PMR and Hand issues

Posted by kim555 @kim555, Jan 28, 2023

Hi - I'm new to the group and still in the process of being diagnosed (I finally found a Dr. that knows stuff), but am pretty sure that PMR is what I've been fighting for the last 1.5 years (at least).
I have this new level of pain that I'm curious to know how someone else may be combating it. My hands go to sleep so bad at night that the pain wakes me up, and then subsequently I fight getting back to sleep. The numbness does not go away during the day, it just gets "tolerable." At first I thought "oh it's carpal tunnel", but that was before seeing this new doctor and learning about PMR. I am fortunate enough to have an adjustable bed so for the last 2 nights have been sleeping in an "upright" position that helped one night, but that didn't cut it the next 2 nights. I even went the carpal tunnel route with wrist wraps, little to no help there either. So, now I have fatigue on top of fatigue on top of pain. Yay. (sarcasm)
I am not on medication, and as you probably already know ibuprofen does absolutely nothing to help. Since this "thought" of PMR was just given 3 days ago I will be doing more blood work and am being referred to a rheumatologist for proper diagnosis (FINALLY!!!).
Any suggestion, is a suggestion well taken. Well except amputation. While that sounds great in the moment it's really not ideal. 🙂
Thank you in advance for your time reading, and possible help.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Hi. I am (one of😁) the husbands CTJPMarie introduced a few weeks back. Diagnosed with PMR after 4 months of going nowhere & pain. Prednisone makes a significant impact and 10 mg/ day holds the pain down below 5. I would rather a low dose daily. However my hands wake me up sometimes so bad they feel like my fingers are going to pop. I have determined it is not carpal related cause if I get into just the right position the buzzing electricity stops. Somewhere further up my arm is the problem; elbow, forearm, shoulder or neck. Anybody find massage or acupuncture helpful?

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@kipwiley

Hi. I am (one of😁) the husbands CTJPMarie introduced a few weeks back. Diagnosed with PMR after 4 months of going nowhere & pain. Prednisone makes a significant impact and 10 mg/ day holds the pain down below 5. I would rather a low dose daily. However my hands wake me up sometimes so bad they feel like my fingers are going to pop. I have determined it is not carpal related cause if I get into just the right position the buzzing electricity stops. Somewhere further up my arm is the problem; elbow, forearm, shoulder or neck. Anybody find massage or acupuncture helpful?

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Welcome @kipwiley, I've had two occurrences/flare ups of PMR but never experienced what you have for PMR symptoms. My own personal thoughts are there may be something else going on besides the PMR but then I'm not a medical professional. There is another discussion you might find helpful if you want to go the massage route to see if it helps:
-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.

You mentioned being diagnosed with PMR after 4 months of going nowhere and pain. Another thought I had about the pain levels and symptoms is that you might be trying to taper down too fast. My rheumatologist always told me to listen to my body when tapering down. He had me keep a daily pain and dosage log to track my level of pain and the dose. If my pain level was above a 2, I either stayed on the dose another few days or increase it by half of the previous taper so that I wasn't going back to the previous amount to see if it helped. Do you mind sharing how long ago you were started on prednisone and your starting dose?

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@kipwiley

Hi. I am (one of😁) the husbands CTJPMarie introduced a few weeks back. Diagnosed with PMR after 4 months of going nowhere & pain. Prednisone makes a significant impact and 10 mg/ day holds the pain down below 5. I would rather a low dose daily. However my hands wake me up sometimes so bad they feel like my fingers are going to pop. I have determined it is not carpal related cause if I get into just the right position the buzzing electricity stops. Somewhere further up my arm is the problem; elbow, forearm, shoulder or neck. Anybody find massage or acupuncture helpful?

Jump to this post

Discovery was sometime mid December through a shot-in-the - dark prednisone z pack that wiped out the pain after 2 days. After that I found a Rheumatologist and we went to 15/day experimentally; mostly successful. Maybe I am pharmaceutical centric but I don't like pills and tapered to 10 with Dr permission. 10mg seems like an acceptable minimum dose. Trying to minimize the negatives. I take a few well researched supplements that definitely make a difference overall but the hands seem to be resistant. I prefer to balance the pain to dosage and look for other paths.

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i actually did have carpal tunnel and had surgery last week . no more tingling or burning, but new and different pain and swelling in both hands. never had a hand issue in the past w PMR

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