TWITCHES

Hi,

As soon as I saw twitches I opened your post. Yes, yes, yes, they are referred to as fasciculations and I mainly have them in my calves BUT it is not unusual for them to be in other places. They come and go and the skin literally raises. I have seen 2 leading neurologists as they were driving me nuts. Apparently it is a part of fibro that affects the nervous system. Both the muscular and nervous systems are affected with this disorder. Now mine are benign. If you research BFS, benign fasciculation syndrome there is a lot on it. Cramping can also go with it and has in my calves. The malic acid, magnesium regimen I got from our forum has greatly helped my cramping. I still have some but nothing like I was. Do you cramp??

I noticed you list hypotension and hypertension in your bio, that's unusual isn't it?

Hope this helped, Patsie

Hello Patsie...

 

First... no I don't get the cramping too often,sometimes my big toe likes to cramp.. hard to explain... I guess it's in my tendon really and just makes mybig toe bend down where I can hardly even straighten it... VERY painful!! But that hasn't happened much either lately. 

 

As for my Hypo and hyper tension... yeah I boggle them, all!!! It is VERY hard to treat but my dr had got my pulse to about 100 sitting still and THAT has been WONDERFUL for me.  I was at (on average) about 135 at resting.  He put me on a very low dose beta blocker and a low dose xanax and the combo has helped.  I have a friend that is a nurse and when I call asking about things she just laughs... she told me just yesterday that I am a very abnormal patient and that she CANNOT help me, because NO ONE has the answers as to why my body does what it does!!!! She has been there thru my whole 8 1/2yr long journey trying to find out why my body does what it does.  All at once I got everything listed below... except my fibro cystic breast disease which came about a year later. 

I get the twitches and yes they do kind of sneak up on you.  I recently realized that taking the malic acid/magnesium supplements have helped with the twitches and my speech.  I was taking the supplements for about two months and wasn't sure if they were working because my energy level didn't really change and the pain was about the same but the twitching and my speech improved a lot.  So, I stopped taking the supplements and the twitches came back and I started having trouble speaking again.  I think I have been off of the supplements for about two weeks now and was just telling my husband that I will be ordering another bottle of the supplements.  The twitches are embarrassing but managable but my speech is just crawl under the table embarrassing  .

Rach,

I get lost when I'm speaking also and typing, can't remember words or how to spell but the thing that really gets me is when I'm trying to talk to someone and it's like my mouth is working faster than my brain can think.  I start to stutter and say the wrong words.  I don't even know why I say some of the things I do, I'm not thinking about them.  An example would be me telling my kids that the milk is in the shower.  Then when they look at me funny, I say "What", I don't even remember saying it.  I have noticed a big improvement in being able to find my words and they come to me quick enough that I don't stutter or slur my words.  I also don't forget what I am doing quite as much.  I still get confused but it is so much better. 

I have been trying all day to order more supplements but for some reason my computer is not cooperating, it's working really slow, I think it needs some malic acid/magnesium pills.