My Twitching and Anxiety: Update

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massagefanrx

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Well, not like I can say this wasn't my fault...

I've actually been doing pretty well, feeling much less anxious etc...and I thought the twitching had slowed down in my calves. The random "elsewhere" ones have definitely slowed down in relation to my anxiety level. So, while lying in bed the morning, when I first woke up they seemed not too bad. Then usually after I flex my feet or whatever, I get the twitches going pretty good ...so I decided to look :eek: , haven't done that in maybe 2 months because it freaks me out. So, 5 or so months into this, crapadilly ....they're still popping, twitching, maybe not quite at the level they were before but each leg gets a good one every 10 seconds or so...and hey, I have them in the muscle of my shin too...then, I started getting freaked out again because of how my shin cramps up about a mile into a run...not like I didn't know what I'd see when I looked- duh. I think when I look at them I figure 1) that is just too freaky to be "normal" 2) how can your muscles keep up that level of twitching without getting damaged. I don't get it.

Shelley
 
this is my biggest concern, my calf muscles are going to town on me, i've stopped counting how often they do it a minute because i loose cout kinda thing..

the good thing is though that they are twitching far too rapidly for anything like ALS to be a factor, and I dont have weakness, just a tight fatigued feeling from all the activity i do (i'm on my feet 9 hours a day walking around)
 
Well, that post makes me feel better because mine are going like crazy and I can feel every single one of them. I guess that's a good thing?? I've always felt that with the level of calf twitching that I have, there couldn't be no sign of weakness after 5 months if there was an issue. I mean, when I look at mine I might have three twitches within 10 seconds on each calf (like you said- I lose count too)
 
Just to put things in perspective.... I get several calf twitches per second, 24/7. This has been going on 11 years. So do many others on here like Ginny and 12Drifter12 etc. I don't think you can twitch like this without some kind of damage. My calves cramp and ache and I am sure this isdue to the over-use of these muscles.
 
But what have your doctor's said about the long term affects of all this twitching? Realistically, I'm not all that worried about ALS even though I haven't had an EMG because I know it is rare, starts with weakness, and that this twitching came out of the blue and has lasted for 5 months so far.

But, now that you are 11 years (holy mackerel!) into this...does the cramping get worse..stay the same?? ....vary depending on factors such as stress , etc...

My reason for concern...both of my jobs as a fitness instructor and massage therapist are very active and involve me being on my feet a lot and using my hands a ton (don't have much twitching there though) and my legs for teaching, obviously. I'm just trying to see if it's unreasonable to think that I'll be able to continue in these fields if this BFS/PNH...whatever the heck you'd like to call it...continues with this level of twitching.

I'm a little depressed thinking about it actually since I love both my jobs.

Shelley
 
Shelley,

These are answers I would love to have also. I have almost got to the point where I have stopped looking at my calves. They twitch all the time and I can't feel everyone of them. I fell them the most in the morning and late at night, but they twitch almost all the time when the muscle is at rest. The pain comes and goes. Some days not at all, some days fairly bad.

I have had 2 clean clinicals and am actually more nervous about the Neuro exam scheduled in 2 months.

Even more wierd is that I also get a ton of twitches in both buttocks. Now this is annoying, because rubbing your buttocks in public just doesn't look good. Even worse when I am at work!!

I was just in Calgary - triJeff, I went to the Calgary Flames game on Tuesday night. 3 - 0 win over Carolina. I had 4 club seats...what a great game!!

Peter
 
I too have a very physical job as a chiropractor and I am on my feet all day long, most days.

In answer to your questions I would say that over the 11 years, things have got worse. However, there are still peaks and troughs and I can have a few months of very little cramping and aching and then it will come back. The twitching never eases though. Always the same 24/7. I would agree that periods of stress and over-work can definitely bring on or aggravate my symptoms.

I would also say that although I acknowledge that the symptoms have got worse over the years, the affect they have on me is no greater than when it all first started. I believe this is because I have accepted these symptoms and do not angst daily over whether I have some disabling disease or not. Although it still isn't much fun thinking that you have this for ever even though it isn't life threatening.

I don't think anywhere near enough research has been done into this and perhaps eventually there will be more information available so that we can understand better what we are suffering with. I think we will all have a lot more peace of mind and I look forward to a time when this can be fully explained.
 
I tend to notice that my calves twitch alot more after some level of exercise and usually slow down during rest. Of course they never actually stop but the cramping happens to me from time to time. I've also thought about whether the constant twitching can tire out muscles but I don't think the twitches are strong enough to really cause long term damage. I mean look at how many times our other muscles which are active are used every minute like our eyelids. They seems to do just fine. I also think that the cramping doesn't actually come from the twitching but from muscle tension created by BFS. All I can say is that having parts of your body twitch constantly is so ridiculous that its almost impossible to register mentally. I have had this for almost a year but have stopped telling people outside of this forum months ago since people don't even know what to say about it. Usually they just blow it off like "wow that's weird", or "hey its like having a massage 24 hrs a day." Yeah right. That's when I started to realize that you can't take this thing that serious because its so bizarre. I still think I'm in the twilight zone sometimes when I think about having this condition. who else feels this way?.....
 
LOL- my GP said to me yesterday...Shelley, you do always manage to get all the weird stuff...

Never thought about it that way with all of our other muscles (though at least they get some rest at night- I doubt my calves do)...I guess the heart muscle works all the time without too much of an issue :D)
 
Not only that, but on a funny note, I noticed something interesting the other day walking near central park in nyc where they give horse and buggy rides. I noticed that these horses twitch like crazy all over the place when they're just standing still. I bet they don't worry about it since thay have no idea what's going on. Yeah, these are the things you notice when you have BFS. Of course I kept this observation to myself although I wasn't alone. I figured hey if a horse can do it why not me.....lol
 
Once every 10 seconds? -- HA!

Mine dance around all the time. More like 10 every second.

I also can’t figure out how they can keep the pace up. I can honestly say that my calfs are athletes on their very own.

I like the word "crapadilly" - suits us perfectly and isn't sensord unlike:

*beeb*, *beeb*, and go *beep* yourself you *beep* *beep* *beep* hole calfs. :)

Crapadillicly yours,

Jeff
 

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