Page 1 of 1

Involuntary movements

PostPosted: June 19th, 2012, 3:31 am
by Issi
Being almost 6 months in, I am sometimes experiencing involuntary movements of limbs and even head during the day. It seems my body is in “alarm mode” meaning when I am touched unexpectedly, my limbs sometimes move in a jerky manner. My right leg trembles after exercise and sometimes at rest. When holding something upright with my left hand I feel a high-frequency tremor. I also used to know the ratcheting feeling when bending down. Still feel soreness in neck, shoulders and front of throat. Jaw and tongue muscles seem to be tensed which makes speaking harder (guess this might be TMJ) Can anybody relate?

Ines

Re: Involuntary movements

PostPosted: June 19th, 2012, 3:51 am
by chrissi
Lol, me of course, but you aleady knew I guess. All if our symptoms sound very familiar to me. Sorry for that, because I know it totally sucks.

Re: Involuntary movements

PostPosted: June 19th, 2012, 6:06 am
by Lasszucken
My legs sometims do small movements when I sit, like i've been scared, but its only a few centimetres.
Never thought about it nor do I know if i had this before, it happens a few times a day.
Its like this myoclonic jerks when falling asleep.

Re: Involuntary movements

PostPosted: June 19th, 2012, 7:00 am
by KatieMG
Yep! Have all of that! My legs and neck will jerk at random times. I also am clenching my jaw a lot so I feel like I can't open my mouth very wide, my neck muscles are tense, etc.

Re: Involuntary movements

PostPosted: June 19th, 2012, 8:26 am
by andrewbfs
Add me to the list for this one. Primarily when lying down or sitting with muscles relaxed. Especially in bed. It's not the classic "sleep jerk" because it happens even when I'm wide awake, but it's a similar sensation. Mostly happens in my thighs, shoulders and neck. But also sometimes wrists, ankles, fingers.

Also I experience the ratcheting when bending down, walking down stairs, putting on pants, etc. Sometimes in my neck, too.

Ironically, these have started up during a time where my fasiculations have diminished. "It's always something," I guess....

Re: Involuntary movements

PostPosted: June 19th, 2012, 8:31 am
by johnnythejet
Yes, I can relate to nearly all those symptoms. :)

Re: Involuntary movements

PostPosted: June 19th, 2012, 9:45 am
by Jujulia
Hi Issi,

What a coincidence, I was thinking about you lately because of our weird symptoms in common, so I'm glad you posted today! First of all, YES, sometimes I do experience involuntary movements like the ones you describe, especially in my face, which is obviously quite annoying (to say the least). Sometimes it happens when I'm scared or in weird situations... my mouth will move in a weird way suddenly, I don't know how to explain it... This stuff has happened to me since the beginning of all this (bfs onset).. I just hope it doesn't fall into the category of ''abnormal reflex'' or something like that.

As for the neck/tongue tension, I'm still having this problem too (actually, since last time we've talked about it, I have had no break). Some days, the whole shoulder/neck/chest area will be tense or sore, but the tongue and the throat are the worst. You're going to think I'm crazy, but sometimes it's so unbearable that I add cayenne on purpose to my drinks/food to create a ''diversion'' so I momentarily don't feel this really uncomfortable feeling. It's probably the worst symptom I have ever had these last two years... I just want it to stop.

J.

Re: Involuntary movements

PostPosted: June 19th, 2012, 11:49 am
by plainslady
Me, me, me!!! I get these things. The times I notice the jumpiness/whole body part jerking is when I'm driving, writing, or doing other things that require concentration. Any little startle during these times will result in the sudden appearance of my hidden ninja skills. Sometimes when I am worked up just a touch to my knees with my OWN hand will cause my leg to kick up. It takes very little to set my reflexes into hyper mode.

I also have the neck, jaw and throat issues. Mine is related to TMJ which is just a fancy way to say I take all my daily stress and anxiety out on my teeth and jaw at night. I am a terrible grinder/clincher and pay for it with chronic stiffness and soreness from my neck up. Usually it is the reason I get headaches as well, very rarely do I get a headache that isn't tension related.

As for the shakiness, I experience that as well. When I first started doing my Pilates workout I would shake and ratchet like crazy, but as my strength has grown I notice it less and less, until I overdo it of course.

Frances

Re: Involuntary movements

PostPosted: March 2nd, 2013, 7:51 am
by francky
good morning;
excuse me for my bad English I am a french man
I would like to know how do you describe your involuntary movementsl?
I have this since a few days,it happens a few times a day.
for me it's an only movement like a small reflex!
when it arrives , limb moves of few centimetres!

did you know that?

thanks

Re: Involuntary movements

PostPosted: March 2nd, 2013, 8:17 am
by chrissi
Yes francky that is exactly it, a little jerking limb movement

Re: Involuntary movements

PostPosted: March 2nd, 2013, 10:15 am
by francky
chrissi wrote:Yes francky that is exactly it, a little jerking limb movement

thank you chrissi! i read a lot of your post ! and i find your very good with newbies like me who are afraid of all these symptoms

Re: Involuntary movements

PostPosted: March 3rd, 2013, 3:13 am
by chrissi
You are welcome francky. Those involuntary movements are part of BFS, not of ALS or MS or whatever, so maybe you can make a fear shortcut and have the instant-insight that...you are totally OK, your body is a bit messed up right now, that it will not kill you, that there are some other symptoms that might come in future times but still will not mean anything bad :) This could save you a lot of time because spring and summer is coming and it is always a pity to waste a great summer with unnecessary fear.

Re: Involuntary movements

PostPosted: March 3rd, 2013, 4:08 am
by francky
thank you very much chrissi! i hate these movements, this symptom is the one who scared me a lot! what you say help me so much' ! Thanks!!!!!