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This is getting really annoying!

PostPosted: June 23rd, 2013, 9:35 am
by wimpy39jen
Hi all! Hope you are all doing well. I am hoping someone, anyone who has experienced the ratcheting muscle shake tremors can give me some advice. I am to the point recently where this is really affecting my daily life and really becoming annoying and really scary to say the least. I have been under a lot of stress lately with my job so I am wondering if that is why I have been getting worse. Probably the case. Anyway, the muscle ratcheting is horrible, when I move my arms and look in the mirror not only can I feel the ratchet step type of movement, but I can clearly see it! The muscle is like shaking. The finger tremors are really bad at times so bad that they affect my handwriting now. I can feel my whole body sometimes like there is a motor in it, like a very fast fine tremor of sorts. The twitching is still there of course and the almost cramp type of claw feeling in my toes and the moving jerky body parts moving on their own. My movements just do not feel smooth at all. Sometimes I feel like for example my arm is a rubber band and it is just popped and it feels kinda like relaxed and weak for a second or two so wondering if this is extreme muscle tension perhaps. Anyway, I have been taking all of the vitamins, trying to stay away from caffeine, do not really exercise as it makes me worse, I do drink a gatorade a day which does help with the twitching, using magnesium oil and trying to avoid the heat as it really makes my tremors worse it seems. Is there anything else I can do to make this condition bearable at least? Sometimes now it even seems like my voice quivers at times while I am speaking. I am so annoyed by all of these symptoms and just keep telling myself it is nothing nasty, but seeing and feeling the muscles shake like this is scaring me again. Also, my tremors seem to get worse if I do not eat on a regular basis and almost like I need to keep my blood sugar up perhaps even though I have been tested for Diabetes recently and do not have it. I have been hyperventilating a lot lately too so perhaps this is also making my symptoms worse.

Re: This is getting really annoying!

PostPosted: June 23rd, 2013, 11:53 am
by Spider
Hi Wimpey

Sounds like you are having a bad time of it .

I don't have the symptoms of shakes but have the twitches & aches .
So I can't help you sorry but
I am sure some one will be along shortly to help you out with it.

Try not to worry .

All the best

Spider

Re: This is getting really annoying!

PostPosted: June 23rd, 2013, 1:29 pm
by wimpy39jen
Thanks Spider :D

Re: This is getting really annoying!

PostPosted: June 23rd, 2013, 1:53 pm
by chrissi
I can totally relate to that. My tremors and ratcheting were so bad I did not even trust my legs because they were so shaky, and whenever I lifted something I started to shake clearly visible to anyone. My shaking was so bad hat my hubby felt our bed shake at night. My finger tremors were terrible, I had to stop working for quite a while ( I am self employed) because this destroyed my fine motor skills to a point I could not lift tiny objects like pearls or buttons. Not to mention my handwriting which was just not readable. What can I say? I am fine today. I have to admit that some tendency to tremor is a last reminder of my BFS ( I still twitch a bit too but have done that before BFS too), I am a bit shaky when waking up and too much caffeine or stress still makes my fingers dance and wiggle to the sides. But I feel good, no more stiffness or ratcheting, and my fin motor skills are back. I find that my lifestyle has biggest effect on my tremors, my triggers are lack of sleep, too much caffeine, too much sugar and neon lights.

Re: This is getting really annoying!

PostPosted: June 23rd, 2013, 6:56 pm
by wimpy39jen
Thanks Chrissi. I really hope I can get to the point you are at someday. This is definitely getting worse for me, but I do know I have been under a lot of stress recently. The vibrating shaking tremors are really interfering with my everyday life as I am sure it did yours also. I wish there was a magic pill to pop to make this all go away! :(

Re: This is getting really annoying!

PostPosted: June 24th, 2013, 12:46 am
by chrissi
Unfortunately no wonder pill. For the tremors you might try staying away from caffein and stimulants like sugar (esp. chocolate) and extreme heat like sauna and hot tubs. On the other hand you should see what this really does for you, and if you want to change this. I always say that changing lifestyle for BFS is a very personal choice. If you feel mentally worse not doing anything and this only helps a but with your BFS, it might not be worth it. I could never stay away from coffee and hardly from chocolate and my BFS tremors got MUCH better with time in spite of this. Especially for the people with tremors, it is definately worth having a look at your breathing!! I know that there's a very strong link between my carbon dioxide level and my tremors because I had the chance to have it measured over a pretty long period of time. I guess that chronic hyperventilation is a very big part of the whole BFS cycle , that (if not pre-existing) gets started after the stress of googling ALS because this is usually the point where things start to go crazy.Unfortulately this is not easy to control, but there are some remedies on the Internet.

Re: This is getting really annoying!

PostPosted: June 24th, 2013, 7:27 am
by wimpy39jen
I do hyperventilate probably almost every day to some mild degree, I sometimes am not even aware I am doing it and I have been seeing a neuro pysch who does biofeedback, but I have yet to see a big improvement in my breathing. I have already months ago done the google thing and am not going back to that as it ruined a couple good months of my life. I am willing to try anything and will change anything in my life to make my symptoms better so thank you for the tips and I will definitely follow through with them :D I never usually go in hot tubs or hot baths, but I know it is in the triple digits here and when I go out into the heat I am so much worse! The breathing is really so hard to work on for me, the more I practice and try to breathe right it seems the worse I get from concentrating too much on the breathing. The tremors are so bothersome, worst part about this whole thing I think plus that body shake vibrate thing. I really want to work my way back into exercise, I have a few shaking episodes after exercise and it scared me away, but I think it would really help me at least my anxiety. Thanks again :D I value your opinion and appreciate your advice!

Re:stressful bfs

PostPosted: June 25th, 2013, 9:41 pm
by Karenmg
My left bicep twitches on and off all day. My legs have been twitching for 35 years. The twitching in my upper body just began a few months ago. I had an EMG and neuro said it was normal but it showed pinched nerve on c7. As with everyone I think the stress of thinking its some dread neuro disease is what makes the twitching worse. I workout do yoga weekly and try to watch diet. I'm 61 and actually feel good. Oh yea I have tinnitus which have been dealing with since 09. I recently started seeing a hypnotherapist. It's helping the tinnitus tremendously. I'm hoping it can help with the bfs. The only med i take is xanax and that is for the stress of tinnitus.

Stress I believe is the cause of disease. Worry makes it so much worse. Benign anything is better than not. We just have to believe it s benign and try to ignore the twitches and focus on positive things not our symptoms nonstop. I say this while I'm watching my arm twitch.