International ME/CFS/Fibromyalgia Awareness Day

May 12, 2004 1:47 PM

May 12th is International ME/CFS/Fibromyalgia Awareness Day. If you aren't aware of these afflictions, then it's time to become so. "Fibromyalgia (FM) is an increasingly recognized chronic pain illness which is characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and sleep disturbances." The WebMD description. For those who live with chronic fatigue, systemic immunity problems, and long term pain, I think the rest of us, at least, owe our awareness of what these people cope with every day. Again, via the always excellent Watermark, who writes movingly of her relationship with Fibromyalgia.
posted by Wulfgar! (19 comments total)

I've always taken 'FM' to be a vague checklist used to sell more pharmaceuticals.
posted by four panels at 1:59 PM on May 12, 2004

People used to think that about a lot of illnesses, four panels.

People also used to think that ulcers were caused by stress.

(Note: I think that fibromyalgia as a diagnosis is probably tossed around indiscriminately by poorly-informed and/or unscrupulous practitioners, but that doesn't mean it doesn't exist.)
posted by Sidhedevil at 2:04 PM on May 12, 2004

My mom has this shit and I can tell you it doesn't seem very pleasant.
posted by mr.marx at 2:08 PM on May 12, 2004

A doctor diagnosed me with chronic fatigue syndrome a few years back. I always thought that it was bollocks, really (and told him so) -- I'm pretty sure it was actually depression, or something similar.
posted by reklaw at 2:39 PM on May 12, 2004

Shit, I have all those symptoms. I'll bring it up next time I go to the MD. Perhaps he has some pharmaceuticals to sell me.
posted by Hildago at 2:50 PM on May 12, 2004

Every day is awareness day for something.
posted by smackfu at 3:30 PM on May 12, 2004

Every day is awareness day for something.

But no-one knows when all the different ones are...

What we need is an Awareness Day Awareness Day.
posted by reklaw at 4:09 PM on May 12, 2004

Ya know, If some of you cool-stylee deeply knowledgeable intelligentsia types would actually care beyond a shallow cause, or at least care to learn a little for once, than we might have the wherewithal to break the hold that pharmaceutical companies seem to have over your psyches; or at least break the hold that arrogance has over those who might need help. Just sayin' ...

But after all, every day is awareness day for sumpthin'. No reason to be bothered to actually be, like, ya know, aware. That might take effort, and, ya know, that's like hard and all.
posted by Wulfgar! at 4:15 PM on May 12, 2004

Clearly organizations like this need to campaign harder, in order to dispel the myths caused by people self-diagnosing themselves.
posted by darukaru at 4:21 PM on May 12, 2004

This is a good post, Wulfgar. Chronic pain is so badly misunderstood, so any efforts to increase awareness is a good thing. (The blog link is very good too, thanks.)

Having the "symptoms" doesn't make you a FM sufferer. FM sufferers have tremendous loss of quality of life due to the severity and frequency of the symptoms that may seem vague when written down like that. Yes, we all get tired sometimes. FM sufferers literally cannot get out of bed. And no, I don't have FM, but I have another chronic pain disease, am not currently taking any pharmaceuticals, and struggle to get people to understand that yes, I hurt, I hurt a lot, and it affects my life.
posted by livii at 5:08 PM on May 12, 2004

I fully realize that it is my own problem, but sometimes, Metafilter depresses me a great deal.
posted by Wulfgar! at 5:31 PM on May 12, 2004

But no-one knows when all the different ones are...

These people do: Awareness Calendar. May is:

Hepatitis Awareness Month
Huntington's Disease Awareness Month
National Arthritis Month
National Digestive Diseases Awareness Month
National Neurofibromatosis Month
National Stroke Awareness Month
National Trauma Awareness Month
Tuberous Sclerosis Awareness Month
Asthma & Allergy Awareness Month
posted by smackfu at 6:29 PM on May 12, 2004

My ex had been trying to get on disability due to fibromyalgia, and neither of the two general practice MDs to whom I spoke believe it exists.

One says she treats the 'symptoms', which are real enough, but she had her doubts as to it being an actual disease.

The other doctor wrote it off as "white woman's disease. You never hear a black woman complaining of it. Only these white women who have nothing to do but sit around all day, watching Oprah."

Considering that the only clinic that would treat my exwife had been closed twice for investigations into overprescribing narcotics, and it makes one wonder.
posted by mischief at 2:46 AM on May 13, 2004

It is a real disease.

To call it a "white woman's" is ignorant, especially for a doctor.

My wife has it, and it is not pleasant. She works, and has always worked, so the above description of white women who have nothing to do but sit around all day and watch Oprah, is complete bullshit.

Fibromyalgia is a disease that needs more recognition. It is more connected to the Auto-Immune system then anything else.

Here's a list of what my wife goes through:

Endometriosis - She has gone through Menopause twice now, both times drug induced.

Hypothyroidism
Chronic Fatigue Syndrome
Irritable Bowel Syndrome
Psoriasis

Sleeping Problems - She rarely goes into REM sleep. Never gets a refreshing sleep.

On top of it, she was also diagnosed with Rheumatoid Arthritis.

So, don't tell me that the disease isn't real. She has to deal with all this every day.
posted by da5id at 7:33 AM on May 13, 2004 [1 favorite]

I've always taken 'FM' to be a vague checklist used to sell more pharmaceuticals.

The same thing could be said of any number of diseases, including depression, most obviously. When you don't know the underlying cause, you have to go by the symptoms.

It's arrogant and offensive to maintain that a disease doesn't exist just because it's not well-understood. (If you have the data on your side, it's a different story.)
posted by callmejay at 8:02 AM on May 13, 2004

I would suspect that front-line MDs and the Social Security Admin understand the complaints of fibromyalgia quite well. That some (many?) do not regard it as an actual disease is hardly arrogance.
posted by mischief at 12:18 PM on May 13, 2004

I would suspect that front-line MDs and the Social Security Admin understand the complaints of fibromyalgia quite well. That some (many?) do not regard it as an actual disease is hardly arrogance.

Plumbers are qualified to give lectures on fluid dynamics by this logic. The general existence or non-existence of a disease is not something I would trust the SSA or a GP to decide. Hell, I barely trust the NIH and the CDC on these things.
posted by PinkStainlessTail at 12:55 PM on May 13, 2004

I have FM - but had no idea that May 12 was set aside to acknowledge it - and neither did any of the doctors I've seen in the past few days - or at least they didn't mention it! The doctors I've gone to have often had their - well, not really doubts about FM - there are too many people with these symptoms to think that it's all just depression. And besides, depression is often a symptom that something else is wrong - most doctors do many tests before limiting their diagnosis to clinical depression. No, several of my doctors aren't sold on FM as a diagnosis, but feel that until further research is done on what exactly is going on that it's currently the best term to use for the combo of symptoms.

Sadly, not enough is known about the causes of FM - or indeed if it's a sign that some other illness is present or oncoming. For instance - my great aunt and mother both have rheumatoid arthritis. And my mother's been diagnosed with FM after she told her doctor I had it - turns out she'd had the same symptoms for years but ignored them.

I've always been able to work in the past - but sometimes it's been very difficult - this thing sometimes seems to cycle for me. Thankfully there are a lot of drugs out there for arthritis that really do the trick. Also after going through many doctors who tried to convince me it was all depression (they said it had to do with me being a Ph.D. candidate and the stress of that - wrong) - I finally found some who did blood tests and actually tried to treat my symptoms instead of telling me what I had first. It's not getting any easier as I get older though (grumble grumble). And it's often hard to explain to people why I sometimes have trouble lifting things, even though I appear to be fit. I usually just tell folks I have "something like arthritis."

Thanks for the links, Wulfgar!
It's been awhile since I've read up on FM - I usually just take my meds and try to get on with life.
posted by batgrlHG at 9:54 PM on May 13, 2004

Oh and interestingly my uncle - brother of my FM suffering mom - had a complete shutdown of his Auto-Immune system almost two years ago. He died within 3 weeks of his first symptoms. The doctors still haven't figured out precisely what happened - but all are interested in the fact that both my mother and I have FM symptoms.

So it might all somehow tie into the immune system after all - but you know, until they get enough people's case histories to study, the docs can only go with what's known currently. So all of us with the current diagnosis of FM now might actually know what we have in, oh say, 10 years. Sooner I hope.

Now what's really amazing is how much I have to pay for my meds, but that's a whole other ball of wax...
posted by batgrlHG at 10:08 PM on May 13, 2004