I should point out that I haven't been diagnosed yet, but that it does run in families, especially in females.

I have known two women diagnosed with FM, and both stated the diagnosis did them no good whatsoever. Both had to doctor shop just to get the diagnosis, and even then neither doctor could give either woman much relief. Both also discovered that FM comes with a negative social stigma attached. Eventually both women switched doctors yet again and never mentioned the FM diagnoses, seeking treatments only for the individual symptoms.

Both also discovered that FM comes with a negative social stigma attached.

I've been experiencing the social stigma my whole life. Having it thrown in your face, especially by those people who you love, that your pain is not real, or that you are just making it up to get out of things you'd really like to do, is horrible. I've had family call me anorexic when I COULD NOT eat, I've had friends accuse me of lying for attention, and even pie thought I just don't like hiking when I told him I couldn't go for long walks in the woods. If everything here can fall under a root problem, I'll be happy to dance til my joints ache. (Which won't take long...)

I was relieved when the tests showed I had severe depression. For years people had told me I was just being attention seeking and exaggerating, and that I was fine.

So to have someone sit me down and say "you're not imagining this" made a real difference in me being able to overcome it. Suddenly I had permission to have bad days, and with the permission to be depressed I began to get better.

I just needed the validation - that I wasn't going mad.

I think that naming things is powerful like that.

There are also dangers in naming things too, though, as it can be easy to become fatalistic about it.

I guess it depends on the circumstances of the people involved.

i think we can blame local news broadcasts for the negative stigma. A few years back, I saw a feature on the local news about the FM controversy, however none of the reporters were locals and the lead-in and concluding statements were scripted, not at all in the style of the anchor. I suspect this was one of those info pieces produced by someone with an interest in keeping FM known as another variant of Oprah syndrome.

A good friend of mine has it, and has also had to doctor shop. Her ex tried to paint her as an unfit mother because of all the naps she had to take and how slowly she had to do things. During the court's lunch break we went out and got a reference book that said she should be doing exactly what she had been doing. Since I could testify that he hadn't done smack around the house he lost that battle big time.

She found "Counting Spoons"(pdf) helpful in explaining it to people.

That's a great description, lysdexic. Thanks for posting.

I can totally relate to the elation factor. 2 years ago, when I was FINALLY diagnosed with multiple sclerosis I felt really weird and creepy about how happy I was. It seemed oddly morbid to feel elation at getting such a crappy diagnosis, but really, like you said, I was so relieved after years of being told it was all in my head (ha ha), that I was depressed, lazy, a hypochondriac, drug seeker, etc etc to finally know what was going on.

Of course, I really would have rathered it was something less sucky.

I was misdiagnosed with FM for a while in the early 90s (along with Lupus, Sjogrens, CFS, and Lyme disease). That was even worse, because at the time it was one of those diagnosis doctors would hand out as a way of dismissing the "neurotic woman" in his office. "Welp, you gots the fibermyalgey. Nuthin' we can do. Take some naproxen and go buy yourself a purdy new hat. Now skeedaddle and quit yer bitchin'!"

I am glad that FM is finally being recognized by mainstream medicine as a very real and very disabling condition.

I knew someone who has fibromylagia. The diagnosis of it is difficult. Once it was made, she finally had a name to put to all her symptoms, and it was a relief. Once you know who the enemy is, you can find ways to battle it. As jonathanstrange says, naming things is powerful.

Mrs. Doohickie has fibro. Her rheumatologist has helped her immensely in coping with her condition. Among things that have helped:

Doctors orders:
. Taking a mild muscle relaxant before sleep helps her sleep soundly. (Some doctors prescribe an antidepressant to achieve the same effect.)
. Regular exercise on an elliptical machine.
. No caffeine or chocolate. (She cheats on this once in a while, but always before lunch, never in the afternoon or evening.)

On her own (with doctor's okay):
. No more red meat or poultry. She still eats seafood. After reading several dietary books she's working toward a holistic, detoxifying diet. A lot of the food is quite good. ;- )
. She's tried acupuncture but it hasn't helped too much in her case.
. Therapeutic massage by a masseuse who specializes in fibro has helped.

Getting a consistent night's sleep is very important. People with undiagnosed fibro don't sleep soundly because when they move in their sleep they often end up in uncomfortable positions and wake up (even if they don't remember doing so). Because sleep time is also healing time, sore joints don't get better when they're supposed to and life becomes a downward spiral.

Mrs. Doohickie goes to sleep at a consistent time, and with the help of the muscle relaxant sleeps soundly through the night. Her elliptical machine workout loosens up her joints and she has better flexibility with less pain and so she sleeps better.

The thing to understand is when you have fibro, sleep doesn't come as easily as it does for people without the condition, and your body's balance is upset by the lack of sound sleep.

She said it's very important to get properly diagnosed by a rheumatologist who is familiar with fibro and is aware of current treatments. There is a new drug out for treating fibro but my wife's doctor is cautious about its side effects. Don't expect easy answers in the form of a pill, but effective treatments are available.

Since her diagnosis, I've noticed a much higher energy level, more enthusiasm and a better outlook.

Taking a mild muscle relaxant before sleep helps her sleep soundly. (Some doctors prescribe an antidepressant to achieve the same effect.)

I have to ask, since I sometimes can't sleep due to the pain in my legs, does she have trouble waking up? My doc recommended a similar treatment, but I was worried I'd wake up loopy and not be able to drive to work safely. (although it most likely isn't safe to drive on three hours sleep, either.)

sakura, I can only imagine how relieved you are. I don't know what your work/life situiation is, but I'd advise unless you're in a stable job to NOT see a doctor about it just yet if you're managing for now- you don't want to get diagnosed now if you're in school or whatever, when you may be without insurance in the future. If you get diagnosed, and then go without insurance for a year, you can be refused any coverage for treatment once you have insurance again, since it's a "preexisting condition." And that's forever (or until the laws are changed).
(I know, it's a dour warning, but I'm in that position myself, and I've seen friends screwed by it- one who needs her thyroid removed and can't since it would have to be completely out of pocket.)

A good friend of mine has fibro, and she runs a site for women living with chronic illnesses of all types: Chronic Babe.

Lessons to be learned from this thread:

1. Stay healthy, people! Take charge of your own health, eat your veggies etc. and you won't have to rely on doctors to try to put you back together!

2. Give each other a break. If someone constantly says she's too tired, she is too tired. Don't you think if she *wasn't* tired, she'd get tired of saying she was tired and come up with a better excuse? Or finally get up the energy to dump your sorry ass?

I have to ask, since I sometimes can't sleep due to the pain in my legs, does she have trouble waking up?

In a word, no. She wakes up refreshed. Now, if she has to wake up an hour or two after taking her meds, it's tough, but she can function. By the morning she just wakes up.

She's a school teacher and if she isn't perky in the morning, it doesn't work. She does fine on her current regimen.

If you want to ask her more specific questions, email me through my profile and I'll send you her email address.

My mum has fibro. She's had it since the early '90s but it took a while to get it diagnosed. She's in fairly rough shape with it. She takes pain meds and muscle relaxants but they can only do so much. She used to get acupuncture, which really helped, but can't afford it now that she's retired.

I'm afraid, along with every other fucking thing I have, that I'm developing it. But if I stick my fingers in my ears and sing la-la-la it'll go away. Right?

Thanks for the info and sound advice. I really appreciate the perspectives of the folks here. I woke up today with a lot less guilt about how long it took to get out of bed. :)