I encountered my first significant controversial diagnosis when we opened WholeHealth Chicago in the mid-1990s. The concept of combining conventional and alternative medicine was new to the Midwest and right away we began seeing patients who came to us with chronic symptoms but no solid diagnosis.
One group that stood out was made up of primarily women who had longstanding and severe widespread muscle pain along with a plethora of other symptoms including severe fatigue, headache, poor mental focus, and irritable bowel.
Virtually everyone in this group had been told there was nothing wrong with them, that their tests and x rays were all normal, and that they were “just depressed.” When they did their own research (library, no internet yet) or spoke with their massage therapist or chiropractor they may have heard something about fibromyalgia. However, most rheumatologists were dismissing this diagnosis as non-existent and would send them for psychiatric help.
The well-intentioned psychiatrist was equally unhelpful, usually saying something like “You’re not mentally ill and you seem depressed because you’re in pain.”
Decades of pain and gender disparities
I remember women telling me about their experiences with decades of chronic daily pain, suffering because some doctor insisted there was nothing wrong with them—that they were merely lazy and neurotic. Women in this group also underwent totally useless back surgeries for neck and back pain and equally useless hysterectomies for pelvic pain, both now clearly associated with fibro.
It was through fibromyalgia that I first learned about gender disparities in effective pain management. Many studies have confirmed that if two people, one male and one female, enter a typical physician-directed pain management center with precisely the same pain, the man will almost always leave with better pain management.
Read this piece from Harvard to better understand the shocking differences.
“Real” disease vs. imagined
The reason the rheumatologists didn’t believe in the existence of fibromyalgia was that they, along with virtually the entire conventional medicine community, were unreservedly committed to the erroneous belief that for a disease to be “real” there needed to be some evidence that would show up during diagnostic testing.
The standard of proof included abnormal lab tests, x rays, and biopsies. Even some chiropractors, unable to find consistent musculoskeletal abnormalities during their examinations, were skeptical about fibromyalgia.
Although case reports of chronic widespread muscle pain had been described in the 19th century, the first medical article using the word “fibromyalgia” appeared in a German medical journal in 1976. My 2000+-page textbook of internal medicine devoted fewer than 15 lines to fibromyalgia, included the words “controversial diagnosis,” and advised psychotherapy and antidepressants while warning against pain medicines of any type for fear of physical or psychological dependence on drugs prescribed for a “non-illness.”
WHC rents an auditorium
Back to WholeHealth Chicago in 1997. We were seeing dozens of fibro patients and decided to rent the auditorium at Northwestern Law School and invite the public to a free symposium on fibro. Our guest speaker was Jacob Teitelbaum, MD, author of the best-selling From Fatigued to Fantastic. The room was filled beyond capacity and soon, because of our integrative approach, we became a go-to place for fibro. Later, with my editor Heidi Hough I wrote Healing Fibromyalgia, about WholeHealth Chicago’s approach to fibro.
Now, more than 20 years after our symposium, most physicians believe that fibromyalgia exists, though no one is exactly sure why. The source of this newly attained knowledge has been, to no one’s surprise, Big Pharma, which had some products to sell and needed to teach physicians how to use them.
Everyone has been helped considerably by the statistical data accumulating on fibro. It was estimated that somewhere between 2% and 8% of the world population (mainly women) were affected, with the US estimates alone pegged at 5 to 7 million people, clearly a bonanza for some lucky Big Pharma company.
The winner was Pfizer, and that’s a story itself
All by themselves, doctors had discovered that the epilepsy medication gabapentin (brand name Neurontin) actually relieved fibro pain in about one third of patients. Gabapentin had been developed by Parke-Davis, which was acquired by Pfizer.
Word of this spread quickly, especially via pharmaceutical representatives (“Dr. Jones down the street is using Neurontin for his fibro patients with great results”). But while prescribing Neurontin for fibro is perfectly legal (it’s called off-label prescribing, meaning the doctor is prescribing it for a condition not officially FDA-approved), to promote a drug for off-label prescribing is super-illegal.
No matter how safe and effective Neurontin was, it could not be promoted for fibro by the manufacturer because it had not been approved by the FDA. Ultimately, Pfizer paid $431 million (!) in fines for basically spreading good information to doctors. Don’t be sad, though. In the end, Pfizer did very well for itself.
Neurontin was soon to go generic anyway, killing the profit stream. But over at Northwestern University, medicinal chemist Richard Silverman, PhD, tweaked a similar molecule into a substance called pregabalin that was almost as effective as gabapentin for fibro. Note the “almost.”
This time Pfizer followed the rules and you’ll recognize pregabalin under its brand name Lyrica. Because of one of the best royalty contracts ever negotiated with Big Pharma, Northwestern has added about a billion dollars to its endowment fund from Lyrica and Dr. Silverman has earned many millions himself.
Gabapentin/Neurontin is actually superior for pain control, has fewer side effects, and costs $12.00 vs. $450 a month, but shhh don’t tell anyone.
More fibro drugs
The other two Big Pharma offerings for fibromyalgia (Cymbalta and Savella) are basically antidepressants and not much better than other antidepressants at treating fibro, which means not too good. All three FDA-approved fibro drugs (Lyrica, Cymbalta, and Savella) were graded C- minus by the American Rheumatology Association, the grade determined by effectiveness and side effects.
I virtually never prescribe the three approved drugs because of their low levels of effectiveness and sometimes really unpleasant side effects. Lyrica’s main side effect is weight gain.
By the way, despite government alarmism and many back-and-forth arguments among themselves, both researchers and physicians who work with fibro patients believe that low-dose opioids (either short acting or extended release) like tramadol are about the best available pharmacologic treatment for fibro.
When I do prescribe meds for fibro, I start with a time-release version of the muscle relaxant Flexeril (cyclobenzaprine) called Amrix (also frequently denied by insurance companies) and a time-release version of the pain med Tramadol.
In comparison to low-dose opioids for pain management, medical marijuana is getting lukewarm reviews from fibro patients. However, using medical marijuana definitely improves sleep and, as any fibro patient will tell you, after a good night’s sleep the fibro is much better the following day.
But at least Big Pharma with its new fibro drugs did manage to teach US physicians something about fibromyalgia. Pfizer developed many continuing medical education courses and held meetings in posh resorts and restaurants, filled with discussion groups and sales pitches.
And Northwestern, spending some of its Lyrica largess, converted the Rehab Institute of Chicago into the Shirley Ryan AbilityLab, a physical medicine center listing fibromyalgia as an area of expertise.
Quite an about-face from the “no such thing as fibromyalgia.”
Be well,
David Edelberg, MD
Hi Elizabeth
We’re not taking new fibro/migraine patients for pain medication management only. Our integrative program would require participation in cognitive and/or occupational therapy, myofascial release, acupuncture and nutritional counseling
Dr E
Hello! I was diagnosed with Fibro in 2009, as well as, spinal stenosis & scoliosis with a double curve in my spine. Also, in 2004 I was diagnosed with Migraines. I see a pain specialist for these ailments, and I am treated with Belbuca 300 mcg every 12 hours, 1 Norco 10/325 3 times a day for breakthrough pain, Tizanadine 2mg 3 times a day,topax, & rizatriptan for migraines as needed (currently they are trying Botox injections every 12 weeks for the migraines). When I went in for this month’s appointment they made a comment that eventually I’ll be weaned off my pain medication because the only treatment for fibro is exercise. I am finally at a stable place with my pain & have been so for a while. I can’t exercise, clean my house, or even complete a full day of work without taking my medication. Does WholeHealth Chicago work with patients that have found a working regimen to continue that regimen in circumstances like mine, where it seems the Dr is getting pressure from Government & others sources to change what they are prescribing, even though it is clearly working?
Elizabeth
I developed Fibromyalgia in 1992 after giving birth to my son, I was also one of the first women who were told, before I was even pregnant, to take 1,000mg folic acid daily to prevent spinal birth defects in the fetus. All was well until a few weeks after the birth, I was getting very tired and then the pain started.
Fast forward to 2012, I read about the MTHFR gene variations that can cause lack of energy and pain. I told my pain management physician and he ordered the test. The results came back that I have two copies of the 667 gene “mutation”. With this “mutation” you are unable to convert synthetic folic acid into folate that the human body needs for the nervous system function properly, with one copy you sure able to convert with approx.40-50% efficiency however with two copies efficiency drops down to approx.10-20%. This gene also decreases your bodies ability to detoxify chemicals and heavy metals, and also to make hormones and hormone conversions like turning T4 into T3. Without enough T3 in the brain dopamine and serotonin levels will be low,causing depression and increasing pain levels throughout the body.
My endocrinologist always told me that my thyroid levels were “normal”. Normal was at the very low end of the scale. By taking three Cytomel 5mg every eight hours in addition to Synthroid 0.55mg, thus getting my thyroid levels into the middle of the so-called “normal” scale, in only 3 days I was able to take only half as much pain medication AND my pain levels dropped from a level of 7-8 when taking two Cytomel a day, down to a level of 2-3 on three Cytomel a day.
They used to think only about 5% of the population might have one of the variations that impair conversion of folic acid and hormones, etc. They now know 40-60% of the population are carriers of these genes. The problem was made worse in 1998 when the US government mandated ALL grains must be “enriched” with folic acid, so I no longer eat any grains or any foods that are “enriched”. I also eat organic veggies and grass-fed meats to avoid as many chemicals as possible.
In addition,my pain management physician uses a machine called Hakomed, from Germany, for whole body treatment that dropped my pain levels from a high of 9 before my very first treatment to a level of 5 after a mere 45 minute treatment.
Thru these changes I went from taking six Methadone 10mg a day, six Tramadol 50mg a day, and six Nucynta 75mg a day in 2012 which kept me at a pain level of 7-9, to now taking only half a 75mg Nucynta four times a day and with a Hakomed treatment once every four weeks I now enjoy a pain level that stays around 2-3.
I will be happy to talk to anyone who would like more information about my experience. There is help for Fibromyalgia, but drugs are not the solution, they are useful to help reduce pain until your body repairs itself. I hope to be able to discontinue the Nucynta I take over time. My sleep has gone from waking up every 30 minutes from the pain, to being able to sleep 6-7 hours straight without waking up at all with a morning pain level of 2. It takes a physician who will work with you to get to the root cause and help you make what changes you need to make in order to get better.
Aelxa Hill
Thank you for telling my story and the story of the many people who suffer from this debilitating condition.
Marilyn Feingold
I have had a diagnosis of fibromyalgia since 1995. I’ Been on gabapentin about that long although I did have a period of time without it. I also have nerve pain and it helps that. I was put on gabapentin for seizures, but knew of some people using it for nerve pain. It does help for that. But, one of the side effects is weight gain. I’m also on an opioid (percoset). I recently went off my morphine sulfate er. For anyone who thinks that opioids don’t help fibro, I will tell you you are wrong. My pain has increased tenfold since going off ms er. And, for me and many others with fibro, and chronic pain we have not become addicted. Yes, we have to wean off. But I have to wean off neurontin too.
Sara Ma
on gabapentin for restless (husband has scars to prove it) did not know it was helping with fibro pain too. i guess that explains why, when i had to short myself on guaifensin for a week i was not in as much pain as usual.
cheryl
I was prescribed Gabapentin for fibro by a rheumatologist and it left me groggy and not much else. Turns out I had chronic Lyme and co-infections. Gabapentin is also now being abused.
Seka Palikuca
Hi Katie
Your progesterone comment brings up the interesting issue of fibro appearing (or worsening) during perimenopause as hormone levels start to drop. Here’s an aticle that may have already read:
https://www.consumerhealthdigest.com/joint-pain/fibromyalgia-and-progesterone-deficiency.html
If you have fibro and in perimenopause years, it is certainly very safe to try a couple of months of progesterone, either the over the counter variety or by prescription
Dr E
Our graduate students here at Northwestern have greatly benefited from the Lyrica largessse! I wish it were more helpful to fibro sufferers.
Barbara Newman
This is an interesting article. What about progesterone?
Katie
Thank you for this article. Many fibromyalgia sufferers don’t know that they may have Lyme disease. Lyme should be tested.
Mary Beth Phelps
Worked for Pfizer 15 years ago and have since done a 180 with my belief, or lack there of, in the health care system. I didn’t sell Neurontin but had friends that did. I remember the big push to off label sell it for fibro. Wouldn’t go back even for the all that money. Having since experienced Fibro myself, wouldn’t even think of taking Neurontin or Lyrica. Love all of your articles but this one is my favorite!
Amy
Fantastic article! Thank you. I am looking forward to the entire series– and so wished you’d included IBS in your list. Maybe the second series?
Would it be possible to learn more of WHC’s non-drug approaches to fibro? (Perhaps this is resident on the WHC site, and I just haven’t spent the time there to find it. If so, I apologize!) We have had clients/patients who respond wonderfully to very simple acupuncture; for example, Quchi, Waiguan, Hegu, Zusanli, Yinlingquan, Taichong (I am curious to experiment with unilateral needling upon the suggestion of Emperor’s College (Santa Monica) R Chu but haven’t done alot of it yet. Imagine, just 5-6 needles!), and then others who do not.
I wish there were a better way to ID prospectively likely vs. unlikely acu responders. For the latter group, the addition of moxibustion (2-3x on 2-3 key needles) can often turn the tide for initial NRs, but not everyone has the ability or inclination to smoke up a clinic, I understand. Finally, we have found the modified TCM formulas Du Huo Ji Sheng Tang and Shu Jing Huo Xue Tang effective in a good number of folks. We often use the AC-Q Tabs and Mobility 3 versions of Health Concerns. Thank you.
Michael Barr
Very good review of the fibromyalgia diagnosis which occurred for me in the mid 1990s. I am still battling the poor to non-sleep component and need to follow through with the medical marijuana. My major pain in in the lower back and knees which may or may not be related.
Nancy Kintzel