Newly Diagnosed

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Newly Diagnosed

Postby trajon_34 on July 12th, 2011, 12:50 am

Add another Oregonian to the BFS camp! I'm also 28, if this helps at all.

My experience with twitching and related symptoms is fairly new compared to some here. But I hope to be a veteran some day in the future!

I too made the same mistake as many on here, searching Google for "twitching", and going through the same emotional spiral that scared me and everyone around me. And I still have times of uncertainty.

I have been searching/reading through this website since May and finally decided to post because hopefully someone else can gain some reassurance through my story and others can perhaps provide me reassurance as well (I know selfish). Here it goes...

I don't have an exact date of my twitching but I have ALWAYS had random muscles throughout my body twitch from time to time. This would really only go on for maybe a minute or two and then stop for months. Never bothered me and I never though much of it. I probably didn't even notice most of them as I thought it was something everyone experienced. Well come this past March of 2011 I started getting 24/7 twitching in my lower legs (calves and bottom of feet) that would stop when muscle was in use. It looks like it is on the top layer of muscle and is kind of like popcorn popping up everywhere. Something like 100-300 per minute between both legs when at its worst. And it is usually at its worst when they are relaxed after exercise, walking, standing...any real activity that lasts for more than 10 minutes or so at a time.

At the time I started noticing this I still didn't think much of it because I am a competitive long distance runner and took on the crazy (possibly stupid) task of racing the Chicago, NYC, and Boston Marathons within 7 months of each other. I normally stick to one a year but thought the physical challenge sounded fun. I was in my final month of preparation for the final marathon (Boston) and noticed this twitching. I just assumed this was fatigued muscles and thought it only lasted a few hours after my daily running. Since I was upwards of 80 miles a week it seemed reasonable. And I didn't stress much. I ran Boston and PR'd. It wasn't until a week after that I started realizing that this twitching was 24/7. I took a few days off and it still wouldn't go away. So, I looked it up online. And you know where that went. It didn't bother me too much because I seemed to be running okay (although less because I was trying to recover). And I knew the hallmark sign was weakness. My mom convinced me to go to the doctor and they did a few basic blood tests and thought it was fatigue. So, I took a week off from exercise and it was till there twitching 24/7. And out of nowhere I started to have post run muscle burning that seemed to last longer than usual and running 3 miles was WAY more difficult than it should have been. This scared me the most since only 3.5 weeks ago I had run a marathon. At this point I got the referral to the neurologist. I started doing some basic weight lifting instead of running for the 2 weeks prior to my appointment. Noting no real strength loss and actually started gaining some strength, muscle mass, and weight. This was comforting. During the initial appointment he observed my twitching did the basic exam and didn’t exclude or include anything. He did say the exam was normal but the twitching was on the high side (as in the number that was occurring) so he wanted to perform and EMG. Which I had to wait 3 weeks for! Complete misery. During this time frame I did a few more runs and things seemed off still, my quads seemed just tired and super tight and 2-3 miles just felt super hard. My legs felt like they were heavy and like they weren’t absorbing the shock of each footstep hitting the cement. Nevertheless, I could still do it and could have pushed further if I needed to. During the EMG he tested everything from my feet to my shoulders. All major areas of my legs, torso, arms and much to my delight he said he saw the twitching on the EMG but everything else looked normal. He then gave me the diagnosis of BFS, told me about potential symptoms and what limited treatment options I could pursue.

Sorry…this is getting long. Fast forward to today. Roughly 3 weeks after the EMG. I’ve been slowly working my way through this weird exercise intolerance because I refuse to let BFS take running away from me even if I twitch like mad afterward. I’ve slowly got back to 45 miles a week this week and will keep moving forward. My quads continue to feel weird (occasional post run burning and heaviness), with some moments of normalcy every now and then but I’m hoping this is just me being a stupid runner and doing too much in a short amount of time. I guess time will tell. And hopefully some massage therapy will fix over time. As of now, I have the 24/7 calf twitching still and also random twitching everywhere else on my body (thighs, arms, torso, back, neck), awesome! My quads are the thing that bothers me the most and I just hope that they are just suffering from the abuse I put them through rather than something worse……

Anyway, thanks to anyone who read this entire thing! Sorry for the length
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Re: Newly Diagnosed

Postby trajon_34 on July 12th, 2011, 1:06 am

Oh yes, one other thing! He said the only thing that looked off during my first visit was that my CPK blood test results were on the high side of normal. So we tested it again after the EMG. He said he wouldn't call if it was lower than the previous. And, he never called. So I'm assuming it was normal. He seemed like a great doctor and went to the Mayo graduate school of medicine to specialize in EMG's and neuro muscular disorders, this too was comforting.
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Re: Newly Diagnosed

Postby dARR on July 12th, 2011, 9:33 am

Hey man,
I loved reading your post because your symptoms match mine perfectly. I too twitch constantly on my calves with the upper range being at least 10 per second on my calves plus the many hotspots that attack my thighs, ankles and arms(not mention shoulders, ass, back and face).

I am also 28 and my symptoms started after I (like an idiot) was working out 7 days a week in the gym +running+ swimming AND cutting calories. I am at 13 months now and my advice is to really keep up the exercise. In my experience I really worked hard to keep up my exercise and diet for the first three months after my doctors visit (kinda perverse self testing) but then struggled to keep it up once the lethargy and mild depression of non stop symptoms set in. I went from a fit 75kg to a fat 92kg in 7months (im back at 80.9 as of this morning thank beeping god).

Dont worry about any non-bfs diseases your story, symptoms and age (like mine) make it a textbook bfs case. Non-stop extreme calf twitching in young people is what meical textbook bfs is all about. Your golden.

There are many here that share these exact symptoms to a tee: check out dreadpirateroberts(bcfs), massagefan16, chrisuk, dr octopus, raindog(extremely cool video links)), luckyadam and a billion others that I forget if you wanna see how common your story is.

Take it easy.
He who fights with Monsters might take care lest he thereby become a Monster and if you gaze long into the Abyss the Abyss also gazes into you. Fredrich Nietzche, Beyond Good and Evil
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Re: Newly Diagnosed

Postby dARR on July 12th, 2011, 9:33 am

Hey man,
I loved reading your post because your symptoms match mine perfectly. I too twitch constantly on my calves with the upper range being at least 10 per second on my calves plus the many hotspots that attack my thighs, ankles and arms(not mention shoulders, ass, back and face).

I am also 28 and my symptoms started after I (like an idiot) was working out 7 days a week in the gym +running+ swimming AND cutting calories. I am at 13 months now and my advice is to really keep up the exercise. In my experience I really worked hard to keep up my exercise and diet for the first three months after my doctors visit (kinda perverse self testing) but then struggled to keep it up once the lethargy and mild depression of non stop symptoms set in. I went from a fit 75kg to a fat 92kg in 7months (im back at 80.9 as of this morning thank beeping god).

Dont worry about any non-bfs diseases your story, symptoms and age (like mine) make it a textbook bfs case. Non-stop extreme calf twitching in young people is what meical textbook bfs is all about. Your golden.

There are many here that share these exact symptoms to a tee: check out dreadpirateroberts(bcfs), massagefan16, chrisuk, dr octopus, raindog(extremely cool video links)), luckyadam and a billion others that I forget if you wanna see how common your story is.

Take it easy.
He who fights with Monsters might take care lest he thereby become a Monster and if you gaze long into the Abyss the Abyss also gazes into you. Fredrich Nietzche, Beyond Good and Evil
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Re: Newly Diagnosed

Postby dreadpirateroberts on July 12th, 2011, 11:10 am

Yes, as dARR noted, your symptoms match mine pretty well. I have run/jogged for almost 30 years now and, like you, refuse to let this "syndrome" keep me from doing it. I don't run as much as you and never did (currently run 15-20 miles a week, though I go to the gym when it gets too hot out). And yes, my calves and instep rumble like crazy afterwards - and they have a constant dull soreness to them also. My neuro prescribed me baclofen (mild muscle relaxer) which I take after exercise. It helps tremendously. Good luck.
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Re: Newly Diagnosed

Postby trajon_34 on July 12th, 2011, 11:52 am

Thank you both! Very comforting to know that my symptoms aren't unique in anyway. dARR, sounds like we were doing the same type of thing during the onset. My Neurologist mentioned that this can be seem in people who excersises a lot. Thats what I get for taking something healthy to the extreme I guess. Thanks for the advice on the exercise, it does seem like it would be easy to just feel sorry for myself and stop, especially since I don't feel like I did only 2.5 months ago. But I'm thankful because could be worse. Those videos you mentioned look exactly like my legs, thanks!

DPR, thanks for the tip on the muscle relaxer this sounds interesting and I'll mention to my doctor next time I see him. Also, great to have another runner around!

Thanks for taking the time to read my LONG story :D
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Re: Newly Diagnosed

Postby Rebecca on July 12th, 2011, 2:06 pm

Hiya, Trajon & thanks so much for posting your story. It wasn't too long at all and was exactly what I needed to read today. Unlike you, I am a good ways past 28 (57) and I was never a runner though I walked a brisk 3-4 miles several times a week. Years ago, every walk would bring on that "popcorn" sensation in my thighs. I thought it was normal too. And perhaps it was. Or perhaps it illustrated a predisposition to BFS/BCFS. Who knows? But I sure agree with so many others on this forum that heavy exercise might somehow play a part in the manifestation of BFS symptoms. In my case, I'd begun working with a personal trainer twice a week in the Spring of last year. Because my workout buddy was a co-worker (M) who is 14 years younger than I am - and because I am competitive by nature - I often pushed myself further than might have been prudent. Repeated cramping in the calves started in July '10, followed by 24/7 twitching in the calves and then the feet.

Now, almost a year into it, I have random twitching just about everywhere - always exacerbated after I walk or convince myself to get back to the gym to lift a few weights. Just yesterday I did a very few reps of free weights in my office. (You know...just to make sure I still could.) Later that night my bicep & forearms were thumping like mad. At first I wondered why and then I realized - oh yeah. So I don't work out the way I did a year ago. But I do try to maintain a moderate level of fitness. I don't know why I still feel the need to "test" myself. As a part-time studio assistant at a pottery studio I spend quite a few hours every week toting 50 lb bags of clay from place to place or lifting heavy kiln shelves.

Anyway, welcome to the board and thank you again for sharing your experiences. And I'm glad to hear that you haven't let this thing keep you from doing the things you love to do.

Warmly,
Becky
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Re: Newly Diagnosed

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