Marks Daily Apple
Serving up health and fitness insights (daily, of course) with a side of irreverence.
14 Feb

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

Statin Insanity!

Off-Label Pharmaceutical Promotion

You want comments? We got comments:

Imagine you’re George Clooney. Take a moment to admire your grooming and wit. Okay, now imagine someone walks up to you and asks, “What’s your name?” You say, “I’m George Clooney.” Or maybe you say, “I’m the Clooninator!” You don’t say “I’m George of George Clooney Sells Movies Blog” and you certainly don’t say, “I’m Clooney Weight Loss Plan”. So while spam is technically meat, it ain’t anywhere near Primal. Please nickname yourself something your friends would call you.

  1. 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.

    new_me wrote on February 14th, 2009
    • I’m glad you are better. I sincerely am. I know that many women with Fibromyalgia feel better during pregnancy and some continue that after their pregnancy is over. But many women, such as myself, experience worse Fibromyalgia symptoms during pregnancy and some, myself included, remain worse after their pregnancy is over.

      Again, I am so happy for you that you are better but please don’t pass your experience with it off as how it is for everyone just as my experience it not the same for everyone with this illness.

      They don’t know what causes Fibromyalgia and there is no cure. Some things do help some but not all so please stop spreading disinformation.

      spinninginca wrote on October 20th, 2010
    • As someone who has been dealing with fibromyalsia for the last 20+ years I find your implications insulting. I eat a healthy diet, force myself to exercise (with a specialized personal trainer), meditate, I have a loving and supportive circle of family and friends, have fortunate circumstances which allow me to have weekly and biweekly massage, accupuncture, and pretty much whatever else I want or need. Everyone who knows me will tell you that I’m one of the most positive people they know. But I’ve been sick with fibromyalgia,been in horrible pain from head to toe that sometimes causes me to be housebound and occaissionally bedridden, EVER SINCE my pregnancies. (By the way, if you don’t know what is causing your pregnancies you might want to ask a new doctor about that so as not to ‘discover’ any more of them since the doctor you have been going to doesn’t seem to be generally well informed.)

      Fibromyalgia is still not understood the way many diseases are not because ‘modern’ medicine is just that ~ modern. A century ago people died from impacted teeth or the mumps. Today we have immunizations against polio and chicken pox. Medicine is a science and science takes time; hence, a medical ‘practice’ not a medical ‘perfect’. I agree with spinninginca below: “Some things do help some but not all so please stop spreading disinformation”

      Lisa wrote on October 3rd, 2012
  2. 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

    Chris Emerson wrote on February 14th, 2009
  3. 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.

    Rodney wrote on February 14th, 2009
  4. 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.

    Riayn wrote on February 14th, 2009
  5. 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.

    MzEllen wrote on February 14th, 2009
    • I have fibro, I do not have MVP. Magnesium is tricky; you can also have too much. Find a good doctor and a CERTIFIED & LICENSED dietician (not nutritionist)

      Lisa wrote on October 3rd, 2012
  6. 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?)

    Jaime wrote on February 14th, 2009
    • I freaking WISH restless leg was a made up syndrome! Imagine a a tickle on your foot inside your shoe that you can’t get to. Now imagine 2-3 hours of that.

      mbridget wrote on June 12th, 2012
    • 90% of fibro patients are women, 10% men

      Lisa wrote on October 3rd, 2012
  7. 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.

    Kim wrote on February 14th, 2009
  8. 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!

    Nathan wrote on February 14th, 2009
  9. 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.

    Rambodoc wrote on February 15th, 2009
    • Yeah, but which comes first? “I HURT so I stop exercising”; or “I don’t exercise, so I start to hurt”?

      Over in the (non-mainstream, experiential) thyroid world (see: Stop the Thyroid Madness: sttm.com), many many people with fibro have found relief/cure through treating their thyroid problems — but, of course, you cannot rely on your doctor — and most esp. on your endocrinologist! — to know how to *accurately* diagnose thyroid problem — the TSH test is SOOOOOO not it!

      Elenor wrote on January 5th, 2011
    • Dear Doctor
      I’ve been exercising for 30 years. I’ve had fibro for 23. Please don’t ‘suspect’ without evidence; people tend to listen and respect their doctors.
      thank you

      Lisa wrote on October 3rd, 2012
  10. 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)

    Trinkwasser wrote on February 15th, 2009
  11. 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.

    Crystal W. wrote on February 15th, 2009
    • I would love to have your last buck. My thyroid and adrenals function great. My hormones are balanced. When and where may I collect all of your money?

      Lisa wrote on October 3rd, 2012
  12. 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!

    fibrohaven wrote on February 15th, 2009
    • “We have all been tested for that”

      except the TSH test they use — even the docs admit — is often inaccurate. It’s NOT a thyroid test, it’s a pituitary test. This is ({sigh} yet another) health issue where you have to do your OWN research and push your own testing and treatment because almost without exception, your doc just DOES. NOT. KNOW!

      Did your doc test your for Reverse T3? Bet not. My doc said he only knew it shows up sometimes in intensive care patients.

      Well hell! It’s actually pretty common in folks with thyroid problems where their body converts T4 (which is what most docs are treating hypo with — the storage form of thyroid hormone (they prescribe “Synthcrap”!), not the active form which is T3) into REVERSE T3, which blocks the T3 receptors and makes it like you’re not even treating your hypo. Does you doc know ANYTHING about this? Do you?

      You cannot possibly say (accurately): “They’ve tested me and my thyroid is okay” if they have NOT tested your rT3 to see if your body is blocking your T3 receptors with rT3.

      (And p.s., Those Type A? They’re the one who burn out their adrenals and thus trash their thyroids — and if your doc isn’t extremely well educated — SELF-educated! — on this stuff — you’re S.O.L.

      Elenor wrote on January 5th, 2011
    • Yes! and Thank you!

      Lisa wrote on October 3rd, 2012
  13. 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.

    Crystal wrote on February 15th, 2009
  14. 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

    Trinkwasser wrote on February 16th, 2009
  15. 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?

    Crystal wrote on February 16th, 2009
  16. “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.

    Trinkwasser wrote on February 23rd, 2009
  17. 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.

    Sally Camm wrote on February 10th, 2010
  18. I have fibro and I’m convinced that it’s a symptom, not a disease in and of itself.

    For those of you who’ve been fortunate not to have experienced this yourself, let me take just a moment to tell you what you’re missing.

    Imagine the worst viral infection you’ve ever had. Severe dehydration, muscle aches, neck pain, kidney and back pain, leg cramps, spasms in your ribcage, etc.

    That’s what fibro feels like. At times, I feel like very cell in my body is screaming. Every inch of my skin becomes so sensitive that a small poke can set off a chain reaction of pain that won’t go away for hours.

    It’s the nature of the pain that has convinced me that fibro is a symptom. It just feels too much like the muscle pain of a virus.

    I had the same suspicion about my son’s ADD. For years I fought for him. Doctor after doctor. Homeschooling. I did every thing I could to keep him off medications while we tried to find out the root cause of his problem.

    When he was 8 years old, he took a turn for the worse. He actually started to behave as if he had Autism. That got us to a neurologist and a diagnosis of Celiac disease.

    After only two weeks on a gluten-free diet, I had a new kid. He only got better after that.

    I strongly believe that CFS and fibro are in the same category.

    Marie42 wrote on May 8th, 2010
  19. I wish I had paid closer attention to the comments above because I would have insisted on in-depth thyroid testing sooner. After only a month on a low dose of thyroxine I am 1) no longer depressed and 2) almost completely pain-free. To think I suffered for about 20 years because my TSH labs were “normal” – jeez! Not to mention all the money I spent and the horrid side effects I endured from trying every anti-depressant out there just hoping to feel better. My suggestion: if you believe you may have a thyroid issue and your doc won’t test your free T3 and free T4 – find one who will.

    Sally wrote on May 13th, 2010
  20. I have spent 4 years in Fibromyalgia HELL and I just cannot believe how people that do NOT have fibro try to play dr based on what their friend of a friend of a friends’ sisters’ cousins’ aunts’ friend supposedly went through or WAS CURED BY! What the hell?

    When I first started exhibiting the mysterious symptoms of fibro, my doctor did all sorts of tests – all inconclusive. But then a year and a half later I had total knee replacement surgery (5th knee surgery after falling down the stairs at home) and now the symptoms are every single day. BTW, the surgery was a horrible experience with major nurse mismanagement that left me in horrible pain because 1) they *accidently* turned my leg block off and 2) refused to give me oral pain meds and 3) refused to get a doctor for me when I was screaming my head off from the pain. So, I pretty much know how fibro happened to me. I was never satisfied with the diagnoses of fibro after I started researching it, so I demanded all sorts of tests that I read about to rule out various other diagnoses. All tests were normal, even a very expensive 3-phase bone scan. I never, ever just sat back and allowed the dr’s to just slap a simple label of fibro on me because they could not figure out what was wrong with me.

    However, now 2 years has passed since the knee replacement and I no longer have FIGHT in me. I give up. Fibro wins. I’ve tried low-carb (altho probably not the right way), exercising, medications…you name it, I tried it. Fibro is kicking my butt and yes, I’m pretty damn depressed. BTW, I’ve had mental illness since I was 12 yrs old so I know the diff between depression *pain* and fibro *pain* – very distinctly different.

    Today was a bad day as I tried to clean house for about 2 hours yesterday – something you non-fibro’s take for granted causes me to spend an entire day in bed and taking extra pain meds because I tell ya, the pain is unbearable!! Even if I tried to describe to you how horrific the pain is, you would still have no idea what it is like. You could never know because you’ve never felt it. I have come up against dr’s – even a stupid pain dr I went to – that fibro pain can be controlled with talk therapy. Makes me LMAO. Of course they are going to say that, its the easy way out! But what they dont know is that I KNOW that there just IS NOT enough known evidence and knowledge about fibro to make conclusive statements for what the best treatment approach is for everyone with fibro – one size does not fit all!! For example, my neighbor works full-time and has fibro and does not take medications – she refused to and she refuses to ever call in sick because of the pain. Now, as for me, I have not worked in 2 years (since my last knee surgery) and am in horrible pain and have severe, unrelenting fatigue most days. I’ve tried all the meds and found which ones work and which ones dont and which ones give me horrendous side effects and have been to dr after dr because of their ignoramous level and/or arrogance level, have had numerous tests, tried all the treatments and finally *gave up* and filed for disability. That is the distinct difference in how fibro effects different people. I have been called “WEAK” and have heard comments like I “probably just have a lower pain threshold” and various other BS from dr’s and even my own family. This isnt the forum for this, but the biggest BS I’ve heard from dr’s is that narcotic pain meds (morphine, hydrocodone, etc.) does NOT work for fibro pain. FACT: It is the only thing that has helped me with the pain that I feel all throughout my body everyday, day in and day out, with the least amount of side effects and at the cheapest cost. The fact of the matter is, is that the medical community just does not understand or know enough about fibro to make educated, conclusive statements – period!! There are a zillion theories as to what dr’s should and should not do for fibro patients or the dr’s form their own opinion and that is at the expense of the patient with fibro.
    I do believe that fibro is a real disorder or syndrome or whatever you want to call it. I know it is real as I live with it everyday. I would not wish it on anybody. Well, I take that back. I do sometimes wish it on the dr’s that look at me as if I am “just weak” and wish for one day or one week they could feel the pain and fatigue that I do.
    The hardest part of living with fibro was filing for disability. I do believe that has been the lowest point ever in my 42 yr old life.

    I just recently came acrossed marksdailyapple.com and have enjoyed learning about the carb-effect and hope to incorporate it into my life. I believe when I have tried low-carb in the past, it was too restrictive. Over memorial weekend I tried a low-carb diet (lifestyle) and severely restricted my intake and ended up going through a very severe fibro flare that lasted for over a week. And I ended up going back to carbs and giving up.

    I guess my point of posting this awfully long comment about your Bitter Divisions and Murky Motives Fibro article and all the comments posted by other readers is to try and get folks out there to understand the devastating effects of being diagnosed with fibro and living with it everyday. I’m not sure if I made my point effectively or not tho. Oh well, guess it can be ‘food for thought’ for anyone reading this.

    Nanner wrote on June 21st, 2010
    • UPDATE: In September I finally heard back from Social Security regarding my disability application I filed back in April. I was approved!! And they based it on Fibromyalgia. So what does that say about Fibro being a “murky” diagnoses??? If the federal government believes it is an actual medical illness, then why cant the rest of you believe it?

      I finally ordered Primal Blueprint and the cookbook and look forward to trying it out and making a permanent lifestyle change.

      Nanner wrote on October 20th, 2010
      • I know two years have passed since you posted these comments but it seems that the flouride in our water has been poisoning us. My sister was living in Fibromyalgia Hell and I found an article that addressed Fibromyalgia and other symptoms that get lumped in with it but could be other diseases or problems. When my sister switched to Flouride free water or distilled water, after two weeks her level of pain was down significantly, additionally she has also been able to stop taking Cymbalta. She was so excited that she went shopping the other day and truly expected to spend the next full week in bed to recover and was shocked when she was able to wake up and cook dinner. That has not happened in a long time. Here is the link to the article: http://www.earthclinic.com/CURES/fibromyalgia.html#cause

        Nancy Pease wrote on April 23rd, 2012
  21. I just received a preliminary (in lieu of eliminating any other possibilities) diagnosis of fibromyalgia this week…and, I have to say, it came as a bit of a shock.

    Since I had previously associated the condition with pain of the severity Nanner decribed, I never thought of my (comparatively mild) symptoms as something in need of treatment, except maybe for a seriously prolonged course of massage therapy. But now I’m seeing so many things that I dismissed as “normal” (because they were normal to me) in a new light–how disproportionately painful were things like a simple poke in the arm, using crutches following my knee surgery, touching any of the little “knots” all over my torso, or having a friend’s pet walk across my lap.

    Considering what so many others have been through, I feel very blessed that the practice I was referred to for a likely case of (just as “murky”) Wilson’s Syndrome operates in an integrated, holistic manner. For the first time in my life, the nurse and doctor took the time to take a very in-depth medical/lifestyle history (which has included years of fatigue/low motivation/depression) and do a thorough physical examination. It was through the latter that all my “points” were discovered.

    This hasn’t been the easiest week by far, but I’m actually thankful for the wake-up call. It forced me to take a serious look at my life and my health–and brought me (inadvertantly) to this website. My doctor’s primary recommendations (along with copious amounts of testing for other conditions) were a diet freakishly similar to PB and regular exercise (GOTTA love a doc who doesn’t immediately try to shove pills down your throat).

    I’m so thankful for the information resources here at MDA! I’ve ordered PB and the cookbook to get grounded in the knowledge and practical support I need to make the necessary lifestyle changes…and I have high hopes that those changes will help me kick this condition for good!!

    Leizer wrote on August 6th, 2010
  22. I had fibro for more than 20 years before I finally got a diagnosis. I chose drug free for lots of reasons (including a very keen interest in nutrition and the fertility aspects of most drug approaches). It’s very difficult to find a medical professional which spans the breadth of nuero-endocrine-immune disorders such as fibro, CFS/ME, gulf war syndrome etc. Most medics tend to focus on one aspect. In my experience diet and exercise only get you so far. I wish I could get shots of the hormones you have during pregnancy. I became painfree for the first time in 20 years (I had actually forgotten what it felt like). As my baby reduces feeds with her age, I’m getting a corresponding rise in return of symptoms. I really worry about what my pain levels will be if she decides to wean. I don’t want to go back to how I was before. Hormones, infection and sympathetic and parasympathetic nervous system are big players for me too. I’ve never met two people with fibro who’ve come to it the same way. For me fibro is the response to the environment we live in. We are like canaries in the cage for the miners of old. We are just people who are showing up what’s bad about the environment we’ve created (including our emotional and social env too) sooner than the rest of the world. I think this is where humans are headed if we don’t turn our environment and our lives around. I think your approach is part of the answer, but the rest of the answer will be different for different people. I think we probably need some drugs, some people need them more than others, some people don’t need them at all. I got great results from homeopathy but that’s not the whole answer either. Gotta tell you though, addressing infection through antibiotics is probably less harmful than the drugs that have been specifically developed for fibro. I always thought I’d never consider drugs, but now I’m a parent and I know what it’s like to be well I’ll do just about anything to stay well, even if it means adding some drugs to the mix. Addressing mycoplasma infections is part of the next step of my journey. I’ll try not to give too much money to big pharma. I’ll probably only be taking tiny amounts of antibiotics which will mostly be available as ‘generics’ here in Oz. I wish you well and happy.

    Sim1 wrote on November 12th, 2010
  23. Mastering Leptin by Byron Richards has a very interesting chapter on fibromyalgia. I was really interested to read his theories and am going to incorporate some of his suggestions and see what happens. I’ve had a FM diagnosis for about 12 years. It waxes and wanes in intensity but never totally goes away.

    Stephanie wrote on November 27th, 2010
  24. I suffered from Fibro for many years. I tried lots of different things and let it run my life. One day I said no more. I quit eating/drinking all artifical sweetners (I was a huge diet pop drinker and diet everything I ate) and after about 3 weeks of withdrawals that gave me fibro flares and headaches. I felt soooo much better. I still had flares here and there but they were alot less frequent and mild.

    Then we started working out which was always a trigger for me. Didn’t have any issues really. Felt it very little during workouts.

    Next we found Paleo and it is all but gone! I have my life back and feel like a whole new person. I believe fibro is a real thing but I believe it was self inflicted with my diet. All I know now is I don’t worry about it at all anymore and I am off all medications.

    Theresa wrote on May 3rd, 2012

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