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).


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Old 06-28-2009, 04:58 PM #21
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Smile Thank you, mrsD!

Hi mrsd,

Wow! You have responded very quickly!
This is interesting information!

It's exciting to see research (hopefully) getting closer to the truth on cause(s) and appropriate treatment(s). It has been a very long haul for those suffering and also for the researchers. I can recall an interview with both Dr. Goldenberg and Dr. Komaroff in mid-80's. They were extremely hopeful of having very clear answers within 10 years. Unfortunately, it has been much longer than ten years. (However, I am grateful to all of the researchers remaining dedicated to sorting this all out!)

Yes, many have been misdiagnosed and have been treated poorly. I do not deny that. I have seen so very much of it. It's extremely important for all people get second opinions (and more if possible) to be sure their own diagnosis is as closest to the correct diagnosis as possible.

Again, I am grateful to you for this information, for your input, and for all you lend to the health and welfare of so many individuals.
I know so very many people are grateful to you!
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Old 07-12-2009, 01:55 PM #22
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Thank you so much, MrsD and to all of you posters who take the time to share what you know from your own experiences.
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Old 09-16-2009, 04:10 PM #23
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Quote:
Originally Posted by mrsD View Post
I don't normally post here...but I want to share some information that came my way on Friday. I attended a long complex medical conference on Chronic Pain, and one portion dealt with Fibromyalgia.

The professor Daniel J. Clauw MD was just excellent.
http://www.med.umich.edu/painresearch/staff/clauw.htm

He is currently teaching the new data about Fibro to residents and staff at the University of Michigan. There is new data about what Fibro really is, and what methods treat it most effectively.

Some searches on Google using his name will bring up papers like this:
http://www.immunesupport.com/library...le.cfm/ID/3854
and
http://fmsglobalnews.wordpress.com/2...-rheumatology/
Does anyone know if he or anyone else has written any official articles about this?
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Old 09-16-2009, 04:27 PM #24
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Just Google his name.... many more sites are interviewing him etc, since that lecture.
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Old 09-16-2009, 04:46 PM #25
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Quote:
Originally Posted by mrsD View Post
Just Google his name.... many more sites are interviewing him etc, since that lecture.
I guess I mean like a scientific article...I'll try google-ing him.
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Old 11-24-2009, 12:43 AM #26
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WOW!!! I really appreciate your time in this thread. I learned quite a bit from your info.

I was diagnosed with Fibro in March of this year and I have already been through several drug combos. Nothing has worked thus far. However, I do see a Chiropractor once a week combined with massage therapy, and this actually seems to be the oly reason that I can get out of bed. I am not saying the Chiro/mass therapy is for everyone, but I am prof that it does work.

Again, I just wanted to say thanks.

Chad
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Old 03-17-2010, 02:41 PM #27
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Default re: Dr. Clauw & fibromyalgia

I've also read several literature review articles by Dr. Clauw. He is very much a well-respected, insightful, and forward-thinking researcher and practitioner in the fibromyalgia field. The previous excellent post describing his work is a top-notch summary, and a service to all fibromyalgia patients. I hope more information like this can be shared. The only new possible fibromyalgia therapy not mentioned in the above review--and this is still murky--might be low-dose naltrexone (LDN) which is being studied at Stanford. Only one paper has been published so far, and it is a bit more like a collection of case studies. A follow-up paper is noted to be due out soon from Dr. Jarred Younger there. LDN therapy is thought so far to help the symptoms for only a sub-group of fibromyalgia patients, and then, only moderately.
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Old 07-24-2010, 03:09 AM #28
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Chat article and a query

Thanks for the information; I am taking it to my pain Dr. appointment next month. I do have a question about the pain. I take Lyrica for ne tingling and such but what I have are spots on the top of bones. Many headaches are relieved after rubbing around the bone on my eyesockets - I also have the bones in my shouldars, when massaged hurt like heck and I have a spot on my foot right on top of the bones. Do bones have nerves along them? Ialso have osteoarthritis from sports damage in my thoughless conceptual youth. I find the opiates take away the pain but only for a short time, eg. an hour or two and then I have to wait for the next dose of medication for another bit of time. I do find hot water showers and bottles work on the persistent and morning pain. Any suggestions or information is very welcome...Ithurts but I am positive.
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Old 07-24-2010, 07:59 AM #29
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Quote:
Originally Posted by Ithurts View Post
Thanks for the information; I am taking it to my pain Dr. appointment next month. I do have a question about the pain. I take Lyrica for ne tingling and such but what I have are spots on the top of bones. Many headaches are relieved after rubbing around the bone on my eyesockets - I also have the bones in my shouldars, when massaged hurt like heck and I have a spot on my foot right on top of the bones. Do bones have nerves along them? Ialso have osteoarthritis from sports damage in my thoughless conceptual youth. I find the opiates take away the pain but only for a short time, eg. an hour or two and then I have to wait for the next dose of medication for another bit of time. I do find hot water showers and bottles work on the persistent and morning pain. Any suggestions or information is very welcome...Ithurts but I am positive.
Perhaps this thread will help:
http://neurotalk.psychcentral.com/thread123731.html

Massage stimulates circulation, and may be having tactile effects on adenosine, like the acupuncture does.

I've had much less muscle pain (I have arthritis too) since I started the ribose. Ribose does appear in some studies for fibro.
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Old 08-13-2010, 03:38 AM #30
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Default I Think I Finaly Found The Right Place To Introduce Myself

Hi, I'm Dave a 53 year old man, who people say, looks like I'm 43, but I feel like I'm 73. Pain and fatigue have been plaguing me for years.

I live in Denver, CO. I'm originally from Wisconsin. I spent 6 years in Germany. Music is my passion and I go to many shows. I enjoy a very large variety of music. I love to discover new music. I like to try new food and see new places. I'm going to China for 3 weeks in October which is a lifelong dream of mine.

I've posted most of this bio on other threads but this looks like the right place to introduce myself. I'm new so I don't have any idea how often people post or respond to posts. That's why I kind of duplicated much of the same stuff on different posts. I'm kind of eager to talk with someone about this medical stuff.

I started having problems about 12 years ago and the last 5 have been awful. The worst is not knowing what the hell is wrong with me or what causes it. I've had problems with depression, anxiety, chronic pain, stiffness and severe fatigue. After all these years I'm fairly sure it's Fibromyalgia. I've suspected Lupus, osteoarthritis, just depression or maybe I'm going crazy, amongst other things in the past. [ I am so tired that lately I've been sleeping 15 to 22 hours a day.] I was in the Army and eventually was kicked out in 2004 after 13 years because of my medical problems. I do receive benefits.

Anyway, I have been taking Gabapentin for about 2 years. I just got a prescription for Lyrica today. I'm supposed to stop my 1200mg 3xday and start my Lyrica (don't have my dosage available now) tomorrow. I hope it helps. I never noticed much improvement with the Gabapentin, only some mild but bad side effects.

I also take Tramadol 50mg 3xday, Celebrex 200mg 1xday, Hydrocodone 10mg 3xday, and Cymbalta 60mg 2xday.

I would like to talk to other people who have had similar problems and to people with advise. I understand that Fibromyalgia is more common among women than men. That's good for me because I like to talk to women more than men anyway.

I have also been reading about Low Dose Naltrexon (LDN) and it's benefits for my symptoms. Has anyone tried it or know anything about it?

I will be happy to talk to anyone here. HI again.
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