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Does exercise help you?

PostPosted: September 2nd, 2002, 5:03 pm
by SusanSid
A question to BFSer's...

Do you find that exercise helps the fasciculations and BFS symptoms or does it make them worse ? I'm curious what type of exercise you do and if you incorporate stretching.

Would love some feedback as I've turned into a slug since this BFS stuff began in January (when I was exercising a lot) and am axious to bet back into an exercise routine but worry about making twitches worse.


PostPosted: September 2nd, 2002, 5:44 pm
by Annie
Hi, Susan. You ask a very interesting question, one that I've thought about quite a lot. Yes, I've had the experience that my fascics seem to become more active in muscle groups after I've exercised them (but not during exercise). By after, I mean in the next 24 hours or so. For example, after a strenuous bike ride I might notice more fascics in my hamstrings, quads, and buttocks; after lifting weights I might notice more in my shoulders. But, so what? Exercise is good for you for lots of reasons, including it helps alleviate the anxiety that many of us BFSers suffer from. I think you should go ahead and exercise anyway, whatever the impact, if any, on the twitching. I'm just grateful that I don't have a neurological condition that prevents me from doing the physically active things I've always enjoyed. Would be interested in reading other posts on this subject.


PostPosted: September 3rd, 2002, 4:36 am
by RaeKwon
I find that exercise doesn't really effect my twitches at all. Every time I exercise I seem to enjoy it so much more than before as I realise that I still have my strength. I don't tend to take for granted the fact that dispite my twitching I am healthy! However, I have found that regular exercise lowers the amplitude of a minor tremor that I have. When I am physically fit, my tremor tends to be near on non existant.

I agree with Annie, that you should go ahead and exercise! It definately helps to lower your stress level, which could in turn, help control your twitching. [/list]

PostPosted: September 3rd, 2002, 8:28 am
by kdb
I agree with Annie. I find that after exercising the twitches get worse but then seem to subside. I used to run quite a bit but for now I have switched to biking and swimming. Even if there is increased twitching I think that the benefit from exercising is worth it.

PostPosted: September 3rd, 2002, 11:11 pm
by Arron
A common side affect with many BFS'ers is "exercise intolerance" which basically means that when some people with BFS try to exercise, they get worse symptoms, cramping and fatigue pretty badly. Also basic aching that is more than the normal exercise "burn" and it can last for several days. Most people with BFS report increased twitching in muscles that were just exercised or stretched. You'll hear a lot of people say that when they stretch, it sets-off twitches in the muscles for a few seconds and sometimes for a few minutes. That is all normal for BFS.

PostPosted: September 6th, 2002, 11:49 pm
by SusanSid
Hi everyone,
Thanks so much for the replies. Just wanted to let you know I finally joined a gym in town and did some weight lifting and took a palates class for the first time in 9 months. It does feel good to finally start exercising. May sound like it's no big deal, but it is for me :) I'm sore (which feels good, if you know what I mean) and very motivated. Thanks for the support. The mental and physical benefits are worth some additional twitches. I was surprised at how stiff I was after so many months of sitting and worrying instead of moving and living.
Sue :wink:

PostPosted: September 7th, 2002, 11:21 am
by Annie
Sue - you go, girl!

PostPosted: September 14th, 2002, 6:26 pm
by Jen
I can relate to everything that Aaron wrote. On some days, the smallest amount of exercise, even daily chores such as dishes, can leave me feeling exhausted and achy. On other days, I'm fine (but not ready for major exercise). When fatigued from exercise, I find that resting goes a long way. Sometimes I can rest for as little as an hour or two, and then be full of energy. Othertimes, I will feel exhausted for a couple of days. Regardless, the fatigue always seems to end and a burst of energy takes over. Even if exercise does exhaust me, I feel better (when the ensuing fatigue is gone). I am always very twitchy after exercising, but I never feel it during exercise.

PostPosted: September 15th, 2002, 9:12 pm
by Debbs
Yeah me too Jen, Im exhausted after excersising, I flop on the couch for at least 30 minutes close my eyes and just relax, but I feel better and energised after that rest, excersise is good for the mind body and soul its a must to keep healthy so Im doing it regardless of how I feel ! Im always stiff after excersise specially my calf muscles, I havent noticed any twitching during excersising but soon as I rest its there doing its thing somewhere in my body usually my legs...


PostPosted: September 16th, 2002, 7:08 pm
by Jen
I never feel the twitches during exercise either. My calfs, thighs, and forearms get stiff too. Oddly, it's usually only one calf, or one thigh, or one arm. Not very symetrical. I agree about exercise being very important. Now that I've got the exercise/twitching/fatigue/rest "cycle" figured out, I can put more energy into exercising and spend less time wondering what is going on with my body. Understanding what is going, and talking to others about it, really helps!

PostPosted: September 19th, 2002, 11:19 am
by SoJerseyMom
I recently went back to a low impact aerobics class after a year off worrying about my health. My muscles don't twitch while exercising either, but sometimes twitch more when I sit down afterwards, usually in the calf or thigh. The muscles also feel stiff. Like you, Jen, I find that its usually more in one spot.

Exercise intolerance

PostPosted: October 2nd, 2002, 1:11 pm
by Davey
As Arron pointed out, exercise intolerance is common. I, myself, experience this symptom. I try to run 2-3 miles a couple of times a week and my legs feel like lead from the first step. It is only through shear will that I complete my runs. For the next two days I am totally exhausted and my muscles ache. I was also taking Kung Fu lessons, but the fatigue, coupled with my hectic schedule, has caused me to take a hiatus from the lessons. My twitches and cramping only increase slightly with exercise. I tire easily. When raking leaves or doing other manual labor, my forearms and shoulders tire quickly. I've tried weight training (hard to believe that I used to bodybuild), but that leaves me exhausted too.

The positive side to the exercise is that it helps with my other malady, restless leg syndrome (creepy crawly sensations and myoclonus when laying down to sleep at night). When I exercise, I don't need to take my neurontin for the restless leg syndrome. I'm sure the restless leg syndrome (RLS) is related to the BFS, but research suggests that RLS is caused by misfirings in the brain (that is why it responds to neurontin, an anti-epileptic).

Lately, I've slacked off on my exercise - I'm just too darn tired! I just began taking a calcium-magnesium-zinc supplement. We'll see what that does. I'm also taking iron supplements (RLS is linked to iron deficiency in some cases). Has anyone tried creatine, and if so, have you seen a change in your BFS? I know researchers are in experimental trials using creatine for ALS patients. I am going to give it a try, but I want to see how the Ca-Mg-Zn supplement works first.

Hey Arron! You're in Sonoma? I'm in Davis! We should get to together for a beer or glass of wine and talk about our BFS.

PostPosted: October 3rd, 2002, 7:12 pm
by Jen
Well, my attempts at aerobic exercise over the last 2 weeks were not a complete success. Sigh. I've been having terrible problems with bursitis in both of my hips this year, and it's flaring up again :( . I have compensated, however, by being as active as possible with my everyday tasks and such. I'm wearing a tread on my stairway because I don't hesitate to go up/down stairs to fetch this or that and I've been taking short walks. Overall, I'm feeling much better and much less fatigued :D . I'm just very happy to be moving again. I'm looking forward to doing something a bit more demanding as my hips regain their strength.