My Comment about Opioids on CDC guidelines

My Story, posted as comment about Opioids on CDC guidelines

– After trying everything else, only opioids work for my pain from a genetic connective tissue disorder

Until I was disabled by the progressive pain and fatigue from Ehlers-Danlos Syndrome (a genetic connective tissue disorder) and Fibromyalgia, I was very healthy, smart, and strong. I was a high tech systems engineer at companies like Apple and Yahoo and my favorite recreational pursuits were competitive outdoor sports: half-marathon trail runs, 100-mile bicycle rides, and 50-mile horseback endurance races.

Pain from an undiagnosed genetic disorder had been increasing since childhood, and it started interfering with my job in 1989. After many trials of other treatments failed (see below), my doctor prescribed opioids. Opioids allowed me to continue working in Silicon Valley for 13 more years until 2008.

While taking opioids, I continued trying all kinds of non-opioid pain treatments, but without success. I reluctantly settled on taking opioids to remain functional because the pain is too great to tolerate indefinitely.

Here is a list of non-opioid therapies, like those you recommend, which I’ve tried and found ineffective:

  • interventional procedures: nerve blocks, epidurals, and even surgery
  • biofeedback
  • physical therapy
  • massage
  • drugs used for Fibromyalgia: Lyrica, Neurontin, Cymbalta, Savella, Soma, Flexeril
  • Lyrica,  Neurontin, Cymbalta, Savella, Soma, Flexeril  (only muscle relaxants were helpful)
  • chiropractic
  • acupuncture
  • psychiatric medications: antidepressants, antiepileptics, mood stabilizers, even antipsychotics
  • Stanford Pain Management Program
  • psychotherapy, including an addiction counselor who determined that I am not an addict, just a person in pain.

I was finally diagnosed with Ehler’s-Danlos Syndrome by a geneticist at Stanford University in 2012, but finding the cause of my pain did not lead to a cure. EDS symptoms are caused by defective connective tissue, so it can appear in any part of my body, and because the defect is genetic, it cannot be cured.

When a new doctor once insisted I stop taking opioids, I tried doing without for a few months. Any walking, standing, or even sitting upright was too painful and I spent my days laying on the couch or in bed.

With my pain uncontrolled, I became depressed and suicidal. I was rescued by an addiction therapist who determined I was not an addict, just a pain patient, and insisted I find a different doctor who would prescribe opioids again.

Through all the ups and downs of various treatments, my dose of opioids is stable and was only increased once in 20 years. Since 2005, I’ve been taking what is considered a very high dose of morphine equivalent daily without bothersome side effects.

I will be in pain the rest of my life, and only opioids allow me to be somewhat functional. I can concentrate and be free of the distraction caused by pain, focused enough to think, calculate, and write.

Instead of laying on the couch all day, I can do some physical therapy exercises, do light chores, sometimes visit friends and support groups, and can remain mostly independent. Without opioids, I would be a prisoner indoors with constant pain, a lifestyle I do not consider worth living.

I will never get any semblance of my successful and fulfilled “old life” back. There is no cure for the pain I have from EDS.

Only opioids have been effective in relieving my pain, so please, please, do not ask my doctor to stop prescribing them for me.