Note: This post isn’t about RA, but rather fibromyalgia. I don’t have it, but I know people who do. I’m curious about it.
I read a lot of medblogs out of curiosity and because I like to learn and enjoy expanding my knowledge and understanding. Some of these blogs are written by
Is it really all in your head?
doctors of various disciplines (emergency, surgery, general practice, etc.), nurses and paramedics; others are written by patients.
Some of the patient bloggers have been diagnosed, presumably by competent, caring doctors, with fibromyalgia. They write about the condition and how it affects them. And they express frustration over the fact that so far, no one has been able to pinpoint what causes it, mainly because it presents with no measurable physical evidence.
Nothing shows. Tests come back normal.
On its website, the venerable and respected Mayo Clinic describes fibromyalgia as “a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.” To be diagnosed with fibro, a patient must experience pain in 11 of 18 trigger/tender spots on the body during a clinical exam and have experienced widespread pain for three months or longer. Studies have shown that people with fibromyalgia have somehow undergone changes in their brains that alter the way they perceive pain. They experience pain differently from those without the condition. The cause of fibromyalgia is unknown, but it might be linked to viruses, injury or emotional distress. Studies into the condition continue.
Many fibromyalgia patients take medications available only by prescription, such as gabapentin and Lyrica, to treat their pain. Gabapentin is an anti-seizure drug that, coincidentally, can be effective at relieving nerve pain. Lyrica, made by Pfizer, is the only FDA approved drug made specifically to treat fibro pain, and it’s relatively new. It’s also an anti-siezure medication that works specifically in the brain to change the perception of pain. It’s not an anti-depressive.
Almost all of the bloggers who write about their battle with fibro also write about their anger when their pain is casually minimized and dismissed by some doctors and other medical caregivers.
Many of them have been told “It’s all in your head,” They’re told they’re depressed or unhappy, and the pain is a result. “Think happy thoughts.”
It’s fairly easy to see why fibro is linked to depression; being in chronic, debilitating pain with no way to relieve it, and having to face doctors and nurses who don’t believe you has to be depressing. Really.
Many of the medical bloggers I’ve read express frank contempt for patients who have a diagnosis of fibro or claim to suffer from the condition. Sometimes their comments are mocking and quite cruel. Because they deal with so many people in their ERs and offices who fake pain (for a myriad of reasons), and because the pain and fatigue of fibromyalgia is a medical mystery, they don’t believe their patients. They see them as drug-and/or-attention seekers, or dismiss them as having psychological and/or psychosomatic illness.
My sister, who’s a respiratory therapist (and very nice person in most other aspects of her life), is derisive and unsympathetic toward people who claim to have fibromyalgia (although not to their faces in a hospital setting). In her opinion and from her experience, they’re all frauds.
According to MotherNature.com, “Fibromyalgia affects somewhere from three to six million Americans, 80 percent of them women.”
Surely , all of these people can’t be frauds. While I know that there are some people who fake illnesses for any number of reasons, the idea that three to six million individual patients would go to the considerable trouble of faking fibromyalgia is more unbelievable than the condition itself, as far as I’m concerned.
So what is it?
Is fibromyalgia real or not? If it’s real (and the Mayo Clinic and Pfizer seem to think it is), then why do so many people in the medical professions, from physicians to nurses to paramedics to respiratory therapists, believe it isn’t? Why would medical scientists and researchers give it a name and symptoms if it wasn’t real? Why would they risk their reputations on it?
My husband has been diagnosed with fibromyalgia, along with degenerative disk disease and osteoarthritis. The combination has disabled him; he was forced to retire at the age of 49 and is now on Social Security disability. He is frequently in pain and has, over the years, taken any number of painkilling medications, including narcotic meds and gabapentin. He weaned himself off the narcotic meds because he disliked being foggy and sleepy all the time; today he takes a low dose of tramadol in their place. And like many others who suffer with fibro, he’s been dismissed by some doctors who tell him “it’s all in your head.” Is he depressed? Sometimes, yes. Who wouldn’t be?
I think that people do sometimes have real pain and other symptoms that simply can’t be explained by modern medicine as it exists today. Perhaps “fibromyalgia” is actually a convenient catch-all word doctors use when they really mean “I don’t have a freaking clue what’s causing your symptoms.”
And if that’s the case, they shouldn’t be so quick to condemn patients who present with inexplicable pain.
RheumaBlog 
I agree whole-heartedly. Pain is such a nebulous concept – even for us RAers. Some of us may have the same swollen joints – but one person may need prescription pain meds for it, and another may get by without anything. Pain really is “all in our heads,” but that’s true for EVERYONE because pain is experienced through nerves, which are connected to our brains! Just because there’s nothing to see on an x-ray doesn’t mean there’s no pain… and it’s very sad that people have to live being doubted so much 😦
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Hi Wren, I was diagnosed with fibro … about two years after being diagnosed with RA … so given all the meds I have to take for RA and all the hospital appointments and all the rest of it that you know only too well, I really would have no reason to fake it even if I was a drug and attention seeking weirdo! ;o)
I was diagnosed by an NHS doctor (so not someone who gets money out of me for a diagnosis and continuing treatment!) and it seems it’s NOT just a ‘you have pains I can’t explain, it’s fibro’ but a ‘genuine’ diagnosis, because it’s quite specific areas she tested for pain, and also ones muscles can feel ‘spongey’ and out of condition, and mine sure do! I expect Mr Wren’s might too!
It was a HUGELY helpful diagnosis for me because suddenly my pain made sense – prior to realising I ALSO had fibro, I couldn’t understand why MTX didn’t seem to be working, why all sorts of things didn’t ‘fit’ with RA etc. Then when I realised i had both I started to be able to work out which was which, and realised that actually the RA was loads better than it had been!
For me, the answer to the fibro side of things is undoubtedly SLEEP!! If I sleep well, no problem. Three or four bad nights and I’m one enormous muscle ache … not to mention headaches etc.
I’ve been lucky – docs all fine with the diagnosis and it’s relatively mild so no more nasty drugs – but I know plenty of people who’ve experienced the kinds of frustrations with doctors that you mention!
Polly
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Thank you for another terrific article.
Is Lyrica the only drug approved to treat fibro? I know it was first, but I think Savella and Cymbalta have been added to the very short list. TCAs can help, too (and cost much less than the new meds), but I think that’s an off-label use.
I know exactly what you mean about the derision some medbloggers show. One nurse called fibro the “it hurts to be fat” disease.
You might find the final comment on this post pretty interesting. I wish the author had provided contact information, because what he’s talking about is exactly what I experienced (in fact, I have a post about this in my drafts list).
I hope that your husband is able to find effective pain relief!
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You’re right, WS. Savella and Cymbalta are also drugs approved by the FDA for the treatment of fibromyalgia symptoms. The I missed those; I’d really only heard of or read about Lyrica (I’m guessing it’s the most commonly prescribed?) and at least one of the sources I used for this post mentioned it only. Anyhoo, my bad. Thanks for pointing out the facts.
KevinMD’s commenters on the disease certainly run the gamut of reactions to FM. The first one, by someone called Doc99, is par. “I’d post more, but this chronic fatigue syndrome is killing me.” sigh. Thanks, Doc.
The last commenter (which you direct us to) does, indeed, seem the most level-headed and pragmatic regarding fibro. Compassionate, as well. Thanks for the link. I’m looking forward to your post on the subject. :o)
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This is such an important post. I saved it on my blackberry to read again and again. I have been diagnosed with Fibro- on top of the RA. Mine was based on the fact that though the MTX and Enbrel and Tramadol improved my hands, feet, ankles and knee joints so much- they didn’t touch my hips and back. The only thing that helped was massage. I still wasn’t sleeping and with each exam I still had enough pain that it hurt to the touch. They did X-Ray’s and blood work to rule out Sjogren’s, Lupus or another autoimnune in the hip/back area and they were negative and there was just no other answer. My Rheumy added Flexeril to my regimine to help me sleep and it helped a lot- but I am no longer taking it because of my liver issues. That means that sleep has become elusive again and the fibro is definitely becomeing more pronounced.
I have been very lucky- I have not had the experience of having the pain or my illnesses dismissed by my medical team. On the other hand- other people in my life just don’t get any of it; which is my own fault for pushing myself too hard and pushing through it. I don’t know what I would do if my medical team were to dismiss what is going on in my body. I get enough of that in other places. Hearing stories like this make me realize how very fortunate I am to have the medical team that I have and the family that believes in and supports me as much as they do.
Thank you and Mr. Wren for sharing your story. ❤
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*I hit send too soon* On a side note- I refused Cymbalta and Lyrica. Both are known to cause weight gain and I am already battling that battle so we (my Rheumy and I) made the decision together to not go that route. If I can get that under control we will explore different methods.
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I’ve been not-diagnosed with fibro. Which is to say, given my array of symptoms, I think I have it but my pain specialist is reluctant to give a final diagnosis.
So officially, on paper, I have a chronic, intractable pain condition.
But the treatments that are supposed to help with fibro help me. I’m on both lyrica and cymbalta, and had definite improvement when each one was added to my daily meds, and suffer quite badly if I run out of either. Massage is a HUGE help. Getting daily gentle exercise is helpful. I have the kind of sleep disruptions that show up with fibro, and straightening out my sleep helped.
fwiw, there’s one more thing that I’ve heard mentioned as a possible cause for fibro that you don’t have listed – frequent pain from other sources seems to be a potential cause for it. In my case, the Ehlers-Danlos Syndrome causes all these dislocations and trigger points and GI problems and whatnot, which means a lot of pain. Eventually, your pain receptors react differently if you’ve been under a lot of pain for a long time.
It really angers me when people brush off fibro as a legitimate condition. I was relatively healthy and active, and able to deal with my pain without daily medications, until I developed the secondary pain condition that I believe is fibro. This chronic pain condition has significantly changed my life for the worse, and damn it it’s not some kind of psycho-somatic illness!
Fortunately, I’ve only had 1 doctor suggest that. The rest, my whole array of doctors, have been very supportive of the pain being ‘real’ and needing attention and treatment.
~Kali
http://www.brilliantmindbrokenbody.wordpress.com
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