Flailing Limb Syndrom?

[Spaz61]

When in the ER with a particularly bad flare-up that left me too weak to hold my head up, I experienced a sort of whole-body spasm.  It was almost like a seizure, except that I was fully conscous and coherant.  The ER doctor said it was part of my FMS.  It's some sort of severe myoclonus that only occurs when I'm having a bad flare-up or over-tired.  During those times, I'll spasm as frequently as 10 times a minute, or I'll have spasms that last up to 30 seconds and come every 2-3 minutes. It also happens when I fully relax.  However, neither my rheumatologist or my neurologist has ever seen anything like it.  I have to take Clonapin in order to be still enough to fall asleep at night, but I'd really like to know what is happening to my body!  I'm working on tracking down the ER doctor, but until I find him, I'm just curious to know if this is something anyone else has experienced.

[Tellmboutit]

I can't count how many times I have been to the ER because of seizure like attacks. They happen out of the blue at times it can be severe and last up to 10min and other times just a few jerks now and again. my husband has learned not to be rushing me to the ER now.
I have been doing lot of research on FMS and was woundering if anyone has like a severe case of balance. Sometimes it is like a walking drunk.

[Spaz61]

I don't get the sweating and heart racing, so I'm not sure it's the same thing.  I'm sorry to hear you're stuck in a flare!  This may sound ridiculous, but I've found that laughing--I mean full-hearted belly laughing--is better than anything there is.  I'm very blessed to have friends who make me laugh, and I call on them often.  Also, I teach middle school kids, and that's a barrel of laughs in itself.  I've got a number of other things on hand to read or view on video that will make me laugh out loud.  It doesn't help the flailing, but it helps tremendously with the pain and fatigue.

[Ree4tu]

I have been to the ER with my legs spasming so bad I couldn't hardly walk, but not quite as severe as what you are describing. My heart was also racing and I was sweating. The ER gave me IV Ativan to stop the spasms and it also stopped the heart racing and sweating.  I get less severe spasms daily and they occur all throughout my body, but are severe enough to cause a lot of pain. I have been in a bad fibro flare-up for over a year now.  I believe my fibro flare-up began with a bad fall, but I had fibro before the fall.

Warmest Regards,

Ree4tu