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).


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Old 12-29-2011, 04:58 PM #1
ItsWonderfulLife ItsWonderfulLife is offline
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Default Needing some support and to vent

Hey everyone please bear with me as I try to explain whats been going on and hope that maybe this mayn seem familiar to you all.
For the past 6 months i have been thru rhemotologists, neurologists, vasuclar, orthopedists, several primary care drs, and was sent to Stanford Hospitals neurology department for tests all which have no explanation as to what is causing my symptoms. Ive had mri's with and without contrast of my head, cervical, thoracic, and lumbar region to check for MS etc. all of that came back clear of any MS or serious issues although they found mild scoliosis, bulging disc, and some other benign abnormaltities but foiund no nerve impingment. Blood work is all normal, my b12 is over 1000 and my vitamin D is high as well and ana rhematoid factor is all normal. Ive had the evoked potentials of my optic nerve and the thing where they electricute you lol i cant remember the name but the only thing a couple has mentioned is could be fibromylagia but never went any further to check or test for it.
Im 26 years old and used to exercise 2 hours a day 5 days a week and now due to the weakness i can barely do it once a week. I have tingling in both legs behind my knees down thru my feet and shins. I also have periodic numbness in both of them as well. I have sporadic shooting pain thruout different parts of my body and some spots on my spine and glutes that are so tender i cant even touch them. I have some memory and focusing issues which i have been trying to conivince myself is just anxiety but i know its not. I went to college for 6 years and had an amazing memory and focus and now i cant seem to remember anything or think as quickly as before. (Admittidly though my anxiety is up because of all of this runaround with testing) Anyways im so sorry for being longwinded but i was wondering if this sounds familiar to anyone? Im having a hard time because i would like to have children someday and know that i dont need to worry about it being something disabling in the future but i cant seem to find any doctors that will look any further than this...thanks so much for letting me vent any comments are truly helpful for me right now
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Old 12-29-2011, 08:00 PM #2
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Well, it sounds like you know what you DONT have! There isn't a test for fibro, darn it. Nor is there a one size fits all pill. To get relief, most of us need to try several meds, to hope to find one that HELPS. If you start trying things give it time, unless there is immediate bad effect. Most of us are low in vitD3. Find a pain management doc who understands fibro, mine is solid gold!
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Old 12-30-2011, 09:32 AM #3
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Aussiemom is so right. And honestly I'm not a doctor but you discribed
fibro to a T if you ask me. Look it up on the internet. It will help you.

Then please look for a pain management doctor. Specifically tell the
group you call, that your looking for someone that will work with fibro
possible patient. Mine first took care of a neck problem. Then took
over my whole body.

Two things work very good for me.

1. A massage, but in my case I have bones and muscles that get very
tight so my massage therapist. Has to be willing to be a lot harder on
my body so to speak. She uses deep pressure. But now she also uses
something cups, which are great.

I have been with her for 4 years. And I have to say, its keeping me out
of Physical Therapy as much. (But my physical therapy was because of
car accident, neck that just happened, and I fell and hurt my arm)

2. I am on gabapentin, the generic for neurotin. It has worked wonders
for me. As long as I'm on the right dosage. I was also at one point on
cymbalta, that was fantastic, but when I lost my insurance. I had
to stop taking it. I now take celexa's generic. Which is starting to really
help the confusion and anxiety that was returning from being of the cymbalta.


I take other things regularly for other issues. And I have Tylenol/codeine if
I really need it.


I am giving my meds, but I luckily only need the mild ones.

There are lots more. So please get a doctor. You can ask if anyone is in your area. And knows a good Pain doctor also. But that should be its on thread.

Donna
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Old 01-05-2012, 12:21 AM #4
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I have been through just about every thing you've listed plus been tested for MS and thought it might be RSD. Been told I'm crazy by the best doctors. I'm 53.

Have to agree on seeing a pain specialist. That's who finally figured out that, besides a couple of bulging discs, stenosis and degenerative disc disease, I probably have fibro.

Because of back issues I was put on opiods but am being weaned off them and put on Cymbalta. Pain specialist said some think opiods can make you hurt worse if you have fibro. Also am on neurontin (doesn't seem to help me much) and skelaxin.

Besides the pain I have a very hard time focusing as well as sleeping. I ended up shutting down my own successful business because I just couldn't do it anymore. Haven't worked in over two years. Even I wouldn't hire me.

I would love to get massages as I think that would help like dmom says.

Sorry you've had to go through so much. It sure does not help that there isn't a special test they could give us. Good luck to you.
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Old 01-11-2012, 05:54 PM #5
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Quote:
Originally Posted by ItsWonderfulLife View Post
Hey everyone please bear with me as I try to explain whats been going on and hope that maybe this mayn seem familiar to you all.
For the past 6 months i have been thru rhemotologists, neurologists, vasuclar, orthopedists, several primary care drs, and was sent to Stanford Hospitals neurology department for tests all which have no explanation as to what is causing my symptoms. Ive had mri's with and without contrast of my head, cervical, thoracic, and lumbar region to check for MS etc. all of that came back clear of any MS or serious issues although they found mild scoliosis, bulging disc, and some other benign abnormaltities but foiund no nerve impingment. Blood work is all normal, my b12 is over 1000 and my vitamin D is high as well and ana rhematoid factor is all normal. Ive had the evoked potentials of my optic nerve and the thing where they electricute you lol i cant remember the name but the only thing a couple has mentioned is could be fibromylagia but never went any further to check or test for it.
Im 26 years old and used to exercise 2 hours a day 5 days a week and now due to the weakness i can barely do it once a week. I have tingling in both legs behind my knees down thru my feet and shins. I also have periodic numbness in both of them as well. I have sporadic shooting pain thruout different parts of my body and some spots on my spine and glutes that are so tender i cant even touch them. I have some memory and focusing issues which i have been trying to conivince myself is just anxiety but i know its not. I went to college for 6 years and had an amazing memory and focus and now i cant seem to remember anything or think as quickly as before. (Admittidly though my anxiety is up because of all of this runaround with testing) Anyways im so sorry for being longwinded but i was wondering if this sounds familiar to anyone? Im having a hard time because i would like to have children someday and know that i dont need to worry about it being something disabling in the future but i cant seem to find any doctors that will look any further than this...thanks so much for letting me vent any comments are truly helpful for me right now
Thyroid?...
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