Bitter Divisions and Murky Motives: Fibromyalgia Treatments
In yet another display of their unlimited zeal for the treatment (not prevention, mind you) of mysterious and “murky” illnesses (usually, believe it or not, with the aid of expensive pills), pharmaceutical companies last year spent hundreds of millions of dollars (including $6 million in grants to “non profit” medical conferences and “education campaigns”) to establish the controversial fibromyalgia as a legitimate, serious illness requiring the kind of treatment only Big Pharma could possibly provide. On the surface, this seems like a relatively selfless act of goodwill and honest research – just a couple of multinational pharmaceutical companies tossing their money around and savin’ lives… right?
You know it’s not that simple. When we look a little deeper (and we stress “little”; we’re talking barely skimming the surface), the facts don’t seem to add up.
For one, fibromyalgia is still a hotly contested topic in the medical community. Critics point to the lack of diagnostic testing, the fact that there’s no clear cause, and the overlap the symptoms have with other, more accepted diseases as reasons to question its status as a “curable” illness. There’s no question that patients are obviously in pain, but experts are unclear whether pumping them full of drug cocktails is the best treatment.
Secondly, those “non profit” conferences dedicated to “education” about fibromyalgia don’t look so honorable when you realize they’re meant to promote the use of their own drugs; and that $6 million in grant money starts to look like a pretty sound investment in light of the enormous bump in sales Pfizer’s Lyrica and Lilly’s Cymbalta enjoyed between the first quarter of 2007 and the last quarter of 2008: a combined increase of almost $600 million. With sales like that, it’s no wonder they give more money to fibromyalgia than they do to diabetes and Alzheimer’s research (maybe they’ve tapped out the insulin drug well?).
We’re not saying it’s all a huge scam. There’s definitely a significant amount of patients suffering from the chronic muscle pain, depression, fatigue, and headaches that are associated with fibromyalgia. Numerous doctors who prescribe Cymbalta and Lyrica (among other drugs) to their patients report improvements and reductions in these symptoms. While these doctors undoubtedly care about their patients – one notable physician doesn’t “care how you categorize this – it’s a legitimate condition and these people are suffering” – it is a little curious that they sometimes receive training and funding from the drug companies. Dr. Daniel Clauw of the Univeristy of Michigan has done promising research on the brain scans of fibromyalgia patients, but he’s also done paid consulting work for pharmaceutical companies and works with the National Fibromyalgia Research Association, which receives funding from the companies.
Other doctors have stopped diagnosing the illness altogether, worrying that they were simply giving an arbitrary name to the mysterious pain in order to quell patients’ fears. Dr. Nortin Hadler even suspects fibromyalgia is a psychological condition and suggests therapy, rather than drugs (which carry some nasty side effects).
While we really don’t have a dog in this fight, we are naturally suspicious of Big Pharma spending money and using medical research to effectively market their exclusive treatments for an (heavily disputed) illness. And when you consider that the drugs in question – Cymbalta and Lyrica – were originally designed to treat depression and epileptic seizures, we gotta wonder if Pfizer and Lilly are simply broadening the scope of “one size fits all.” That works great with clothing, but we’re not sure it’s suitable for people’s health and wellness.
Further Reading:
Off-Label Cosmetic Prescriptions
Off-Label Pharmaceutical Promotion
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Posted By: Worker Bee
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Eleven years ago I was diagnosed with fibromyalgia. This began an exhausting journey to many specialists who put me through many diagnostics and prescribed various drugs. All along the way I was continually told that we don’t know what causes this condition and we don’t know what will help it, yet there was a lot of money exchanging hands every time I saw another dr. hhhmmmm….?
When I was at my lowest point, feeling exhausted and hopeless beyond wanting to live, I discovered that we were expecting baby #4. I seriously lost my mind and fell into the deepest depression I’ve ever been in. I could not function beyond very basic self care and I had three little girls to care for and now I would be having another baby.
My family physician informed me that pregnancy has been the only thing that has been positively proven to put fibromyalgia into remission.
Guess what? After the initial morning sickness passed, I was 100% better and I’ve never had any recurrence.
I have pondered this time in my life many times. What caused my condition in the first place? The pain was very real, but what caused it, I don’t know. I definitely am better. Was it the hormones of pregnancy, the mother’s body’s ‘instinct’ to ensure the survival of her offspring? Perhaps there was an emotional, mental, psychological side…actually, I KNOW there was.
I have experienced this condition and am free of it now. I don’t have many answers, but I do know that it CAN be cured. I know it wasn’t any drug that healed me. Truly I think it was an overstressed, unhealthy lifestyle that caused it and it was a renewed outlook on life, with improvements in diet, and loving support from family and friends that cured it.
It makes me very sad to see others suffering from this condition, because I KNOW that somehow it CAN be cured. It is hard for me to share my story with others suffering from this because pregnancy isn’t usually a very attractive treatment for most, but I emphatically make the point that THERE IS A CURE.
Few years back i had glandular fever and never ever got back to feeling 100%, they said i had some kinda chronic fatigue syndrome, bit like fibro. But after eating right, exercising and getting sun i feel great, still not 100% but 95%! Hopefully all symptms will pass, but if i stop eating right, and dont excercise much i feel rubbish again
I was just reading how many times symptoms of fibromyalgia, migraines, chronic fatigue syndrome and others are relieved or eliminated through supplementing with magnesium among other minerals. The theory being that our soils today don’t provide the nutrition they used to, and many minerals are deficient in the diets of many people, especially those who eat our nations finest processed goodies. I suspect magnesium is more effective, cheaper and safer than anything Big Pharma can create and constantly find new “uses” for.
Two years ago without any warning I went from being able to walk at the beginning of the week to being unable to walk or hold objects at the end of that week.
I was diagnosed with fibromyalgia and then promptly told that I was in pain because I was depressed and sent off to seek treatment for my so-called “depression”.
I dumped that rheumatologist and when I got over the damage he did, I found a new one. My current rheumatologist does not believe in fibromyalgia, she thinks it is lovely term doctors like to use for “we have no idea what is wrong with you and can’t bother trying to find out”.
I still don’t have a diagnosis beyond chronic neuropathic pain and a pain disorder, but I was put on Lyrica and am now pain free and can walk without the use of crutches.
So I have a love/hate relationship with Lyrica. I hate how it is being promoted as the cure for fibromyalgia when so many people “diagnosed” with this condition do not respond to it at all. Then again, I love it because it has given me back my life.
Just a thought (for those who have been diagnosed) – my sister has been diagnosed with fibro…her son with mitro valve prolapse. Same symptoms – and I’ve read that up to 75% of people with fibro also have MVP.
Is fibro a misdiagnosis of MPV, or does MPV cause fibro? Dunno, but I’ve also seen a couple of studies that show magnesium helps MVP symptoms in most patients.
My best friend as fibro, and the only thing that has seriously helped is medication. She’s been through numerous treatments, but sometimes chemicals in little pill form really do help. I’m as suspicious of big pharma as anyone, and made-up syndromes (restless leg, anyone?), but I worry for my friend and other fibro sufferers that stigmatizing the disease as “murky” doesn’t help them. (The fact that it’s largely a women’s disease I’m sure is not unrelated – hysteria, anyone?)
I know a couple of people diagnosed with fibromyalgia, and what always disturbs me about it is that it sounds like (in these specific cases) the doctors never took a really thorough history or thought through the system as a whole. No slight on the good primary care doctors, but there seems to be a real shortage of troubleshooting skills (not to mention the will and time to use them) at that level, and it seems to lead to a lot of junky diagnoses. Not to say there aren’t people with real fibromyalgia or other unexplained pain syndromes…but I think there are quite a lot of people out there who could feel better if their doctors were more on the ball.
The following is just one data point …
The previous two winters I had developed an inexplicable pain going up the left side of my neck that really made sleeping uncomfortable. Each year the pain started around Thanksgiving, peaked in January, and went away gradually as spring came (I live in the Denver area). A few weeks ago, on Nov 8, I woke up with the same pain again. It was only then, the third time around, that I was struck by the seasonality of the pain and made the leap to it possibly being a sign of sunlight and vitamin d deficiency.
I haven’t taken any kind of a vitamin for years, and gave up drinking (fortified) milk 18 years ago (I’m 36 now), so I probably have had little intake of D except for that synthesized from sun exposure during the brighter months.
I did some quick research on Vitamin D at the health/fitness sites I usually read (Conditioning Research, Mark Sisson, Gabe Mirkin, etc), I found the Vitamin D Council site — and was supplementing with 2000 IU/day of Vitamin D within a couple of days.
The worst of the neck pain went away within a couple of weeks — it had been difficult just to roll to a new position in bed and that was gone. Within six weeks the residual stiffness was totally gone, at the time in previous years when it had been the worst.
I’m really looking forward to spring when I can start getting some natural D again!
I use Lyrica regularly for certain patients (I am a surgeon). It works very well, IMO. It is true that Big Pharma is pushing their own agenda, and it is also true that they are giving relief to people. Our skepticism is healthy and part of the checks and balances of a free thinking society.
I suspect one thing about fibromyalgia, which is that it occurs mostly in people who don’t exercise. I have no evidence to support my suspicion.
I don’t think there’s any doubt that it’s a *real illness* but it seems related to not a few other conditions, in exactly the same way that “metabolic syndrome” is a cluster of symptoms mostly related to insulin resistance.
These “treatment protocols” seem related to symptom control rather than disease control in the same way that hitting a metabolic syndrome patient with statins and ACE/ARB drugs turns down the symptoms and test results without going back and addressing the cause.
Treatment For Life is after all rather profitable (I’m not saying it doesn’t work, but that looking for a factor which could be addressed permanently would probably be a better plan)
I would bet my last buck that most fibromyalgia pain is almost always low thyroid and low adrenal function. These people have a lot more symptoms than just muscle/joint point…it’s hormones.
I have been suffering from the very real condition Fibromyalgia for 13 years. It amuses me to hear people speculate and give their novice opinions on something that continues to baffle even the most well versed in the medical community.
Here are a few facts based on my first hand knowledge, my research, and my experience as a support group organizer.
Many of the people in my support group were very fit and active, not suffering from depression, led full lives, worked hard – basically were of sound mind and body when their symptoms began. In fact FM tends to affect more “type A’ personalities than not.
There are so many things that are illogical about the condition which is why it is so hard to diagnose and treat. No two patients exhibit the same symptoms which leads to the ‘murky’ classification.
I personally choose to manage my symptoms without the use of prescription drugs. I hate that Fibromyalgia has become big business, but I am hopeful that in the end all the attention – good and bad – will lead to a clearly defined disease. Progress is being made constantly to that end.
For those of us that suffer daily with the pain and fatigue, we needed the medical community to find a label for what we are experiencing, because without the label there would be no cause to move forward, to research, and to one day uncover the truths to our condition.
Trust me, their is not a Fibromyalgia patient I know that is not constantly looking/researching/trying new things to improve their health. We are not looking for victimization – we are looking for relief! Crystal I wish it were as simple as low thyroid and adrenal function. We have all been tested for that and so much more. But in the ever costly effort to improve my health, I’ll take that last buck of yours!
Hi there fibrohaven
I understand your feelings, I am suffering too. There is NOTHING simple about thyroid, adrenal, and pituitary problems. I know from personal experience and the experience of many others that the Dx of fibromyalgia is one symptom of low thyroid and either primary or adrenal insufficiency.
I’ve seen quite a few blood tests where the doc. says they are fine, end of story, when clearly thyroid/adrenal tests are not. The proper tests, in most cases, are not ordered or not properly diagnosed. We have a serious problem here and people are suffering.
I don’t know the cause of your illness and I am not in any way trying to offend. I do my best to help others.
There are somewhere between 50 and 100 chemicals which act as, or modify the effects of, neurotransmitters (maybe more now, I haven’t been keeping up). Neurotransmitters are interlinked with the endocrine system via the hypothalamic-pituitary axis, and the endocrine system is a whole chemistry set in itself.
Some of the symptoms of depression relate to reduced levels of certain neurotransmitters. Some of them relate to cortisol. Some “treatment resistant” depression resolves with thyroxine, even if thyroid levels do not *appear* to be far out of range (some hypothyroid patients don’t do well until TSH is around unity, others have TSH in range but T3 or T4 low, yet others can’t control their diabetes until thyroid issues are fixed, etc.)
There’s a whole bunch of interractivity in two adjoining very complex systems. I’m sure fibromyalgia is in there somewhere. Maybe one or several endocrine deficits break the action of the pain and motor nerves, or the other way round, the nerves which control endocrine release are fritzed.
Whatever, I wish you luck in finding someone who is proactive in dealing with it
It’s very interesting that many people with untreated or undertreated thyroid and or/adrenals have insulin resistance despite a very low carb diet–some overweight and some not at all.
It is important to remember that TSH is a pituitary hormone, not a thyroid hormone. TSH may help determine pituitary function but it is a lousy test to determine thyroid function. Always test free t4 and free t3…make sure it’s free. You need to always test both antibodies since hashimottos is the most common and fastest growing autoimmune disease. If you have not checked your frees and antibodies and know where you’re in range, then you most certainly have not checked your thyroid levels. In many cases, primary/secondary adrenal insufficiency goes right along with hypothyroidism and that must be checked as well.
Remember, in some doctors minds(ok.. most), “in range” means “normal”. “Normal” does not mean healthy or optimal. Symptoms are more important than labwork, period.
Since “chemical imbalances” are actually hormones, I think it’s a good idea to check, don’t you?
“Since “chemical imbalances” are actually hormones, I think it’s a good idea to check, don’t you?”
If you can!
In many parts of the UK only TSH is available and even then they won’t act on results unless they are 5 or even 10 or more. A friend with private health insurance can get T3 and T4 but NOT CRP or VLDL, the labs simply do not have the kit for the tests.
Here they are very proactive with thyroid and find hypothyroid regularly (and treat it aggressively) but the GP I asked stated she had no clue if this was related to any local factors (such as extreme longevity or dietary factors) as there were simply no results from many other locations to compare. Said friend actually had to move in order to get her severe hypothyroid fixed. This is appalling but not uncommon. Equally common I suspect with fibro.
Hi Mark, I just picked up your book and already feel much better digestion-wise just 3 days in. I’ve had fibro symptoms for years but only recognized them as that when they got so bad that I had to miss a couple days of work. (For those out there looking for help I have found some relief with D-Ribose.) I work in a warehouse on my feet for about 6hrs a day (am in my office for the other 2hrs), lifting and packing boxes up to 60lbs and hauling pallets around. I used to use sugar and caffeine to get through but realized this only made me feel worse in the long run. Since looking at the book I’ve already started moving more slowly and moderating my pace at work. I think I’m lifting plenty of heavy things. My question is how to fit in the rest of the Primal exercise program when I’m completely exhausted and it seems the only way to recover is to rest? (I also used to use caffeine and sugar to push through this fatigue/pain barrier when I *needed* to exercise but am now convinced that is definitely *not* the right thing to do.) Any suggestions are appreciated.