Excercise and BFS

Information about how to manage or reduce the severity of BFS symptoms

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Excercise and BFS

Postby Lance on March 7th, 2005, 5:24 am

Dear All

I have recently been diagnosed with BFS and have previously been very active- cycling about 100 miles a week and climbing up to Everest Base Camp. I have had no energy since about 6 months prior to the diagnosis and am doing very little.

My question is about exercise. Is this a good thing? Should I restart a graded execise program? Does exercise improve symptoms long term? (increased blood flow/ nutrients etc to affected areas ).

I am piling on the pounds and would appreciated any of your much needed wisdom on this matter.

Thanks Lance
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Postby eleven on March 7th, 2005, 8:39 am

I definitely exercise. I have found that Yoga and Pilates help me a lot. They make me feel better all around, and give me energy. I dont know that they decrease my twitches, but mentally exercise releases tension/stress, which helps me a lot.
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Postby Lance on March 7th, 2005, 11:26 am

Dear Eleven

Thanks. Do you (or anyone else) know, if exercise will increase/ decrease/ make no difference to the long term management/ prognosis of this condition?

Thanks again.

Lance
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Postby eleven on March 7th, 2005, 12:33 pm

I can only imagine that exercise, performed at acceptable levels, will improve your condition long term. Of course, listen to your body and know when to rest.
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Postby Stephanie on March 7th, 2005, 1:49 pm

I twitch more after excercise, but I do it anyway.
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Postby Roger G. on March 7th, 2005, 8:53 pm

I am a 2nd degree black belt. I train and also instruct. their is no doubt that vigorous exercise seems to increase the twitching. Their is also no doubt in my mind that I feel much worse both physicaly and mentally when, for whatever the reason, ( work,injury,etc.) I have to cut back on my training. This one is easy, keep pushing forward,no matter what :!:
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Postby Lance on March 8th, 2005, 4:32 am

Thanks to all! Does anyone know if exercise actually gets rid of the problem. Intuitively I would think that with increased blood flow/ nutirents/ trace elements being washed into the area and all the crap washed out one could make a case that it is more likely that the BFS will resolve quicker (if it is going to). Or am I just barking mad? Woof!
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Postby eleven on March 8th, 2005, 8:17 am

I dont think that exercise will get rid of the problem, despite all of its wonderful benefits. But I think the point about exercise is that Exercise is the absolute best thing you can do for your body, rather or not you have BFS, CFS, or are perfectly normal.
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Postby Ish on March 9th, 2005, 11:24 am

I absolutely do think moderate exercise helps manage the general BFS fatigue, as well as, of course, improve your health in general. And as other recommend, I wouldn't pay any attention to the fact that it increases the twitching.

Unfortunately the sweet spot is hard to find. Like many here I have BFS-related exercise intolerance as well as general fatigue. It doesn't show up so much in gym; working out I feel good, strong, and fit, and for a few hours afterwards elated, as always. But every hour in the gym substracts, over the next 1-3 days about 8-16 hours of effectiveness in life due to resulting fatigue. Currently I'm now doing only about 2 sessions a week, 1.5 hours each. Only one of those has any resistance training (and just one set each, ending *before* failure, yuck), and cardio is down to 15". It's too bad as I love working out, always have. Would prefer to do it to exhaustion, but that's a luxury that's over for me now.

I've tried, and continue to try absolutely everything: vitamins, minerals, stretching, etc. And course I avoid m**t p*e. But no effect that I notice. No matter what I do even the most moderate excercise slams me with astonishing amount of pain and fatigue over the next 72 hours. Even a walk has its effect.

Actually I think one problem some of us have in restarting or redesigning our exercise routines is that we can't imagine anything other than the maniacal workout experience we are/were used to. I was an fanatic school athlete, was always physically active, and and often had an intense training regimen, with lots of additional strenuous activities. Anything other than workout to exhaustion and beyond -- reps to failure, one more mile (then another), to the summit and back in 18hrs, etc. etc. -- is hard to accept. Sigh. I loved it. But at the moment the 2 light 1.5 hour sessions, with couple miles of walking on the off days, seems to be all I can do, for now, and still have a life.

This is not an emotional problem for me. I have no ALS anxiety, no fear of dying, and I don't mind the (constant!) twitching at all. I have no other depression or anxiety that I know of (though I'm taking antidepressants anyway, just to be sure). Of course I am unhapppy with the situation. But that's it. For me BFS isn't an anxiety disease; it's something wrong with my nervous system that is a problem (a big problem) in my life.

---------------
Qual: Neuro dx 6 mos ago: BFS. EMG: lots of fx show up immediately and everywhere, and the report is... "normal except for fx". Symptoms: 1-3 twitches a second in legs, 24/7; 3-5 a minute elsewhere, no muscle untwitched; extreme soreness, esp thighs; various misc paresthesias (the usual); exercise intolorerance; general fatigue. Onset about 1.5 to 2 years ago.
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Postby Lance on March 10th, 2005, 8:20 am

Thanks ish- I appreciate your long and logical reply. It is interesting to hear that a lot of your reported symptoms are simliar to those who have been diagnosed with chronic fatigue syndrome in the UK. I have posultated on another board the link between the two and whether there is some overlap in symptoms. My understanding is that with chronic fatigue syndrome exercise is good and recovery (total) can be expected although not universally experienced.

I do have simlar symptoms to you- my twitching is definitely decreasing in severity and frequency over the last few months. I have had them for a year now. (or MAYBE I am just getting used to it all). Exercise- at the time feels great! I can almost sense the power "returning" to the muscle during the time on the run. Afterwards- well- as you describe- the strength flees and I feel like a jelly. I am aslo frustrated as I too remember those days (not so long ago) pushing the body until it wouldn't go on- and then a little more. What a mind buzz!

Thanks again for your time.
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Postby Cutte on March 11th, 2005, 12:37 pm

Lance,

Before all this stuff happened, I also liked to exercise. But, once the BFS started I was so anxiety ridden it took all my energy just to make it through the day. My symptoms are not gone, but they have quieted down a lot since it started. I have begun to exercise again. It really does a lot for me mentally. It helps reconfirm that this thing is benign and I can beat it. So, I would start easy, but, definitely, start exercising again.

Maybe we can start a new thread for all of us attempting to exercise again and our progress. It can spur us on and encourage others to resume as well.

C.
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Postby nacide on April 14th, 2005, 7:44 pm

Lance,

I also liked to ride the bycicle. I went to training in Mallorca every year, but when this thing started I had to stop. It was so bad that I did not ride the bike for a year. But because my condition was stable and even improving a little bit over the last 3 years, I stated to get on the bike again. My experience was that when I was on the road I did not feel the twitching. So I did gentle rides of about 2 to 3 hours with moderate speed.
That really helps me to forget the twitching for a while. After the ride the twitching usually increases a little, but I dont care because I am allready used to it.
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