Ok, so I just got off a 6 (12HR) day stretch on my traveling nurse
assignment. (Don't ever do that, lol). I got this patient, an older woman
with many diagnoses, the main one being narcotic withdrawal. I was going
over her many diagnoses with another member of the team and one of the
nurses points to her chart and says...well, see here, she has fibromyalgia,
she is a kook. I didn't know what to say. I personally have been wondering
if I have fibro and it really offended me that there are members of the
medical community that link fibro to psychological problems. Any one have
any comments on this? Oh, and its great to be home. I think a great many people in the medical community equate fibro with psychological problems. Especially when there is no other diagnosis.It infuriates me. I have fibro in addition to RA, OA and Sjogren's. It was only after the RA and Sjogren's were formally diagnosed with a positive rheumatoid factor that I felt the fibro was validated by the medical community. At that point , it was considered secondary to the RA and not as serious but at least was recognized. Recently, I was tested by a neurologist for carpel tunnel and other nerve problems and he said my overreaction to nerve stimulation tests was consistent with Fibromyalgia Syndrome. I guess there are some criteria that are not subjective.
Funny you should mention this, I had the same thing happen this week. I was appalled. I don't have that dx, but I know it exists from what I have read on this board. It saddens me that the medical community jumps to the conclusion that the pt is "crazy".
Lori
At the past medical office I worked at, I asked the question..."what is fibro". The answer came back that it isn't a real illness, it's typically an overweight woman in her 40's that needs to see a shrink. I couldn't believe that, but have heard or seen written notes from some doctors that all have that belief. It's sad. I don't have fibro, or don't no anyone personally that has it, but after seeing so many people on here that do it makes me mad that there are doctors that think like that.
I know having Lupus/Rheumatoid "rhupus", I have days that are okay and days that are really bad. I've heard so many times "You look fantastic, you don't look sick, you're always bright and chipper, etc." Well it's just me, I don't go out without makeup or doing my hair. The part people don't see is that instead of taking 30 minutes to do it, sometimes it takes me over 2 hours. As far as being bright and chipper, that's on the outside, inside I'm sad, mad, frustrated, etc. I'm just doing my best not to be a whiney woe is me gal. I know that everyone has something, this is just what I have, like it or not. I'm trying to work on the sad, mad, frustrated me. I think it will just take time. And perhaps once the meds kick in and I feel better, the old happy go lucky gal will be back. If I haven't lost you already, lol, I'm just saying that the auto-immune diseases seem to share the part of being "invisible" to a point. People don't see the pain of fibro, or Lupus or other things. It's hard fighting the battle of having a disease, but much worse fighting people's opinions.
Okay, I took my MTX last night, and my mind is foggy so apologys if I rambled and didn't make sense. In my own little head I know what I mean, lol.
To hear that we are "kooks" from the medical community is completely unacceptable.
So in my area a commercial has been running on TV about a clinical study for a new drug to treat Fibromyalgia. It is being run by a local hospital. I did a search and came up with some interesting info - but you guys probably already have beat me to it, right?
http://www.fmaware.org/clinicaltrials.htm#internetArthritis
In quickly reading about the clinical trials for the medication, you are excluded if you have RA, OA, hypothyroidism, etc., so folks here are not going to be able to participate in that study, but there are others, and I think it looks like the main website itself is very good.
Hope you find it helpful!
Karen
Debrakay,
I love what you said about fighting people's opinions. I don't know if I am even fighting a disease since I am undiagnosed but I am having trouble with people...those I work with, extended family, etc. Thank goodness I have my DH and a few true blue friends. Without them, who knows where I'd be by now.
DOXIGAL,
Some people choose to try and educate people. Sometimes I may say a couple of things, other times not. I'll save my energy on being well..... Good luck to you and I hope you are feeling better soon.
Being Dx'd with Fibro first I was told that the pain was all in my head, depression etc. I am a very thin woman so weight is not the issue. I truly feel for those that have Fibro and must put up with this type of attitude towards it by some in the medical community. My current Dr has Fibro which has made her an excellent Dr.Deanna said
>>Over time, untreated FM plays havoc on all your muscles, causing them to detoriate, lose strength and to develop contractures etc. It can affect how you walk. And energy levels can drop dramatically PT and water therapy are great counteractions to these. But you can get so bad, that it may take quite an effort to get from not walking to walking again. <<
The fibro isn't causing the muscles to atrophy though, it's the lack of use of the muscles.
According to Mayo Clinic website:
Fibromyalgia isn't progressive and generally doesn't lead to other conditions or diseases. It can, however, cause pain, depression and lack of sleep. These problems can then interfere with your ability to function at home or on the job, or maintain close family or personal relationships. The frustration of dealing with an often-misunderstood condition also can be a complication of the condition.
The key would in the Mayo quote is generally. My friend got so inflammed in her neck /shoulder muscles that they have calcified to a fairly debilating degree.
Any doc that does not think that severe and chronic muscle pain is serious, is seriously lacking in compassion. If a doc thinks you look normal and are therefore are not sick, should only have himself for a patient - cause he is an idiot.
I disagree Scout because that is exactly what is happening with my muscles and it is what they are treating me for. The FM does hurt your muscles because you can't use them the same way any more. I've seen a lot of sites that state what you just quoted. But they also are some of the sites that are feeding into this idea that it is only depression and lack of exercise. Totally from my personal experiences, I think that one of the problems with FM is that, because the muscles become so pained, exercising them in any way gets signficantly harder. This (reasonably!) leads many people to less exercise, which makes the muscles atrophy and makes the FM even worse and the cycle goes on.
I don't think fibro is a head disease, although I do think there are definite head components to it. There is also much research about personality types that tend to have fibromyalgia.
I wonder if fibro was mainly a "man disease", if the medical community