Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS).


advertisement
Reply
 
Thread Tools Display Modes
Old 06-11-2007, 09:21 PM #11
Idealist's Avatar
Idealist Idealist is offline
In Remembrance
 
Join Date: Sep 2006
Location: Central VA
Posts: 1,937
15 yr Member
Idealist Idealist is offline
In Remembrance
Idealist's Avatar
 
Join Date: Sep 2006
Location: Central VA
Posts: 1,937
15 yr Member
Default

I find this a very interesting post, and thank you, Mrs. D., for posting it. A couple of years ago I was lucky enough to get to see a rheumatologist who's considered one of the best in our state, and much of what he taught me about fibro coincides with the info you've passed on. He was very leery of trigger point injections, and told me that in his own opinion the only way they might benefit a person is through the placebo affect.

I've also done tons of research on the subject, although most of it was done several years ago, when I was first diagnosed with the condition. At that time I consistently kept coming upon studies where the the main conclusion was that in most people, fibro seemed to be triggered by any condition which would cause a loss of deep sleep. It could be emotional, psycholgical or physical, but after weeks with no stage IV sleep the body began to change in major ways. Like you, Mrs. D, I am only repeating what I found in my two years of studying this condition, and some physicians were at definite odds with others. However, I do know that the more sleep I can manage to get, the better I feel overall.
Idealist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
GmaSue (07-12-2009)

advertisement
Old 06-11-2007, 09:32 PM #12
AUGOLDMINER AUGOLDMINER is offline
Junior Member
 
Join Date: Jan 2007
Posts: 13
15 yr Member
AUGOLDMINER AUGOLDMINER is offline
Junior Member
 
Join Date: Jan 2007
Posts: 13
15 yr Member
Angry

What i am afraid of is that once a drug gets approved for fibro. Doctors are going to a all or nothing approach. And want to put everyone on that drug. and if it does not work they wont try other drugs. They will dump you and claim that you are a hypochondriac or just looking for narcotics.

Since i believe that fibro is a group of disorders and not a single disease that can be treated with a single drug many of us will be left out to suffer. With out help.

I to have been looking at drug trials and have found that most are loaded to get the results that the drug companies need to make there drugs look very affective when they are not or only affective for a subset of fibro,

Many of the drug companies only look for mild cases of fibro that are more likely to be helped by there drugs and many of those drugs some of us have already tried an found to be worthless for a large numbers of us.

Some drugs the VA has researched like antidepressants and found that they only work in about 30 % others like cymbalta have been found not to work for most men. with fibro and the trials have no or few men. yet the drug companies don't say anything about this in the results of these trials.
AUGOLDMINER is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
GmaSue (07-12-2009)
Old 09-10-2007, 11:39 AM #13
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb bumping up...

for new eyes to see.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
GmaSue (07-12-2009)
Old 09-17-2007, 07:06 PM #14
DM's Avatar
DM DM is offline
Legendary
 
Join Date: May 2007
Location: Around
Posts: 10,109
15 yr Member
DM DM is offline
Legendary
DM's Avatar
 
Join Date: May 2007
Location: Around
Posts: 10,109
15 yr Member
Default

mrsd: WOW! This is very Interesting!!! Thank you so much for this thread. Is there hope out there for us????
__________________
DM




.
DM is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
GmaSue (07-12-2009)
Old 09-18-2007, 12:38 PM #15
fanfaire's Avatar
fanfaire fanfaire is offline
Member
 
Join Date: Aug 2007
Location: Little house on the prairie
Posts: 179
15 yr Member
fanfaire fanfaire is offline
Member
fanfaire's Avatar
 
Join Date: Aug 2007
Location: Little house on the prairie
Posts: 179
15 yr Member
Default

Interesting stuff. But I too think there is more than one kind of fibro. Mine was actually CAUSED by a reaction to an anti-depressant (chronic insomnia and uncontrollable muscle twitching that continues to this day).

Nevertheless, every time I see a new doc, they try to talk me into anti-depressants! And the last three rheumys I saw were convinced I'd be CURED if I just did 30 minutes of cardio-vascular exercise three times a week! I agree that exercise is important, but the most I can do is aquacise for people with arthritis, and I am told that's not good enough.

I am thinking that most of the research is on people with mild fibromyalgia from common causes such as motor vehicle accidents. That's a double edged sword: good because you get more predictable results in studies, but not so good for people who have multiple ailments and don't react predictably to a treatment. But if people with mild fibro could actually be cured or at least helped considerably, I'm all for that.

Dr. Clauw is good at what he does, and I'm glad real progress is being made in research. Where I live, the only clinical trial for fibromyalgia uses cognitive behavioral therapy and nothing else! I'm just tired of being told by docs that all fibro patients are lazy, won't ever do anything that hurts, and just need to get off their deconditioned butts and go jogging.

Any chance we can clone Dr. Clauw??

fanfaire
__________________
Sjogren's, neuropathy, gastroparesis, diabetes, celiac, Raynaud's, hypothyroidism, fibromyalgia, chronic myofascial pain, periodic limb movement disorder
fanfaire is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
GmaSue (07-12-2009)
Old 04-12-2009, 09:59 AM #16
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

The new drug, Savella has recently been approved by the FDA.
It is referred to in this thread as milnacipran HCl.

I have not heard much about it yet. But I expect to at the conference in late May this year 09.

It has slightly more norepi effects than Cymbalta and is a mix of serotonin and norepi acting. I would watch for elevated blood pressure effects with it.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DejaVu (06-28-2009), DM (04-30-2009), GmaSue (07-12-2009)
Old 04-27-2009, 04:49 PM #17
Azshadowlover Azshadowlover is offline
Junior Member
 
Join Date: Apr 2009
Location: Tucson, AZ
Posts: 6
10 yr Member
Azshadowlover Azshadowlover is offline
Junior Member
 
Join Date: Apr 2009
Location: Tucson, AZ
Posts: 6
10 yr Member
Default

Mrs. D,
Im a new member but I have suffered with FM since 1988. I am glad to see your post on on Dr. Clauw. Since the beginning his work has been one of few who gave credence to the syndrome as being more than just in your head. Thank you for taking the time to share with us the research going on. I look forward to learning more.
Azshadowlover is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
GmaSue (07-12-2009), mrsD (04-27-2009)
Old 04-30-2009, 05:54 PM #18
DM's Avatar
DM DM is offline
Legendary
 
Join Date: May 2007
Location: Around
Posts: 10,109
15 yr Member
DM DM is offline
Legendary
DM's Avatar
 
Join Date: May 2007
Location: Around
Posts: 10,109
15 yr Member
Default

Hello AZ and welcome to NeuroTalk. I too, suffer from FM along w/a couple of other DX's and I can describe it in one word~~ miserable. I'm glad you found us and I hope you check out our New Member Intro forum and post there, as more members will see it then.

Let us know if we can help in any way.



__________________
DM




.
DM is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DejaVu (06-28-2009), GmaSue (07-12-2009)
Old 06-28-2009, 01:21 PM #19
DejaVu's Avatar
DejaVu DejaVu is offline
Senior Member
 
Join Date: Apr 2008
Posts: 1,521
15 yr Member
DejaVu DejaVu is offline
Senior Member
DejaVu's Avatar
 
Join Date: Apr 2008
Posts: 1,521
15 yr Member
Default

A Warm Hello to All!

I have enjoyed reading back through this thread! Lots of interesting info!

mrsD: I cannot even begin to express the depth of my gratitude for your never-ending commitment to making sure people have access to important and accurate information, in so many different specialty areas! You do an amazing job...you know your science and can deliver it/teach it, with a heart of gold, too! You have such an intensely positive impact upon the lives of so very many! I have my depest respect, admiration and gratitude.

Did a conference occur in late May of 2009?

Fiberowendy: I'm so glad you have been in great hands, under the care of Dr. Goldenberg! Nice of you to mention Don L. Goldenberg, M.D. He's a fantastic person, an amazing doctor and a long-term prominent researcher! He was studying fibromayalgia in the 1980's and also working to help individuals suffering badly with fibromyalgia back then! He'd also collaberated on a study, along with Anthony L. Komaroff, M.D. (Brigham and Womens Hosptial in Boston, MA.). In that study, they were taking an early look at the differences and the commonalities between fibromayalgia and Chronic Fatigue Syndrome at that time. (Each of these gentlemen are outstanding doctors, dedicated researchers and avid life-long advocates for the people suffering from the conditions they each continue to research!)

My very best to all!
DejaVu is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
GmaSue (07-12-2009)
Old 06-28-2009, 03:26 PM #20
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

yes, the conference however did not have Dr. Clauw in it.
The scientist who gave the "fibro" portion had a thick accent and no one could understand him.

But since this subject came up today at PN, I'll put up this NYTimes article about the subject in case some missed it.

http://www.nytimes.com/2008/01/14/health/14pain.html

Also here is Dr. Zubieta
http://www.med.umich.edu/opm/newspag.../painbrain.htm

Most of the conference was
1) political things involving chronic pain, because of the upcoming legislation
2) estrogen induced pain, and migraine
3) diagnosing rare chronic head pain
4) PT issues with chronic pain

Dr. Clauw BTW is in the NYTimes article. He told us in 2007 that the drug companies are preparing drugs to make alot of money on Fibro...considering it a last frontier of sorts. Since that lecture Lyrica was approved for Fibro and so was Savella recently (which is not going over well so far-lots of complaints). Pfizer has already stated that it is not going to continue cardiovascular research in favor of more drugs like Lyrica.

I have seen many many patients who supposedly have a Fibro diagnosis, being treated with the wrong drugs.
Also the trigger point injections and diagnositic criteria are no longer being considered as valid by the researchers of same.

This remains a highly controversial topic. It is no fun having pain all day. But it is also unfair to be misdiagnosed and a real pathological issue might be found with proper testing.

I myself had a tentative fibro diagnosis years ago ...which was empty. So I know it can happen.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
GmaSue (07-12-2009)
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Secondary Fibro? Fibro-like Symptoms? Idealist Fibromyalgia and Chronic Fatigue 19 09-09-2012 06:02 PM
Fibro and the Flu DaDiva Fibromyalgia and Chronic Fatigue 4 04-01-2008 02:06 PM
Fibro From PN ?? nide44 Peripheral Neuropathy 16 02-05-2008 11:18 AM
RSD Medical Warning Sheet for Medical Personnel mollymcn Reflex Sympathetic Dystrophy (RSD and CRPS) 2 06-24-2007 01:29 AM
I am new to fibro/CFS Lilith Fibromyalgia and Chronic Fatigue 3 05-16-2007 03:43 PM


All times are GMT -5. The time now is 10:26 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.