My Journey Through Non-Opioid Pain Treatments

My Three-Decades-Long Journey Through Non-Opioid Pain Treatments, Therapies, and Medications

The first sign of my chronic pain was an increasingly annoying backache in 1982, which kept worsening over the next decade and a half until it became almost disabling. By then, I was also beginning to have sporadic pain in my hips, knees, shoulders, upper back, and neck.

In 1995 my neurologist started me on opioid therapy so that I could keep working and stay active.

I started taking opioids so I could keep working, remain active, and continue my search for the cause of my pain. I had no idea my pain would never be cured.

From 1982 until my diagnosis in 2011, I did as the CDC proposed guideline suggests, and tried many medical and alternative treatments, therapies, and medications to ease my pain. I spent thousands of dollars on treatments that were not covered by insurance, but none were effective.

As it became more intense and frequent, my pain prevented me from being “myself”: athletic, outdoorsy, smart, and always busy.  My desperation grew with my pain, and I became willing to invest whatever money I had to find a way to ease it.

I assumed that once we knew the cause, whatever was causing my pain could be fixed. It never occurred to me that it would not be treatable and that my pain would be permanent.

Below is the story of my journey to find relief from my pain through non-opioid medical treatments

  *             *             *             *

For many years after 1982, my increasing pain was mostly in my low back, so I and my doctors always assumed I had a back problem. I subjected myself to all kinds of interventional procedures: nerve blocks, epidurals, and even surgery to “fix” it. I experienced some dramatic side effects, but no pain relief.

I did my own research and found out about biofeedback, which I believed would definitely help my pain. Unfortunately, my insurance would only pay for a few sessions, and that was not enough to make any changes.

I was enthusiastic about and tried physical therapy multiple times, but the exercises they prescribed were either ineffective or downright damaging. I didn’t know I had EDS, and the therapists didn’t notice it either, so the exercises they gave me weren’t modified for people with EDS who have to be careful which muscles are pulling on what.

In 2001 I was diagnosed with Fibromyalgia, mainly by a process of exclusion because they couldn’t find any other reason for my pain. But that did not explain why I had had unusual pains and other odd symptoms since childhood, so I knew there was more going on and I kept searching.

Then my doctors tried to convince me the opioids I’d been taking for six years weren’t helping, even though they had kept me active and working. However, I consented to try the non-opioids used for Fibromyalgia: Lyrica/pregabalin, which made me incredibly dizzy, and Neurontin/gabapentin, which put me to sleep.

An early clue that my pain wasn’t coming from Fibromyalgia was that neither medication had any effect at all on my pain. I stayed with the neurologist who was prescribing my opioids.

I saw five chiropractors over three decades and had the same experience each time. The ligaments around my spine and my SI joint are so loose that adjustments only hold for a few minutes or steps before they slip out of alignment again.

I tried acupuncture three times over a period of two decades. The first was short and ineffective. The second time was also short because the acupuncturist was wise enough to tell me that he couldn’t help me, and the third was a long and expensive trial which had no effect whatsoever.

I also tried a massage of my neck, shoulders, and upper back, which was incredibly pleasurable. However, once my muscles went slack, my spine and other joints drifted out of alignment due to my loose ligaments.  That made it exceedingly painful to stand up and carry my weight again. The resulting misalignment in my neck brought on a blinding headache, so I never tried that again.

Then my doctor suggested I see a psychiatrist who she thought might be able to lessen my pain with psychiatric drugs since he’d had success with pain patients in the past. I tried half a dozen antidepressants, antiepileptics, and mood stabilizers but none had any effect on my pain.

So I tried the Stanford Pain Management Program. Without more than a glance at me, they told me that the first thing they would do is take away my opioid pain medication “because it doesn’t work for fibromyalgia”. This was news to me because they were certainly working very well for me.

They barely examined me or questioned me about my pain, yet they were certain I should stop taking opioids immediately. I began to understand that they were planning to give me treatment for my non-existent addiction and not for my incapacitating pain, about which they clearly communicated their skepticism.

I had to decline the program because I would not give up opioids without an effective pain-relieving replacement that could be slowly substituted, correctly titrated like a new drug.

I believe that until some alternative method of pain control has been proven beneficial for an individual, opioids in effective doses are appropriate and necessary.

By 2011, I had given up hope that I’d ever find the cause of my pain.

I was frustrated and angry with medical professionals who would not believe my reports of pain and suggested I was only addicted. I became depressed by the prospect of having the rest of my life controlled by my pain. This prompted me to start psychotherapy, and the person I started with happened to be a specialist in addiction.

In just a few sessions she confirmed I was not an addict, just a person in pain. She explained to me the many ways my thoughts, words, and actions didn’t match those of an addict. She reassured me that the difference was obvious to someone experienced with true addicts, because:

Addicts/abusers take opioids to withdraw from life,
Pain patients take opioids to participate in life.

The long-sought cause of all my symptoms and pain was finally correctly diagnosed as a connective tissue disorder, Ehlers-Danlos Syndrome (EDS). Unfortunately, because it is caused by a genetic flaw…

There is no cure; not for my EDS, not for my pain.

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3 thoughts on “My Journey Through Non-Opioid Pain Treatments

  1. netflixtvguide

    Your journey is so much like mine it is so gratifying to hear. I still don’t have a definitive diagnosis but finally found a rheumatologist who says yes of course anyone who has been in pain for 30 years will have fibromyalgia but it is not necessarily what is causing the pain …not to mention that pain rehab bamboozle…they’ve had that at the Cleveland Clinic since 1979 apparently …trying to tell you that you don’t have pain because we haven’t discovered your disease yet! Here try to relax away your pain! Anyway I’ve definitely got too much arthritis for a 45 year old and I my radiating sciatic pain wasn’t from my back but from my hip—a congenital deformity which is probably why I never loved running…oh and hypermobility …guess it’s not normal to be able to put your hands flat on the floor when you have arthritis in your back…but hey why don’t you take some Tylenol ?

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    1. Zyp Czyk Post author

      Re: “anyone who has been in pain for 30 years will have fibromyalgia but it is not necessarily what is causing the pain”
      Your rheumatologist is a wise man – it sounds like he really gets it.
      Fibromyalgia seems to come on after some unusual stress on the body, and prolonged pain is stressful enough that it could very well trigger Fibromyalgia.
      I do feel some occasional vague pains that I think might be fibromyalgia, but there’s so much overlap between EDS and fibromyalgia pain that it’s impossible to tell the difference.
      I’ve read that fibromyalgia also involves “central pain syndrome” which also comes from prolonged pain.
      What a lovely mixed dish it makes!

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      1. netflixtvguide

        Yes but I first went to a Cleveland Clinic rheumatologist who heads the fibromyalgia clinic there and she said my joints were all fine but that because id been in pain since I was 10 I had fibromyalgia and therefore it was caused by stress and so I should go to their pain rehab clinic and talk to a psychologist …was also referred there by a neurologist who didn’t think the Maxalt for my migraines would help me because I’m on Percocet. I was just looking for an alternative to naproxen as my body really can’t handle NSAIDs anymore after 30 years of taking them. She gave it to me anyway and of course it works. She only diagnosed me with migraine because my sister and mother have them, but my headaches have always been different than there’s and not classic migraine by any description. My old physiatrist in New York City saw recent scans of my neck (this was from my first injury from a backward somersault when I was 10 and how can that be normal for a 10 year old?!) he gave me a quick trigger point cortisone injection in my neck and I didn’t have any headaches for three months. Sigh. Modern. Medicine. I miss this doctor as he always gave me my pain meds without question, only having to see him every six months and always a two month supply. When I’ve got an extra $150 bucks and am in NYC I always try to see him. Have to get an MRI of my neck before my new pain management doctor in Cleveland will do them for me but she’s good. She’s actually did her residency at the same hospital in NYC as my doc and knew who he was. She’s young and great and refers often to our police state medical world.;)

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