I’m having what feels like vibrations

[CindersSue]

Hi everyone, I’m just wondering if anyone else gets vibrations in their feet and legs sometimes in the upper body. Is this inflammation? I don’t get it all the time but it’s quite worrying. I feel like I need L plates on me as I was diagnosed in Sept and I’m trying to find out if this is a side effect. I had to stop my hydroxychloroquine 4 weeks ago as I ended up at urgent care for the pains in my stomach. I’ve informed the specialist nurse who is on Rheumatology that I’ve stopped my med but she said she doesn’t know much about Lupus but would inform Rheumy who might bring my next appt forward. I haven’t heard anything so I’m taking one ibuprofen approx every 3 days as I believe it helps inflammation but I know it’s not good for the kidneys. Any suggestions would be great.

[Spotty-ewe]

HI Cinders,

I had a lot of trouble with Bristol Myers brand of Hydroxychloroquine ending up with needing an Endoscopy on 2 occasions which revealed inflammation of the stomach but no apparent cause. However since swopping to Zentiva brand of Hydroxy my gastric problems have settled and my GP has written on my prescriptions “Zentiva only”. I don’t ever take Ibuprofen as I believe it is bad for Lupus but on the amount you are taking hopefully you should be ok. I hope you get your appt with Rheumy soon as they’d be best to recommend which anti-inflammatory you should take . Hoping our symptoms settle very soon. Take care. Xx

[Paprika60]

Hi, I have the same issue but don't have an answer (sorry!) as why a sense of vibration comes and goes on the lower region of one's body. I am hoping someone may come up with an answer in this forum.

I am guessing it is due to the nerve system. I have moderate neuropathy on my feet and sometimes in the lower part of the legs and also my fingers. I am guessing it may be part of it. I do stretching whenever and try to massage it away. It helps.

Definately request Zentiva brand and make sure you insist with your pharmacist. I am in west London and my pharmacist initially refused sourcing it for me saying his main distributing centre didn't stock it. It is not easy to get. I had to ring the company Zentiva itself and found out where the distributor was and ended up doing all the sourcing work for my lazy pharmacist. But he now carries it regularly for me. And I have less stomach issue. Hope you get through to your Rheumy to report the incident and follow up on Hydroxy. Very important and no good to be on Ibuprofen as it is not designed for Lupus. Good luck!

[Choccy8]

I get the vibration feeling in my lower legs, particularly noticeable when lying in bed. With me, I think it's a stress thing - I will notice it after a steroid reduction or when I've been doing too much. I imagine it's some sort of nervous system disregulation.

[FredaN]

I do, but I think I've assumed it's related to poor circulation in my lower legs (I have Raynaud's and hair has stopped growing from calf to ankle) or perhaps a bit of Restless Leg Syndrome. I don't know if RLS is connected to Lupus in anyway or if it's a side effect of any medications.

If I'm feeling particularly unwell, in a vague non-descript way, sometimes I get what feels like a slight tremor in my upper body. I don't know what that is, though.

[MEGS53]

Hi

I also get it, mainly in my arms and legs at any time of day/night. Perhaps it’s associated with general muscle weakness 🤷‍♀️🤷‍♀️🤷‍♀️

Take care, rest and try to stay warm xxx

[FandNnan]

I agree with Megs53 and think it's weakness/extreme tiredness of muscles or inflammation as you've suggested CinderSue.

I had an event with my kidneys that affected my entire body and required a hospital stay 3 years ago and felt it to the extreme then and for about a year after. I felt like everything inside my skin was shaking.

Now I occasionally get the "tremors" and know it's time to check for infection/inflammation or just to rest.

My main piece of advice for you would be to always listen to your body, follow your instincts and if you don't feel right there is probably something going on. Unfortunately Lupus is different for everyone and will impact your life. This forum is full of information though and sympathetic people in the same boat as you. Best wishes 😊