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Fibromyalgia solved; A pathology, not in the mind

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TigerLilea

Active Member
WASHINGTON, October 17, 2013— The National Biotechnology Information Center (NBIC) of the National Institutes of Health (NIH) recently released the findings of research funded by grants from Eli Lilly Pharmaceuticals and Forest Laboratories that claim to have discovered a pathological (the science of cause and effect) cause for fibromyalgia.

To read the entire story go to:

http://tinyurl.com/pa8vz8x
 

mbofov

Active Member
Very interesting - thanks, TigerLilea. It would seem that doctors are taught to automatically assume an illness is all in the patient's mind if the doctor does not have a ready label to put on it. That's horrible training! But they do it both with FM and CFS (and I know it's been the standard response in the past to other illnesses to).

I often feel like a patient mistakenly confined to an insane asylum, and the more I protest that I'm not crazy, I really do have a very real and serious physiological problem (crashing, which has crashed my life), the more crazy I appear. They don't listen.

So I'm very glad for people who have FM that this study has come out. Doctors need to be trained differently, to actually listen to patients and take them seriously, but I don't think they are taught that.

And Jam, it will be very interesting to see if the Zembrin helps you. Also, getting your fibrinogen lowered should help your pain levels too - keep us posted -

Mary
 

IanH

Active Member
It is nice to see articles supporting the idea that fibromyalgia is a "pathology" and not "all in the mind".
However this is not the cause of fibromyalgia it is a consequence of it which in turn does produce some symptoms of neuropathy and muscle fatigue with consequent cramps and aching. This is not all there is to FM.

In addition the idea "it is all in the mind" is a stupid term which confuses people's understanding of the effects of stress on the function of the nervous system, immune system and consequent body wide functioning.

Articles which claim to have found the cause rarely cover the full gamut of research and hypotheses. They also fail to pursue the cause of their proclaimed "cause".
 

KerryK

Member
I welcome research from pharmaceutical companies as much as from others. Hopefully this leads to improved medications. That the ultimate cause of FM has not been revealed by the research just places FM at the same level of practically every other disease. At least an objective marker may have been found.
 

Mikie

Moderator
I agree with Ian. Over the years, we have seen so many posts and so many articles and studies cited as having found "the cause" of our illnesses. I'm always surprised that so many people do not understand the difference between a relationship and a cause. There are so many different triggers for our conditions but just because we get sick following a stressful situation, a trauma or an infection doesn't mean it was "the cause." It appears there may be a genetic factor involved and if enough triggers come together, they form a "perfect storm" for making us sick.

I welcome all the press we can get, including studies, new meds, and attention from the medical community. I think the "it's all in your mind" attitude is waning, especially since the availability of Lyrica and the accompanying TV ads for it as a med for FMS. Family members are often the worst when it comes to telling us it's all in our minds. Once they see the TV ads, they realize it must be something "real." People with seizures used to be put in insane asylums; progress is slow.

My amino acid solution injections (formerly called peptide injections) stop the symptoms of all my conditions but I do not consider them a cure. They correct the brain's inability to assemble the proper sequence of amino acids to produce proteins which can perform their jobs in the body but no one knows why some brains can't do this without the injections to retrain them.

I do not like using the two "C" words: Cause and Cure.

Love, Mikie
 

Keggette

Member
I have a sister who is suffering severely from FM and RH. She is in severe pain. She went to Florida and got one amino acid shot. She had to be off all prior medication prescribed by doctors for over 10 days in order to get the shot. Now she is waiting for a shipment for her next injection and she is in terrible pain. her hands are swollen and all she does is take pain pills and sleep. I am deeply worried about her and none of us know where to turn. The Dr that gave her the first shot is supposed to be shipping the medication to her but we cant get him to return calls.
It does not sound good. I dont know a lot about this drug. All I know is all her hopes are on this to feel better. This drug is not approved by the FDA and the dr she saw in FLA (DR Dakos) works with someone in England to get the drug. Otherwise she has to go back to the old meds which was some form of chemotherapy that has all kinds of side effects including hair loss. Any advice you can provide is much appreciated.
 

Keggette

Member
She has FM & RA, sorry. Does anyone know any other doctors that do the peptide shots? Wonder if the board member could contact me.
 

phomp

Member
It is nice to see articles supporting the idea that fibromyalgia is a "pathology" and not "all in the mind".
However this is not the cause of fibromyalgia it is a consequence of it which in turn does produce some symptoms of neuropathy and muscle fatigue with consequent cramps and aching. This is not all there is to FM.

In addition the idea "it is all in the mind" is a stupid term which confuses people's understanding of the effects of stress on the function of the nervous system, immune system and consequent body wide functioning.

Articles which claim to have found the cause rarely cover the full gamut of research and hypotheses. They also fail to pursue the cause of their proclaimed "cause".
Hi, I am not knew just not active. I am almost 70 and have had full blown FM since early 90's. I think I have had it all my life. I am going to share a link that is about some research done in 2012. I hope that more research on this same subject matter will soon be done. I know this post was some time ago, I hope people will take a look at this.... http://www.hindawi.com/journals/prt/2012/427869/ I also found another good site for FM's. https://www.facebook.com/FibroNetwork I hope my links will prove interesting to you as well, it has up to date news and research links.

We all have so much experience with FM and could be of use to researchers. I took part in a FM study at the U of W in Seattle years ago, it lasted a couple of years and it was interesting too.

I am on pain meds and have been since the early 90's after trying many things, following my doctor that I really trusted. I've been on the same dose all these years. We moved from Seattle and now I can not find a doctor that will help and prescribe the drugs; even a GP didn't want to take me because I was a pain patient. Now I have to go 800 miles quarterly (round trip) My long time Dr. retired and I picked another (one of 3 he suggested) one in the same clinic. He did not read my history and so he looked at me as a drug seeker! I had to prove myself to him...it has been a little over a year and on my last visit he told me he was going to work at Overlake Hospital; I was shocked and upset. I asked if I could follow him and he said they don't take pain patients. The government has made it so terrible for Dr's now so I think he left so he could start a new and just doesn't want to deal with people like me who are helped with opiates. I am living in hell now. I chose another Dr. at the same clinic and I am very worried that at age 70 what has worked for me and allowed me to work at my own business and deal with life that is under some control. The opiates also do not harm your organs or have bad side affects (for me) unlike Cymbalta and Lyrica...I tried them and they had terrible side affects. On the subject of drugs I was very surprised to learn (a year ago) that most of our drugs we take are made outside the US...ask your pharmacist, http://www.politicususa.com/2012/09/25/guess-prescription-keeping-alive-made-u-s.html I hope I've been some help.
 
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