LUPUS UK
21,628 members17,151 posts

Muscle spasms / twitches / jolts

Hey guys hope you're all well. I'm posting today to try and figure out a strange symptom I'm getting. Okay so it mainly happens at night when I'm lying in bed and resting, but lately it's been happening in the day time also when I'm sitting down etc. It's hard to explain, but it's like, I'll be lying down and I'll get a twitch in my foot or leg or ancle that literally makes my leg jolt, it has also been happening in my arms fingers, neck, my eyelids, and I even feel it in my chest and tummy which makes my whole body jolt. it's happening more frequent now, and I've also been experiencing headaches on a daily basis and sore joints, but I get joint pain pretty much ever day, it's the muscle twitches / jolts or spasms, I'm not sure how to describe it really, that I'm worried about, they're mostly not painful, they just make whatever part of my body it happens in jolt. Which is uncomfortable and irritating, it's like my limbs have a mind of their own and just fly off in random directions lol ..anyone else experienced this? I'm seeing a specialist in a few weeks so I'll mention it then. Anyway, hope everyone is doing well x

23 Replies
oldestnewest

I get this and it always seems to be when I am pre-flare, over tired or when my lupus is more active. I have had some level of damage to my nervous system as a result of lupus and I suspect this is the cause. It happens when I am in bed, trying to drift off to sleep the suddenly, bamb, my leg jolts like I'm kicking someone. It also happens in my arms, hands and feet. It's not painful but can be quite uncomfortable, especially if you are just nodding off. Recently my lupus went into a minor period of remission and it stopped happening. Now I am flaring again and I'm practically doing the can-can (badly)!

I hope that info helps x

2 likes
Reply

Thanks for teplying. I am also doing the can can , or karate :) it's very irritating and scary at times. Hopefully ill get an answer off my rehumy x take care

1 like
Reply

Yep get this slot.hate wen I have cup of tea and I get a twitch/jolt and then I'm wearing it or it's all over floor /seats etc. And also wen you r relaxing / nodding off then you have massive jolt .gives me a fright .can'ttell u what it is or anything to do to relieve symptom.sorry not much help but I can sympathize.

2 likes
Reply

Yes that's the worst. I've also noticed that I've been quite shakey as well and get pins and needles and a weird tickling sensation in my hands and feet. Hope I get some sort of answer off rehumy. The huge ones are scary i get them when I'm wide awake too :( thanks for the reply and take care

1 like
Reply

I get small electrical twitching all around my body. I just assume it's yet another lupus symptom.

2 likes
Reply

I get the little twitche, they don't bother me so much, it's the ones that actually cause a part of my body to jerk , like last night I got a huge one in my chest and my chest literally jerked up and down , it's quite scary. I assume it's to do with lupus but I guess I'll find out when I see my rehumy. Take care

1 like
Reply

Hope you get on ok

1 like
Reply

THANK YOU YOU HAVE JUST SOLVED MY QUERY. MY THIGH MUSCLE JUMPS AT NIGHT BUT I NEVER THOUGHT IT WAS DUE LUPUS. AS YOU SAY IT IS LIKE A JOLT WHICH WAKES YOU UP AND THEN CONTINUES TO TWITCH. I THOUGHT IT WAS MUSCLE CRAMPS. SO OH WELL THAT IS ANOTHER SYMPTOM TO PUT UP WITH HA HA

2 likes
Reply

Hi, sorry that you experience this too, it's a pain in the butt! Last night I was jolting left right and centre 😑

1 like
Reply

I get this also ,very annoying when trying to rest .Ithought it was related to my Epilepsy .Had muscle and nerve conduction test also 5days with EEG monitor on head .It showed it was myoclonic activity on rest .Wasnt related to Epilepsy so it's to do with nerves system ,or circulation due to raynauds and Lupus symptoms I was told ???

2 likes
Reply

That's what I'm worried about , that it may be lupus attacking the nervous system. Fingers crossed it's not tbat, and sorry to hear you have experienced the same thibf, it's quite scary when you don't know what going on

2 likes
Reply

Wen u do see specialist can u come back n tell me what they said. I get exactly the same. I put it down to if I have a lot of pain killers e.g. Tramadol. Oh the huffing my dog has done wen he is curled up with me n I do it

3 likes
Reply

Yes I will deffinetly let you know what my rehumy says. I do take a lot of pain meds, mostly cocodamol and ibroprofen and amitriptyline. I stopped taking Tramadol because it would keep me awake all night for some reason. I'm seeing specialist on the 17th so will post that day when I get back

1 like
Reply

the leg jumping & twitching is not due to medication the only med I take is a steroid gel to stop itching on scalp and body.

2 likes
Reply

I worry about MS, too. I match a lot if symptoms but, I try my best not to google stuff lol I'm at the hospital next Tuesday so will post again. Hopefully ill get somewhere with them this time and not feel shoved off

1 like
Reply

Hi yes I also get this I was diagnosed with periodic limb movement disorder when I was at a sleep centre, it was so bad I jolted 15 times every minute, I was prescribed clonaspan which helps a little.

1 like
Reply

Thanks for the reply, so sorry about the diagnosis but at least you know what it is and have something to help a little. It's scary when you have no idea what's hapoebing. Take care

1 like
Reply

My daughter has similar problems with shakes and intense muscle spasm. She too refers to her body having a mind of its own. You are not alone

1 like
Reply

For my part, I have a damaged autonomic nervous system as a result of the lupus. I was told that it why I get theses jolts. They do seem to come and go though. I've gone for months without them and now that I am in a flare it's all kicking off again, literally! Please try not to worry ( easier said than done) as it may only make them worse x

2 likes
Reply

Ty for your reply lookin forward to c what hey say then I may b able to go get help too

Reply

They come and go for me . I wants weeks without them and now a week before uni exams are back shaky , twitching everywhere . I have health anxiety and pretty bad anxiety in general.stress and anxiety can create symptoms like this as well.

Reply

Sorry you suffer from this. I know mine aren't to do with anxiety because it's constant, and I can feel them in my head and face and chest , ugh. Kept me awake for hours last night.

1 like
Reply

Probably my least favourite symptom.

1 like
Reply

You may also like...