Welcome Ginny: BFS Suspected

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Greetings all! My name is Ginny and I'm 49 years old. I've been twitching for about 3 weeks now. My best guess (after the initial ALS scare) is that I have BFS. Everything I'm seeing is consistent with that diagnosis (esp exercise intolerance; primarily twitching in calves, feet (altho get them all over occasionally). I haven't seen MD yet - altho probably will in the near future just for peace of mind. I am sort of biding my time at this point - certainly will get things checked out if I develop more serious symptoms.

Ginny (GinniferLynne) - When I first discovered this site and was reading various posts, yours were of particular, personal interest. I have been a runner for 32 years now. I completed my first (and only) marathon in 2000. I did my most recent half in October (2004) and was training for a Spring (05) marathon until I got injured in March (interestingly enough, in the calf). I love distance running. As it turns out, my twitching started after a mid week run recently - noted my calves twitching and have been nonstop ever since.

I plan to send you a private message or email in order to ask you some running related specifics so as to not take up too much space here. But I read your recent concerns re 'constant' twitching in the calf - the last couple of days, mine have been very frequent - sometimes several twitches per second (altho that's when it's at it's worst). I am curious - since you noted in a post that you were training for a fall marathon, have you seen a correlation between increased mileage (if you are in training mode) and problems with twitching/stiffness? Again, I'll write you directly regarding more running related specifics, but I am curious as I had been tentatively planning for a fall marathon possibility myself (Nov) until this happened. Now I'm very concerned that the increased mileage will exacerbate symptoms and be perhaps counterproductive to overall health. So, I'm really wrestling with this.

Reading the posts on this site has been very reassuring with regard to normalizing what I'm experiencing - both with the twitching itself as well as my emotional reaction to it. Generally I feel like I'm adapting to this new experience pretty well, altho when I'm into a high frequency twitch mode it can be a bit fraying on the nerves. I guess it's just still a pretty new phenomenon to me. I have also been having hormonal issues, dealing with hot flashes/night sweats, which interferes with sleep and makes adjustment to the twitch more trying and adding a bit to fatigue. I've wondered about the correlation with the onset of twitching and hormonal variability/perimenopause. Also, I do have a family history of autoimmune illness, and have over the last several years experience increasing frequency of Reynaud's episodes (altho not that often - mostly in the winter).

Anyway, this site seems like the best source of information and support on BFS available. It was a huge relief to find it. I'm really looking forward to learning from you all. Even tho I've just been lurking until now, I appreciate the candor and support you all give each other. It's been reassuring in many ways.

Best regards,
Ginny
 
Hi Fellow "Ginny"!

Where in Tennessee (assuming that is what TN stands for) do you reside? I lived in Clarksville at one time. I LOVE Nashville.

I, in all my paranoid, anxious, I know-I-have-something-bad moments, would certainly swear that my increase in twitching was absolutely not due to increased training - ALTHOUGH my husband would tell you otherwise.

Looking back over a year ago, I began serious weight training and cardio two months before I noticed twitching in my body. Now, maybe it was there before for years, but it took an upper lip twitch one evening to go to the internet and find the three letters that would haunt me to this day.

Anyway, my everyday (one off) weight training, spin class and running has certainly not dimmed my twitching. I'm goinging on approximately 14 months now.

Please email me. I would love to talk running and of course, "twitching". This will be my first marathon (marine corp marathon in DC) I just ran a 1/2 in March.

This is a great site with GREAT people. Everyone is understanding (esp. with anxiety attacks), probably because we've all been there (still there - like me) BTW, Have you been checked for various autoimmune diseased at this point?

Hope to hear from you soon.

Ginny in CA
 
Hi Eddie, as hard as it is to get out and get started exercising, I guarantee you will feel better if you give it two weeks. I don't mean running, or jogging, I mean walking a little every day. Enjoy the surroundings, take deep breaths and say positive thoughts to yourself. It really will help. I couldn't exercise for 2 weeks because I could hardly walk because my leg muscles were so painful. 2 weeks on the couch with hot/cold etc. Anyway, I could hardly get back into it. I'm so tired etc. but now I'm back into a little routine and I feel so much better. Less tired times. Try just a little bit at a slow rate and increase slowly. Let me know after two weeks if it doesn't get easier and mentally better!
 

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