Involuntary jerks

[Sara_A]

Hi, I have SLE, APS and inflammatory arthritis and lots of the things that come with the lupus, migraines etc.....

Anyway I wanted to ask if anyone else gets involuntary jerks mainly in the hands or arms I suppose. I have had them for quite a while but I've noticed that they have recently become a lot worse especially in the mornings. On waking I find it really hard to use my phone to txt etc as I'm constantly having jerks. And end up pressing all sorts of buttons 😂😂

Doing the food shopping online is funny, I end up with all sorts of things I didn't order!!

Just recently tho in the last few weeks I have really noticed it is worse and it continues for a good few hours into the day. I'm trying to read my kindle now at 10am but I'm struggling to hold it as I'm having jerks of my hands making it really difficult and quite annoying.

My rheumatologist has just previously said that I have 'involuntary jerks' and that's all that has been said. I think when I see him next I probably need to bring it up again which is in a few months.

I do also get them in my legs but not as bad, I'll just get a sudden jolt of my leg but that's it.

This with my hands had just got worse on a morning and is affecting holding things like my phone or kindle.

Interested to know if anyone else gets these

X

[Oshgosh]

I get the jerks as well.They can be anywhere on my body.

I think it’s a side effect of Myclophenate

My rheumatologist won’t discuss side effects with me.

So I keep taking the Myclophenate as Im on some sort of plateau,so don’t want to jeopardise it.

[JCZW]

Hi Sara_AI also get voluntary jerks in my legs at night, they can go on for anything from 1 hour to 4 hours at a time. First one leg then the other. I get very stressed as it stops me from sleeping. I mentioned it to my gp and she said that there was no quick fix for it. I also saw my lupus nurse last week and mentioned it to her but she really wasn't interested. I take hydroxychloroquine only.

[sarahsch in reply to JCZW]

JCZW,Just a thought but could your symptoms be restless leg syndrome. I had it briefly, drove me mad & interrupted sleeping. There are stretches you can do which sorted mine out. Look them up on the internet.

Sarah x

[Sara_A in reply to sarahsch]

Yes I was thinking that, I had some medication for restless legs yrs ago can't remember what it was called tho.

[JCZW in reply to sarahsch]

Hi sarahschThank you for your reply to my post.I will definitely have a look anything is worth a try they are driving me mad.

[sarahalice in reply to JCZW]

Hi, I have restless leg and I take amitriptyline for it, it helps relax the muscles. Might be worth mentioning to your gp.

[JCZW in reply to sarahalice]

Hi Sarah AliceThank you for your response, I was given amitriptyline about a year ago but it didn't agree with me.

[Barnclown]

Yes, this does complicate life🫤

My doctors call mine myclonic jerks…I’ve never asked which ‘type’ mine are, but this link goes some way to explaining the different types:

webmd.com/multiple-sclerosi...

🍀❤️🍀❤️ Coco

[Krazykat26]

Yes I get episodes of jerking too. Mine is more localised..it starts in the middle of my back on the left side n very quickly igoes into left shoulder and arm all the way down. I have had two bouts of shingles 10yrs apart in that exact same area so I'm just assuming that it's left over nerve stuff from that. It's very uncomfortable though n I take extra pain relief to calm it down (Tramadol)I mentioned it to a GP once n she said "that's weird" 😹 I hope u get some answers from your rheumy Sara n if u do will u report back to us please 💜🌈😽😽xx

[hollymch]

Hi Sara...I have Lupus. I was diagnosed in 2010 but for the last 6 years I experienced body jerks when I would go to bed but then it started happening anytime I was trying to relax...night and day. I just couldn't take it anymore so I did some research and decided to go to a neurologist and I'm so glad I did He diagnosed me with Periodic Limb Movement/while awake. He prescribed me clonazepam 5mg to take before going to bed and it worked! That first night I was amazed...no body jerks for the first time in 6 years. Every now and then I will jerk a couple of times but for the most part I do not. So I knew I needed to give you this info when I read your post. So please mention this to your rheumatologist or go see a neurologist. I hope you can use this info to get some relief

[Sara_A in reply to hollymch]

Hi, thanku, I don't get it on a night tho? Only in the mornings and during the day?

[MusicalFurbaby]

Hi Sara, sounds very trying for you! I haven’t had the jerks myself but a friend of mine with MS had them quite badly. I’m not saying it’s an MS thing, it could have been a side effect of the (many) meds he was taking. He saw his neurologist who managed to sort it out, so I recommend the same for you. A neuro should be able to work out if it’s medication-related, and if not, they should be able to give you medication options! Good luck!