Thanks for your response. I was dx with fibromyalgia 6 1/2 years ago. Did all the blood testing and had an MRI. Every flare up I have my symptoms get worse and worse. My doctor now believed years ago that I had MS, but reading my neg MRI from 7 years ago made him think that, well, maybe I didn't. I used to live in PA, but drive down here where I live now to see him, because he is wonderful. Now that I live here for almost a year I have been under his care ever since. Anyway, I started with this crazy twitching on and off a few months ago. At one of my monthly visit with him, after it had gotten worse, he figured it was the ultram I was taking and took me off of it. It seemed to have calmed down a bit, but the last two weeks it has been back to be worse than it was before I stopped the ultram. He is a bit confused and said that the other meds I am on would not cause this to happen. It is pretty much constant now. By the way, he also tells me that I am the worst case of fibro that he has ever seen.
This constant twitching and jerking seems to be making me be very unbalanced. Unless it just all goes together. I was standing at the counter of a convenience store and the top part of my body kept bopping forward. My legs are very wobbly and I seem to get tripped up if I try to turn around too. Falling up and down stairs as well. OMG I went to my sons high school one time and I fell up the stairs twice and two girls laughed. It was so emarrassing. It's hard to explain in writing, but it is very noticable when people see me. My legs, arms and body will just move plus I get terrible twitching in my thigh muscles which makes them so sore. (like I don't have enough pain already)
I wish I could describe it better. I went to a Neuro years ago, he did a physical exam and said neg for parkinsons which runs in my family. All this was 7 years ago and like I said before, everything has gotten so much worse since then. Fibro is not supposed to be a progressive disease. I seem to develop new symptoms all the time. It's so crazy!! I could list all of my symptoms another time if anyone wants to now them. I would be happy to get other people's opinion as well. The list is long lol (if I can remember them all) lol My memory is sooo shot. Short term and most of my long term memory is gone as well. There are so many things from my past when I was younger and even only some years ago that I have lost. SIGH
Since this jerking has gotten unbarable, I have also been sleeping like crazy. I can't stay awake more than 3-4 hours at a time. I just get soooo exhausted. Now fatigue is normal with fibro and my meds, but never this bad. Most all of my MANY symptoms have gotten really really bad and I have aquired new ones with each flare up. I want to be tested again plus have more extensive tests that I didn't have back then. I, my family, and my doc have been convinced that I have it, I would just like the dx so I could begin the propper treatment. I came here to see if anyone else has this badly and what they do for it if anything can be done.
Thanks for reading!!