Celebrating 1 Year of Twitching Support

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OnyxSnakesteffaniet

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Hi all,yesterday I had my first anniversary of twitching. This web site gave me a lot of reassurance during the last horrible year. Thank you very much for that.Unfortunately, I am in panic mode again. My symptoms are progressive. During the last year I had a tight feeling at the left ankle from time to time. Now my whole left calf feels tight all the time when I stand or walk. When touching, the muscle appears to be soft but nevertheless it feels tight. In the right knee I have a strange feeling when lifting the leg. I fear that this could be a sign of weakness although I am still able to run 10 km. Also, pain when using the fingers came back. I am thinking of another EMG. The last (clean) one dates back more than 8 month.Did anyone experience a similar progession of symptoms?Kind RegardsSteffen
 
If it helps at all, I have also been twitching for about 15 months or so, and just recently experienced tightness in the back of my calf, which I had never had. And, it's the calf that twitches all the time (my right one). It seems to come and go now, but it was tight for a good week or so. I had wondered if I had pulled a muscle, it felt so tight. But, no real pain. And, of course, it made me worried too, although I know this is common with BFS. It seems to have gone away for the most part.Mitra
 
My left calf tightened up and held like that for a solid 24 hours when I was only 2 weeks into this entire ordeal. Ever since then my left calf has remained stiff, on and off ... ever since. So this was one of my first symptoms. By the way - dont take this wrong but WHY THE HELL ARE YOU RUNNING 10KM!!! Dear lord !!!! Are you crazy? I say that with love .... but come on .... seriously?Give your body a break. I keep reading about these people with this syndrome talking about how they have been twitching for 2 years and cant figure out why, and oh by the way, they run 400 miles a day, and after they finished running up Mount Everest, their leg cramped .... i mean .... really? (again im saying this with a smile) ... but are some people not able to connect the obvious dots here? You have a motor neuron dysfunction going on. Your muscles are malfunctioning. The last thing you should be doing is running endless miles and miles. Is there some sort of endorphin addiction that these folks absolutely MUST RUN NO MATTER WHAT ... ? I cant figure it out. I need to work out just to keep from shrinking. Im single. I need to attract the ladies still, or ill be alone forever .... and yes ... maybe 30 minutes walking per day is advised for longevity and heart health .... but running insane distances is not necessary for anything, and all its going to do is prolong your BFS, and possibly make it way worse.I actually read on a forum about a guy who had this and he got to the point of full recovery . Then he went out and ran 10 miles a day and found himself back in bed unable to function. He couldn't figure out why! LOL ....
 
Thank you for the encouraging words. At least I know that I am not alone with these symptoms.Actually, I used to run even longer distances, I have cut down training to 30 km per week. Until recently I definitively felt better when running (although afterwards there was a burst of fasciculations). But now I feel the tight calf and have a kind of weak feeling in the right knee. I fear that I am addicted to running and it is hard to give it up :( Kind RegardsSteffen
 
Steffen,I know exactly what you are talking about.I am 7 month into bodywide twiching and a few days ago the calf tightness started.At the beginning I couldn't hardly walk. It felt like a knot in the calf muscle.Then it improved the following days. But the tightness is still there.Standing or walking feels very strange since then. And it is not only the calf. It is also my ankle, my hamstrings, the whole leg.As you, I'm afraid this could be the beginning of weakness.BUT: I'm also able to run 10 km. For me, during running the problems are less than during normal walking or standing. Very strange.I guess it cannot be weakness as we are still running that far.@Burger: There are people that have been doing a lot of excessive sports in theirlifes. I am one of those. And maybe Steffen is also.For us it is difficult to reduce exercise. It is hard to accept, that our bodys aren'tthe same anymore as they used to be. Still beeing able to run, calms me down. But after running my muscles go crazy.But I pay that price because I don't want BFS to beat me....
 
@ BFS Burger: Actually, as some kind of "young veteran" that has just recenly started running: I have found out that this is the absolutely best thing you can do with BFS. 20 or 30 km a week is not really as much as it sounds for someone who does not do it. Nothing better than going outside into the fresh air, do some moderate exercise outside for an hour, come back and then you feel BETTER than before. Yes, the twitching is somtetimes a bit increased shortly afterwards, but unless all the other exercises like weight-lifting etc., runnung seems to have definately no worsening effect on BFS pain. Even more, WHILE you are running, the BFS symptoms even seem to get better. Moderate running is the most physiological and healthy way of exercising and I would recommend it to any BFS Member , much more than weightlifting etc. We have quite a lot of runners on here and they agree that it definately helps them with their BFS. Honestly, BFS BROUGHT me to running :D)
 
Hi all,my tightness around the left calf and knee has not improved. I also experienced a couple of fasciculations at the tip of the tounge this week. Despite my clean EMGs this drives me crazy as it looks progressive. Is there anyone on this forum who got tightness as late as one year after symptom onset? Kind RegardsSteffen
 
You guys twitching at 1, 2, 8 years ... feel free to keep running 6-15 miles a day .... knock yourselves out. Its your body. But don't be surprised if your problems continue. Moderate exercise with sufficient rest in between is recommended for BFS. Running 6-15 miles a day doesn't qualify as moderate exercise. Not by a long shot. Especially when you've got a disorder that is highly associated with excessive fitness and consequent strain on the body. Seriously ... use good judgment. Extremes are never conducive to good health.
 
Our bodies are MADE to walk and run. Human beings have been doing this forever, while searching for food or just working outside. It is a ferfect movement to get rid of excess adrenaline. For me, I discovered that my general symtoms flare up when I get away from my running (outside) routine. I like to run 7 km, 2 to 3 days a week. I run very slowly :oops: but it makes me feel good. It has become part of my health programme. I never felt it as a strain on the body, rather a relief.
 
My body is definenately not made for running and walking, 'cause God gave me a car :)On Topic:I had stiff muscles i couldnt barely walk, it did hurt like hell. And that was in the very beginnig of Bunch Full of *beep*, also known as B.F.S. Still have the feeling of tight muscles in my legs regularely, maybe too much sex or BFS, im not sure, guess the latter :cool: :mad: It just happens, doesnt matter if I walked the whole day or not. One day little Lasstucken can walk six hours all through the city, all day long and theres nothing, on other days i just walk a few minutes and it gets stiff.Greetings,LevenLevi
 
I have found from personal experiences that *Moderate* movement of the affected muscle resolves tightness and stiffness. I had a locked up left calf for nearly 2 and a half months. It didn't change at all, until I got up off my *ss and began 5-10 minutes of treadmill walking and doing very light weight squats, and very careful stretching. And even then, it took a handful of iterations before I started feeling a complete release of the tightness. I also had a "miracle" event happen one evening when my calf was simply in pain and locked up tight. I juiced some Pomegranate (whole), Cucumber, Leafy greens, Green and Red Pepper, and Carrots, and within about 15 minutes [Edit: actually it was about three minutes] of drinking it, I had complete and total pain and stiffness relief. The only thing I had added differently to my juice was the Pomegranate that night, and the drink was violently bitter. Extremely, extremely bitter, i assume from the pomegranate "white" skin that i included. Don't believe thats possible? Read this: "The volunteers rested and did not drink any fluids. Then their tibial nerve was zapped again. This time, though, as soon as the toe cramps began, each man downed about 2.5 ounces of ... pickle juice, strained from a jar of ordinary Vlasic dills. The reaction, for some, was rapid. Within about 85 seconds, the men drinking pickle juice stopped cramping. But the cramps continued unabated in the men drinking water. Pickle juice had “relieved a cramp 45 percent faster” than drinking no fluids and about 37 percent faster than water"I don't know if it was the cucumber (similar in family to the pickle) or the Pomegranate, but there's magic in those veggies...BFSB
 
LOL, lasszucken you remind me of my hubby. He does not like running and when our best friend did his first marathon and I was soooooo excited about it , he said....."I don't get it. Honestly, All that hype about the marathon and stuff, in the the antique...honestly...do you think this guy would have RAN 42 kilometres if he had had a horse????"
 

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