By Diane McKay

Good firbomyalgia docMy fibromyalgia treatment journey began two years ago with being finally diagnosed by a rheumatologist after I’d probably had fibro for at least 10 years. She kindly told me she’d be referring me back to my primary care provider for further follow-up and treatment.

However, the PCP was woefully unprepared to treat fibro, even though I was living in a major California city. I’m absolutely certain I knew more about fibro than she did. My primary life-altering symptom is pain, and she somewhat hesitantly agreed to prescribe tramadol, at my request, with the understanding/agreement that I’d also try the FDA approved drugs often prescribed for fibromyalgia.

I spent the following several months “guinea-pigging” with mirtazapine, duloxetine, and others that I cannot now remember, each of which caused me severe dizziness, mental confusion, forgetfulness, nausea, shakiness, and sleeplessness – without any relief of my fibro symptoms. It took weeks for me to get over the side effects of each of these medications before I would start the next round.

At the same time, I was working a job that required intense focus and concentration – which I ultimately lost due to the effects of the medications.

Satisfied that I had given these drugs a trial, the doc allowed me to continue with the tramadol, which greatly helped with the pain. However, she adamantly opposed medication to help me sleep. I got another online job and with the pain control managed to keep it, and eventually my insurance changed. When I had an appointment with my first doctor in that system, she informed me that she was “old school” and “didn’t believe” in fibromyalgia.

I requested tramadol, and she reluctantly agreed to prescribe it, but only after I had given her a print-out of the medical journal evidence presented in Dr. Ginevra Liptan’s fibro manual re: tramadol specifically helping fibro patients. When I asked for sleep medication, she balked: “After you’ve had three or four nights of no sleeping, you’ll be so exhausted that you will sleep.”

I immediately changed doctors, and fortunately ended up with someone who at least believed fibro was “a thing.” Because I had already tried several FDA approved drugs, these were no longer pushed on me. However, there wasn’t a doctor that  I consulted with for fibro would prescribe Rx sleeping meds – period. “You’re a senior – you could die in your sleep from respiratory failure.” No doctor since has agreed to provide sleep meds.

Because of inability to earn enough money to support myself, I ended up losing my housing and moved in with kind and generous friends. In a wealthy area of southern California, the urgent care I went to for a tramadol refill chastised me, made me go to a pain specialist, and told me I “needed” a neck MRI, which I refused. They then hooked me up to what appeared to be a gigantic TENS machine, which I guess they thought would “cure me” but only caused more pain.

They drug-tested me, and finally reluctantly gave me a month’s worth of tramadol and sternly admonished me not to come back. When that prescription ran out, I went to a doc in another county, who Rx’d tramadol without question after I presented him with several months’ worth of empty tramadol bottles that I had been carrying around while living out of backpacks and duffel bags. I continued to use this “method” of “proof” successfully and am now back on my feet and permanently settled.

All this medication-chasing was enormously stressful. I absolutely require this drug to function and keep me out of the worst pain. I take the smallest dosage, but it’s vital. According to the DEA, tramadol is a  schedule IV drug and has a “low potential for abuse and low risk of dependence.” And yet, in my experience, it’s been pretty much treated like oxycodone, a schedule II drug.

Lessons learned: If your doc doesn’t know about fibromyalgia or does not believe it is a real disorder, change doctors. If you have a choice of docs, research where they went to med school. If it was in a major city and/or they interned or did residency at a big research hospital, they should be familiar with fibromyalgia. Search their name on PubMed to see if they’ve written any medical journal articles, and if so, on what topics. Also find out how patients have rated them.

You may have limited choices. You can call office staff in advance to ask how many patients with fibro the doc has treated, and even ask if any of their fibro patients would be willing to talk to you.

What do you need? For me, all I require from the doctor was to continue to prescribe my pain medication. I’ve learned an enormous amount of useful information from support groups, fibro books, webinars, online sources, etc., and feel confident in the things I have learned to do to help myself. Be upfront about what you need. If your research has you wanting to try a specific thing, ask for it and explain why. Providing research evidence should help your case.

Can you afford, and do you have need for or want a functional medicine or integrative medicine doctor? The same strategies apply.

Support groups – they’re not everybody’s cup of tea, but I encourage you to go at least once, or find an online version. Through this source, I’ve learned about local docs that fibro patients liked. And the most important support groups pearl I received was being recommended Ginevra Liptan, M.D.’s book The Fibro Manual, which was very comprehensive and a life-changer.

Good docs usually know other good docs. Do you have an OBGYN, endocrinologist, neurologist or other specialist you like? Ask them if they know any PCPs or doctors who treat fibro that they can recommend.

If you’re fortunate enough to live in an area where there’s a doc who’s written a book on fibro (Portland, Oregon, for instance), it might be worth checking them out – either as a patient or for a referral to a fibro doctor they can recommend.

Get your “routine tests” – colonoscopies, mammograms, blood work, etc. – so that you don’t have to spend the 5-20 (?) minutes of your appointment time being “requested” to schedule those. Speaking of short appointment blocks, see if you can schedule a longer visit in advance and/or ask the doctor if he/she is willing to discuss and help you with different aspects of fibro at different visits, or a series of visits. This is a complex disease that deserves adequate consultation time.

If you have evidence – through books or PubMed articles or here on the National Fibromyalgia Association’s web site – of a treatment or medication you’d like to try, print out the information for the doctor. This has been successful for me numerous times. They can’t argue with data and evidence.

You’re not alone in this. The good news is that today, there is considerably more known about fibro and many more resources to tap into. Good luck in your journey toward better health!