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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).

New medical thoughts on Fibro:

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Old 08-13-2010, 04:59 AM   #31
davelikesfish
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My Mood: New medical thoughts on Fibro:
Cool 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.


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Originally Posted by beagle99 View Post
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 11-13-2010, 09:52 AM   #32
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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
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Old 11-13-2010, 11:53 AM   #33
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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.
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Old 11-16-2010, 08:26 PM   #34
Dmom3005
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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
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Old 01-25-2011, 10:07 PM   #35
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Default 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.
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Old 02-06-2011, 09:58 AM   #36
Minah Bryd
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Post 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
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Old 02-06-2011, 12:33 PM   #37
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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.
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Old 03-09-2011, 06:13 PM   #38
BittersweetSerenity
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Originally Posted by AUGOLDMINER View Post
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 was wondering if you can tell me how much Gaba you take, how often ect
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Old 04-22-2011, 06:02 PM   #39
dawnptl
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Crazy 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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Old 10-08-2011, 11:42 PM   #40
JossyB
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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/

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

1) Trigger 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!
==============================
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
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