Hi everyone : Well I was feeling pretty dam good... - LUPUS UK

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Hi everyone

Bronn profile image
9 Replies

Well I was feeling pretty dam good until yesterday. Went to bed at 6.30pm with a headache that I'd had all day. Slept through, waking for meds at midnight until 10am this morning, and was asleep again by 11am. I've never felt so rough, headache still, back, right elbow left hip hurts the worse. The rest of the body seems to be joining in with the pain as today goes on 🙄 My hubby says he's getting used to this just being me. He's always tried to help me feel a little better. He's currently giving my bedroom an overhaul. He usually hates decorating but is going all out. I'm currently sleeping in the living room but when my bedroom is finished I will post pics.

I have a question of something different though.... The last 6 months probably longer I've been getting involuntary body jerks. They're getting worse. I what looked like threw a my cup of coffee all over my lap. They used to happen in just 1 place for a while before happening elsewhere. Now they'll happen in multiple places of my body at once. They vary in intensity and frequency ☹️ If anyone can help me stop this I'd be very grateful 😀

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Bronn
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9 Replies
svfarmer profile image
svfarmer

Hi I can’t offer any advice but just wanted to say I’m so sorry your feeling so rough at the moment , rest is good - your body is needing it - I sleep at least 12 hours every night as always tired 💤

I’m sure your bedroom will look lovely and I’m sure your husband is feeling good about making it nice for you xx

Muff20 profile image
Muff20

Sorry your not feeling good, you need your rest. A lovely newly decorated bedroom will be great. I have involuntary jerks in my hands/arms. No idea what it is. Tricky holding a cup of tea and can't trust myself typing on online sites, click on stuff I don't mean to.😂

Spanielmadlady profile image
Spanielmadlady

Hi.you could be experiencing myoclonic jerks which can be a symptom of lupus.have you mentioned them to your gp or rheumatologist? If not it might be worth doing so.hope you feel brighter soon x

Maddymay65 profile image
Maddymay65

Hi Bronn,

Sorry to hear you are feeling so rough. I agree rest is the best medicine. And when not resting a little fresh air, sitting outside even for 20 mins. Headaches I think are normally a sign /warning symptom you need to rest. Do you use an eyepatch, darkened room, maybe try lavender spray on pillow to relax body? I feel for you, hope you feel better soon and enjoy your newly decorated room 😊

Madeline

Bronn profile image
Bronn in reply toMaddymay65

💐

diane1428 profile image
diane1428

I’ve had this on and off since I was 18. Now 65. I am on pregablin which has controlled it the last 5 years. Also helps with the headaches. I also have aps and don’t know which one causes it but either way difficult to live with

Good luck

Bronn profile image
Bronn in reply todiane1428

💐

Willow1414 profile image
Willow1414

Hi Bronn

I also experience this . Usually when I’m laying down , I have irritable leg syndrome , I though it might be related to to this .

Are you on anti depressants ? This can be a side effect . Funny thing is while typing this my hand holding my phone flips up , this also happens with my ankles , involuntary movements . I too would like an answer to these strange movements .

I am going to mention this at my next visit .

I’ve always had irritable legs has long has I can remember , but the ankle and wrist flips I’ve had for about a year .

I’ve a feeling it might be the meds .

❤️🦋

Bronn profile image
Bronn in reply toWillow1414

💐

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