Orthostatic Tremor

[Jojo91]

Hi all . I have just been diagnosed with this. Basically tremors in the legs which makes me unable to stand still without feeling wobbly and needing to move or sit down, though I can walk well. Wondering whether it's EDS related. Does anyone else have experience of this

[Jay66]

A friend of mine, who is hypermobile and has a daughter with possible hEDS, has Orthostatic tremor. She was first diagnosed with RA then told she didn't have RA, I have said I think she has hEDS but her drs don't agree. So, no proof, just a suspicion.

She carries a little pop up stool with her when sightseeing, and we have to co-ordinate lots of sitting stops, as I need to frequently sit down, and she needs to not stand still.

[marieflynn in reply to Jay66]

I have had tremors in

[Jojo91 in reply to marieflynn]

Hello Marieflynn - thanks for replying. I can only see a few words of your reply, could you check whether it was sent ok?

[Ladyuponthelake]

Hi JoJo,

Yes I have the same problem but haven't been diagnosed. I researched it when I read it elsewhere, possibly in a Post. Do you have trembling almost vibrating legs while lying down?

Quite painful from the hips down, we'll most days it's my worst pain.

My daughter has similar issues but with her ankles.

Warm thoughts,

🌻☉

[Jojo91 in reply to Ladyuponthelake]

Thanks for replying, and sorry to hear you get bad pain with it. Mine is only standing so far as I know, though my hips and thighs do ache when lying down. I am booked for an emg tomorrow, so might learn a bit more. Apparently they put electrodes on leg muscles,to measure the vibration and it's a certain wavelength which is diagnostic of orthostatic tremor. The medication my neurologist recommended is gabapentin, though I haven't started it yet as am reluctant to have yet more meds.

Hope you have a good day today.

[Ladyuponthelake in reply to Jojo91]

I took Gabepentine/Lyrica last year. Those dose I was on wad quite high and I had severe side effects such as very unsteady on legs, diminished focus, heightened tinnitus and heard undertone voices. But that was just me. Lower dosage may be better.

Please let me know how you get on. My GP is lovely but doesn't suggest anything other than, rheumatologist, physio and pain clinic. I give everything a shot.

GOOD LUCK 🌻🌈

[Hidden]

Hi there. I have exactly this problem too plus recently started resting tremors while sick with a flare up from a cold virus. Not being able to stand for long has really affected my mobility and independence. I haven’t yet been diagnosed with EDS or any form of hyper mobility. However I am hypothyroid and was diagnosed with RA 7 years ago, more recently this changed to primary Sjögren’s and back again to secondary to RA.

The vascular doctor and rheum at CTD clinic say that it’s probably about my Sjögren’s related small fibre neuropathy - which is very diffuse. The neurologist is very dismissive but has stated “mild ataxia and ganglionopathy” on her letter - just before “heightened health awareness”?! All I can say is that If she felt compelled to walk forward or sit all the time she would probably feel quite aware of this too!

If I turn my head I get momentary vertigo so crossing roads is increasingly tricky! In fact I now avoid being alone anywhere near moving vehicles where possible.

I’m not actually certain that either have anything to do with this problem. My late dad had similar and he was diabetic with gout. My late mum had something very stretchy and untoward going on too. Both my sisters have wonky balance and were born profoundly deaf.

I carry a fold out seat stick with me now and this really does help. I bought it in a fishing shop and has saved me from making a fool of myself sitting on pavements or walking forward in front of a bus many a time!

[Jojo91 in reply to Hidden]

Hello. Thanks for replying. You certainly have a lot going on. Sorry to hear your neurologist is dismissive. Can you see a different one? Good luck and best wishes

[Hidden in reply to Jojo91]

Thanks - she isn’t dismissive of the fact I have Sjögren’s related neuropathy or balance problems - just the extent of the impact. I hope I can see another as I wrote her a letter of complaint and she’s never responded - copied GP and rheumatologist in too but neither have referred to this at all. The neuro is due to see me again in November but I hope I’ll see one of her colleagues instead. I will report my symptoms and impact to my rheum again and perhaps she will deal with it for me.

[Hidden in reply to Jojo91]

tremor.org.uk/orthostatic-t...