RLS in my hands?

[MumofSam]

Hi Everyone

I don’t know if anyone has experienced this, but a few nights ago it felt as though I was getting RLS in both my hands. Highly unpleasant! I’m not one of the sufferers who feels pain with this horrible disease, I get a sensation which I would describe as my muscles “itching”, or the feeling you get when you need to stretch multiplied thousands of times.

Sometimes I get a sudden shooting of intense nerve sensation (can’t describe it) that seems to start in my body and then shoots down my arms to the two end fingers in each hand. Not pain, but the feeling is so intense that if it carried on for too long it would drive you nuts.

I’ve suffered with RLS in my legs all my life, but I blame Tramadol for making it worse and I now get it in my left arm, neck and base of me spine. I don’t understand why it seems to be getting worse. I’m on 2x50mg off Pregabalin a day but still suffer with symptoms most nights. When I was a child I got it day and night, and at the moment it’s creeping into my days as well, even when I’m upright and moving. I know I’m atypical, but I think there are other sufferers out there who also experience this. Wish I’d never taken Tramadol!

[Hidden]

I'm really not sure what's going on with your arms, it doesn't sound like RLS, but it could be.

100mg of pregabalon doesn't sound enough, but thr other things is if anythinh else has changed e.g. you've started taking another medication or your diet's changed then that could be a trigger.

A further thought is whether you have developed an iron deficiency.

[MumofSam in reply to Hidden]

Hi Manerva

It’s my hands, rather than my arms that I’m talking about here, although I do now get it occasionally in my left arm. There are quite a few people who experience RLS in their arms, as well as their legs. Nothing else has changed. It all escalated when I weaned off Tramadol a year and a half ago, and has never returned to what it was prior to taking it. Other than Pregabalin I’m not on any other meds. My blood ferritin level is normal and nowhere near low.

I think this condition is far more complex than we realise, but also I think that RLS itself is misunderstood and misdiagnosed so lots of people think they have it when they have something else. Too easy for the doctors to dismiss symptoms as RLS with little interest in investigating properly.

[Joolsg]

I got RLS in my hands, back & face during augmentation on Ropinirole. It could be augmentation from Tramadol. Dr Buchfuhrer mentioned this 2 days ago. Tramadol apparently acts on the same receptors as Ropinirole & pramipexole and many experts believe it causes augmentation.

Maybe ask your doctors to switch you to another opioid like oxycontin?

[MumofSam in reply to Joolsg]

Thanks, but I stopped talking Tramadol about 18 months ago. I knew my symptoms sky rocketed without it, but thought things would steadily get better. Instead things have got worse, a form of augmentation, when on no meds. After 9 months or so of hell I went back to my doctor and started on Pregabalin, wanting the lowest dose possible. Tramadol seems to have permanently affected the dopamine receptors in my brain somehow and it seems things are still deteriorating. I didn’t need meds for RLS prior to taking Tramadol for sciatica.

[Sampsie]

I agree with Manerva that 100mg of Pregabalin won't be enough. it usually isn't for me. Generally 150mg to 200mg works for me. Have you tried more? Could there be a trigger here?

I hope it improves.

[MumofSam in reply to Sampsie]

I’ve been trying to take the minimum dose possible. I’m not sure if you’ve read my posts that give the history behind this?

[Sampsie in reply to MumofSam]

I do too. I take what I need each night to keep it to the minimum but enough to work. I hope it works out.

[Shumbah]

I suffer from RLS in my arms , hands legs etc ver since childhood .

I am on I’m buprenorphine with total illuminates all symptoms unless I don’t take enough then my fingers and toes are the first to come to life on there own.

[MumofSam in reply to Shumbah]

Sounds awful, but I’m glad you have something that works for you.

[jenki2]

Hello,

I also sometimes get RLS in my arm and wrist, so you aren't alone.

Funnily enough I take tramadol to help my RLS along with a low dose of Pramipexole, have tried multiple times to drop it completely.

[MumofSam in reply to jenki2]

Hope you don’t have the problems I’ve had when you do!

[FluteE]

I hope you now have your RLS at bay in your hands. I’m just now reading this post because I’ve just now figured out what my hand issue actually is. I have had it in my hands for over 30 yrs now. Drs didn’t know what it was so it was easily dismissed as overuse/job related. My legs didn’t start going crazy until 15 yrs later… and now I’ve figured it out! My hands are not like they used to be but I’m guessing the lowest dose of pramipexole was started at the same time I retired from the job that was “affecting” them.

My father recently passed after many years of torment. I’m thankful he is no longer suffering. He was never diagnosed with RLS but all the nerve and joint related diseases, so drs had him on the same drugs you have been given.

I’m thankful you shared your experience to help me figure mine out.

[MumofSam in reply to FluteE]

I’m sorry to hear about your father.

I’m now on 2 x 100mg of Pregabalin as I got fed up with the lower dose not working. Changed it just over a month ago but still fighting through the effects of permanent fatigue.

Thankfully I’ve not experienced RLS in my hands since, though do from time to time feel as though it’s on the top of my head from the forehead up, which is a weird sensation.

There are many of us who don’t fit the narrative of typical RLS sufferers. We need to make sure our voice is heard as I think some of our “atypical” symptoms aren’t taken seriously or recognised as RLS.