Author Topic: Fibro  (Read 1897 times)


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« on: October 24, 2013, 04:57:00 AM »
For those of us who suffer with fibro as well as the other conditions, there is a new study out that I found quite interesting and encouraging. I cannot link it here because of copyright. It is on the Washington Times Communities site and is entitled, "Fibromyalgia solved: a pathology, not in the mind."


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Re: Fibro
« Reply #1 on: October 24, 2013, 05:32:10 AM »
Very interesting. If that's really true (and why wouldn't it be?), it's no wonder many Sjs patients also have fibromyalgia, because so often our thermostats seem to be busted.

(By the way, copyrights don't prevent hyperlinking, but that site seems to be commercial so this forum's rules don't allow linking it here anyway.)
Female, 52, in Finland
Sjögren's, fibromyalgia, Hashimoto, depression, migraines, pressure urticaria, mild Raynaud's, MCS...
Cymbalta, Tyroxin, Oftagel drops


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Re: Fibro
« Reply #2 on: October 24, 2013, 06:16:58 AM »
My thermostat definitely broke a long time ago! I used to think it was just a mid-life hormone--aka hot flash. I know now that there is much more to it than that.


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Re: Fibro
« Reply #3 on: October 24, 2013, 08:46:50 AM »
Thanks for the info.

I luckily have not been diagnosed with FM but my MIL and SIL's are plagued by it.  One SIL  is a RN has always dismissed the FM diagnosis as a convenient dumping ground for the doctors when they can not
find a reason.

I'll forward the link to her and see what she says now.

Love all the things I learn on this site !



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Re: Fibro
« Reply #4 on: October 24, 2013, 12:09:04 PM »
Anyone with FM should try going completely GLUTEN FREE. And .. get a test from Igenex Lab for Lyme and coinfections.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease


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Re: Fibro
« Reply #5 on: October 24, 2013, 03:26:42 PM »

Thank you Brenda,
A dear forum member sent me the info.

Here is the article by Dr. Rice, President of Intidyn and the senior researcher on the study.
He states: " “Instead of being in the brain, the pathology consists of excessive sensory nerve fibers around specialized blood vessel structures located in the palms of the hands.This discovery provides concrete evidence of a fibromyalgia-specific pathology which can now be used for diagnosing the disease, and as a novel starting point for developing more effective therapeutics.”

Now, in collaboration with renowned Albany Medical Center neurologist and pain specialist Dr. Charles E. Argoff, the study primary investigator, and his collaborators Dr. James Wymer also at Albany Medical College and Dr. James Storey of Upstate Clinical Research Associates in Albany, NY, clinical research proposals were funded by Forest Laboratories and Eli Lilly. Both pharmaceutical companies have developed FDA-approved medications with similar functions (Serotonin/Norepinephrine Reuptake Inhibitors, SNRI) that provide at least some degree of relief for many fibromyalgia patients.

“Knowing how these drugs were supposed to work on molecules in the brain,” Dr. Albrecht added, “we had evidence that similar molecules were involved in the function of nerve endings on the blood vessels. Therefore, we hypothesized that fibromyalgia might involve a pathology in that location”. As the results demonstrate, they were correct.

I now take a combo of meds to manage Fibro pain (Cymbalta + Neurontin), a while ago one med worked. So fibro alone or other pain issues mixed in?
The max dose for Cymbalta is 160mg per FDA I can see why there would be research for a more appropriate target med (alternative). Plus I need to not take the 2nd Cymbalta dose at bedtime as it interferes with sleep ...before dinner works better for me, meaning I need to carry an extra with me, just in case (or skip a dose vs. the risk of a interrupted sleep).

 “In addition to involvement in temperature regulation, an enormous proportion of our blood flow normally goes to our hands and feet. Far more than is needed for their metabolism” noted Dr. Rice. “As such, the hands and the feet act as a reservoir from which blood flow can be diverted to other tissues of the body, such as muscles when we begin to exercise. Therefore, the pathology discovered among these shunts in the hands could be interfering with blood flow to the muscles throughout the body. This mismanaged blood flow could be the source of muscular pain and achiness, and the sense of fatigue which are thought to be due to a build-up of lactic acid and low levels of inflammation fibromyalgia patients. This, in turn, could contribute to the hyperactvity in the brain.”

"Dr. Albrecht also points out that alterations of normal blood flow may underlie other fibromyalgia symptoms, such as non-restful sleep or cognitive dysfunctions. “The data do appear to fit with other published evidence demonstrating blood flow alterations to higher brain centers and the cerebral cortex of fibromyalgia patients” he stated."

Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"


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Re: Fibro
« Reply #6 on: October 24, 2013, 04:53:20 PM »
I was dx'd with Fibro in February. :/


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Re: Fibro
« Reply #7 on: October 24, 2013, 08:20:56 PM »
How is someone with Sjogren's diagnosed with fibro since joint and muscle pain are symptoms of both?


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Re: Fibro
« Reply #8 on: October 24, 2013, 08:42:33 PM »
Fibro gets thrown at most of us for our unexplained pain. Its even thrown into the mix more if we have all of or most of thecsjogrens symptoms without positive lip biopsy or SSA/SSB.
I have all the sjogrens symptoms and a positive ANA titer.1:88.A rheumy said UCTD/secondary sjogrens based on symptoms and schirmer test. Unfortunately his records did not get sent as he moved and his records went elsewhere and all I had copies of were labs. He did test me for lyme; epstien Barr etc. I was positive for EB. I had mono as a teenager.
My running diagnosis is chronic fatigue; UCTD; FIBRO; possible MS; possible sjogrens; etc. Etc.
Just a smorgasbord of AI.
I am happy to see the pathology for fibrous. My thermostat is very broken.
Primary sjogrens, UCTD; osteoarthritis;osteopenia; HBP ;fibromyalgia;RX-plaquenil, butrans 20mcg patch ;flexaril;hydrocodone5/325;restasis, omega3, vit D, super B complex;s ;gluten free;lisinopril;moderate hearing loss