Hi Amy-

Short question here:
What is the deal with Fibromyalgia? I have read that its existence is disputed, but is it a real condition and if so, what is it?

Thanks-
Meagan

Dear Meagan,

This is a great question as it is something that I have wondered about too. My understanding is that Fibromyalgia is sort of an umbrella term for either unknown, or a combination of conditions. But hey, we all know that I am not a doctor and even my Google-Fu comes up a little short on this question.

So I did what I often do when asked a medical question. I futz around online and realize that 90% of all internet links tell me that every symptom ever experienced by anyone ever, is either cancer or something that can be cured by homeopathy or Reiki. So I close my browser, pour a glass of wine and pet my dog. Then, I go pester an actual MD until they agree to help me find an answer.

And today, dear readers, I went and asked this question to not only a real doctor, but the ultimate Skeptic-Jedi himself, Dr Steven Novella.

For those who do not know him, Dr. Steven Novella is an academic neurologist at Yale University School of Medicine. He is the host of the widely popular, Skeptics’ Guide to The Universe podcast, he is the president and co-founder of the New England Skeptical Society, he is the author of NeuroLogicaBlog, a popular science blog that covers news and issues in neuroscience general science, scientific skepticism, philosophy of science, critical thinking, and the intersection of science with the media and society. He is a popular speaker at skeptic conferences and one hell of a bad-ass saxophone player.

One of those things may or may not not be true.

Here is what Steve had to say:

Amy,

That’s a really complex question. Here is a short answer.

The diagnosis was developed about 21 years ago, and yet remains controversial. There is no “gold standard” for its diagnosis. It remains a clinical syndrome with some specific and some vague criteria. Basically it is a syndrome of chronic muscle and myofacial pain. Some experts dismiss the diagnosis altogether, wile many believe that it exists but agree that it is not clearly defined and diagnosis is problematic. It is likely a combination of many disorders with similar symptoms. A subset appear to have specific tender point (or trigger point) tenderness which should be used as diagnostic criteria. However, many people with the diagnosis do not have the specific findings and simply have less specific symptoms of chronic pain. It is also comorbid with things like depression and sleep disorders, but it’s not clear what is causing what.

So – the diagnosis is taken seriously, but is controversial, poorly understood, and is definitely fuzzy around the edges diagnostically.

Hope this helps. Have a great holiday.

Steve

Wow. Skeptic-Jedis sure are nice.

Thanks for taking the time to talk with us, Steve!

I hope this helped you, Meagan. You can find more information on the condition if you click that Google-Fu link above in the first paragraph of the post. Just please remember, take all your google results with a grain of skepticism. ;)

That is it for now. I’m off to the Surly mines…

Got a question you would like some Surly-Skepchick advice on? Send it in! We won’t publish your real name, unless you want us to and creative pseudonyms get bonus points! Just use the contact link on the top left of the page.

Surly Amy art by Jill. Photo of Dr Novella as Dr Horrible by Surly Amy

Amy Roth

Amy Roth

Amy Davis Roth (aka Surly Amy) is a multimedia artist who resides in Los Angeles, California. She makes Surly-Ramics and writes about vegan food. She is the founder and president of the Los Angeles Women's Atheist and Agnostic Group: LAWAAG. Follow her on twitter: @SurlyAmy or on Google+.

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29 Comments

  1. Profile photo of porlob
    December 3, 2012 at 12:42 pm —

    Interesting. Somehow I got it in mind that fibromyalgia was basically the same thing as, like, an “energy blockage,” i.e. nothing.

    But recently a friend of mine was diagnosed, and she definitely has a real condition. I was wondering if her doctor was not-so-good. But it sounds like it’s more complex than I had first thought.

  2. Profile photo of BrieCS
    December 3, 2012 at 1:33 pm —

    Well, if what I have isn’t fibromyalgia, I’d like to know what it is. The only other diagnosis I’ve received is “chronic fatigue, multiple joint and muscle pain, insomnia”. Which the doctor only said he used because he thinks that chronic fatigue and fibromyalgia are the same thing, he just doesn’t like the word fibromyalgia.

  3. Profile photo of Nicole Introvert
    December 3, 2012 at 1:59 pm —

    I’ve been diagnosed with Fibromyalgia since about 1997. I was around 17 when I got the diagnosis. It came up because I was having a ton of muscle stiffness, worse in the mornings and having a hard time moving around. Pair that with lifelong anxiety and depression symptoms and voila!

    I’ve felt conflicted about the diagnosis for the past 15 years. I don’t know what to believe. I know that I have muscle pain as I’ve gotten older it’s mostly in my shoulders, across the top of my back and in my upper arms, and extremely tender points on my body where it can even hurt to receive a hug at times.

    I still suffer from anxiety nearly all the time, and periods of depression.

    Throw that in with the fact that I am pretty damn introverted and get tired from being around people easily. I generally easily fall asleep very early in the evening but then have trouble staying asleep.

    So, I don’t know what’s what. I’ve been pretty desperate in the past. And tried chiropractic (thousands of dollars worth) and one Reiki appointment. I stopped myself before trying accupuncture. I took up running and it helped a lot, but then I had a non-related injury and some symptoms are creeping back in.

    The pain and symptoms are real, but I have no idea where they come from or why and I never know what to believe. All of the FM groups I have ever found are total jokes with a TON of woo.

    Thanks for addressing this Amy and Steve. You are two people in the skeptic community that I highly respect and have been influenced by, so it’s nice to hear it coming from you.

  4. Profile photo of Luna
    December 3, 2012 at 2:37 pm —

    Fibromyalgia is what some call a wastebasket syndrome, in other words many symptoms are tossed in there when people (especially women) complain of problems. This doesn’t mean it’s not real; there is no doubt something wrong. But the thing to know is it’s probably more than one medical problem going on.

    For example: I was diagnosed in college. Years later I found out a magnesium deficiency can cause the same symptoms. Another woman diagnosed had to use a wheelchair. Certainly not a magnesium deficiency; but could fall under Fibromyalgia whether it’s a real syndrome or a group of medical problems all at once.

    I was also convinced I had chronic fatigue; later I began having palpitations and was diagnosed with mitral valve prolapse. This solved my fatigue problem because it turns out my low blood pressure was causing exhaustion and dehydration caused my heart to “shrivel”.

    Does everyone with chronic fatigue have the same problem I did? No, but whether or not it turns out to be a “real” disease, there could be one or more pinpointed causes, or many separate ones for people with the same illness.

    Find a brilliant doctor and hound them until they give you an answer. It took 10 years for my doc to figure out it was my low blood pressure.

    • Profile photo of GeekGirlsRule
      December 3, 2012 at 5:42 pm —

      This kind of bears out my suspicion that Fibro and CFD are things doctors slap on what’s wrong with women in order to shut them up. Yes, there are real problems, but rather than get to the actual cause, they say, “Well, Fibro, CFD, PCOS (which I know is a real thing, but I had a doctor try to foist this off on me just to shut me up) so here’s some drugs to treat symptoms instead of cause, go away hysterical women.”

      I finally found a doctor who would listen to me, and when I told him the previous doc had tried to slap a PCOS diagnosis on me, looked puzzled and asked, “Why on earth would she do that?”

      • Profile photo of Luna
        December 3, 2012 at 6:55 pm —

        Absolutely, they figure they’ll “humor” us so they can get on to their next appointment. I am lucky to have a doctor who thinks nutritional deficiency first, then tests later. He’s been right on about 70 percent of the time. But I’ve had a other male doctors try to snow me, plus they expect me to have tests done without telling me why. Annoying.

        This is where low cost women’s clinics are so good, I’ve had a stellar OBGYN for years who actually takes my concerns seriously.

        Sorry you had to deal with stupid docs. I worry about PCOS but also think most doctors will just roll their eyes at me.

  5. Profile photo of The Edge
    December 3, 2012 at 5:56 pm —

    I was diagnosed with Fibromyalgia a decade ago. I’m in the camp that believes it is a “we really don’t know what the problem is but we’ve ruled out the easy stuff so here’s a label” syndrome (I have an advanced degree in molecular biology so I can read most of the medical journal articles for myself).

    I have horrible problems with sleep (I did a sleep study and found nothing), lots of musculoskeletal pain, fatigue and tender points but I also get frequent joint injuries. I feel much better when I get a good nights sleep and exercise but the best thing for my pain is warm weather. Here comes Winter, season of pain.

    I’m looking for a new doctor because my current doctor is clearly tired of dealing with my demands to try new treatments or tests. I’m just not satisfied with the current “diagnosis.”

    Thanks for covering this topic, even if there isn’t a satisfying answer.

    • Profile photo of chrisfixedkitty
      December 3, 2012 at 10:49 pm —

      I’m in a similar catch-all “diagnosis” boat with post-viral chronic fatigue and the good fortune of being a molecular biologist to weed out the woo. Here is Winter, the season of brain fog, energy drain, muscle aches without reasonable cause, and SADD on steroids.

      Likewise, the CFS/ME support groups are very woo-centric and not very supportive if you aren’t “open to” every aromatherapy and Eastern wisdom thing that “might help”. I wonder if there’s room in Skepchick or Atheism plus for a “skeptics with chronic illnesses” discussion forum area? Anyone have ideas on how to start something like this?

      My current doctor will read an abstract on a potential treatment, but is otherwise useless. That said, she helped me try an off-label antiviral suppressive treatment from a small preliminary trial. It has really helped with my mental function symptoms. I’d look for more of a partner-doctor, but I don’t want to be a doctor-hopping, non-testable-problem, female patients. Those 3 strikes mean no doctor would take me seriously about anything again. That’s too high a cost to risk.

      • Profile photo of Nicole Introvert
        December 4, 2012 at 12:15 pm —

        I tried to start a thread about chronic pain illnesses on the A+ forum in the support section. It never really took off. You are more than welcome to bring it back and see if we can breathe life into it again.

        • Profile photo of chrisfixedkitty
          December 4, 2012 at 10:19 pm —

          I’d like to do this and call it Skeptical Spoonies, but I can’t -find- the support section over at A+. I usually just look at the popular stories linkpage every once in awhile, so perhaps I’m not recognizing where to head. Help?

  6. Profile photo of John the Drunkard
    December 3, 2012 at 7:56 pm —

    Quackwatch has several good pages on Fibromyalgia, guaranteed woo-free.

    http://www.quackwatch.org/03HealthPromotion/fibromyalgia/index.html

    They are a bit on the old side, there is probably new stuff out there, just not so easy to cull from the Homeo-reikistic crap.

  7. Profile photo of Elvismorte
    December 4, 2012 at 5:33 am —

    Deborah Barrett who (I believe) is the daughter of Dr. Stephen Barrett (of Quackwatch) was diagnosed with fibro. She wrote a book about chronic pain. While I haven’t read it myself, I bought it for my best friend who was diagnosed last year with fibro. She really liked it and I imagine it isn’t filled with a ton of woo being that a Barrett wrote it and my best friend wants to murder kick the next person who suggests cutting wheat out of her diet to cure her crippling pain.

  8. Profile photo of Elvismorte
    December 4, 2012 at 5:37 am —

    BTW, there seems to be a decent number of folks reading Skepchick who suffer from chronic pain of one type or another. Does anyone know of an internet support/information group for this sort of thing that is evidence based? I know my friend would love something like that. Or maybe one could be started…

  9. Profile photo of Tanya Higgins
    December 4, 2012 at 8:54 am —

    I don’t know of an evidence-based support group, but I would sure as hell like to join one. I was diagnosed a few years ago and the swarms of (what should be) obvious b.s. surrounding the issue are overwhelming at times.

  10. Profile photo of knitty
    December 4, 2012 at 12:06 pm —

    I’m one of those dignaosed but not sure what to make of it either. I don’t have the insomnia problem. I’ve always been a fairly deep sleeper. But after getting rear ended when I was about 24 I developed chronic pain. I have most of the trigger points etc.

    I am in pain everyday. I’ve been on the old school drug solution of imipramine and the new school drug cymbalta. I am thankful that pharmaceutical companies actually have done some development into drugs. I have unfortunately went to a physio therapist that was a chiropractor for my chronic neck pain. Long story short I think he messed up my neck more than the original accident. Which may be a huge part of my worsening symptoms.

    Fibromyalgia and depression often go hand in hand but any chronic pain syndrome does. I manage better when I’m exercising and eating well and my weight is on target. But right now no drugs.

    There is still so much to undertand and many people are so skeptical of it that its not taken seriouly, but if you touch me on a trigger point you’ll see me wince. It is real. It hurts and it can be debilitating.

    • Profile photo of Nicole Introvert
      December 4, 2012 at 12:19 pm —

      Hey neck-pain-made-worse-by-a-chiro buddy! Same thing happened to me. I ended up at an Orthopaedic doctor to find a shit ton of inflammation pretty much caused by the chiropractor who just swore he could cure me. Thankfully, I received some good physical therapy from the ortho’s team and stopped going to the chiropractor.

      I also found out that I have “Military neck” meaning my bones are straight where they should be curved in my neck. Who knows if this adds to any of my symptoms.

  11. Profile photo of knitty
    December 5, 2012 at 12:15 am —

    Sooo. Woo free support groups would be awesome so far I have ended up on a lot of sites that suggest acupuncture, chiro and Chinese herbs. I’d like to hear other people’s experiences.

    If anyone ends up setting up one on A+ can you post here?

    Also, is there an alternative site we could try? We could do a WordPress blog?

  12. Profile photo of cajela
    December 5, 2012 at 1:33 am —

    Oh yes, count me in for the support group! I have a post-infectious fatigue syndrome: I have trouble with shortness of breath, some insomnia, lots of fatigue, but luckily no pain. I have had all the tests. My heart is in great nick, and my nutrition’s good except VitD. I acquired adult onset asthma, and I did have a partly collapsed lung but it’s back up now. So it’s mostly just waiting to get better, and doing what exercise I can. There’s a group on fitocracy called “spoon-counters” which I recommend.

  13. Profile photo of Nicole Introvert
    December 5, 2012 at 6:42 am —

    There is an A+ discussion thread that I had started here: http://atheismplus.com/forums/viewtopic.php?f=15&t=818

    I am going to also start a Facebook group. It will be closed which means people who aren’t in the group can SEE the group, but not the posts. I really like chrisfixedkitty’s Skeptical Spoonies name.

    If anyone wants to help admin the Facebook Group that would be fantastic. I am in charge of a couple others, so I may not always be able to give full attention to this particular one.

  14. Profile photo of Amy Roth
    December 5, 2012 at 11:58 am —

    I just want to say that I’m really proud of all you guys for starting up a group. This is one of the reasons why this blog is here, to inspire stuff like this. You guys are awesome. :)

  15. Profile photo of chrisfixedkitty
    December 5, 2012 at 12:35 pm —

    See what you started, Amy? ;D Keep it up!

    Now that it exists (yay, Nicole! I just requested membership to the group), I feel like we should alert other pockets of the skeptical community that this resource (ok, each other and a place to virtually gather) exists. Perhaps we can brainstorm a shortlist:
    1. a post on the A+ board
    2. Posting a link to the A/A group on Ravelry (yarncraft community BB, I can do that one)
    3. messaging any of the skeptical bloggers to whom it applies so they can join. I’m thinking of Greta Christina, whose post-cancer issues sound so familiar, but also any fellow spoonies, arthritis sufferers, etc.

    Who else/what other skep-sites should be alerted? The 9 of us are a fine start, but that’s a tiny community.

  16. Profile photo of Katchen
    December 5, 2012 at 12:47 pm —

    Hi; I sent a join request to the fb group. I love my other support group, but there is a fair amount of woo-peddling; an alternative would be very welcome!

  17. Profile photo of daedalus2u
    December 5, 2012 at 4:16 pm —

    Fibromyalgia is one of the disorders that I consider to be characterized by chronic low nitric oxide. I appreciate that chronic low nitric oxide is not a generally recognized condition, but it is the subject of my research. Low nitric oxide does explain essentially all the symptoms, but increasing your nitric oxide level isn’t simple or easy and the product I have (which I am trying to commercialize) isn’t ready yet.

    According to my hypothesis, what brings about chronic low NO is usually “stress” (the fight-or-flight state triggers a low NO state) that doesn’t get resolved. Stress causes low NO and many stress compensatory pathways are then triggered by the low NO that stress causes (for example the respiratory burst that activates the immune system).

    The reason that bad stuff happens with things like CFS, Fibromyalgia, ME, post-viral and post-bacterial disorders is that during acute “stress”, some things (such as healing) get turned off, to divert resources to staying alive, or as I like to say, “running from a bear”. Your physiology will let you run yourself to death. That is a “feature”. It isn’t that running yourself to death is a feature, but the ability to do so is. The reason we can do that is because organisms that could run themselves to death out-competed organisms that could not and so present organisms are only descended from those that could.

    Diverting all resources to escape in the “fight-or-flight” state is a tremendous survival trait, but evolution only configured physiology to minimize the sum of deaths from too much of the trait and from too little of the trait. Modern living has interfered with the pathways that physiology uses to turn off the “fight-or-flight” state. That is what is needed to recover from these low NO disorders.

    The placebo effect is the psychogenic activation of pathways that turn off the “fight-or-flight” state. That is why there is so much woo and quackery in things like fibromyalgia. Anything that is characterized by low NO will be susceptible to placebo effects.

  18. Profile photo of chrisfixedkitty
    December 5, 2012 at 5:05 pm —

    I’ve taken a look at your blog to evaluate your info dump. The idea that some of these problems may be caused by the host immune system failing to shut off appropriately or chronically reacting to some low level viral infection, particularly the integrative viruses, is not new. Maybe not helpful yet, but not new and not unknown to medical science.

    However, I’m generally very skeptical when I hear a claim that low levels of one single factor, such as a vitamin or a messenger molecule (like NO) is responsible for such a variety of diseases: “CFS, Fibromyalgia, ME, post-viral and post-bacterial disorders” in your comment.

    I would like to quote from your blog:
    “Competing financial interest: I am working on researching and commercializing products using skin resident commensal autotrophic ammonia oxidizing bacteria to naturally supply basal NO under normal physiological control via sweating to prevent and treat a number of disorders, including ASDs.”

    Let me paraphrase: you’re trying to get skin bacteria to produce NO (which only lasts for seconds in vivo*) and somehow get it into the body by sweating, a process the body uses to get things OUT. And you would like to sell this product.

    *http://ajpcell.physiology.org/content/271/5/C1424.short

    • Profile photo of daedalus2u
      December 5, 2012 at 6:37 pm —

      Yes, that is correct.

      I am completely upfront about my financial interest in this. I have not sold anything yet, and won’t until the proper time.

      Here is a reference laying out more theory of how these bacteria might be important and why the skin is the right target organ for delivery of NO/NOx species.

      http://books.google.com/books?id=a3mwmXzpsjkC&lpg=PP1&pg=PA103#v=onepage&q&f=false

      Nitric oxide physiology is quite complex. The lifetime of NO as NO is short (in blood), but there are other species that persist for longer, S-nitrosoalbumin is the most abundant S-nitrosothiol, and there is much cross-talk between different pathways.

      Another active NO/NOx species is nitrite. Nitrite is the primary produce the bacteria I am working with produce. Nitrite is stable in the blood and also has complex chemistry with much cross-talk with other NO/NOx pathways.

      The levels of NO that are important are sub-nanomolar. At sub-nanomolar levels the lifetime in blood is a lot longer. Blood is not the major target of NO, oxyhemoglobin is the sink for NO (it then makes nitrite, nitrate, and nitrosylheme). In plasma (the fluid that most cells are in contact with), NO is pretty stable. The background level of NO is not like a vitamin, or nutrient, it is unique.

  19. Profile photo of annabolic
    December 5, 2012 at 10:53 pm —

    Last year I read a really interesting book, by a medical anthropologist if I remember correctly, called “The Fibromyalgia Story: Medical Authority and Women’s Worlds of Pain” by Kristin K. Barker (Temple University Press, 2005). I think it did a really good job sticking to the evidence and offering an interesting medical/social context without dismissing the very real pain that people with fibromyalgia experience.

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