Painful hands and carpal tunnel syndrome

[HelenDaisy]

I was tapering slowly to 3.5mg with the aid of Leflonamide. All was going well and I was feeling confident I might be off Pred one day, after 3 1/2 years.

I was diagnosed with mild carpal tunnel syndrome in January and offered surgery (I declined!)

It seemed to improve but suddenly it's really bad, and my hands are swollen, stiff and painful.

I never had this symptom with PMR....so is it due to PMR?

I've tried 4mg Pred for 2 days, but it hasn't helped. I'm taking CoCodamol 8/500 and occasionally Iboprufen 400mg.

I'm so depressed to have yet another area of pain, and don't know what to do now.

Any thoughts, Oh Wise People?

[HelenDaisy]

I should add that I'm using splints, which help a little.

[tangocharlie]

All I know is that I got painful hands and feet when I came off steroids briefly years ago. I was tested for carpal tunnel and it wasn't that. Problem resolved when I went back on steroids. So I conclude in my case at least, it was related to inflammation/PMR

[tangocharlie]

I also got tingling in the hands from taking Leflunomide, rheumie said it was possibly peripheral neuropathy, could be that as it's a known side-effect

[DorsetLady PMRGCAuk volunteer]

Hands are affected a lot more than some doctors seem to realise or acknowledge.

Think you might have a combination of both, but maybe a slightly higher dose of Pred might help….sounds suspiciously like a flare.

[HelenDaisy in reply to DorsetLady]

That's what I'm worried about. I've messaged my rhuemy. I last spoke to her 2 weeks ago when everything was going so well

[DorsetLady PMRGCAuk volunteer in reply to HelenDaisy]

unfortunately these things can happen very quickly,…

[piglette]

I has something which seemed very like carpal tunnel before I was diagnosed with PMR. Steroids seemed to cure the problem.

[PMRpro Ambassador]

It can be part of PMR, it is more common in patients with PMR.

It is due to swelling that pinches the median nerve as it passes through the carpal tunnel - and at higher doses of pred this swelling is reduced. As the dose falls, it gets to a point where the inflammation and swelling isn't as well controlled. and the CTS symptoms either return of are seen for the first time.

For many patients it goes away once the PMR goes away, If you don't want the surgery, then the answer is probably more pred. It's a balancing act - like so much in PMR.

[HelenDaisy in reply to PMRpro]

Sounds likely. So fed up, as at last I was looking at recovery. Not yet it seems.....

[Mary63]

My thumbs and fingers started to hurt when I got below 5mg (after six years)

I have added 5mg on once or twice and then come back to half a mg above what I had been on with good effect, as though treating a flare. To be fair I had no other symptoms, so I won’t be doing that again. Upping the dose did help the thumb pain, but I’m not sure with me that it really was a flare.

So a week ago I started taking magnesium supplements. The pain is much eased, though not absolutely gone. Yet….. here’s hoping!

[HelenDaisy in reply to Mary63]

I take magnesium too. Fingers crossed... if only we could cross them!

[Wallysma]

Hi HelenDaisy

I am so sorry you are having hand drama...it's the worst. I.have had carpal tunnel for many years, didn't want surgery either. You have to do all the things that make your hands happy to calm things down...motrin or the like, wear splints at night for sure and maybe even soft wrist wraps during the day. If you are consistent that should help and then you can let up some or one or all of your helps. I agree that even as someone just learning about PMR no one focuses on hands (or ankles). My hands were so painful...throbbing, on fire, but also a stabbing feeling in my palm and fingers. It would wake me up; my hands were useless, I couldn't do anything. Life became interesting...I live alone with my pup who was useless...no thumbs. Anyway my hands were swollen as well...my ankles in a word - huge. My hand pain took all my focus as it was constant. So I was surprised about the PMR diagnosis. But when I went on the pred after two days the pain was gone. Now I'm back to my normal level of hand pain though it's lite right now...partially due to pred and the fact that I can't do much because of everything else PMR. If I do laundry I pay for it. Anyway I hope things improve for you. Oh...I did buy these black pressure.gloves....they have a wrap so to speak around the wrist. I find that using them when my hands are bad helps. I don't wear them for hours....but maybe 40 to 60 mins. Ok take good care.....

[HelenDaisy in reply to Wallysma]

You've had it tough. I taught my pup to take my socks off, she thinks it's a game. If only she could put them on! Thanks for your reply. Still waiting to hear from rhuemy.... Best wishes

[Wallysma in reply to HelenDaisy]

🦮🐶🌺🏵🌸 good luck with the doc and your pain levels!