I don’t think any of us can deny that the pain that fibromyalgia sufferers feel is real. Nobody here is going to deny someone else’s pain and experiences.
But the question remains- is fibromyalgia a traditional disease with a clear cause and effect, such as diabetes? Or is it a stress reaction? Or an untreated mental disorder? Or is it a cultural manifestation, a kind of modern hysteria? Are things like cognitive behavior therapy likely to be at all useful, or should we stick with drugs?
To me, there are a few things that raise my eyebrows. One is that sheer number of symptoms. Just like I’m suspicious of any drug that claims to cure a huge variety of symptoms, I’m a little suspicious of a disease that can cause a huge variety of symptoms. All-over pain I can accept. Adding “diarrhea” and 'ringing ears" and “I feel gross when I wake up” and “I forget stuff” seem a bit much. Especially since all of the symptoms are things that healthy people experience on a fairly regular basis.
Another is the quack factor. A lot of fibromyalgia sufferers are dotty in other ways. And the mass of alternative medicines, supplements, doctor conspiracy theories and associations with other questionable disorders doesn’t help. Yes, this could be a result of it’s unknown cause. But I dunno. It seems like a lot of weirdos are latching on to this one.
Let’s keep this civil. Nobody is saying anyone is lying or that anyone’s experiences aren’t valid.
If fibro is caused by a problem in the neurochemisty, which I believe it is, it’s not surprising that it can manifest itself in many ways. All the things that a body (brain) is capable of feeling can be affected. I grew up with fibro so I just assumed everyone felt the way I did. I found out later that other people did not experience what I did. I had symptoms that seemed to apply to different other disorders but tests and experience ruled them out. I kept trying to find out what was wrong with me, because something surely was, until about 20 years ago I was talking to a friend that had been diagnosed with fibro. I was surprised to find out that the diagnosis fit me but my doctor at the time was of the opinion that the symptoms were caused by anxiety. I saw a psychologist for a while and he finally said that I seemed able to deal with problems in my life and that he didn’t need to see me anymore. I was still ill so went back to my dr who said that I just “hadn’t dug deep enough”. That was the last time I saw him. I later saw a rheumatologist who diagnosed fibro.
It’s likely that not everyone that thinks they have it do. I may not, but what I have is close enough to the symptoms for fibro that it’s likely. I’m convinced that there is a strong genetic factor to it as I can trace it in my family back to my great-grandfather.
Pain meds have not been helpful. I’m now taking Lyrica and Cymbalta which do help some. Enough to warrant continued use for the time being. Over the years I’ve tried many different drugs. They were no help. These are the first that are helpful.
I do believe that cause will soon be found for fibro. I don’t mean tomorrow or the day after but in a few years as more is learned about brain chemistry.
Well, I do know that hypercalcemia in combination with severe D shortage is a killer. I was doing 5 or 6 red bulls to stay awake enough to work my normal work day. The fatigue made me have the classic brain fog enough that only my normal anal compulsive coveryourass notetaking and organizational tricks managed to keep me functional at work in a fairly demanding nit picky job. So, fatigue can cause brain fog. Hypercalcemia can also cause constipation. Vit D can cause runs …
I get migraines, and any headache sufferer can tell you that once you hit a certain level of pain, you have issues concentrating. Having suffered chronic pain from a severely hosed back, the distraction is about the same. When I am having a pseudogout flare, my main thought tends to run oh god please dont let anything hit my foot … and where my indocin and colchicine are and how long i can take it until i get mouth sores. Pain can cause brain fog.
Almost anything can cause tinnitis, and IBS can be stress related. Pain is stress … dealing with people who think you are faking it is stress. Pain is subjective and until they come up with a way to plug you into a machine and have it read out exactly how much it hurts, trying to get disbelieveing doctors to understand how much something hurts is stressful.
I have the feeling that fibro is simply a lot of odds and ends going wrong all at once… not one single thing as fibro friends of mine are all slightly different. I do think that the therapy for it will be a combination of things. I can see a combination of nutrition and suppliments, certain chemical and hormonal adjustments that need to be made, and perhaps something along the lines of specific physiotherapy. There might even be some sort of virus or bacterial involvement. Look how whacked Lyme disease is. Ulcers can have a bacterial involvement that you have to be genetically succeptable to.
I disagree. Some people lie about pain. For example Crystal Mangum of the Duke Lacrosse rape hoax.
A certain percentage of people will shamelessly deceive themselves and others if they feel it will get them sympathy, attention, an excuse or alibi, or some other advantage.
I’m not saying that the group of people known as “fibromyalgia sufferers” are liars, but I would guess that some of them are. Just as many accusations of rape are false. It’s just human nature.
My husband’s doctor tells us that when autopsies are done on patients who have fibromyalgia, that their muscles show visible changes, that they tend to have the fibers stripped of a protective coating near the ends (what this is, I don’t know) and that more than anything else, leads him to think that fibromyalgia is a “real disease”.
Seriously? is “sufferers” such a loaded word? I’d use it casually to indicate anyone has any condition, even if the condition didn’t actually involve suffering. My mother suffers from myopia, but it doesn’t mean she’s writhing in agony or cursing the day she was afflicted with the cruel, heartless condition that limits her ability to see things in the distance… Am I the only one who uses the word as a synonym for “has [a medical condition]” without trying to imply “Oh, the suffering! The pain, the agony, the misery!”?
Chronic fatigue brain injury link (although reading the article it looks like it’s based on speculation, rather than data from actual brain scans).
My point would be that tests show differences in the brain activity of people with FMS vs. healthy people, and that FMS-like pains can be induced in healthy people by messing with their deep sleep cycles. I haven’t found a decent source to cite but one webpage says "Sleep laboratories have found that nearly half of all people with fibromyalgia have disturbed (by intrusive alpha wave periods) delta stages, and wake up feeling as, or more, tired than when they went to bed. " It’s true that some of the people claiming to have pain from FMS are probably liars because, well, that’s people for you, but there is evidence of different reactions in the brains of many Fibromites (is that word better than sufferers? -shudder-) which has to add some weight to their claims.
even sven, to address your mention of memory problems in the OP… if you can accept that fibro sufferers have sleep disorders and are typically excessively tired, then memory problems shouldn’t be terribly surprising. Tired people forget stuff.
I believe there are a lot of other connections like that amongst the seemingly-random variety of symptoms. My own experience was that changing my diet = improvement in IBS = improvement in FMS. It’s not so hard to see that a body that’s experiencing diarrhoea daily for years on end is probably being stressed by that, so curing the digestive problems takes the strain off the body’s other systems and results in an improvement in general health and well-being.
Lots of people lie. Some people injure themselves at work, claim worker’s comp, recover but pretend to still be injured so they can continue to collect worker’s comp or disability. Does that mean that everyone who’s every claimed worker’s comp or is on disability is lying about their condition?
A lot of people with various diseases and conditions will exaggerate for sympathy, attention or excuses. Does that mean that anyone with a medical condition is lying or exaggerating? So why does it seem that the default for people with fibro seems to be they must be crazy, lying or exaggerating?
Just as in the other thread, people with fibro are getting painted with a really broad brush. I just don’t understand the prejudice or hostility from some of the people in these threads, did someone who claimed to have fibro fall on your puppies?
My grandmother suffers severe fibromyalgia. I am very close to her so I have witnessed the disease progress steadily since she was first diagnosed. She has declined sharply over the last 10 years. She takes a cocktail of drugs that don’t help her. She suffers depression and irrational, sometimes violent mood swings. She takes care of her four grandchildren. She tries to stay as active as possible, but eventually she had to quit her job and go on disability. There are some days she is fine, and other days she is too weak to pick up her coffee mug.
This was in fact the moment when I realized something was really wrong. We were going to pick up a takeout order from the pizza place, and she was physically incapable of lifting the pizza boxes. I was stunned. My grandmother (my grandpa’s second wife) is actually only 47 years old, couldn’t have been more than 43 at that time. She has gone from being a strong, healthy woman to a mess.
She is always hours late for any plans we have. She can’t keep house. She can’t remember anything. It’s not unusual to arrive at the store with her only to have to return to her house to get her purse, which she has left in her trunk. She mixes up words, saying ‘‘microwave’’ when she means ‘‘refrigerator’’ for example. I don’t believe she should be driving–but this is part of the problem–she is extremely sensitive to criticism or implications that there are things she can no longer do. That’s not really consistent with her personality in the past–it’s this new person emerging.
They keep running tests on her – trying to figure if it might be lupus or MS. Nothing seems to help her. She just gets progressively worse.
My grandmother used to be a quite psychologically stable person, but her behavior is getting increasingly erratic. Her personality has changed significantly. Her irrationality is so thick it’s hard to relate or know how to help her. My grandfather takes care of her, but I’m getting increasingly concerned about her ability to function in rational society. It doesn’t help that her son recently died.
I don’t know what fibromyalgia is, whether it’s a disease or complex of symptoms, whether it’s neurological or chemical or what. There is a clear psychological and emotion-regulation component, but she experiences incredible physical pain as well, and often has uncontrollable shaking in her hands and arms. The doctors seem to be confused as well. They just run an endless battery of tests. I think it’s notable that her decline began around a time of severe stress in her life. Maybe it is triggered by periods of stress, or maybe it has a strong psychological component–or maybe it really is a kind of mental illness.
What I do know is that fibromyalgia is real and horrible for everyone involved. My grandmother is like a mother to me, and I feel like for the last ten years I have been watching her waste away and die.
I have a friend who was recently “diagnosed” with it. She and her husband have managed to collect disability insurance under three or four different guises in the last 10 years, so while I think fibro is real for many, there is definitely room for abuse and I think my friend is lying. It’s the perfect disease for people who’d rather sit around smoking pot all day than work for a living.
Just so you know, I’m not claiming that. I’m willing to concede the possibility that some percentage of people with fibromyalgia have are “really” ill (whatever that means).
But to answer your question, it would appear that there is no independent way to test for fibromyalgia. So it’s fertile ground for crazy people and liars.
This I find very interesting. When I’m suffering from a severe lack of sleep (while traveling, for instance) my skin becomes hot and painful. No idea if this has anything to do with anything.
I’d love to see the source(s) for this claim, as to my knowledge (speaking as a pathologist) there are zero findings at autopsy that would support a diagnosis of fibromyalgia.
As long there is no defined mechanism for fibromyalgia and no reproducible changes that can be tested for, the concept of fibromyalgia as a disease will remain a debatable proposition.
Which is not to say that people diagnosed with it or who think they have it are not in pain and needing therapy - which also applies to those with “multiple chemical sensitivity”, “Morgellons disease” or other dubious diagnoses.
Increasingly, I’m starting to think that many of these patients are being done a disservice by attempts to treat them through “mainstream” means - i.e. with large batteries of tests (which eventually through sheer chance are liable to find some “abnormality” which must be addressed) or pharmaceuticals (such as Lyrica, which comes with a significant number of potentially serious side effects, or antiparasite drugs, which those with Morgellons/delusional parasitosis often clamor for). If a defined physical/mental disorder cannot be established, better for them to use cheap and relatively safe alternative medical therapies, which at least might help them feel better for a time (until the treatments stop working, at which time they could go for another such remedy).
I have no trouble believing what you say. I just don’t know which diagnoses are dubious.
Twenty years ago, before I retired from teaching, I had a probem at night with getting my left leg in a comfortable position for sleep. I went to sleep usually on my right side, but on most nights for a period of many months, I kept turning it one way and then another (from a bent position at the knee) to try to get it comfortable. I would have to move it about every fifteen or twenty seconds until I would finally drift off to sleep.
After I quit teaching and began taking medication for depression and anxiety, the problem stopped. It was probably five years at least before I heard of “restless leg syndrome” and still longer before I heard it associated with depression. I never thought of mentioning it to my doctor at the time that I was having a problem. I don’t see my doctor very often.
I know that “restless leg syndrome” just sounds too hokey not to make the list of dubious diagnoses for at least the average layman. How are we to know when we are being manipulated by ads?
Also, doctors may diagnose “anxiety” too easily – especially in women. But true anxiety is very distructive in a human being and should be taken seriously.
Well that was my point, really. I’ve never seen anyone write diabetes “sufferer” or epilepsy “sufferer”, so why fibromyalgia “sufferer”? In the other thread, one poster flags use of the term “suffers from fibromyaglia” as a red flag. Why can’t people with fibromyalgia be fibromyalgia sufferers, rather than fibromyaglia “sufferers”?
On a related note, out of pure curiosity: Do people with migraines (or, if you prefer, migraine “sufferers”) get treated with the same sort of scepticism and suspicion?
In certain settings yes. Things like migraines are perfect cover for people just looking to score pain drugs because diagnosis relies more on the patient’s description of symptoms rather than objective physical findings. I’ve people that have absolutely no doubt were having a migraine - obviously in pain, wincing away from light, etc. I’ve also seen people who were snoozing comfortably in the exam room until I woke them up who then proceed to tell me that they’re having 10 out of 10 pain. But migraine has a long established history as an illness so you don’t get docs doubting that migraines even exist.