Muscle spasms / twitches / jolts : Hey guys hope... - LUPUS UK

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Muscle spasms / twitches / jolts

stacieann1989 profile image
25 Replies

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

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stacieann1989 profile image
stacieann1989
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25 Replies
happytulip profile image
happytulip

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

stacieann1989 profile image
stacieann1989 in reply tohappytulip

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

Mandagee profile image
Mandagee

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.

stacieann1989 profile image
stacieann1989 in reply toMandagee

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

lupie46 profile image
lupie46

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

stacieann1989 profile image
stacieann1989 in reply tolupie46

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

lupie46 profile image
lupie46 in reply tostacieann1989

Hope you get on ok

GERY profile image
GERY

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

stacieann1989 profile image
stacieann1989 in reply toGERY

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

suzierwp330 profile image
suzierwp330

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 ???

stacieann1989 profile image
stacieann1989 in reply tosuzierwp330

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

jacclaire profile image
jacclaire

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

stacieann1989 profile image
stacieann1989 in reply tojacclaire

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

GERY profile image
GERY in reply tostacieann1989

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.

stacieann1989 profile image
stacieann1989 in reply toGERY

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

rafael profile image
rafael in reply tostacieann1989

I also worry my shaky and jerking is MS. Whilst in hospital I had tests fone I had an EEG,MRI and blood tests and they all came back normal. I have horrendous jerking so much so I had a fall I don’t know what else I can do I stay in bed when they are really bad like today. Anybody have ideas 🙏🏻

I I

julie1234 profile image
julie1234

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.

stacieann1989 profile image
stacieann1989 in reply tojulie1234

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

havering profile image
havering

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

happytulip profile image
happytulip

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

jacclaire profile image
jacclaire

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

Tay171 profile image
Tay171

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.

stacieann1989 profile image
stacieann1989 in reply toTay171

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.

Tay171 profile image
Tay171 in reply tostacieann1989

Probably my least favourite symptom.

minka profile image
minka

It's nurve system relaxing from being used and tense I would say I get it. Your pushing to walk stand etc.Then you rest and they are re locating back. What do u think

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