New medical thoughts on Fibro:
 

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/

I will try to summarize what I found important, and if you search further, you will find more on this subject.

1) "Tender" point analysis is being dropped in diagnosing Fibro. And new research into genetics and neurotransmitter actions in the brain are showing that there is an 8 fold increase in fibro among first degree relatives. And that pain perception of ANY stimulus (not just trigger points) is exaggerated in fibro sufferers.

2) The genes being looked at are 5HT2a receptor polymorphism T/T phenotype, serotonin transporter, dopamine D4 receptor exon II repeat polymorphism, and COMT (catecholamine o-methyl transferase)..which is involved in pain transmission.
In other words, the pain circuits in the brain are faulty and over-reactive.

3) Not everyone with the genes develop FM... there are triggers. A portion of the brain, that evaluates subjective sensory data, can be overactive and there can be autonomic and neuroendocrine dysfunctions.
Some of the triggers are:
a) peripheral pain syndromes
b) Infections esp with parvovirus, Epstein-Barr Virus, Lyme disease, Q fever (in Australia/New Zealand), uncommon upper respiratory infections.
c) physical trauma (automobile accidents)
d) hormone errors, such as hypothyroidism
e) some drugs (sorry he didn't list those)
f) vaccines
g) certain catastrophic events like WAR, but natural disasters and 9/11 attack did not show increase during studies. So the catastrophic event data is pretty strange IMO.

I won't go into the amazing details of neuronal functioning, but Dr. Clauw did give this list:
Facilitators in sensory processing + factors are:
Substance P
Glutamate and EAA (I don't recall what EAA is)
Serotonin 5HT2a 3a receptors
Neurotensin (a cytokine)
Nerve Growth factor
CCK (cholecystakinin)

Inhibiting factors - are:
Decending anti sensory pathways which include
Norepinephrine/Serotonin 5HT1a, b
Opioids

GABA
Cannabanoids
Adenosine

Now this sounds very complex, but using drugs successfully in Fibro patients depends on understanding where these drugs can work.

I am going to skip now to treatments, and comment that some of you will NOT like the following. I myself, do not see reflections of these treatments in the public yet.

Strong evidence in studies for the following drugs:
a) tricyclic antidepressants-- Elavil(amitriptyline) and Flexeril--Dr. Clauw's most successful use is with Flexeril given at bedtime. He starts at 5mg/night and ramps up to perhaps 20mg if needed.

b) anticonvulsants-- gabapentin (Neurontin) and pregabalin (Lyrica). The Lyrica may need to be upwards to 600mg/day

c) Dual antidepressants with both norepi/serotonin actions:
venaflaxine (Effexor), Milnacipran (a new drug very promising with few side effects being evaluated now by FDA soon to be passed--very successful in other countries), and duloxetine (Cymbalta).

Modest Evidence:
a) tramadol (Ultram) for pain (this may interact with Flexeril however...so care needs to be taken if both drugs are used)
b) SSRI andtidepressants like Prozac (he says this one is best), Paxil, Celexa, Zoloft

Weak Evidence:
Human Growth hormone, 5HTP (an OTC supplement), tropisetron (http://www.tropisetron.com/ I don't think this is available yet in USA), and
SAMe (s-adenosyl methionine) an OTC supplement

NO EVIDENCE of effectiveness:
Opioids (narcotics), corticosteroids (prednisone), NSAIDs like ibuprofen etc,
Benzodiazepines (Klonopin), and nonbenzo sleeping meds (Ambien/Lunesta),
and guanifenesin (Robitussin).

Now the reason given about the Opiods...and I expect this factor to be hotly responded to here...is that studies were done on the internal receptors in the brain of Fibro patients for endorphin/enkephalin sites. It was found that these are overactive and all filled by endogenous molecules, and that there is no room for opiates to engage the receptors. Dr. Clauw said that Fibro is an upregulated condition where the body is already producing alot of internal opiates for this system.

Non-Drug therapies:

Strong evidence for improvement:
Education/understanding the condition and how it manifests
Aerobic exercise (start a few months after drugs are working)
Cognitive behavioral therapy

Modest Evidence for:
Strength training
hypnotherapy, biofeedback, and water therapy/exercise

Weak evidence:
acupuncture, chiropractic, massage therapy, electrotherapy, ultrasound

No evidence for:
tender trigger point injections, flexibility exercises.

Dr. Clauw over the years has changed his practice from where he would teach each new patient about 20 mins about fibro. He found that it was not long enough. So now he gives FREE afternoons to patients referred to him locally on the subject. If you are in SE Michigan, you can call for an appointment for one of these free lectures. He is a great speaker and very very knowledgeable and concerned.

Fibro is a very complex problem, and is now overlapping with other syndromes thought to be upregulated over stimulated conditions. IBS TMJ, low back pain, tension headache are examples.

If there is a damaged peripheral area of the body, then NSAIDs and opiods may be used cautiously. Examples are Osteoarthritis, Rheumatoid arthritis, and cancer. But if the pain is CENTRAL he feels use of opiods are not indicated and not useful. And as a matter of fact, in chronic Headache, use of opiods is now being discouraged, since new data shows that they perpetuate the cycle of central pain, and it is now not uncommon to show opiods actually causing chronic headache! But that is another topic, covered in this long seminar!;)

Dr. Clauw was unusual in other respects...he had no ties to drug companies in the disclosure statements. And he did not want to discuss off label use of other drugs at length. This is for liability reasons, and also because data is lacking at this time for those other agents.

Also, I am only the messenger here, so please keep that in mind! ;)

Thank you so much mrsd for sharing this information with us! First of all, it's encouraging to hear that there are medical professionals out there who actually believe in this condition and realize it's not "all in our heads"!

Alot of what you said hits the mark in my particular situation. Narcotics - tried many of them and only succeeded in feeling like a zombie. The NASAIDS did nothing as far as pain. Trigger point injections -- OUCH!! Don't know what she hit, but almost threw up and passed out from the pain with no good result as well.

Goes along with an overactive immune system -- I also have MS which is thought to be the same. Triggered by a drug -- my fibro started while on one of the injectable drugs for MS. It is interesting to note that the pain doesn't come solely from the "trigger points". For example, I've found trying to crawl on my hands and knees is impossible because of the pain. Even on carpet, it feels like my knees are on broken glass.

At my up-coming neuro appointment, I'm planning on requesting a muscle relaxant for spasticity so guess I'll try Flexeril!

Did he mention any connection with weather changes since most of us experience excessive pain then, especially when the barometer is falling?

Osteoarthritis, yes, since my 20's. Family connection? Seems like everything was called arthritis or rheumatism. So far the only thing I've found that takes the edge off is Aleve (naproxin).

Thank you again and please keep us informed if anything else new develops!

Dr. Clauw is a very good researcher/doctor who does what my doc does on the east coast. They are buddies and know each other very well. Slowly they are breaking the code of FM but it is taking time and most docs are just doing what they need to do to keep their FM patients as pain free as possble.
Hopefully some use of meds available now will help. I have been down the road of all those meds and none of them worked. Only muscle relaxants and trigger point injections help so far. I am also on anti-d's and they only help so much too.
Please relief soon!

Thank you Mrs. D for the information
 

As always you are always there to help all of us with our complex medical condition. Thank you for recognizing the need to help those of us who deal with "beast" of fibro. The info you provided was most interesting and I am relieved that someone is finally looking into the genetics of the disease. As you may remember I have both fibro and RSD as well as now TMJ and burning mouth from chloral hydrate.
I do agree with him about the use of morphine - no help. Dr. Hooshmand really was against using that drug and said it would set you up for increased levels of pain. However, the exercise part he recommends is really impossible for me as I can do only minimal walking due to both RSD and fibro in back and now burning in soles of feet.
I plan on taking this article to all of my drs. to show them so they can understand my full body sensitivity issue. Some of them just "don't get it" when I say "don't touch me". This article clarifies this.
You are truly so kind to be of so much help to so many.
I am going to also post on the medications forum to ask a question.
Sydney

Hi Their,

Thanks so much for taking the time to post. Do you think PCR testing could help? I would appreciate your thoughts and wisdom on this. Much Love, Roz

Thanks for the new source of info for me. I'll pass it on.

FIBEROWENDY, who is the doc you see on the East Coast. Mine does as little as possible.
Janet

Coyote. The doctor I see is Dr. Don L. Goldenberg out of Newton Wellesley Hospital. I see him about once a year or so. He gives me the latest info and he keeps up with my progress on how I am feeling. He's a great guy. He doesn't prescribe anything just recommends to your primary what should be done for you. I tell you I don't know how many times that letter from my initial visit has saved me with new docs.
He knows Dr. Clauw and others doing research since he does the same things. Last time I saw him, he recommended taking vitamin D supplements along with your regular vitamins.
So there is a new fibro doc for those in the Boston area.

My view is he is missing a subset of fibro. That is the people that have fibro due to autoimmune disorders.
I have been through the anti depressants and none of them work. And the dose was to the level that i started to get serotonin syndrome.

I do not have depression. My fibro is due to damage by autoantibodies and high levels of INTERLEUKIN 6 from castleman's disease.

I do not believe that fibro is one disorder i believe that it is a group of disorders.
in many ways it is like MS or diabetes
In MS you have 4 different types. An diabetes you have type 1 and type 2

I believe that my fibro is due to low levels of GABA and/or Glycine in the CNS
The best meds i have found for my fibro are Gabapentin and a over the counter GABA supplement.
TO THIS DAY I HAVE DOCTORS THAT STILL WANT TO PUT ME BACK ON ANTI DEPRESSANTS. even through they do not work and the side affects are worse then the fibro. why because most doctors are trained that anti depressant are the best meds for fibro. even if they dont work.

I am glad this thread is being read and
 

generating questions.

It was difficult for me to condense the information presented by Dr. Clauw which
was a power point type thing... my syllabus does not have text, only power point slide copies.

First off... the main thrust of his lecture was the definition of fibro.
This syndrome is basically an overresponse by the nervous system to sensory and pain stimuli. In a fibro person (who inherits this tendency)...it is like a radio turned up to full volume all the time. In normal people there are feedback loops in the brain to turn DOWN stimuli, after they are perceived. In fibro this does not happen. So ALL stimuli tend to be preceived as noxious.

The facilitator compounds listed:
are in excess in fibro. So Pharma is looking at antagonists to these receptors.
For example a substance P antagonist is in phase II or III trials right now. Its target is depression, but it may prove helpful to fibro patients. I posted this on our Depression forum.

The inhibitor compounds:
are being looked at as reducers of fibro symptoms by increasing their activity at receptor level.

The pain loop is a complex circuit of ascending and descending fibers, and is really too complex to go into here.

Now if you look at the Most valuable treatments... gabapentin and Lyrica are listed as primary interventions at this time. Both do NOT affect GABA per se...here is there pharmacology:
The GABA functions are not primary but peripheral, and still not understood.

I would like to comment to Augoldminer...that some patients over the years on this board and Braintalk, have seen improvement in MS type symptoms and fibro by going on the gluten free diet. Gluten is a primary trigger for autoimmune issues in some patients. Some even do casein and corn elimination diets and find response to those as well.

Autoimmune issues can be triggered by viruses, and vaccines as well.
And they may exist in patients IN ADDITION to fibro..often people have several issues, which may or may not overlap.

Dr. Clauw believes that fibro is a genetically transmitted syndrome, and does not occur in certain people, because they lack the genetic error that allows the pain receptors to go into overdrive. That is his opinion at this time.

L-glutamine is thought to inhance GABA functions, and I have seen Inositol also recommended for this (it improves glucose utilization in the brain).

While Dr. Clauw does not work for drug companies, he did suggest that the combination SSNi and SSRi drugs help more than plain SSRi types. The new drug Milnacipran is very effective with very few side effects now used in other countries. It is very close to FDA approval here and may be available in one year or so.

I will also add that Dr. Clauw said that Fibro is the "last great frontier" that the drug companies are looking towards...
they want to find effective pharma agents because...well, frankly there is a huge financial gain to it. He predicts "blockbuster"
agents in the near future.

Here is the link to the new agent that may help with blocking excess substance P:
http://neurotalk.psychcentral.com/sh...ad.php?t=19026

I was a volunteer in the milnaciprin study and had a bad reaction to it. I broke out in huge welts on my thighs a few hours after half an initial dose. It's obvious I was on the drug - not placebo. It was a long hassle to get into the study and once in they tried to keep me in even though I reacted badly. Have also been in lyrica study that made me feel terrible. Started throwing it out. I'm not sure how well the adverse reactions are really recorded. I've been diagnosed w/mild fibro but think it's getting worse and/or I have other disease. I thought the glucosamine chondroitin was some help but gave me terrible stomach ache and diarrhea - of course I'm allergic to iodine. The anti depressants really scare me - have refused that route. No narcs either. Hope to find something!

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.

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.

bumping up...
 

for new eyes to see.

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

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?? :D:D

fanfaire
:cool:

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.

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.

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!:winky: You have such an intensely positive impact upon the lives of so very many! I have my depest respect, admiration and gratitude.:hug:

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! :grouphug:

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.

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.:hug:
I know so very many people are grateful to you!:grouphug:

Thank you so much, MrsD and to all of you posters who take the time to share what you know from your own experiences. :hug:

Does anyone know if he or anyone else has written any official articles about this?

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.

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

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.

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.

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.

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.

I Think I Have to Give Low Dose Naltrexone (LDN) a Try
 

I have looked at several articles that seem very positive about the LDN therepy. The dose is so low and side affects are so little that I think anyone who is suffering from chronic pain and fatigue should give it a try. I'm going to try it as soon as I can get a perscription for Naltrexone for my "drinking problem" and then split the 50mg tab into 4.5mg doses. Then take one of them once a night. It's important not to take more than 4.5mg. If it helps great. If not well no harm done. I have so much pain and fatigue I almost can't stand it. Some thing has to be done. After 12 years I'm getting so tired of feeling like dog doodoo. I hope this helps.

I have been diagnosed with peripheral neuropathy - in my feet and lower legs only. I do have pain in other areas of my body. I don't think this would be the right pace to post but this is where you, Mrs. D pointed me to on your welcoming reply (thank you for the warm welcome by the way).

My concern is that merely touching some of the areas of my body hurt, a lot, and I'm not even sure that I should go back to my Neurologist and talk to him about it.

Don't worry, I'll learn my way around and fall into the right places to post. Soon I hope :wink:

Here is the link to our PN forum.... I specialize in helping people heal when they have nerve problems. It can be done for some using certain nutrients and supplements.

This is our PN forum:

http://neurotalk.psychcentral.com/forum20.html

At the top of that forum is the subforum with informational posts on it ...so you need to do some homework to learn about PN.

There are many causes of PN and if some involving life style can be changed, you can get better.

Thanks for the very interesting information. I love this when you post things that are helpful.

I tried the savella, it was a big mistake for me. I take something in every category except the night time sleeping one.

Donna:grouphug:

thanks for info
 

I have had fibromyalgia for 18 yrs and essential tremor for 30 yrs. After many Dr.s, ad nauseum, I finally resorted to fentanyl patches for pain. Many feel that opioids are not effective, but for me it has been the only relief, with no side affects. I have used them for over 10 years and would like to discontinue this pain reliever in order to assess my current pain level. Unfortunately the patches are extremely addictive, a fact that has been of no concern to my many drs. My tremors are getting more disabling, but according to my dr.s, this is not a result of the fentanyl. I have my doubts. And the depression! Every day is challenge. Any thoughts/info about Fibromyalgia and essential tremor would be greatly appreciated.

My own journal with fibro
 

I was a healthy 44 year old man until a car accident left me with chronic pain, herniated discs, radiculopathy etc. Surgery helped the leg pain, but since then I developed a whole host of problems which I have reluctantly had to accept as fibromyalgia. Reluctant, because I am a doc who treats psych patients and when they say they have fibro and are wanting 5 Roxycontins a day I am immediately forced to question their motives. However, this damn condition is real and it causes me daily pain, occ numbness and weakness, insomnia, IBS, chemical sensitivities I never had, and overall decreased quality of life. It sucks.
I have not found a good doctor in my region so I end up being my own doc and telling my doc what to try....Lyrica helps me, Tramadol helps somewhat w pain, IBS, and anxiety, and various sleeping pills help at times. The fatigue is bizarre, sometimes really bad and I have tried Provigil, Nuvigil, Adderall and Vyvanse, all of which can help but all have side effects. Massage helps alot, but only for 24 hrs...cant get one every day! I have 16 out of the 18 trigger/tender points, so I'm not so sure thats not useful...those trigger points are on meridian lines and I am trying accupuncture now...we'll see. Doc Byrd

Welcome to NeuroTalk! Minah Byrd

You might be interested in d-ribose.

Here is a link to a thread about it, and acupuncture.

http://neurotalk.psychcentral.com/sh...ghlight=ribose

Ribose is part of the molecule adenosine. This is then part of ATP, ADP and AMP in the mitochondria. Adenosine is also the signaler of sleep. I've found that ribose is very helpful for chronic pain, and sleep problems.

Also if your B12 is low, you are not making melatonin. MethylB12 is the cofactor for converting serotonin to melatonin.
So do a blood test for that too. You should be at 400 or better, and not in the low ranges which are mistakenly given as "normal"..

http://neurotalk.psychcentral.com/thread85103.html
This thread has current medical information about this subject.

Thirdly, you will need to test your Vit D levels.
You can see significant improvement in a chronic condition like Fibro with raising your levels to the new suggested ones:
http://neurotalk.psychcentral.com/thread92116.html

And high dose tramadol can cause urinary retention and constipation in some patients.

Augoldminer
 

I was wondering if you can tell me how much Gaba you take, how often ect

Thanks for the info!
 

I've been diagnosed with Fibro, CF, IBS, Hormone Imbalance, and suspected of having Lyme disease. Have read the most about Lyme, and now I am starting to find out more about Fibro. Thanks for the information from the conference! I was especially interested to hear that chiropractic and massage help very little.

I have needed chiropractic adjustments for 7 years, almost every day at first, now a couple times a week. I suspect the Lyme bacteria has damaged my ligaments, and has compromised my ability to hold my adjustments. Has anyone else ever had this problem? I have tried so much, and am tired of being in this frustrating cycle. The pain and muscle tightness gets debilitating if I don't go back in for relief. ANY HELP OUT THERE?

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Thanks for being a messenger regarding the presentation made by Dr. Clauw. It is always good news when there is proactive research to link what works and does not work to manage eliminate symptoms. However, I do experience great relief from the flex excercising such as stretching, yoga, etc. I am just beginning to exercise after an immedaiate and tremendous weight gain from a previous medication. I am in water therapy classes and the relief is astounding. I feel so much better follwoing any of these modalities. Due to medication related weight gain....I did not want other health problems to crop up (diabetes, etc.). After weaning off the Lyrica (600mg daily) My Rheumo placed me on cymbalta. I take it along with the combination of drugs taken psych trauma stress syndrome. I believe that my fibromyagia was absolutely brought on by a stress related event. Though I tend to steer clear of opiods but must say on a really bad painful day a little bit goes a very long way. Well, thanks for the information ou posted. It offers me hope that I may be on the right path....for me. Every body is unique and I do not believe there is one answer for all of us . THANKS AGAIN