Cycles of Hope and Despair

I started having what seemed like typical back pain in 1982, but by 1995 it was increasing, spreading, and limiting my activities.  After initial medical diagnoses proved wrong and various treatments failed, i was prescribed opiates to control my pain. This was intended to be a temporary solution until the cause of my pain could be found and treated.

One after another, doctors were stumped, while I undertook a decade-long search for a diagnosis and solution to my ever increasing and spreading pain.  I investigated all kinds of potential treatments, both mainstream and alternative, but my hopes for each new “cure” were always painfully crushed when they didn’t work.

Over the years, my enthusiastic embrace of each new diagnosis or treatment led me through repeated cycles of optimism and hope, and then disappointment, depression, and despair. But my persistent pain gave me no rest and prodded me to seek relief over and over.

I. Alternative Medicine

It’s intuitively obvious to me that holistic, gentle, and natural therapies are better than the brute force approach of the medical establishment. These alternative therapies have supposedly worked for many others, so I’m sure they will work for me too and relieve my pain.

Wrong.

II. Intense Medical Testing and “Interventional Pain Management

Invasive tests and procedures will allow doctors to figure out what’s wrong with me. These spinal injections and their aftermath are really scary and painful, but they will show and be able to relieve my pain.

Wrong.

III.  Physical Therapy

I need to learn how to use my body properly and balance my muscles with exercises to improve my pain level. These exercises are very painful and seem to be making it worse, but eventually I’ll get so good at them that they’ll relieve my pain.

Wrong.

IV. Fibromyalgia

There’s no diagnosable reason for my pervasive pain so, by exclusion of anything else, it must be Fibromyalgia. This new Fibromyalgia drug makes me very dizzy and nauseous, but the side effects will fade and this medication will relieve my pain.

Wrong.

V.  Alternative Medicine redux

Since medical options have not helped me one bit, I must have been right about looking for holistic alternatives. I’ve experimented with many alternative therapies and spent thousands of dollars so far, but it’s worth it because I’ll eventually find one that relieves my pain.

Wrong.

VI. Neurological chemical imbalance

My pervasive pain must be related to my depression and anxiety, so new psychiatric drugs will help.  My moods have been mostly under control since I finally found the right antidepressant in 1991. These trials of various other antiepileptics and antidepressants make me feel like I’m going crazy for real, but we’ll eventually find one that relieves my pain.

Wrong.

VII.  Psychosomatic Issue & Addiction

I’ve had to take opiates for years to control my pervasive pain, so it must be addiction that’s perpetuating it.  I’m told that I’m addicted to pain pills and that I’m creating the pain in my own mind so that I’ll feel justified in taking opiates.  Working with a therapist will eventually help me quit pain pills and relieve my pain.

Wrong.

VIII.  Taking matters into my own hands – Research

Digging deeply into a myriad of medical websites, I finally stumbled upon something that matched all my crazy symptoms: Ehlers-Danlos Syndrome.

Right!

IX.  Diagnosis

I wrote down every one of the symptoms I’d ever noticed and matched it to the list of EDS Symptoms I found online and took it to my doctor, asking for a referral to a geneticist to confirm my diagnosis.

With the list and a brief office visit, I was finally correctly diagnosed with Ehlers-Danlos Syndrome. But it didn’t relieve my pain.

My diagnosis confirms that the cause of my pain is not treatable, so I’ll have to learn to live with pain for the rest of my life.


 

This may sound like an unusually convoluted story, but I’m sure many chronic pain patients have had similar experiences. It’s a wonder so many of us persist despite the repeated hope-crushing failures of treatments that we are told can hep us.

Many of the treatments we are subjected to even do harm, increasing the pain or even inflicting new nerve injuries. And then we are told we failed the treatment, when it’s the treatment that has failed us.

7 thoughts on “Cycles of Hope and Despair

  1. painkills2

    Seven times… Because there are so few treatment options for TMJ, I had seven different splints made by various dentists. Tooth resurfacing. All paid for out of pocket, of course. I kept telling myself, surely this one will work. Surely this next one will make a difference. After all, what are the alternatives?

    Well, there’s painful and expensive physical therapy. That’s going to help. Wrong. Biofeedback? Wrong. TENS unit? Wrong. Hypnosis? Wrong. Acupuncture? Wrong.

    Well, how about these injections? Wrong.

    Surely surgery will reduce the pain. Fix the problem causing the pain. Wrong.

    The pain must be in my head, so let’s talk about it. Surely that will help. Wrong.

    You must be depressed. Here, take these pills and you’ll feel better. Wrong.

    Well, there’s nothing we can do. Sure, most of our therapies made it worse, but you never know until you try (and spend). Learn to live with it.

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  2. Pingback: Voices of pain patients | All Things Chronic

  3. DREW5000G

    I can empathise with the constant cycle of hope and disappointment while all the while in pain, but i am seriously hoping that my neck calms down in a while. and i have learned to deal with the pain in my hands and sometimes arms. Life is strange in that one person lives through one thing and i begin to be think that i am lucky as my lot could have been different, doctors, i had a little run in with my surgeon just before going in, i wanted something before i went in and everyone was saying get ready cos the surgeon is coming like he is God. I asked him for it and he gave me an alternative, we are humans too and not robots we usually have our own ideas especially when it involves ourselves and they dont seem to like that too much,

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  4. Brain Storm

    This sounds so similar. While I was diagnosed correctly, I was the one to find effective treatments through a long, costly, arduous process of research and trial & error. Thanks for sharing your story.

    Liked by 2 people

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  5. Connie Galarneau

    I, too, can identify with your story. I have lived with chronic back pain for 20+ years. Undergone injections too numerous to count, physical therapy, tens units, the meds for “nerve” pain that made me sick, even had surgery trying to correct the pain without helping. The only thing that helps is opiate meds and finding a dr willing to prescribe necessary meds is hard enough. Then, out of blue, office closes for one reason or another, search begins again. Then, injections begin again, trial doses of this and that, hope diminishes and life continues.Living with chronic pain is a nightmare that few can relate to and I realize reading your stories and the comments posted that I’m not alone fighting this battle.

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  6. Pingback: Understanding long-term opioid prescribing | EDS Info (Ehlers-Danlos Syndrome)

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