
FM A chronic pain condition and gastrointestinal d...
"That's a Tuscaloosa-based surgeon's theory likely headed for a clinical trial...
Posted by Screennamesrdumb
"That's a Tuscaloosa-based surgeon's theory likely headed for a clinical trial early next year and one drawing support from a University of Alabama researcher who studies how viruses replicate."View Thread
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Reply: Link between Fragile X gene and fibromyalgia?
"...In light of this, the molecular test for FMR1 expansion should be recommended...
Posted by Screennamesrdumb
"...In light of this, the molecular test for FMR1 expansion should be recommended in patients with FM as well as
in patients with other described symptoms (anxiety, depression, primary ovarian insufficiency, muscle pain, autoimmune disease, family history of mental retardation or
intellectual disability, among others)."View Thread
Posted byScreennamesrdumb
in patients with other described symptoms (anxiety, depression, primary ovarian insufficiency, muscle pain, autoimmune disease, family history of mental retardation or
intellectual disability, among others)."View Thread
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Link between Fragile X gene and fibromyalgia?
Researchers in Barcelona screened 353 women with fibromyalgia for the FMR1 gene...
Posted by Screennamesrdumb
Researchers in Barcelona screened 353 women with fibromyalgia for the FMR1 gene associated with Fragile X syndrome, a congenital disorder. Four carriers were found in the women with fibromyalgia; none were found in the 125 matched controls. They hypothesize that "the FMR1 premutation may be a genetic factor predisposing females to develop fibromyalgia…" The rate of carriers in the women with FM was double the rate of the general population. More research is needed, but the authors suggest that screening would help to predict the possibility of developing fragile X-associated tremor-ataxiaView Thread
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Reply: A Good Day
A good day for me means I slept well enough to get up at 11:00 a.m. After that I...
Posted by Screennamesrdumb
A good day for me means I slept well enough to get up at 11:00 a.m. After that I can stay focused enough to complete my list of tasks for work and home. At some point in the day I force myself to exercise for an hour or longer. Best of all, a good day is a day when I manage my thinking and lead myself.View Thread
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Reply: A Good Day
I'm praying for more research - real research to help us all.
Posted by Screennamesrdumb
I'm praying for more research - real research to help us all.View Thread
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Reply: Got the blues!
I'm praying for you gdsjoy. Just do what you can do today and accept yourself...
Posted by Screennamesrdumb
I'm praying for you gdsjoy. Just do what you can do today and accept yourself exactly as you are. God loves us all - we don't have to do anything special to earn it. Take small steps. Pick up your phone. Go to the doctor. These can be your only goals for now.View Thread
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Reply: At What age does Fibromyalgia stop?
Push for research results in writing. Ask him to show you the results. Encourage...
Posted by Screennamesrdumb
Push for research results in writing. Ask him to show you the results. Encourage more research. I've had fibro since I was a child and it keeps getting worse.View Thread
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Reply: Persistant UTI and Fibro
I have the same problem plus sometimes have to strain to pee. Went to a urologist...
Posted by Screennamesrdumb
I have the same problem plus sometimes have to strain to pee. Went to a urologist and tested positive some of the time for infection. It took me six months to pay off the urologist so instead of going back to doctors who cost way too much and don't have answers, I started drinking a lot more water mixed with cranberry juice. This helped a lot. In addition, I avoided having sex anytime near my period. The chronic yeast infections I remedied with lots of non-fat yogurt every day and of course monistat the week before my period. This seems to keep them in control. My urologist gave me antibiotics to take prophylactically but I only take them if I have a urinary tract infection which happens now about once every six months instead of every month.View Thread
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Reply: Fibromyalgia is Progressive Disease
It's easy to line up with what the paraprofessional, general practice, and...
Posted by Screennamesrdumb
It's easy to line up with what the paraprofessional, general practice, and non-research oriented medical community is saying right now which is much of what I hear Annette and Anon doing. And why not. Answers of any kind can seem comforting.
Yet, so little research has been done. Think about the poor souls who were told their symptoms were purely psychological. Some of these people committed suicide because their friends and family wouldn't honor their suffering.
Now, MRI imaging shows fibro quiets - yes, quiets, pain centers which should be active, and activates pain centers which should be quiet. Even more interesting, brain chemical tracking shows the brains of fibro patients do not produce dopamine. The dopamine center is quiet resulting in thalamo-cortical dysrhythmia - the cause of central pain, tintinitus, depression, and more - yes - a grab bag of problems. So, for those who want to streamline fibro into a simple pain problem, study up.
I believe fibromyalgia is a neurological disease. Did you know rheumatologists now say many people diagnosed with MS have been misdiagnosed; instead, they have fibromyalgia? Think about the respect MS gets as a disease compared to fibromyalgia. It is simply a couple words. The words we use when describing what's happening and has happened to us are extremely important - never forget that.
I believe there are at least two kinds of fibro. 1. Polygenic Fibromyalgia: meaning you are born with it.
2. Secondary Fibromyalgia meaning you acquired it from head or spinal cord trauma. The results of the poll above clearly show about 70% of those who answered suffer from Polygenic Fibro. The rest - Secondary. Researchers need to divide the two groups and work a lot harder to find a cure or at least medication that brings near normalacy.
Personally, I hate catering to my fibro. It's an ongoing regimen of self care that takes up a lot of my time and limits me. I dislike working part-time more than words can say. I would love to be out there with the rest of the movers and shakers but the fact is, this frustrating illness limits me. It limits me physically and financially - which sucks.
Finally, I want to address the idea that it is aging which makes fibro worse not the progressive factor. Well, If you have secondary fibro, I'm sure it seems that way to you. If you have polygenic fibro then you understand the progress as you have accumulated symptoms one by one. I spoke to my 72 year old father about a year ago, before I was diagnosed. I couldn't understand the stiffness and pain I was hit with last year. I asked him, "Do you feel pain when you sit for more than 15 minutes or when you get up to move. His answer, I don't feel any aches or pain at all. Do you??" So, yes, aging can worsen things for some yet certainly isn't the reason for progressing pain in ALL of us, you see. Because everyone does not have more pain with age....View Thread
Posted byScreennamesrdumb
Yet, so little research has been done. Think about the poor souls who were told their symptoms were purely psychological. Some of these people committed suicide because their friends and family wouldn't honor their suffering.
Now, MRI imaging shows fibro quiets - yes, quiets, pain centers which should be active, and activates pain centers which should be quiet. Even more interesting, brain chemical tracking shows the brains of fibro patients do not produce dopamine. The dopamine center is quiet resulting in thalamo-cortical dysrhythmia - the cause of central pain, tintinitus, depression, and more - yes - a grab bag of problems. So, for those who want to streamline fibro into a simple pain problem, study up.
I believe fibromyalgia is a neurological disease. Did you know rheumatologists now say many people diagnosed with MS have been misdiagnosed; instead, they have fibromyalgia? Think about the respect MS gets as a disease compared to fibromyalgia. It is simply a couple words. The words we use when describing what's happening and has happened to us are extremely important - never forget that.
I believe there are at least two kinds of fibro. 1. Polygenic Fibromyalgia: meaning you are born with it.
2. Secondary Fibromyalgia meaning you acquired it from head or spinal cord trauma. The results of the poll above clearly show about 70% of those who answered suffer from Polygenic Fibro. The rest - Secondary. Researchers need to divide the two groups and work a lot harder to find a cure or at least medication that brings near normalacy.
Personally, I hate catering to my fibro. It's an ongoing regimen of self care that takes up a lot of my time and limits me. I dislike working part-time more than words can say. I would love to be out there with the rest of the movers and shakers but the fact is, this frustrating illness limits me. It limits me physically and financially - which sucks.
Finally, I want to address the idea that it is aging which makes fibro worse not the progressive factor. Well, If you have secondary fibro, I'm sure it seems that way to you. If you have polygenic fibro then you understand the progress as you have accumulated symptoms one by one. I spoke to my 72 year old father about a year ago, before I was diagnosed. I couldn't understand the stiffness and pain I was hit with last year. I asked him, "Do you feel pain when you sit for more than 15 minutes or when you get up to move. His answer, I don't feel any aches or pain at all. Do you??" So, yes, aging can worsen things for some yet certainly isn't the reason for progressing pain in ALL of us, you see. Because everyone does not have more pain with age....View Thread
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Reply: Fibromyalgia is Progressive Disease
How do you explain the hardened muscles, the permanant knots, and the muscle...
Posted by Screennamesrdumb
How do you explain the hardened muscles, the permanant knots, and the muscle spasms? I had an x-ray done about 10 years ago which showed one of my ribs was pulled upward from a permanent spasm. The doctors were surprised and couldn't explain it. These are not from exacerbated sensitivity but something you can touch and see. How about the horrific sleep disorder? This is not a sensitivity. It is proven fibro patients have alpha waves running through their delta sleep depriving them of restful sleep all the time. Do you know anything about long term sleep deprivation? The suffering is immeasurable. The medical community has documented that fibro comes with this and more. To not "believe" it is anything more than a sensitivity to pain is denigrating to the scope of FM and how it affects the lives of those who suffer from it. Take it seriously. Take what it does seriously.View Thread
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