive injuries are statistically more likely to occur.
Early GI dysfunction symptoms may be lessened by positive diet changes, preventing further damage and thereby delaying the sometimes inevitable need for parenteral nutrition.
Exercise to promote joint stabilization will improve pain and lessen the chance for dislocations/subluxations. Bracing and splints can help EDSers get more activity tolerance in lessening the occurrence of pain from joint issues.
There are lots of management strategies geared towards improving the Zebra’s quality of life, but without educating Healthcare Professionals these therapies remain in the fairytale category for the patient living with EDS.
Thanks for reading my explanation of Ehler-Danlos Syndrome! I hope my explanation is helpful and informative.
Thanks for helping raise awareness! It really means so much to me and all the other medical Zebras out in the world!
IMPORTANT: This blog is not a substitute for professional health care diagnosis and/or treatment of any disease. While I do have a medical degree, I am no longer practicing nursing so any information contained herein is for informational purposes only and should be discussed with a doctor educated on the subject. ALSO IMPORTANT: If you think you meet the criteria for any of the Ehler-Danlos Syndromes and your doctor is not listening to you or discounting your research, FIRE THAT DOCTOR!!! That doctor does not care about you and will waste your time. It isn’t worth it. Go with your gut
Content originally posted on Stomach-vs-Heart.com and migrated to OnlyinthisHead.com because of updates to SVH’s purpose. Read more about the changes coming to Stomach-vs-Heart here. Please subscribe herefor updates to Only in this Head: Chronic Illness Life and here for updates to Stomach-vs-Heart: The Art of Survival.