Fibromyalgia

[shawmutt]

Is it just me or does this syndrome seem custom tailored for sCAM advocates?

I just read this article here: http://consults.blogs.nytimes.com/2009/09/23/complementary-and-alternative-therapies-for-fibromyalgia/

Alternative Therapies for Fibromyalgia
By The New York Times

...Today The Times Health Guide takes a look at fibromyalgia, a mysterious ailment that afflicts both women and men with a range of symptoms that include pain, fatigue, poor sleep, tingling and memory problems. Diagnosis can take a long time (see Anne Underwood’s story, “The Long Search for Fibromyalgia Support”), and there is no cure. Though about a third of patients respond to F.D.A.-approved drugs for the condition, many more seek relief through lifestyle changes and alternative and complementary therapies.

...This week Dr. Brent Bauer, director of the complementary and integrative medicine program at the Mayo Clinic in Rochester, Minn., joins the Consults blogs to answer readers questions about fibromyalgia. Dr. Bauer writes:

Fibromyalgia is a vexing condition for both patients and doctors. It’s vexing for patients because it can cause symptoms ranging from mild muscle aches to debilitating pain, yet it remains poorly understood and has no known cure. It’s vexing for many physicians who are faced with suffering patients but have only a limited armamentarium of treatments to offer.

The good news is that research is growing – revealing many new strategies for dealing with fibromyalgia in a way that helps many patients live with the disease successfully.

One exciting area of research in the past decade has been in the realm of complementary and alternative medicine, or CAM, treatments for fibromyalgia. These range from well recognized therapies like acupuncture and massage to more novel treatments like d-ribose and qi-gong.

After searching around this site, I see a few members here believe they have this syndrome. I'm curious to see what they think about the woo remedies.

As an aside, I looked up d-ribose on wiki, as I haven't heard of it. I love what someone wrote about the study--"Although this study lacked any control group because essentially everyone involved was literally taking sugar pills..." :D

[Sunray Breaker]

My Mom was diagnosed with Fibromyalgia. But she's been wondering if it it's something else entirely.

It's a hard one to treat and harder to diagnose. Does anyone know what the most effective treatment is? She's been suffering pretty bad from it.

[Sunray Breaker]

PS - She's taking time released morphine (prescribed obviously) and it would seem Marijuana helps her sustain the medication so it doesn't wear off as quickly. She went from needing a refill every two weeks to almost once a month. But it's still quite a difficult issue...

[NoZed Avenger]

The problem (or at least one problem) is that it is a diagnosis of exclusion -- i.e., that's what they call it if they've eliminated the stuff they can really test for. Those type of things are tricky to get a handle on, because it can end up being a collection of different problems, none with necessarily the same cause.

I don't know enough, unfortunately, to really recommend anything. I hope she finds relief.

[JJM]

There is some discussion here: http://www.sciencebasedmedicine.org/?p=1822

[Little 10 Toes]

I had an old co-worker tell me about a friend of a friend who was diagnosed with fibromyalgia. He had all the "classic" symptoms and had it for a few years. Turns out that no one ever gave the patient a blood test for sugar. The guy really had a case of diabetes.

[fls]

Is it just me or does this syndrome seem custom tailored for sCAM advocates?

Yes. Any time that the waxing and waning of a condition is evaluated through the use of subjective sensations, you have a perfect opportunity to make full use of effects associated with placebo use. And the condition does not lead to hard outcomes like death or disease, making it safe for SCAM advocates to take responsibility for any outcome.

Linda

[Lanzy]

My wife has been seeing a doctor for years and this diagnoses was arrived at after eliminating everything else. Massages do help, or she just likes them, who knows. She tried acupuncture, thought it helped, finally decided it really didn't. Some days are worse than others, avoiding some foods seem to help and a stricter diet seems to be helping the most.

But she has met many women who claim to have this ailment, but after talking to them NONE of them have been diagnosed by any doctor at all, they just read about it on the internet. And ALL of them know the best way to treat it.

YMMV

[shawmutt]

There is some discussion here: http://www.sciencebasedmedicine.org/?p=1822

Thanks for the link. They must use the same Google alerts I do :D It's a good thing smarter people than me are on the medical front :p

[Wolrab]

A friend of mine (a classmate from nursing school) posted on facebook that "reiki is awesome!" I posted a link to quackwatch and the responses were like I skinned a live puppy. I was dumped on by woosters. One response was, "There are those who also do not see any scientific value in love, a hug, or a smile". Another pointed out that the Quackwatch article cites the American Conference of Bishops (while ignoring any peer reviewed citations).

So in summary, yes, fibromyalgia is ripe for sCAM.

[Marc39]

My mother has polymyalgia, which is similar. This past summer, got to the point where she was bedridden. Couldn't even lift her arm to brush her teeth.

Took her to my doctor, a holistic physician (Board-certified internist). Three months later, no more pain.

Polymyalgia and fibromyalgia are caused by inflammation. Eliminate the root cause, the disease can be cured.

[Paul C. Anagnostopoulos]

Took her to my doctor, a holistic physician (Board-certified internist). Three months later, no more pain.

Polymyalgia and fibromyalgia are caused by inflammation. Eliminate the root cause, the disease can be cured.
So what did he do?

~~ Paul

[Marc39]

So what did he do?

~~ Paul

Extreme diet modification aimed at reducing inflammation
Nutritional supplements designed to reduce inflammation
Curtailment of intense physical activity

[ben m]

Extreme diet modification aimed at reducing inflammation
Nutritional supplements designed to reduce inflammation
Curtailment of intense physical activity

But no actual anti-inflammatory drugs.

[macdoc]

In some cases the inflammation is not even existent but rather the body thinks there is a problem and reacts to it with pain signals, fluid retention and limitation of muscle range....

COX2 inhibitors like Celebrex interrupt that signal and damn they make you feel like a teen again.

Chronic conditions are always open to scams but also are often poorly served by the mainstream community

Board certified NDs have a role to play tho the community as a whole is painted, deservedly with a woo brush in the main due to homeopathy.

That said pharmaceuticals and main stream kill far more with preventable errors and misapplication of drugs.

[Marc39]

But no actual anti-inflammatory drugs.

No drugs, which is what holistic medicine is all about. Homeopathic anti-inflammatories.

Drugs have side effects that can be worse than the disease, itself.

My mother first met with a conventional doctor who specializes in arthritis and all he does is give injections of prednisone, which is bad stuff. That's what caused Jerry Lewis to blow up like a balloon.

There's a good book on inflammation that is worth reading...
http://www.drdukejohnson.com/book.html

Good luck.

[Squid]

Homeopathic remedies? As in 30C dilutions? Just trying to clarify what we're talking about here.

Squid

[shawmutt]

No drugs, which is what holistic medicine is all about.

Exactly. No drugs. The first step towards solving a problem (the lack of benefit of sCAM) is admitting the problem.

Drug: 1 b : a substance used as a medication or in the preparation of medication c according to the Food, Drug, and Cosmetic Act (1) : a substance recognized in an official pharmacopoeia or formulary (2) : a substance intended for use in the diagnosis, cure, mitigation, treatment, or prevention of disease (3) : a substance other than food intended to affect the structure or function of the body (4) : a substance intended for use as a component of a medicine but not a device or a component, part, or accessory of a device

Homeopathic remedies? As in 30C dilutions? Just trying to clarify what we're talking about here.

That would be it. Even a thread on Fibromyalgia brings the woo woo out of the woodwork.

[fls]

My mother has polymyalgia, which is similar. This past summer, got to the point where she was bedridden. Couldn't even lift her arm to brush her teeth.

Took her to my doctor, a holistic physician (Board-certified internist). Three months later, no more pain.

Polymyalgia and fibromyalgia are caused by inflammation. Eliminate the root cause, the disease can be cured.

Yup. This is exactly the sort of thing I was talking about. Her 'illness' and her recovery depended entirely upon subjective perceptions. Whatever it is that happens to be used before she happens to get better will get the credit. And since the condition is unlikely to have a pathological component, you can safely fail to provide any effective treatment.

Throw in some buzzwords which have no real meaning and you've got the whole package. "Holistic", if it refers to taking into consideration the whole body, is redundant, as any internist does that. But I see that in this case it means "use treatments without demonstrable effectiveness while withholding effective treatments". Another name for that is "depraved indifference", but "holistic" is shorter, I guess.

Linda

[CatOfGrey]

Putting all woo-woo aside, there really is a connection between our mental state and our physical well-being. I have at least three acquaintances that have fibromyalgia diagnoses, and each one is connected with a high-stress period in their life (divorce, care and death of relative from cancer).

If fibromyalgia is a physical disease that is caused or triggered by stress, then it's no surprise to me that it responds to diverse forms of alternative medicine's placebos, particularly those that are 'directly' oriented to joint pain. If the person believes, that's significant enough to induce a change in hormone levels that might relieve the physical symptoms.

The early research into fibromyalgia showed that cognitive behaviour therapy was effective, too. A pharmacist-type here might also explain in greater detail why the warnings on TV commercials for fibromyalgia drugs seem similar to some psychiatric medications.

[truethat]

My aunt was diagnosed with this when she was obese. Then she had the Lap band Surgery, now that she's lost a ton of weight she's been diagnosed with Breast Cancer. So to me it's a sign somethings wrong that they haven't figured out yet.

[CatOfGrey]

My aunt was diagnosed with this when she was obese. Then she had the Lap band Surgery, now that she's lost a ton of weight she's been diagnosed with Breast Cancer. So to me it's a sign somethings wrong that they haven't figured out yet.

This is the real danger behind fibromyalgia woo-woo. I have heard people misdiagnosed with FM that were later diagnosed with diabetes, thyroid conditions, immune disorders like lupus and rheumatoid arthritis. Like chronic fatigue syndrome in the 80's and 90's, it was a cover-up diagnosis for doctors to begin billing, rather than working.

And best wishes to your aunt - she's on a tough journey. Hope all goes well!

[Deranged]

I think it's a dietary problem often with aspartame involvement from diet drinks in excess. Or if one is allergic to aspartame just a small amount can make them sick. And let's not leave out multiple chemical sensitivities.

[tesscaline]

I think it's a dietary problem often with aspartame involvement from diet drinks in excess. Or if one is allergic to aspartame just a small amount can make them sick. And let's not leave out multiple chemical sensitivities.Would you happen to have any evidence to support those claims?

[fls]

I think it's a dietary problem often with aspartame involvement from diet drinks in excess. Or if one is allergic to aspartame just a small amount can make them sick. And let's not leave out multiple chemical sensitivities.

Yeah, another 'condition' ripe for SCAM.

Linda

[Riayn]

My first rheumatologist diagnosed me with fibromyalgia after I started the week being healthy and ended the week being unable to walk or grasp objects and promptly told me that I was in pain because I was depressed. What utter ********! He also gave me anti-inflammatories even though fibromyalgia is defined by its lack of inflammation and my blood tests also showed a complete lack of any inflammatory markers. They did absolutely nothing for the pain.

My second and current rheumatologist doesn't believe in fibromyalgia, she thinks it is a basket doctors stick people into when they can't be bothered to work out what is wrong. Despite her best efforts, she also doesn't know exactly what is wrong with me and I am classed as having a pain disorder. I am on, however, the FDA approved treatment for fibromyalgia - Lyrica which used to be a medication for epilepsy. For me it is a godsend. I have gone from needing crutches to walk to competing in martial arts tournaments, but if I stop my medication I go back to needing crutches to walk.

However not everyone classed as having "fibromyalgia" will respond to Lyrica which confirms my suspicion that fibromyalgia itself is not a real disease but a variety of diseases that all have similar symptoms that have all been lumped together.

As for the woo factor surrounding fibromyalgia it is fairly intense. I have been told I need acupuncture, a change in diet, homeopathy etc. The only thing that did work is pharmaceutical drugs, funny that.

[dropzone]

PS - She's taking time released morphine (prescribed obviously) and it would seem Marijuana helps her sustain the medication so it doesn't wear off as quickly.Been there, done that. Oh, you're talking about PRESCRIBED BY A DOCTOR medication? For a CONDITION? That's different.

As SSRIs and SNRIs have some success with it, I believe the brain or nervous system have something to do with some cases, but I also believe that it's the Diagnosis of the Week for a condition that really isn't there.

[ben m]

I have been told I need acupuncture, a change in diet, homeopathy etc. The only thing that did work is pharmaceutical drugs, funny that.

Thanks for sharing, Riayn.

I just want to note, in case one of the homeopaths gets the idea that we favor one set of anecdotes over another: the effect Riayn has seen is also seen during double-blind, placebo-controlled trials (http://www.ncbi.nlm.nih.gov/pubmed/18278830/?id=Clipboard&tab=Clipboard&). Unlike homeopathic "cures", whose stockpile of anecdotes mysteriously dry up during controlled experiments.

[Andrew Wiggin]

My hypothesis:

Everyone has different expectations of what constitutes too much pain. For example, I've broken lots of bones over the course of a long active life, and I don't expect to wake up pain free, and when I do wake up stiff and achy, I don't take that as meaning I'm suffering from a motrin deficiency. Other people I know who have pain run the spectrum from keeping pills at bedside and not getting up until they've medicated to calling it a bad day and not getting up at all.

My own observation has been that being bedridden can all by itself cause lots of aches and pains. Muscles don't do well if not stretched out and excercised. The levels of pain I've seen in bedridden patients are very consistant with those I've seen in fibro patients.

People who don't excercise and who are bedridden lose bone mass as well, and I've seen anecdotal stuff that suggests that calcium and phosphorus can build up in muscle tissue and cause knots. Some folks advocate chelation therapy to remove the excess minerals, which I don't stand behind for several reasons. First, the prescribed chelating agent, guaifenisen, is a poor chelator but an excellent muscle relaxant. I don't have a problem with muscle relaxants as adjuncts to other treatments for skeletal muscle pain: they work wonders for folks with paralysis, but I prefer to call a spade a spade. Second, if you're recognizing that the effect is one of muscle relaxation, you can choose from a wide variety of muscle relaxants, not just those you believe have chelation activity. Third, if you actually do succeed in removing calcium and phosphate from the tissue and blood, it will be replaced by further bone loss.

The effective treatments for fibromyalgia approach it as a disease of motivation, not pain. They're antidepressants to get people who have been bedridden and lost in a fog of pain, self pity, and low energy, up and moving again. I believe that once they get moving, get the blood pumping and the muscles stretched out, and keep up with an excercise regime for a while, they feel a lot better. The hard part is getting someone who is simultaneously in genuine pain, believes that this justifies rest rather than excercise, and depressed about their condition, up and moving enough to reverse it.

I'm not dismissing fibromyalgia. I have seen folks with fibro who I had no doubt were in real and constant pain. What they all had in common though was a lack of physical activity and a certain outlook on life, I.E. they expected to be pain free before they moved, and if they couldn't be pain free, they'd only move to the smallest extent that they had to, and that wasn't enough to meet their needs for excercise. It took a change of outlook before the condition resolved.

Now I'm putting on my asbestos lined panties, because every time I've pointed this out, I've collected plenty of flames.

A.

[ponderingturtle]

However not everyone classed as having "fibromyalgia" will respond to Lyrica which confirms my suspicion that fibromyalgia itself is not a real disease but a variety of diseases that all have similar symptoms that have all been lumped together.

I wouldn't expect everyone with the same disease to respond favorably to one medication.

[CatOfGrey]

....He also gave me anti-inflammatories even though fibromyalgia is defined by its lack of inflammation and my blood tests also showed a complete lack of any inflammatory markers. They did absolutely nothing for the pain.

I had a conversation with my doctor about this strategy (in my case, antibiotics for a [viral] cold. He replied that the placebo effect works better with ineffective, but prescribed medications than with sugar pills. He wasn't completely joking...

By the way, I'm curious - was your life high in stress before your pain began? I don't know if this connection has been studied formally or not.

[Riayn]

By the way, I'm curious - was your life high in stress before your pain began? I don't know if this connection has been studied formally or not.

I was working as a vet tech/vet nurse when I got sick. I loved my job. Yes, there was stress as dealing with medical emergencies all day is stressful, but I certainly wouldn't say I was stressed out. In fact, I was extremely happy. Job was going well. Life was going well and then in the space of one week I went from being extremely active to not being able to walk. In all my readings about fibromyalgia I have never read about a rapid onset such as I experienced. Hence one of the reasons I was skeptical about my initial diagnosis and my doctor's declaration that I was depressed and that is why I was in so much pain.

However, in relation to your question about a link between stress and fibromyalgia I have read that there is a link between fibro and emotional distress which in my opinion would include high stress levels.

[Riayn]

My hypothesis:

Everyone has different expectations of what constitutes too much pain. For example, I've broken lots of bones over the course of a long active life, and I don't expect to wake up pain free, and when I do wake up stiff and achy, I don't take that as meaning I'm suffering from a motrin deficiency. Other people I know who have pain run the spectrum from keeping pills at bedside and not getting up until they've medicated to calling it a bad day and not getting up at all.

My own observation has been that being bedridden can all by itself cause lots of aches and pains. Muscles don't do well if not stretched out and excercised. The levels of pain I've seen in bedridden patients are very consistant with those I've seen in fibro patients.

People who don't excercise and who are bedridden lose bone mass as well, and I've seen anecdotal stuff that suggests that calcium and phosphorus can build up in muscle tissue and cause knots. Some folks advocate chelation therapy to remove the excess minerals, which I don't stand behind for several reasons. First, the prescribed chelating agent, guaifenisen, is a poor chelator but an excellent muscle relaxant. I don't have a problem with muscle relaxants as adjuncts to other treatments for skeletal muscle pain: they work wonders for folks with paralysis, but I prefer to call a spade a spade. Second, if you're recognizing that the effect is one of muscle relaxation, you can choose from a wide variety of muscle relaxants, not just those you believe have chelation activity. Third, if you actually do succeed in removing calcium and phosphate from the tissue and blood, it will be replaced by further bone loss.

The effective treatments for fibromyalgia approach it as a disease of motivation, not pain. They're antidepressants to get people who have been bedridden and lost in a fog of pain, self pity, and low energy, up and moving again. I believe that once they get moving, get the blood pumping and the muscles stretched out, and keep up with an excercise regime for a while, they feel a lot better. The hard part is getting someone who is simultaneously in genuine pain, believes that this justifies rest rather than excercise, and depressed about their condition, up and moving enough to reverse it.

I'm not dismissing fibromyalgia. I have seen folks with fibro who I had no doubt were in real and constant pain. What they all had in common though was a lack of physical activity and a certain outlook on life, I.E. they expected to be pain free before they moved, and if they couldn't be pain free, they'd only move to the smallest extent that they had to, and that wasn't enough to meet their needs for excercise. It took a change of outlook before the condition resolved.

Now I'm putting on my asbestos lined panties, because every time I've pointed this out, I've collected plenty of flames.

A.

You raise some excellent points. Fibro and other pain disorders form a vicious cycle. You stop being active because you are in pain, but then you get pain due to being inactive. The trick is to stop the pain cycle so that you can start being active.

However, most people I encountered on online forums and at seminars for chronic pain disorders really let the pain control their lives. They didn't want to try to push through the pain. I can attest that in the two years it took to find medication that worked for me that pushing through that pain was a scary concept and very hard to do, but I knew if I didn't I would end up like them and to me that was scarier than the pain.