Chronic Pain Rehabilitation Programs: A Personal Perspective and Call for Spoonie Opinions

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. Digging passed the 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. 

Ableism: discrimination and social prejudice against people with disabilities.

Questionable Practices

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.

“The rich become richer and the poor become poorer is a cry heard throughout the whole civilized world.” ~ Friedrich Schiller

On the underbelly, the neighborhoods scattered throughout Cleveland Clinic’s complexes suffer poverty with little show of community support from the medical conglomerate. Accusations of a snake oil salesman approach to healthcare echo throughout the less traveled pages of Google, pointing out how Cleveland Clinic uses practices unproven from the realm of pseudo-science.

Pseudoscience consists of statements, beliefs, or practices that are claimed to be scientific and factual in the absence of evidence gathered and constrained by appropriate scientific methods (Wiki).

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?

Maybe.

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?

Please share and reblog with more opinions. 

Thanks in advance!

2 Replies to “Chronic Pain Rehabilitation Programs: A Personal Perspective and Call for Spoonie Opinions”

  1. I am just near-speechless. What you experienced at the appointment you mentioned is appalling…then add to that the finding that the Cleveland Clinic program you were referred to is ableist and harsh at the best, and downright abusive at the worst…and I am livid on your behalf. Due to your blogging and our personal communication I know a small portion of what you have been through, Dawn. I am so proud of you for bringing this to the attention of others. I plan to share, because chronic illness patients are deserving of so, so much more from healthcare and government. After reading this post, I am somewhat overcome with emotion at the moment. I don’t know what should be done, but this definitely should not go unheard of by the chronic illness/chronic pain community, and society at large.

    1. Thanks for your comment and your friendship Veronica <3
      Sorry for the delayed response but the comment went to moderation and my brain fog let it slip by my attention!
      And I'm still dealing with all the formalities of getting switched over to Ohio care... All that Spoonie stuff you know all too well <3

      I had another blogger reach out and discuss personal experiences with Cleveland Clinic, similar and confirmatory. This makes me realize this is happening to a lot more of us not talking about it. Thanks for sharing so much <3 I also feel overcome with emotion about the experience at times still but the support from my fellow spoonies makes it feel much less overwhelming. Slowly but surely, I think I am getting back to myself and hoping to be more engaging again as more supports are put in place but it is such a long needlessly torturous road to appropriate care ;(

      Thanks again for showing up in my comments <3 We need to catch up in realtime soon!!! BTW, I am in Southeastern Ohio now. Close?

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