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no one seems to have any answers

I am a 39 year old woman.  After having viral menigitis in 2003 I have been diagnost with severe fibrmyalgia.  I have symptoms that don't seem to be part of fibro. I have seen neurologist in Dallas and Mayo in AZ. All testing, MRI's and EMG normal.  I am on the following meds. Paxil, nexium, marinol as needed, klonipin as needed, Suboxone as needed, zelnorm, xyrem.  I don't believe these symptoms are med related as they have continued through many changes in my meds.  Of course I have tremedous musclular pain throughout my body.  I am also very weak. My hands tremble at rest and in activity.  My legs also tremble during action for instance when holding my foot on brake or eccelerator, when walking down stairs or if I bend at the waist to pick something up.  If I bend at the knees and squat I can't get back up.  As I walk through the day my body starts to bend and freeze so I end up walking with my torso bent forward at the hips, my knees stay slightly bent and I walk with a shuffle like my thighs can't go behind my hips.  both hands tremble sometimes both legs but more so my right leg.  my head also seems to vibrate.  At night when I am going to sleep I get huge, painful muscle jerks.  It can happen in any part of my body.  sometimes it even happens in my face to where it feels like spasms all over my face.  I have had restless leg in the past but this is not the same.  The jerks are so severe my body parts lift off the bed.  I have also started experiencing stronger startle reflex.  Also my left thigh looks normal but feels raw.  Is this just fibro or something else?
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Avatar universal
I am not an expert on fibromyalgia but it does seem that you have more symptoms then is typically described in the condition. You should ask a rheumatologist, they have more experience with this diagnosis. However, you have had two neurologic evaluations which have been negative, and it is difficult to think of one neurologic disorder which will explain all of your symptoms. You stated you had restless leg syndrome in the past, this is occasionally associated with periodic limb movement disorder. Periodic limb movements occur just prior to going to bed and while you sleep, and typically involves involuntary movements of your legs. If these symptoms are new or changing, perhaps a re-evaluation by a neurologist and rheumatologist would be reasonable. Good luck
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Avatar universal
Please check out www.mercola.com and try his recommendations for health and search out info on fibro while you are there.  I know there is help for you.  Don't give up.  All my best.
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