twitches/ tremors: does anyone have twitches... - LUPUS UK


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twitches/ tremors

scoobydoo1 profile image
16 Replies

does anyone have twitches/ spasms in there extremities?

I had little muscle spasms previously which didn't bother me at all really, then developed full body feeling of everything "shaking" for want of a better word.

sat talking to my mum and brother just and had both legs held out to show off the Reynaud's in my feet and my left leg very visibly tremor, does anyone else have this or am I just weird ? :P polite answers only thank you.... Mark

16 Replies
MandieR profile image

Hi Mark, YES I have had internal and external tremors, the most annoying ones were in my legs....they would both go into overdrive, usually when I sat or laid down to relax. It was extremely uncomfortable and got so bad that I went to my GP.

She diagnosed restless leg syndrome, its where the nerve endings have some damage and make you twitch involuntarily. She prescribed gabapentin and it has stopped it completely. I would recommend going to your gp and asking advice

Good Luck xx

kazp profile image
kazp in reply to MandieR

Will look into this, Ive had MRI etc and nothing to report but its so frustrating when i do things ie hold my tablets to take them and there they go off into mid air! And when my ankle is really off on one it really hurst and aches so much

loopy-lou profile image

I also went through a few months of continually shaking - it felt like internal and external tremors, This was often went I went to bed and would last for quite a while each time. This happened a couple of years ago and then stopped. I didn't go to the GP at the time. Probably worth going to mention though. Hope you get it sorted out. Good Luck.

Jo883 profile image

Hi Mark - yes me too although my diagnosis is not definitive yet, I get them a lot in my legs especially my calves and knee area, but also eye and forearm where u can see muscle moving, seem to be worse when I rest. However, they've calmed down since I've been on Gabbapentin. Also I've been having neuro problems and I get body tremors, kinda like a side to side head n body tremor when this happens my legs are prone to go. I'm such a mess of symptoms at the moment that I haven't indivualised that yet. But the gabbapentin seems to of helped! Best wishes Jo

Nanuuk profile image

I was just about to ask this question!! My hands shake - like in a parkinsons patient & my legs jerk & twitch - I recently brought it to my gps attention but 'in someone my age gp doubts it anything to worry about.' (39) but the anticoag team said internal shivering was due to warfarin therapy, it makes you feel cold (ya dont say!) literally to the core & shivering internally is commonly reported. So I got an answer to part of my question!

brave profile image

Hi........just to let you know this is one of my biggest symptoms ;((and now I also get electric shock /zapps that make my limbs jump ,doc make nothing of this .

Yep...fasciculations....twitches, shocks and twitches that look like bugs wriggling down my arm under the skin. Have a look at of the ladies on here had it and I think it might be a milder cns type symptom of lupus. Mine pretty much went away after a few years.


DaleDiva profile image

I have a tremor that is worse when I am stressed,mainly my hands, but when really tired my eyebrows and ears take on a life all of there own! I always thought I was just a fidgit but these twitches were what led the Neuro to a diagnosis of CNS Lupus

trueman profile image

Hi you may have noticed me chatting away about PNH Perhipheral Nerve Hyperexcitability. Which is twitching that it more than often all over the body, random and numerous. And very very annoying. I have it. Was told it could be linked to autoimmune disorders and now a year later since diagnosis I am on the very route of discovering more weird and worrying symptoms. So I ended up here. I can have these twitches in there hundreds really through a whole day. My body is firing off them left right and centre.. A lot in calves, arms and face but everywhere. Since visiting this great site I have learned more about CNS Lupus and seeing a neurologist again very soon... so you are not weird! It is one of the most irritating things and often people don't see the twitches so trying to explain how it affects you is not that easy! You can look absolutely fine but feel like a ping pong ball all over..

DaleDiva profile image

That is a brilliant analogy, the ping pong ball!!

trueman profile image
trueman in reply to DaleDiva

Hi DaleDiva. Just noticed that you mentioned it was your twitches that led to your CNS Lupus diagnosis. I have a load of questions if you dont mind me sending you a message..

cloggy73 profile image

Yes, this and neuropathy and seizures were the first symptoms of the SLE many years ago, drives me nuts. I take baclofen which works a treat. I hear gabepentin does the job as well, I didn't get on with that drug though. Hope it settles soon Mark.


lillyanne profile image

My illness really started with a tremor in my right arm, along with pain. The Doc told me it was stress!! Three years later and have been diagnosed with sle plus fibromyalgia. Still have a nasty tremor in my right hand and arm but the doc has now said I have ulnar nerve entrapment. I can't hold a pen or carry anything with my right arm or use anything small such as a knife because I have no grip. My little finger is now bent double too and the doc says that's from the damaged nerve that runs from my neck to my fingers. Now I'm not sure if its the lupus that has caused this or something completely separate. xx

DaleDiva profile image

Trueman, be happy to help... PM me x

kazp profile image

Ive got these on my left side only food and arm/hand, been to neuro add had MRI but nothing shows up. can be very annoying]g, glasses flying out of hand and tablets but over the years ive got to see the funny side

lupobob profile image
lupobob in reply to kazp

yes i have the same thing but in my case doc says you bood test are aall negative maybe you have porphyria and it turns out we have too much royal blood and the dutch family that brought porphyia it can explain some of the cns lupus and porphria go hand in hand

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