Twitching muscles: Hi all you lovely people, Just... - LUPUS UK


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Twitching muscles

Nurseladybird profile image
21 Replies

Hi all you lovely people,

Just wondered if anyone has episodes of twitching/spasming muscles? I seem to get them most in my hands, feet, thighs, upper lip and eyelids, but they can appear anywhere. It can last from minutes to days. I’m getting more episodes of tingling/pins and needles than I used to in my hands and feet too.

When I mentioned the muscle spasms/twitches to a friend she looked aghast and said it was something associated with MS, so I thought I’d find out if anyone else on here gets the same.

Many thanks 💐

21 Replies
whisperit profile image

Hello ladybird,

The technical term is 'fasciculation', apparently. It's got a million possible causes, ranging from simple fatigue to rabies, so don't be too panicked by your friends alarm about MS. I've had it for about the last 2 years, and it's still not entirely clear why, but fatigue is certainly a major factor. It might also help to make sure you are getting enough magnesium in your diet (dark green leafy veg, nuts and pulses). Otherwise, it's a bit non-specific to know what is going on without a much more detailed history and testing x

Nurseladybird profile image
Nurseladybird in reply to whisperit

Thanks Whisperit, I just never know whether I need to make an appointment to tell the GP or not!

whisperit profile image
whisperit in reply to Nurseladybird

Yes, I know the feeling. I suppose the thing to do might be to clarify in your own mind how this symptom has changed since you last saw them, whether you can rule out an obvious everyday cause like not getting enough sleep lately and whether it's associated with any other symptoms or meds. After going through these sort of dilemmas so often, I am now a dedicated diary keeper, which helps no end when they ask questions like, 'How long has this been going on?' and helps me work out whether any changes in meds or whatever coincide with new symptoms). Bottom line, though - if it is worrying you, it's always better to check it out, don't you think? x

Nurseladybird profile image
Nurseladybird in reply to whisperit

Yes, you’re absolutely right. Thank you 💐

MandieR profile image

Hi, there. Have just read your post re twitching etc. I have had SLE, APLS for 15+ years now and experience eyelid twitching, cheek twitching, fingers. I have restless leg syndrome and recently started suffering from full and partial body tremors. Your friend is correct re MS patients suffering with similar things, usually dx as ataxia. I am now seeing a neuro psychiatrist to see if we can find out any more. I hope you manage to get some answers xx

Nurseladybird profile image
Nurseladybird in reply to MandieR

Thanks Mandie, I hope you get some answers soon x

I too have had fasciculstions for years - started in my eyes as a teenager and now I can get them anywhere - presently in my buttocks, right ankle and left eye. I also get resting tremors, small fibre neuropathy and weakness in my peripheries which can make it hard to stand, rise, push myself out of bed or relax. My balance issues are due to sensory ataxia I’m told.

I have Sjögren’s and Hashimoto’s and my new neurologist explained that at least some of of this is due to severe systemic fatigue.

Basically it takes energy to keep our nerves and muscles in check - so fatigue makes it much more difficult. Also I’m easily overwhelmed by noise, moving vehicles, patterned flooring and flashing lights.

She said this is a kind of sensory overload caused by the combination of sensory loss and severe fatigue. I know Sjögren’s and Lupus are sometimes misdiagnosed as MS so I wouldn’t be too anxious about your friend suggesting MS.

Many people have no idea about Sjögren’s and Lupus causing such similar issues. They have usually heard of MS whereas not so many have heard of Lupus, even less have heard of Sjögren’s

If I were you I’d speak to my GP and see if they think it’s worth you being referred to neurology for assessment. It’s important to get the cause worked out if possible.

Nurseladybird profile image
Nurseladybird in reply to

Thanks Twitchytoes, I’m reassured by that. If I’m honest, I kind of assume everything is ‘just Lupus’ and assume I have to learn to live with it. I’m always reluctant to tell my rheumatologist anything as she’s told me she’ll put me on an immune suppressant if my symptoms get worse or I develop new ones and that scares me - so far I’ve managed with hydroxychloroquine, paracetamol and ibuprofen (as I can’t take Naproxen), with short courses of steroids about twice a year. Probably need to put my big girl pants on and be honest.............

in reply to Nurseladybird

Well I’m in the opposite boat and have tried all the disease modifying drugs available to me, having initially been diagnosed with RA.

As my neuropathy worsened the doctors took me off several drugs, fearing that these might be the cause. But the neuropathy and fatigue continue to progress. I’m now off immunesuppression and told that these drugs aren’t causing these symptoms. But equally advised that no immunesuppression will help these neuro symptoms of Sjögren’s/ autoimmunity. However I would urge you to tell your rheum so that you can be properly tested and rule out MS and CNS Lupus. Sjögren’s is the rheumatic disease most closely associated with small fibre neuropathy but EMG, brain MRIs and other tests can determine the cause better and I think it’s important to exclude neuro inflammatory diseases etc.

Nurseladybird profile image
Nurseladybird in reply to

Thank you 💐

kingsnorth profile image

Hi i brought up the same subject a few months ago l have sjogrens and lupus. I have been getting twitching sometimes my eyes which drive me mad l am also having muscle spasms (charlie horses) mainly in my calves but l can get them anywhere in my body they are worse of a night my worst symptom is pins and needles in my feet going right up my legs. I thought l had MS as had/have all the symptoms including eye problems. GP referred me to neurologist but there is a 4 month waiting time so l paid to see one privately as well as MRI brain and C spine. All was clear of MS so im now thinking its lupus or sjogrens playing up even though my blood tests arnt showing inflammation. How old are you. Im 67. It is common to have MS as well as lupus especially if you are in your 20s or 30s so do get it checked out x

Nurseladybird profile image
Nurseladybird in reply to kingsnorth

I’m 51, Kingsnorth, but I’ve had vague, mild Lupus type symptoms since I was 21. It started off with what I thought at the time was a terrible bout of sunstroke, but it carried on for almost 3 years! I was finally diagnosed with Lupus almost 4 years ago after my joint pain got so bad I had to go to the GP. I assumed it was Rheumatoid Arthritis, as my dad had that, but it turned out to be Lupus. I think my dad probably had it too, to be honest, but just wasn’t properly diagnosed; his sister has Lupus too.

Thanks for taking the time to reply 💐

Lily77 profile image

Hi Nurseladybird, I am sorry to see that you are experiencing spasms, you are not alone. I have severe SLE. My muscles locked so rigid throughout my body that I said I was like the tin man from the Wizard of Oz. I was prescribed Baclofen which I understand is also prescribed for multiple sclerosis and disabled people. I take them twice a day. I have also experienced jerking and shaking and have found that symptoms can flit from one side or one part of the body and another. Very best regards, Lily

Nurseladybird profile image
Nurseladybird in reply to Lily77

Thanks Lily 💐

GERY profile image

Hi I have had lupus all my adult life & I am 75, the muscle spasm has always been in my left thigh & only at night but then it feels tender in the daytime. I would say don't worry about MS the spasms are all part of Lupus. Wishing you all the best

Nurseladybird profile image
Nurseladybird in reply to GERY

Thanks Gery 💐

Lee123Lee123 profile image

Did you ever figure anything out with this? I've had spasms/twitching for a lot of years too. My toes will all go up in spasm (all of them) and then rest, spasms in my eyelids, lips, arms, skull, neck...etc. I've never figured anything out (until recently) other than I had a bulge in my c6 and c7 that was putting pressure on my brain stem. I have narcolepsy and fibromyalgia, which with both conditions causes extreme fatigue and doesn't really allow my body time to release that chemical that our bodies release while we sleep to repair itself. I suppose sleep issues are big for you too. But I don't want to just assume. I'm not diabetic, etc.

Nurseladybird profile image
Nurseladybird in reply to Lee123Lee123

Hi Lee123,

I’ve recently been having spasms of the muscles in my ears, which gives a random/rhythmical banging sound but not in time with my pulse. It’s blooming irritating!

I’ve got an appointment with the rheumy on 10th Dec, so will ask her about this then, as I’ve also started getting ‘electrical shocks’ in the muscles in my thighs, which makes me think it’s nerve related.

I’m very luck to not have fibro, but I know how debilitating that can be. But I DO have sleep issues and am permanently fatigued, although I can’t imagine how frustrating narcolepsy must be 😢

Lee123Lee123 profile image
Lee123Lee123 in reply to Nurseladybird

I also get inside the ear spams. I know its not the heartbeat. If it was, I would be in a serious medical The spasm sound is too rapid and not at all the same. I'm not glad you have these but I feel less alone to hear that someone else also has this. I have asked doctors over the years, and every single time they look at me like I'm insane. I mean thats prob. the case but its beside the your ear spasms like rapid fire succession or different beats, if that makes any sense? Yeah, the narcolepsy could be frustrating if I let it... its like being sleep deprieved by a couple nights of sleep. Its kind of my normal though and I think I have a good attitude about it. What does bother me is the complete and utter lack of understanding/compassion in my relationships about how narcolepsy works/affects my life. So I don't really even address it with anybody anymore in my daily interactions in the world because they just don't get it.

The nerves in our body can do strange things, thats for sure. I hope your appointment goes well on the 10th. I've been thinking about going back to the rheum. to get a complete check up. Over the years, they've found immune def. and oddities but I have never had any answers for those things. A lot of times its easier to just ignore and deal with status quo with the best positive attitude. Anyways, let me know, if you would, what your rheum. says. Thank you for the compassion you've shown me. :)

Sarahd1609 profile image

I never used to get twitching and spasms but now I do. The worst affected area for me are my legs where since coming off morphine patches I’ve had really bad issues, as if someone has wrapped electrified barbed wire around my waist and down. I’ve been on baclofen 10mg 3 times a day for 6 years and ropinirole 1mg For 6 months and that isn’t even stopping it xx

Nurseladybird profile image
Nurseladybird in reply to Sarahd1609

I’m sorry the meds aren’t helping you Sarah 😢

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