Advice Needed: BFS Since 2007

[Supabro]

All,It has been awhile since I posted, but I would really appreciate some advice and guidance. Since being officially diagnosed with BFS in Spring 2007 (but suffering every anxiety that I could imagine, like many on this board, from the moment twitching started in Dec 2006 to the official EMG results and diagnosis in April 2007) I've pretty much been able to ignore the constant twitching, because that was the prevalent symptom. I had some triceps soreness in each arm, but that went away with the anxiety.For the last couple of weeks, I have had triceps soreness in both arms, mild cramp-like feelings in both forearms,and pain that runs on the outside of the little finger of both hands. Anyone else experience anything like this? How long might it last? Should I expect it to go away soon?I don't have any anxiety over having anything worse than BFS. But I'd really appreciate any advice on how to cope, how long it might last, any stretching etc, that might be helpful. (Yes, I have run myself through all of the physical neuro strength tests. I'm not THAT mentally strong. No impact on exercising, weight-lifting, etc. Also no increase in the "baseline" rate of twitching, which is all over my body.)Thanks a lot in advance.

 

[twinTwosome]

I get random aches and pains in various joints, tendons, muscles from time to time. Today my wrists and forearms were bothersome,but have since stopped hurting. Usually these types of pains will last a few days, but can last up to a couple of months. My thumbs ached for about 2-3 months and are now doing fine. With BFS, strange is the norm.

 

[Krackersones]

I have what I don't know whether to describe as pain, tension, or discomfort in many areas of my body. The sensation in my muscles is like nothing I felt before the twitching started. I can feel it intensely in my forearms, under my arms, and behind my knees mostly. This "pain" is what really requires me to take Klonopin which virtually elimates it and does reduce the twitching too. When I describe it to doctors they say it sounds like what people with restless leg describe since I tell the the feeling makes me want to move and movement helps the feeling to subside some. Running or aerobics is as good as drugs but you can't do either all day. Anyway, I do not know if this is at all what you have but it could be so I thought I'd share. I was also told that restless leg is common in people with other neuropathies and is not really understood and relevatively common.Krackersones

 

[SaulburnStevensonJ]

I also get pains on my hand(s) that I never had before BFS and like Krackersones stated, the pain usually subsides with movement of the hand.I also agree with KevinDavies, strange is the norm with BFS.

 

[Supabro]

Thanks to all for your replies and suggestions. They are much appreciated. This is my first real attack in 16-18 months, and my first time with feeling fatigue and perceived weakness in both hands and forearms. Not much has improved yet but I figure I will just wait out the storm, and hope it is days, not weeks or months. I think I feel in my arms and hands right now what a chronic fatigue syndrome patient must feel like every day. Anyone else ever get that feeling of fatigue in a limb (or limbs)?

 

[Krackersones]

Flatcoat,Please describe something you want to do but can't. Can you type for long periods? Can you do all the housework you need to even if you feel miserable doing it?Also, tell us more about your age and general health status. If you are getting some weakness (and some of us may help you get perspective on it if you give more specifics), you may want to try some intervention. There are things out there that can cause weakness that is treatable and the sooner you treat it the better off you are.Krackersones

 

[Krackersones]

flatcoat,The specific information you provided is very reassuring that you have nothing worrisome going on. It sounds to me like normal stuff that you are focused on because you also have twitching, which is totally understandable but really not cause for concern. I too find myself more aware of when my muscles feel fatigue but if I really think about it objectively (which is hard to do when you twitch) I realize that I have had such fatigue way before the twitching ever started. Also, just count the number of products on the market for muscle aches, pains, and energy boosts. Clearly lots of people have physical fatigue at the level you describe. I bet you will do the normal stuff people do to rejuvenate and will be back to normal very soon.Krackersones

 

[Supabro]

Krackersones, KevinDavies and others,Thanks a lot for the replies. Still have some pain but no strength loss. Calves have been having a party twitching, but that's par for the course. It's funny how you get some muscle fatigue and pain and even after two years you immediately start thinking the worst. One normal workout and/or one pass through the various physical neuro tests that your friendly neurologist will charge you $150 to administer always bring home the key point of BFS - There's a HUGE difference between real muscle weakness and perceived muscle weakness (I might need to put that on a T-shirt).

 

[Nova]

I have pain in my right arm. Almost feels as if something is tight or tied around the top of my arm. The pain is an achy, irritating sort of pain that comes and goes. Sometimes down the inside of my upper arm, sometimes my forearm, or into my thumb. It usually improves if I am doing heavy work with my arms, but as soon as I rest it comes back. Mornings are good, pain increases during the day, and definitely worse with stress.