Psycho-Babble Medication Thread 5041

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fibromyalgia

Posted by Elizabeth on April 19, 1999, at 2:54:02

Can anyone explain what fibromyalgia is? (Is there a definition on the web somewhere?)

(I have major depression and chronic insomnia and neck/shoulder/back pain, that's why I'm curious.)

 

Re: fibromyalgia

Posted by Victoria on April 19, 1999, at 15:28:18

In reply to fibromyalgia, posted by Elizabeth on April 19, 1999, at 2:54:02

Funny you should ask! I just responded to your post under "refractory depression," saying that my symptoms sound a lot like yours, and I was recently diagnosed with fibromyalgia. I've done some reading and poking around the Web about fibromyalgia. I'm not sure anybody knows exactly what it is. Some things it's fundamentally depression, some that it's a variant of chronic fatigue syndrome, and there are various other theories. As I said above, Jay Goldstein's "Betrayal By the Brain" was the first thing I read that made sense to me (and confirmed my intuition that, for me, the psychological symptoms of depression and the physical symptoms of fibromyalgia are different expressions of the same underlying chemical problem. Goldstein's book is hard to read and he's ahead of the science in trying to apply experimental evidence to treatment, without the treatments themselves having been tested. BUT, recent work on fibromyalgia research seem to be confirming his direction. I'm seeing him next month, so I'll let you know. Also, I found a good fibro Web site recently--can't remember the address, but I'll find it and post again. Good luck!


> Can anyone explain what fibromyalgia is? (Is there a definition on the web somewhere?)
>
> (I have major depression and chronic insomnia and neck/shoulder/back pain, that's why I'm curious.)

 

Re: fibromyalgia

Posted by saintjames on April 19, 1999, at 15:54:24

In reply to fibromyalgia, posted by Elizabeth on April 19, 1999, at 2:54:02

> Can anyone explain what fibromyalgia is? (Is there a definition on the web somewhere?)
>
> (I have major depression and chronic insomnia and neck/shoulder/back pain, that's why I'm curious.)


James here....

Yahoo returned 99 sites on a search using the word
ffibromyalgia...happy surfing ! If you find some that are good post the URL's to the group and share what you have learned. Go internet, Ra Ra.


j

 

Re: fibromyalgia

Posted by jane on April 19, 1999, at 19:29:29

In reply to Re: fibromyalgia, posted by saintjames on April 19, 1999, at 15:54:24

FIBROMYALGIA-(FMS)--
If you've got it, you don't want it :-)
Having had FMS for ? years and diagnosed 4yrs ago,
I'll tell that it is no treat but it is NOT the end of the world, although some days I wonder.
I'll give it my best shot at explaining, but
part of FMS is "brain-fog", so no promises.
FMS is a form of "arthritis" that does not involve the bone/joint but rather the soft tissues located around joints, skin, and organs.
FMS is treatable,manageable (?), not curable(YET), and not fatal.Its characteristic symptoms
include pain in most parts of yur body, chronis fatigue, sleeplessness, depression and can inclued a number of other symptoms/syndromes.
W/o overwhelming you here with details I point to some very good resources:

***Arthritis Foundation(800)283-7800
a v. good national org.. It will direct you to local resources, support groups, phamplets,etc

***A Local Support is a must!! Here is where you find out the real scoop-and people that believe you when you say 'I hurt'. FMS doesn't show up in Xrays and there is no blood test (soon?) for it.
It is a diagnosis of exclusion and an "experienced" MD.

***An FMS!!! Rheumatologist-extremely impotrtant!!
DO NOT assume that all rheumatologist are good FMS doctors. Check with the support group-they'll know the good MDs within 200 miles. :-)

***Subscribe to several newsletters-again check with the support group or the local arthritis chapter but some good ones are:
Fibromyalgia Frontiers
(703)790-2324
email: Mail@fmagw.org
(esp.ask about Dec'98 FMS-summary issue !!!)
Fibromyalgia Network
(800)853-2929
www.fmnetnews.com
There are other very good newsletters, these are just starting points.

***One of the best books that I found-don't know if it has been updated since 1996 -
Fibromyalgia & Chronic Myofascial Pain Syndrone
by Devin Starlanyl,MD and MaryEllen Copeland MS

FMS research and treatment has made great strides in the past five years. Five years ago, it was hard to find and info about it and now there are volumes!!
Since this is a "psych-babble" site, I would like to say that two key symptoms (besides widespread pain) are: depression and what we refer to as
FMS "brain-fog". Once you understand the bio-chemical aspects of FMS you will understand why these occur (it helped me understand and accept why my "brain" didn't work the way I wanted it to)

I can't stress enough the importance of a good "FMS" doc and a FMS support group.!!!
Hope this helps -- jane

 

Re: fibromyalgia

Posted by Elizabeth on April 20, 1999, at 4:00:56

In reply to Re: fibromyalgia, posted by saintjames on April 19, 1999, at 15:54:24

>Yahoo returned 99 sites on a search using the > >word fibromyalgia...happy surfing !

Thanks...I did an Altavista search and came up with one result. I was hoping somebody knew of a specific URL that is good and includes a precise definition of this puzzling disorder, so that I could save myself some fishing.

 

Re: fibromyalgia-good sites

Posted by Victoria on April 20, 1999, at 15:07:12

In reply to Re: fibromyalgia, posted by Elizabeth on April 20, 1999, at 4:00:56

Two good sites I've found:

www.fmnetnews.com site of a national fibro support organization. Good basic info on diagnosis, currently conventional treatments, some stuff on research

www.myalgia.com site of a research group at U of Oregon, lots of good stuff on recent research, a hard site to use (maybe because it's set up for Macs and I'm on a PC). Myalgia.com/Bindex1.htm gets you to a search engine for the site which turns up lots of interesting stuff, but you have to just poke around in it and see what you find. There are lots of abstracts of literature and summaries of papers given at their annual conference somewhere in there.

Good luck!

> >Yahoo returned 99 sites on a search using the > >word fibromyalgia...happy surfing !
>
> Thanks...I did an Altavista search and came up with one result. I was hoping somebody knew of a specific URL that is good and includes a precise definition of this puzzling disorder, so that I could save myself some fishing.

 

Re: fibromyalgia

Posted by Elizabeth on April 24, 1999, at 0:23:15

In reply to Re: fibromyalgia-good sites, posted by Victoria on April 20, 1999, at 15:07:12

Victoria, thanks for the links! Very helpful.

Some symptoms I have:

- The main thing is the back, neck, and shoulder pain. I wouldn't call it severe but it is quite unpleasant.
- The pain seems to be worst in the morning and at night when I'm trying to get to sleep. I don't have trouble falling asleep on nights when I don't have pain.
- I had an episode of recurring, severe headaches when I was 14 that resolved with Prozac. (They seemed to be associated with the onset of depression.) I've seldom had headaches of any sort since.
- I have always had very bad menstrual cramps (NSAIDs do work for this, of course).
- I have had an essential tremor ever since I can remember; when it gets bad or when I need to do fine motor work, I use a beta blocker.
- I'm definitely hypersensitive to cold.
- I've had various GI symptoms (mainly constipatioin and vomiting) that were written off as "anxiety."
- I've had tendinitis, but so did everbody I knew in college (due to overuse of computers, presumably).
- I seem to have tenderness in a number of the diagnostic pressure points.
- I've had a number of random skin problems; my skin seems to be sensitive.
- I'm accident-prone. I drop things a lot. (Interestingly, I noticed that this improved with buprenorphine and not with other antidepressants.)
- One summer when I was going dancing a lot, I started having foot pains, and even walking difficult.

I have early-onset (diagnosed age 14) "melancholic" depression - this preceded the pain. I also have social anxiety (probably not bad enough to be called clinical social phobia, though). I don't know if I've ever been diagnosed with panic disorder, but I have had spontaneous panic attacks as well (it's been suggested that this is actually a sort of psychomotor epilepsy, though).

Some symptoms I *don't* have:
- chronic fatigue
- leaden paralysis (feeling of being heavy or weighed down)
- migraine
- multiple chemical sensitivity
- TMJ
- unrefreshing sleep (if I actually get enough)
- paresthesias
- irritable bladder
- RLS
- IBS (in any normal sense of the term)
- premenstrual dysphoria

So what do you think? And how can I go about dealing with this, regardless of whether it's FM or not?

Thanks for your help...I'll definitely bring this up with my doctor, but I'd also like to talk more about it with people who've experienced it.

 

damn! - Dr. Bob?

Posted by Elizabeth on April 24, 1999, at 0:26:03

In reply to Re: fibromyalgia, posted by Elizabeth on April 24, 1999, at 0:23:15

I have no clue why my posts keep popping up multiple times! Eep.

 

Re: fibromyalgia

Posted by Another Bob on April 27, 1999, at 12:36:55

In reply to Re: fibromyalgia, posted by Elizabeth on April 24, 1999, at 0:23:15

>Recent studies have suggested that fibromyalgia is a sleep disorder -- pain, depression, etc. are symptoms of underlying condition.

Dr. Martin Scharf in Cincinnati has recently published data showing that patients who take GHB (gammahydrodxybuterate) have reduced alpha intrusions in their sleep and actually get slow-wave sleep -- and relief from pain.

GHB is a naturally occuring substance (no reported side effects), but it's not an ideal drug (must be given in gram -- as opposed to milligram -- doses,and it has a short half-life so it only provides 2-4 hours of sleep (patients usually redose in the middle of the night and sleep through.

Scharf has been treating people (mostly narcoleptics) with the compound for over a dozen years and claims significant success.

Now for the bad news: the federal government frowns on GHB (has been accused of being used as a date-rape compound). Legal in Europe, GHB is used for anesthesia, narcolepsy, drug/alcohol addiction. I'd steer clear of the folks on the Web who will sell you the chemicals to make GHB (and who claim it's a cure for everything from itching to impotence).

Martin Scharf can be reached at the Tri-State Sleep Disorders Center in Cincinnati, Ohio. Good luck.

 

Re: fibromyalgia

Posted by Victoria on April 27, 1999, at 15:38:01

In reply to Re: fibromyalgia, posted by Elizabeth on April 24, 1999, at 0:23:15

Elizabeth, It seems to me that diagnoses in this area are a bit like the blind men and the elephant--there seem to be lots of so-far-poorly-understood dysfunctions in brain chemistry and function, and depending on what complex of symptoms you have and what kind of doc you consult you'll get different diagnoses. It sounds to me like you fall in the same general category as what I have, but with a slightly different group of symptoms. I'm feeling a bit discouraged at the moment. I was doing quite a bit better for the past few weeks on trazadone and serzone, but have had a flare-up of pain and fatigue (had out-of-town company and did too much, I guess). I'm pinning my hopes on Dr. Goldstein. I'll let you know if he finds anything that works for me.

> Victoria, thanks for the links! Very helpful.
>
> Some symptoms I have:
>
> - The main thing is the back, neck, and shoulder pain. I wouldn't call it severe but it is quite unpleasant.
> - The pain seems to be worst in the morning and at night when I'm trying to get to sleep. I don't have trouble falling asleep on nights when I don't have pain.
> - I had an episode of recurring, severe headaches when I was 14 that resolved with Prozac. (They seemed to be associated with the onset of depression.) I've seldom had headaches of any sort since.
> - I have always had very bad menstrual cramps (NSAIDs do work for this, of course).
> - I have had an essential tremor ever since I can remember; when it gets bad or when I need to do fine motor work, I use a beta blocker.
> - I'm definitely hypersensitive to cold.
> - I've had various GI symptoms (mainly constipatioin and vomiting) that were written off as "anxiety."
> - I've had tendinitis, but so did everbody I knew in college (due to overuse of computers, presumably).
> - I seem to have tenderness in a number of the diagnostic pressure points.
> - I've had a number of random skin problems; my skin seems to be sensitive.
> - I'm accident-prone. I drop things a lot. (Interestingly, I noticed that this improved with buprenorphine and not with other antidepressants.)
> - One summer when I was going dancing a lot, I started having foot pains, and even walking difficult.
>
> I have early-onset (diagnosed age 14) "melancholic" depression - this preceded the pain. I also have social anxiety (probably not bad enough to be called clinical social phobia, though). I don't know if I've ever been diagnosed with panic disorder, but I have had spontaneous panic attacks as well (it's been suggested that this is actually a sort of psychomotor epilepsy, though).
>
> Some symptoms I *don't* have:
> - chronic fatigue
> - leaden paralysis (feeling of being heavy or weighed down)
> - migraine
> - multiple chemical sensitivity
> - TMJ
> - unrefreshing sleep (if I actually get enough)
> - paresthesias
> - irritable bladder
> - RLS
> - IBS (in any normal sense of the term)
> - premenstrual dysphoria
>
> So what do you think? And how can I go about dealing with this, regardless of whether it's FM or not?
>
> Thanks for your help...I'll definitely bring this up with my doctor, but I'd also like to talk more about it with people who've experienced it.


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