[anecdote]
I developed fibromyalgia in my late teens, in a very bad time of my life. Over the following years, my circumstances changed, sometimes for better, sometimes for worse. There was no corresponding easing of my symptoms during happy periods or relapses during unhappy ones. The course of my fibromyalgia did not seem influenced by my state of mind. Over the course of a decade it eased and became less severe, but the greatest improvement in my health coincided with my divorce - the single-most unhappy and stressful time in my life. This has always puzzled me, and I’ve wondered if it is more than coincidence that I was no longer sleeping beside a snorer.
I wouldn’t be surprised. 
I find that one of the worst things for my symptoms is disrupted sleep. All it takes is to be wakened briefly during an important sleep stage to throw everything out of whack.
Another thing I’ve noticed that affects my symptoms is exercise. I feel so much better overall when I’m more physically active, and so much worse when I slack off.
I have to admit, the tendency of people to jump on faux diagnostic bandwagons drives me nuts … I know damned well that my issues are degenerative joint issues, combined with CPPDS, I have the spiffy diagnostic paperwork in my file drawer. You have no idea how many people are trying to tell me I have fibro when they see me gimping around in pain. I also had to go through the sleep study to get doctors to shut up about my segmented sleep when I had a dead normal study, no RLS, no apnea, I just wake up spend a couple hours twiddling my thumbs and fall back to sleep on cue. I will confess that I do have undiagnosed very high functioning aspergers as I seem to have grownup with an amazing number of the actual differentials present, but it doesn’t seem to give me any real issues other than a touch of difficulty looking people in the eye, occasional social cluelessness, and the ability to really hyperconcentrate. Ill take the rocking back and forth and occasional fascination at playing with looking at my fingers and self stimming when the real world gets a bit overpowering.
With no known antigen and a large panoply of symptom that are essentially identical with those of a lot of other designated diseases, none of which is any more clearly defined, I think it’s most fitting to consider fibromyalgia to but a constellation of symptoms rather than an actual “disease” in its own rite.
There is really no way to draw a line between Fibromyalgia, Chronic fatigue syndrome, Atypical lateral sclerosis, Myalgic Encephalo-myelitis, Gulf War Disease, and even multiple sclerosis.
Various doctors may claim different differentiating characteristics, but there is no general consensus on these. The same list of symptoms will bring different diagnoses from different doctors.
Generally the symptoms are pain in the neck, shoulders, arms, and legs, extreme fatigue, bouts of irritated bowel and irritated bladder, difficulty concentrating, insomnia, and a lot of other symptoms. There is always some degree of demyelinzation of nerves in the brain.
I was diagnosed in many different ways by different specialists over a period of 15 years.
In the end, it turned out that all of the diagnoses were wrong. My symptoms (totally consistent with those associated with fibromyalgia) were due to a very serious hydrocephalus that had developed in my brain after a bout of meningitis. By the time they found that, I was barely able to walk and the best description I can give is that it was like living my life on a tilt-o-whirl that never stopped.
After 18 years of continually worsening symptoms I finally had surgery to treat the condition a few months ago and I’m doing much better now.
There’s really no point in worrying too much about what exact label a doctor might assign you, other than for administrative reasons such as government assistance etc. In any case, there is no “cure” for the condition, no matter what you call it.
But the symptoms can be managed by lifestyle changes, diet, health supplements, etc.
Especially avoid stress and over exertion.
Take sleep aids.
etc.
But before accepting any diagnosis, insist to have an MRI scan of your brain, there may be some sort of physical and treatable cause such as a tumor, cyst, or hydrocephalus behind your symptoms.
I have had the diagnosis of Firbro since '04. Fibro causes more than just pain. My diagnosis was done after a sleep study. People with Fibro have brain waves called “alpha intrusion”. This is where “one foot sleeping, while the other awake” as the doctor told me. That said I am in a state of constant pain. That is even taking a medication that has helped somewhat. Although there are “trigger points” these vary between people. No one person can claim they have all of the textbook points or I’d question their motive as others posted.
I was diagnosed several years ago with fibromyalgia by a neurologist. I feel the pain “centrally” and get headaches related to the FM…except the pain of the headache is felt throughout my entire body. I have been taking Lyrica for about three years and it really helps alleviate the pain. A couple of times, I’ve tried to reduce my dose of Lyrica, and my pain promptly returned…so it appears that this drug really improves my comfort level. It’s interesting that Lyrica is an anti-convulsant, and I’ve been on anti-convulsants like carbamazepine before to treat my Bipolar I Disorder. I find yoga, aspirin and coffee also help with fibromyalgia.
I have not read all the responses, but I will just relate my wife’s experience. Our doctor was concerned that she might have it. So he gave her a prescription for a week’s supply of prednisone and said that if she actually had the disease, she would improve rapidly and dramatically. He also explained how the side effects of the drug were awful, but if that’s what she had, she would have to continue. She had no particular improvement and that ended the experiment. She gradually improved and is fine now.
FWIW I also tend to think of it as a description more than as a diagnosis. Diffuse chronic muscular pain of no identifiable etiology. The box that all those gets shoved into is fibromyalgia and in that sense it is a useful shorthand label. If there is an identifiable cause it is no longer fibromyalgia. Fibromyalgia is a chronic pain syndrome and chronic pain tends to be self-perpetuating and very difficult to treat. Still naming something at least gives us the illusion of having power over it.
I have rheumatoid arthritis. It is currently controlled by medication, but when I was having active flare-ups, fibro was one of the joyous by-products. However, when it got too bad, I’d take a Flexoril, get a good night’s sleep and work through it.
Yeah, early-onset Alzheimer’s in her 40s is way early… but so is Parkinson’s for a man in his 30s.
As for the fibromyalgia, yeah it’s one of those “we’re not really sure what’s causing the symptoms, but the symptoms are [these] and the treatment is [this]” boxes. But hey, many other diseases/syndromes used to be as vague (or the information we thought we had on them was utterly wrong, such as the mechanism for stomach ulcers, which absolutely “could not be caused by a bug, as no bug would survive the extreme pH in the stomach”). So long as the treatment works, the label is the least important item.
When a doctor looks at a patient chart and sees a history of fibromyalgia, we all let out a little internal sigh because we know this patient is likely to have hypochondriacal tendencies. That doesn’t mean that their symptoms are any less real than anyone else, but odds are high that you are going to get the dreaded “pan positive review of symptoms.” They quite often make you want to beat your head against a wall because they won’t stop complaining about their stupid aches and pains and physiological idiosyncrasies which have no bearing on their health.
That being said, fibromyalgia isn’t a fake disease. The likely explanation is that people with fibro are just more in tune with their bodies than other people, and that their anxious nature makes them more likely to complain about problems that others might shrug off as being part of life. When I say “in tune” I don’t mean it as some spiritual metaphysical thing. I mean they likely have a more robust pain recognition system. They may have larger/more active/more richly innervated anterior cingulate cortices, larger/more robust anterolateral tracts, higher nociceptor densities in their extremities, or ion channel mutations which make the aforementioned components more constituitively active. Drugs like Lyrica can help these people by addressing both their anxiety and the pain itself simultaneously.
Also to address a couple of misconceptions in this thread:
You people with rheumatoid arthritis, you don’t have fibromyalgia. You (probably) have Polymyalgia rheumatica. Different problems, sameish treatments. PMR has histological findings on muscle biopsy, fibro doesn’t.
Wtf are you smoking? You can definitely tell the difference between those things. Also, its amyotrophic lateral sclerosis, not atypical lateral sclerosis. ALS and MS have well defined imaging and histological findings, as well as COMPLETELY different presentations. CFS and fibromyalgia also have different diagnostic criteria. I’m not really familiar with gulf war syndrome.
I’m done ranting. It just annoys me when people spread misinformation.
This is also one of the prevailing theories for what causes IBS. Hypersensitivity to pain combined with anxiety making the pain even worse. It’s not an easy cycle to stop.
Try being me, I know it is not fibro, it is assorted forms of arthritis, more or less. I have absolutely no freaking idea why people are convinced it is fibro. They see me on crutches or in a wheelchair and immediately start talking about fibro 
I actually had some dumb bitch come up and start poking me on those spots on the back of my shoulders and neck while saying that ‘Obviously with pains in all these places’ … as I am ducking around trying to avoid her. If I had pains in those places, they would have been caused by her damned poking me:mad::mad:
I tend to agree with those who say it is a collection of symptoms and not a disease entity, and most likely has a number of etiologies. However, I do know that I have “qualified” for years for a diagnosis, with EVERY tender point, brain fog, what have you, though never allowed a diagnosis to be given for fear of being labeled a malingerer. When I was diagnosed with hypothyroidism, requiring T3 replacement, rather than the traditional T4 (I don’t convert well, apparently), virtually all of my fibromyalgia AND arthritis pain disappeared within one week of starting on cytomel. It was bizarre. Once my body realized no more T3 was coming, some of the pain came back until the next dose increase, and so it seems to go. I am hopeful once my blood levels show I am on the appropriate replacement dose, my pain will be controlled for good, but I will also be satisfied with just feeling a lot better and letting exercise and better sleep take care of the rest of it. I no longer need any of my pain medicine.
I can’t say I know why the T3 is helping, but there may be something to it. Stanford University is currently conducting research in this area: http://snapl.stanford.edu/t3/.