Fibromyalgia

CHATSDALE · Jun 1, 2004

The Debate Now Ongoing With Fibromyhalgia And Chronic Fatigue Are Dishearting To Someone Who Has It(them) Probably Same Thing With Different Names....when There Were Few Women Mds The Same Thing Was Said About Pms And Postpartum Depression Etc It Affects Women So Lets Ignore It Or Say That It Is All In Their Head Too Many Times If You Can't See It On A Lab Report Or On An X-ray It Doesn't Exsist So You Are A Little (whole Lot) Whacky----maybe These People Aren;t Getting The Nursing Care That They Need---the Problem Is Not With The C/o Pt But With An Incompetent Nurse And An Unobserving Md

Energizer Bunny · Jun 2, 2004

CNM2B, I'm sorry to hear about that.... Are you guys sure it's not anything else? As I'm sure we all know, there's plenty of doctors out there that will write it off as FM instead of looking for another cause for those symptoms. It's quite sad to see how so many doctors are just freely diagnosing things such as FM, depression, etc. as well as new diagnosis' that suddenly everyone seems to be diagnosed with....

Yeah, we're most definately sure. He has been to four doctors, one was a sports medicine dr. He had two MRI's, numerous x-rays and every kind of bloodwork done that is known to man. The poor guy has been poked and probed to death and finally, this last dr. got all the results from the others and came to this conclusion. Now he has started swimming every other day (moving up to every day) and has his sleep study tonight at the hospital. It's frustrating to all of us because he is literally in tears most days and this is a man that has been living with the pain for as long as I have known him and beyond.......over 10 years. I can't imagine how he feels, poor guy.

Quickbeam, BSN, RN · Jun 2, 2004

I'm in the "fibromyalgia is awfully common these days. Hmmmm...." school of thought.

I had an MD tell me once I had fibromyalgia. I told him that was impossible since I didn't believe in it and he couldn't show me anything that would verify the diagnosis. He thought that was very cheeky of me but did give me a referral to a rheumatologist. Turns out I have RA, and probably had JRA since my teen years. A thorough clinical history, lab work and an excellent clinician got me from a bad dx to the correct one.

No, this isn't all about me....but I often wonder if there isn't a whole lot of sloppy diagnosing going on. I meet people all the time who are taking OxyContin for their fibromyalgia. Doesn't add up.

CHATSDALE · Jun 2, 2004

If You Don't Believe In Ra Would That Negate The Dx====arguement Not Valid

Quickbeam, BSN, RN · Jun 2, 2004

Please look at my post again, Chatsdale. I had an excellent clinical history taken and confirming blood levels for my illness. I also had diagnostics for joint damage which were confirming.

I didn't say that medicine is only science. But I did not believe what I had fit into the very vague and terribly hard to pinpoint catch all of fibromyalgia. Turns out I was right.

It would help me read your posts if you would use standard capitalization. Thanks.

CHATSDALE · Jun 2, 2004

I apoligize I did not mean to belittle your dx---but there are many things which will not show up on an x-ray or lab report...pms is now recognized as a disorder and some "hysterical female wanting attention"

I do not take anything stronger than naprozen because the md said that it would be like those football players that medicate themselves but that the body is still being punished even if you can't feel it

maybe I have a milder case than some but i have been able to keep working with otc nsaids and with vit b12 and with walking even if i have to force myself.....the crux of the matter is that the feeling i wake up with every morning is real...curious point is that i just finished a regimen of radiation tx for breast ca and the md said i would feel completely "washed out" could not tell the differance don't know if i was lucky or maybe you can only go down so far

z's playa · Jun 2, 2004

I was just browsing through that student doctor network web site and you should hear how they put down people with IBS, fybrmalagia,and chronic fatigue syndrome. Couldn't believe it!

TXMOM · Aug 29, 2004

i triaged a pt today that c/o neurofibromytosis. is there such a thing?

I just saw this today, so I'm REAL late LOL

Yes, there is something called NF. My daughter and husband have this disorder. It is a genetic disorder. People with NF Type 1 have CAL's, and also have fibromas. Also, they can have scoliosis, and learning disorders. My daughter has had a plexiform neurofibroma removed in July 03 when she was only 11 months.

It's unfortunate that the Doctors that I have come across know so little about this.

RN92 · Aug 29, 2004

During our ONE time together, while standing at her feet, (she was lying on a massage table), I "saw" a thick, white cloud form float up from her body and form over her full length. Using the techniques I have learned, it dissapated.
She got off the table and was symptom free FOR 5 MONTHS!

Wow, you're gonna give Jesus a run for his money! Impressive!

andyman1216 · Aug 29, 2004

i struggle with the fibromyalgia diagnosis. my mother has been diagnosed with it and she (as well as the majority of the patients i am aquainted with) use it as a crutch. besides the antidepressants, they are usually on massive amounts of narcotics.

it seems that society relishes being labeled. "please make me exceptional... different from everyone else..."

personally, i am 29, and because of an active youth, i ache in nearly every joint, but ill be damned if im gonna use that as an excuse. whats wrong with being average? everyone hurts... its part of life.

unfortunately, modern society as a whole has been raised to believe that pain is unacceptable. im not an asshole, but if i have a real big complainer, without a real big problem, i tell them... we take care of the sickest pt's first. i will try to make you as comfortable as possible until the doctor can see you. no one has died from pain that i know of." now, im not talking about chest pain, ect. i mean fx's, cellulitis, blah blah blah.

short story then im done. it is relevant.

as i was having marital difficulties, i noticed i wanted to sleep a lot. not just tired, but exhausted. saw a doctor (first and only time so far) and she told me "it sounds like dysthymia". i said theres no test for that though, how do you know. it was based on exam. i left and wont go back for that. its a bullshit diagnosis if it cant be tested for (to me).

CHATSDALE · Aug 31, 2004

I just saw this today, so I'm REAL late LOL
Yes, there is something called NF. My daughter and husband have this disorder. It is a genetic disorder. People with NF Type 1 have CAL's, and also have fibromas. Also, they can have scoliosis, and learning disorders. My daughter has had a plexiform neurofibroma removed in July 03 when she was only 11 months.
It's unfortunate that the Doctors that I have come across know so little about this.

i and some of my children have nf....my brothers do not .. md says I was probably mutated iin utero....but once a mutation occurs the gene can be passed on...not all of my children are affected but those who were were affedted ione grandchild is MR...one of my sons has multiple nodules...he also has short term memory loss but this may not be connected to NF md in houston says he didn't know...bones are also affedted...my bones and another grandchild have bone problems which have b een caught on xray but have not given us any problems...so far i hope that it stayes that way...i hope that there is research ongoing...i was on a lmailing list havn't had anything in a while i may have been dropped

RN77 · Aug 31, 2004

i struggle with the fibromyalgia diagnosis. my mother has been diagnosed with it and she (as well as the majority of the patients i am aquainted with) use it as a crutch. besides the antidepressants, they are usually on massive amounts of narcotics.
Andy, fibromyalgia (FMS) is a very real diagnosis, with specific diagnostic criteria. I happen to be a sufferer of FMS and can tell you that, at times, the pain is nearly unbearable. I've had times where the weight of a plain bedsheet sent me into agony. Other times, it's quite managable. Contrary to your belief, not all patients with FMS are "on massive amounts of narcotics" (I take NO narcs) In fact, the majority of people with FMS don't even know they have it, because doctors don't always know about it/understand it, or people are told that it's all in their heads. I'm sorry that your mother and others have "tainted" your objectivity. Know that it's real, it hurts like ----, and never goes away. I urge you to look at some of the FMS websites and get the real details. You'll be doing yourself and your patients a great service! :^)