bogisich.jerr1
New member
Hi,
First post out here. My story started 7 1/2 years ago. I woke up one morning with my big toe almost completely numb. That went away pretty quickly, but about a week later, the twitching started, first just in my arches of my feet, but then to pretty much anywhere in the body. Then came the dysthesia and pain...clothes rubbing against my skin was sometimes enough to make me want to scream in pain, while I'd get tingling/burning sensations that would also make me want to scream.
As with many, I worried about ALS (with the twitches), MS, and a lot of other things. I'm not worried about any of that any more...my symptoms have never gotten worse than that first episode, and I have no muscle weakness, balance problems, or any other problem other than pain and twitching. I could care less what it's called...BFS, fibromyalgia...whatever...I just want to manage the pain.
The first year or 2 were pure hell, but after that, it started to get better. The last 2-3 years have been pretty darn good, with at least the last 2 years being almost 100% pain free (although there's still some occasional twitching).
That all changed this week, when the pain came back with a vengeance. Like I said, I'm not worried about this being something that kills me, but the pain is intolerable at times and really ruins your quality of life. Very, very depressing last night when my 2 1/2 year old son wanted to crawl on me and sit on my lap, and the extremely uncomfortable sensations that resulted made me ask my wife to take him. How do you explain that to your 2 1/2 year old? Sigh.
HELP!! I'm looking for any suggestions on managing the pain! The only things I tried several years ago when I had this was elavil (amitryptiline?) and neurontin. Elavil at least knocked me out that I could sleep...don't know if it helped with pain. Neurontin did nothing. Any other suggestions?
First post out here. My story started 7 1/2 years ago. I woke up one morning with my big toe almost completely numb. That went away pretty quickly, but about a week later, the twitching started, first just in my arches of my feet, but then to pretty much anywhere in the body. Then came the dysthesia and pain...clothes rubbing against my skin was sometimes enough to make me want to scream in pain, while I'd get tingling/burning sensations that would also make me want to scream.
As with many, I worried about ALS (with the twitches), MS, and a lot of other things. I'm not worried about any of that any more...my symptoms have never gotten worse than that first episode, and I have no muscle weakness, balance problems, or any other problem other than pain and twitching. I could care less what it's called...BFS, fibromyalgia...whatever...I just want to manage the pain.
The first year or 2 were pure hell, but after that, it started to get better. The last 2-3 years have been pretty darn good, with at least the last 2 years being almost 100% pain free (although there's still some occasional twitching).
That all changed this week, when the pain came back with a vengeance. Like I said, I'm not worried about this being something that kills me, but the pain is intolerable at times and really ruins your quality of life. Very, very depressing last night when my 2 1/2 year old son wanted to crawl on me and sit on my lap, and the extremely uncomfortable sensations that resulted made me ask my wife to take him. How do you explain that to your 2 1/2 year old? Sigh.
HELP!! I'm looking for any suggestions on managing the pain! The only things I tried several years ago when I had this was elavil (amitryptiline?) and neurontin. Elavil at least knocked me out that I could sleep...don't know if it helped with pain. Neurontin did nothing. Any other suggestions?