Just wondering. My doctor won't officially diagnose me with it because he said my insurance may drop me down the line. I'm just feeling utterly miserable right now, wondering if anyone can offer some support or advice.
Jax430
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Re: Does anyone have fibromyalgia?
I have no advice, but just wanted to give you some
dm24angel
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Re: Does anyone have fibromyalgia?
same here...my dr did not formally diagnosis me, mainly because I have some symptoms and some I dont. I have had 2 Mri's and a spinal tap( about 5 yrs ago) to rule out MS and Lupus...and Im borderline Lupus which happens aLOT with people diagnosed with fibromyalgia...
Also my MRI's show white matter in the brain ...MS was 100% ruled out..and its another symptom of fibromyalgia when other diseases are ruled out.
My main symptoms are extreme fatigue..not ALL the time, but once every month or every 3-4 months if Im lucky. I will have days where I could sleep for a good 20-30 hours straight! Its not unusual for me to sleep 15 hours, wake up and be back to bed in 2-4 hours for another 9-10 hours. But by the following week I feel better. I get a Lot of gas too..which weird enough is a sure sign when theres a LOT that the sleepiness, allover pain is coming.
I have days where DH cannot so much as touch my arm without me screaming. I have the 'tender points:..sometimes my chest hurts so bad in those spots ( near my neck kinda) A towel on it hurts....but again it does not last..thank GOD...I could not imagine living with it 24/7.
I devloped a degenerative cartlidge disease in my knees. My dr said its hardly ever seenm in both knees and women or men under 50 , so he attributed it to the fibromyalgia.
I basically take a TON of vitamins, Dr helped me understand what to take...Dairy makes it worse, I stay away from that. I take Motrin if Im in pain , and once or twice have had to have a muscle relaxer due to the ' points' pain, but mostly I can deal with it. The knee issues are my only major concern...I will need synthetic cartlidge treatments for life, but they are only 1-2 times per year.
Good luck..theres a TON of info online...Its hard to distinguish what will help for you. What helped me, was pinpointing my MAIN symptoms and working on elliveiating them only....most people do not have the same symptoms as the next person.
On a side note, my mom was diagnosed with it as well, and we have almost identical symptoms and the Dr said new studies are showing its VERY genetic...
heidla
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Re: Does anyone have fibromyalgia?
Just wanted to give you lots of .
Check out WebMD. They have such great information.
cjb88
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Re: Does anyone have fibromyalgia?
my mom has it... it *****... i didnt know that it was gentic though... i guess i need to go to the doc and watch out for it... it stinks to be so tired all the time and warn out..
lolita4life
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Re: Does anyone have fibromyalgia?
kevins Ex did. she was always in alot of pain.
nycchic_24
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Re: Does anyone have fibromyalgia?
My mom has it too.
She got a great book at barnes and noble though. To be honest, I think it was fibromyalgia for dummies. She basically had to diagnose herself with it because her doctor wasnt familiar with the disease. I know its very painful and tiring. Any questions...Ill ask my mom for you.
marymoon
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Re: Does anyone have fibromyalgia?
Thanks so much. I've been so slack with ym vitamins, so that could explain this the sudden surge in symptoms (though it doens't really need a reason). I have those same chest points I think. I have random points on ym body that just hurt like heck for no apparent reason. My doctor said one of the ways they diagnose it is that they press on these points on your body and if 11 out of 18 of them hurt, it's a positive diagnosis. It's such a nebulous disease. They thougth I had lyme disease for awhile, and one test did come up positive, but all subsequent tests were negative, so they're counting it as a fluke. Thanks for the hugs. I really need them. It's so frustrating! I'm going to go take my vitamins!
dm24angel
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Re: Does anyone have fibromyalgia?
Posted by marymoon
Thanks so much. I've been so slack with ym vitamins, so that could explain this the sudden surge in symptoms (though it doens't really need a reason). I have those same chest points I think. I have random points on ym body that just hurt like heck for no apparent reason. My doctor said one of the ways they diagnose it is that they press on these points on your body and if 11 out of 18 of them hurt, it's a positive diagnosis. It's such a nebulous disease. They thougth I had lyme disease for awhile, and one test did come up positive, but all subsequent tests were negative, so they're counting it as a fluke. Thanks for the hugs. I really need them. It's so frustrating! I'm going to go take my vitamins!
Yes they tested me and my mom for lyme...I truly think I would be ok, if not for the exhaustion..its not so much of being tired, but Sometimes I feel like Im in a bubble and feel sleep is what I need as I cannot comprehend anything...and the pain points...They can get very very bad, pushing a spot very gently can make me scream.
You will be ok...read up and find the bext remdedies and what works for you..I'm glad I did.
Ask your Dr to test you for Epstein Barr as well. Most people have it..Its like 8 of 10, but some, liek me have a constant HIGH level...almost triple what teh dormant level is..my dr says they are trying to push the relationship and find out more about why chronic epstein barr virus carriers seem to have fibromyalgia.
marymoon
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Re: Does anyone have fibromyalgia?
Yep I actually do ahve chronically high EBV levels. Lately that's exactly how I've been feeling. I just can't stay awake if I'm trying to lay down and read or something, an I just can't comprehend anything. I'm in a daze sometimes. Thanks so much for the kind words. It helps to know I'm not alone because it's reall so frustrating, and my doctor feels that's why my body still hasn;t fully recovered from my early 2003 car accident, Incidentally, trauma can cause fibromyalgia, so I may have gotten it then. Who knows. In addition to the exhausttion and the pain points, sometimes I just get this all over body pain, and I also get a lot of nerve pain, which is also related to my back injuries. it's miserable. And sometimes people think I'm just lazy, because there's nothing visibly wrong with me..
