What’s the SD’s view on this diagnosis? I went to a highly-regarded specialist today who mentioned that fibromyalgia is in the running as the diagnosis for symptoms I’ve had for about eight months. We’re doing every blood test available to eliminate what we can.
Am I sadly behind the times if I am skeptical about Fibro? I would gladly welcome an identifier for what’s going on with me, but I’ve read a lot of skeptical stuff in the past about this dx.
Enlighten/Un-enlighten me, plese?
In my experience, a vast number of junkies say they have this so they can get prescription drugs. Never looked up the particular studies myself, but isn’t it basically a doctor’s diagnosis of “You say you have chronic pain, but bugger all if we know what it is, so let’s say you have this”?
I’m sure someone who has been diagnosed with this will be along shortly to tell me how wrong this is.
I don’t know what to think of it. If you are diagnosed and that leads to treatment that helps you, then run with it. I understand that some people think it stems from lack of deep sleep… the body’s pain receptors never get to reset themselves, so pain just builds and gets weird.
I chatted with a massage therapist about it, and he noted that every patient he’s treated for it also had something about their life that made them severely unhappy. This is what you’re going to hear a lot of–that it’s a disease for bored, frustrated women.
Well, there are real drugs that have been indicated for it by the FDA. That would imply they recognize it exists.
The only reason it isn’t accepted by some is that there are no objective criteria. But that’s the case for a lot of syndromes. Would you argue that IBS and most mental disorders are fake?
It honestly seems stupid to me not to recognize a common complaint with symptoms in common as a disorder. They even have a word for such disorders: a syndrome.
Be skeptical all you want that there’s not a better name for what you have been diagnosed with. But if you are having the same symptoms as someone else who has been diagnosed with fibromyalgia, and the treatments work, why does it matter?
Drug seekers also say they have kidney stones to get drugs, or any number of other genuine conditions that cant be quickly/easily verified.
In itself that proves nothing about whether a diagnosis is real, only whether caution should be used when someone presents claiming such at a hospital or the like.
I think enough people have tried CBT regimes and declined that it cant be viewed as anything ‘simple’ in regards to any psychological factors that may be involved, ie that its just simple malingering or the like. Buts more Im sure there is a subset where its more about getting into problematic behavioural patterns, the problem with syndromes is they are often made up of a variety of conditions with similar symptoms rather than one pure issue.
Otara
Well, my grandmother was diagnosed with it about 10 years ago, and while I’m not sure if the diagnosis was accurate, I can say that whatever she has is completely destroying her. She had to quit her job because of immense pain, and she is psychologically not the same person. She went from being on top of everything to being a disorganized mess who can’t think straight, the last time I was over to her house there was rotting food laying in piles on the kitchen floor, but she refuses any help. In fact she now has a completely different personality and is prone to violent outbursts. She has physically attacked my grandfather multiple times. This is not the woman who (basically) raised me.
I’ve known other people with this disorder and it does seem to have a psychological component, though I have to admit I’ve never seen anyone as messed up by it as my grandmother. I’m not trying to frighten you because I don’t think my grandmother’s outcome is a likely one, but whatever this thing is they’re calling fibromyalgia, it’s real enough for me and my family.
That sounds lke alzheimers, not “friboimylagia”.
I think you’re right to be doubtful if that diagnosis is accurate as an entire explanation.
Otara
She’s been tested for everything under the sun, including lupus and MS. I’m pretty sure if the doctors suspected alzheimers they would have said so. Also, she’s not even 50.* I know there is such thing as early-onset but it’s pretty rare. Really, if anyone can figure out what’s wrong with her we’d love to know.
(Just wanted to clarify: I used to work in direct care of alzheimers and severe dementia patients and I really think whatever it is, it’s something other than that.)
*Cue the inevitable ‘‘why is grandma not even 50?’’ Answer = she’s my grandfather’s second wife.
I don’t know if it’s universally accepted, but there are supposedly some “trigger points”- specific characteristic spots that are painfuly sensitive to pressure- that are considered an objective diagnosis of fibromyalgia.
On second thought, goddammit, you might be right. 
I had never even considered early-onset Alzheimers before. Maybe she’s got both.
I do have fibromyalgia, and from what my doctor and hand/arm/hand specialist has told me, the trigger point test is only an indicator, that there’s not definitive diagnosis. That said, it is a real medical issue with real symptoms including pain, ridiculous fatigue, mental fogginess and other problems.
The good news is, (from what I’ve read on it) it’s neither a degenerative disorder, nor a progressive one. I’ve found (only recently) that vitamin D, magnesium, and vitamin B complex really seem to help, especially with the fatigue.
My take, and that of a couple of doctor friends, is that it’s the random catch-all diagnosis of our day, the “chronic fatigue syndrome” or “multiple chemical sensitivity” of the 2010’s.
I’m sure the people who have it have something, but given the laundry-list of supposed symptoms, complete lack of agreement on how to diagnose it, and the vagueness of the claims for the drugs (they’re pretty much just relaxants and painkillers), I’m not at all convinced that they all have the same something.
I think it’s just a convenient box to put folks in when you run out of ideas, and if you’re lucky the classification will lead you to a set of potential treatments that might help out with what they’ve really got. It’s certainly not well defined enough to meet scientific muster as an actual disease, not when people who have non-overlapping sets of symptoms can all be described as having “classic Fibromyalgia.”
The “real drugs” the have for it are rebranded anti-anxiety drugs, like Lyrica. And Lyrica got sued over misleading marketing last year.
In all honestly, fibromyalgia diagnosises make me angry. It’s not a real diagnosis, just a label slapped onto the symptoms to get people to stop asking questions about what’s wrong with them, little better than calling something idiopathic whatever. Some of the people who “have fibromyalgia” are probably depressed, and giving them this label instead doesn’t do anything to help resolve the depression which is causing their symptoms.
Another reason I hate hearing that someone got a fibromyalgia diagnosis is because that’s what a GP dismissed my mother’s foot pain as until she went to an immunologist - who in one visit realized that it was a severe vitamin D defficency causing her pain, not “fibromyalgia.” Blood tests showed that her vitamin D levels were 1/4th of the norm, and treating her with 50,000 IU caused the pain to disappear almost immediately. What if that’s what’s wrong with people, and doctors are like my mom’s, too lazy to investigate further? A huge number of people, virtually all of us who live in the northern half of the country, are vitamin D deficient to varying degrees, so it wouldn’t surprise me at all if this mysterious disease turns out to be treatable by taking 4000 IU of vitamin D a day.
Anyway, if the pain is related to depression or vitamin D deficiency, and doctors simply write it off as fibromyalgia they’re being done a diservice.
I hear you, but thats more an issue of misdiagnosis and thats bad pretty much no matter what.
But there are people who have fibro that are pretty tired of being told they have depression as well and dont seem to respond to standard depression treatments.
And living in Australia makes the likelihood of vitamin D pretty unlikely for them as a general cause. It might be we’ll find out it is some simple thing like that, but until then being on the merrygoround of ‘lets test or treat for this, it might be THAT’ can be a real problem for people who fit the criteria as well. Finding a balance isnt always easy.
Otara
Because there is no pathognomonic test for it, it may be a constellation of several poorly understood problems, some of which would meet ordinary criteria for illnesses but are simply unknown to medicine at present.
There is no doubt at least some subset of “sufferers” are simply placed in this category as a wastebasket diagnosis, and no doubt that drug seekers take on this diagnosis as a convenience.
Because some of the medications used are otherwise helpful in “purely mental” conditions such as depression, many look upon this diagnosis as being a mental condition. But of course mental conditions are also fundamentally biochemical just like any other illness.
The remarkable (caution–my personal observation as a physician here) focus on the “suffering” part of many fibromyalgia patients sets it apart and makes it unappealing for caregivers. I’ve seen patients dying of horribly painful conditions such as metastatic bone cancers who can’t hold a candle to the “suffering” of fibromyalgia, and when you cruise blogs and sites, I suspect you may be struck by the emphasis on suffering and victimhood. My 2c.
Thanks for the responses; I have some prejudices about the syndrome, as I’ve had some former friends who became professional victims with Fibro and/or CFS diagnoses.
I’m hoping, perhaps perversely, that the blood work comes back with arthritis, Lyme disease, Epstein-Barr/mono – something a bit more solid. All I know is that I’ve felt awful for eight months and am in nagging pain 24/7. Being in a CAM walker and on crutches for the last three weeks (broken foot) have all but killed me with the extra effort.
The sleep theory is something I did some reading about last night and it is interesting. I have never slept well, even as a little kid.
Would really like to hear more thoughts, keep 'em coming!
As a P.S.: we did change my anti-depressant from an SSRI to an SSNI(?) that is supposed to have some analgesic effects.
I have an aunt who was diagnosed with fibro more than a decade ago. She never received satisfactory treatment, but I sometimes wonder how much of that is on her and not her doctors. She’s kind of a mess mentally, (family, work, friend life is in shambles - and was well before diagnosis) and now that others mention it, she never was a good sleeper, either. Other friends and family have always said of her, “if she would just do… such and such… things would be so much better,” kinds of things.
The only relief she seems to get is from smoking a lot of pot. She wakes up nearly screaming from pain in the mornings. It’s horrible to hear for a visitor! But she claims that once she gets a smoke in, she’s better. I’m not exactly familiar with what pot does to regular users over a long term, but I can say that the times I see her being productive, cleaning, cooking, doing chores or shopping for the house - are only after she’s given herself a “treatment.”
I have two takes on FM – and these are far from professional, just viewing from the outside…
Two very good friends of mine are massage therapists who do not know each other and live on opposite sides of the country. They get a lot of FM patients and both have made similar comments about what they are witnessing in the disorder: 90% of the time it afflicts women from a certain era, the tail-end of the baby-boomer generation. These women are now in their early 40s or now into their early 70s. They are often disgruntled with what life has thrown them; unsatisfactory careers, problem relationships, etc. There seems to be something in their lives that makes it a struggle including various emotional difficulties. The massage therapists speculate that the FM is somehow manifesting itself as a reaction.
I have two very good friends who have been diagnosed with FM; one is a school teacher in SoCal and another is a nurse in Colorado. The Teacher spent several years in bed, completely debilitated by the disorder, often unable to get out of bed or move without severe pain. She did her own research and changed her diet rather drastically, discovering that for her, the consumption of meat proteins caused flame-ups in the FM. A transplant from Scotland, she gave up her beloved meat and potatoes diet for a vegetarian diet. Occasionally (when she visits home), she told me she will “cheat” and have some blood pudding or lamb and she invariably suffers with a flare-up of the FM. She has been able to leave her bed and after not working for several years, is back teaching and having a full career which she never thought she would be able to have again.
The Nurse who lives in Colorado went out on disability a year ago with FM and for her, it has only gotten worse. She has days of endless pain and suffering and – in keeping in mind my massage therapists’ analysis – fits the profile of a woman who is suffering in her life and her marriage. Even as a nurse, she can’t explain the pain but on her Facebook page, I see constant posts about how she is having difficulty in her life which seems to beget FM flare-ups. I also told her about my other now-vegetarian friend, but the Nurse has not been willing to try a vegetarian lifestyle to see if that would help her flare-ups. She seems to like to suffer or at least she likes to post on Facebook extensively about her suffering.