Legs shaking at night : Anyone else get legs... - LUPUS UK


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Legs shaking at night

Buckley123 profile image

Anyone else get legs shaking at night my partner can feel it to infact he wakes me a few times I can sometimes feel it once I’ve woken.

My muscles still twitching and jolting xxx

19 Replies

Yes I have had this happening too for over a year now. It’s not just my legs - goes up into my chest as well. For me it’s fatigue, anxiety, flares, fighting an infection - a sort of variation on restless legs syndrome. It’s got worse now because I’m untreated for a rheumatic disease and my body is heading for meltdown so my mind goes with it. I think you are describing Restless Leg Syndrome though which two of my sons have quite classically.


Buckley123 profile image
Buckley123 in reply to

Hi twitchy thanks

Yes I’ve read this maybe I’m just not sure anymore of anything xxx

in reply to Buckley123

Me neither - just sure we both aren’t well. Xx

Buckley123 profile image
Buckley123 in reply to

I know twitchy I’m sure they are going to come to the conclusion of Sjögren or lupus xx

I had the same thing for a few weeks after having a stroke in October last year. I blamed it on my stroke but my neuro suggested it did not seem to fit the areas of my brain that were damaged and mentioned a neuropsychiatrist might be of help. I was resistant thinking but surely my physical stroke was to blame for my functioning and sensory issues post stroke but I was desperate to get better so I booked an appointment, met with the Doctor, had tons of cognitive tests and some more scans than I was diagnosed with post tramatic stress and started CBT mindfulness with acceptance and consistent therapy( ACT) and I sleep soundly now.

I read your profile and it seems you recently and it seems somewhat unexpectedly lost your young mother. What a horrible loss this is! My heart aches for you. This in addition to your autoimmune disease is so much trauma on your young body it could be causing your flares. Would you perhaps be interested in investigating therapies for post traumatic stress disorder or at least grief counseling? It does not cure our diseases but it is proven to help prevent new flares and help alleviate symptoms. This one treatment has improved my life more than the cardiologist, hemotologist, neurologist or immunologist's treatment have altogether.

Buckley123 profile image
Buckley123 in reply to Roarah

Hi Roarah for your kind reply.

Yes post traumatic stress has been mentioned to recently.

I lost my mum to ms after 8 years of caring for her I watched her go through some horrific things even since a child she was mentally poorly which I think worse then her ms. Anyway she died at 47 to respiratory failing I was with her and many tell me I was lucky to get to say goodbye.

Two months later my eye started to twitch and I see a optician who asked if there was ms in the family or a neurological condition. I referred to see a eye doctor who could see nothing long story short I paid for a mri scan which showed lesions of the brain and diagnosed with ms the same thing I watched my mum suffer with all my life.

Then all the other tests come back clear and bloods ect my ana negative but I have so many symptoms all other tests are negative just waiting for a mri again to see if there are any other brain changes.

I have a real hard time trusting or believing doctors as I’ve seen then make so many mistakes with my mum all the time.

I’m now being told migraines and all other symptoms are anxiety.

Although my blood work dose not match up I find I fit very well with lupus aps and Sjögren

I guess it’s a waiting game but I wanted to get a answer quickly so I can limit damage and hopefully not end up as my my mum xx

Roarah profile image
Roarah in reply to Buckley123

I firmly believe treating trauma has improved my disease. My positive ana and positive Antiphospholipid antibodies have decreased to negligible levels in the 4 months since I started treatment for ptsd. I think of my therapy as a supplemental treatment not a substitute for medicine. I do however truly think if I had treated my life long generalized anxiety earlier in my twenties I might have not aquired lupus and supsquently might have prevented ever having two strokes before I was 50.

Care takers of dementia patients are statistically more at risk of having dementia later themselves. This is believed to result from the stress of being a care taker rather than genic assosiations. Ptsd is often seen preceding lupus diagnosis so although causation is not yet proven many believe extreme levels of stress might be a cause rather than a result of autoimmune disease. Ptsd war veterans are treated for their ptsd in an atempt to avoid aquiring lupus and the results so far are very promising. Treating our bodies systemically for systemic disease should always include focusing on our mental health too. So while you wait for more answers speaking to a trauma specialist might offer some peace now in addition to possibly preventing further disease. Thinking of you. Xo

Buckley123 profile image
Buckley123 in reply to Roarah

Thanks I will look into it definitely xxx

KayHimm profile image
KayHimm in reply to Roarah

Yes, so important to address the emotional impact of physical illness. You have truly benefited from interventions!


Yes I get this too. I get it most of the time but it's much worse when I have a flare. It starts in my ankles, then affects the whole of my legs by bed time. It definitely affects my quality of sleep, which in turn makes me cranky.

I don't have any advice to share with you, I just wanted you to know you're not alone in this.

Thank for your reply it really dose help to know your not alone in all this as doctors seem to dismiss all this xx

I have had restless leg on and off through out my life, but is worse now with auto-immune issues. Also other muscle twitches in eyes and well, anywhere! And these are worst when there is more anxiety in me. I have a whirring sensation in my right leg a lot of the time - but it is not visible, that came with the auto-immune

If it is clearly restless leg, I have an epsom salt bath as magnesium is helpful, and it is absorbed by the skin better than taking as a supplement. My Ma uses a magnesium spray which I can't tolerate, the initial tingle is more than I can tolerate. Sea salt or epsom salt baths do help me in general.

So many symptoms seem random but I can see a pattern even if GP can't - I am lucky, they listen and are helpful, I am under GP not consultant, care.

I hope you can find your way through all this - sharing here does help. And there seems a lot of good advice above. x

Yeah I twitch and jolting all the time and it’s worse when I get stressed and anxious. I do use Epsom salt it definitely helps to know others have the same issue although I’m sorry to hear your unwell too xx

I have this too - try the Magnesium Oil spray from Holland and Barrett or my best remedy is good old Olbas Oil. I rub it in circular motions around my knees and the calf muscles - when it is bad I rub it on my feet too. Deep Freeze gel is excellent and doesn’t smell. Does the same job. Deep Freeze do pain plasters too which are lovely in hot weather, last 10 hours. Cut them in half and put on irritating area - give a couple of minutes - feel the muscles relax - lovely. I use them cut in quarters at the bottom of my neck when I am really tense. Good luck.

Buckley123 profile image
Buckley123 in reply to Cas70

Thanks for your reply I shall try the above 🙌🏻😊

My neck is really stiff at the bottom too xx

I get something similar, though for me it’s all over rather than just my legs. For me I have “no physical evidence of a cause”, but I do have anticardiolipin, which is a known trigger. It sounds a bit backwards, but I find getting up and walking or running about helps ease it off. Lying down or staying still too long makes it worse. For me it’s a little like an electric current backbuilding, I have to work it off or I start twitching and moving erratically.

Buckley123 profile image
Buckley123 in reply to TwitchyM

Same as me more when I rest although the twitches can be all day everyday worse when I stress or anxious sorry to hear you have the same thing xx

My wife gets restless legs frequently. She drinks a cup of chamomile tea with an oatmeal cookie. It seems to do the trick.

Buckley123 profile image
Buckley123 in reply to Krock1

Thanks I shall try the tea too x

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