Awakening with hands feeling cold and numb at night

[Rimmy]

Hello Everyone

I've been around here a while now - nearing my 3rd year with PMR/GCA and still on 11 mg which I seem unable to taper down from as still with some minor (achy) symptoms suggesting I am still (after 2 months here) 'right on' my necessary dose. I am however feeling more like my 'old' self with weight slowly dropping and something like my past regular face reemerging. The only thing is I am waking at night to find my hands feel very numb, cold and almost 'dead' - the kind of sensation you get when you 'sleep' awkwardly on a limb. If I rub them together quite hard however they very quickly return to normal and this never happens during the day. It does not appear to be a circulatory problem - no signs of discoloration of the skin or anything like that - but this feels rather strange as you'd imagine. I apparently don't have any other current health issues such as diabetes. Interested to hear about anyone else with a similar experience ?

Best wishes

Rimmy

[Constance13]

I suffer from this too! I put it down to bad circulation as it improves with warmth and movement.

At night I wear comfortable bed socks and fingerless gloves. I also need to put on soft knee supports.

My husband says it takes me longer to get dressed for bed than most women take to get ready for work.😂😂😂

[Rimmy in reply to Constance13]

Thanks Constance - don't think it a circulatory thing - but everything needs to be discounted of course.

[Hidden]

Hi, any neck or shoulders issues? Try changing your pillow configuration to see if it eases it. Also as soon as you wake check if your hands are inside or outside the bedding. For a while I seemed to sleep on my side and would wake up with my hands gripped in a prayer configuration with my fingers threaded like fists. A bit like rugby players who do that silly handgrip before kicking for goal. 😉They were always cold and numb. The problem is if you unhook them 2 mins before you wake you don't realise you are gripping your hands tightly.

[Rimmy in reply to Hidden]

Oh thanks - nothing like that ever occurred to me - I will see if I can 'catch' myself in the act of clasping hands or fingers - it sounds almost as difficult as catching yourself 'snoring' (ha ha !!)

[Hidden in reply to Rimmy]

🤣🤣🤣 It is. Check your fingers for any redness between them as soon as you wake up.

[SnazzyD]

I would see a doc as it might be a neck problem for example. I had this for a few months before diagnosis with GCA. I used to think I’d laid badly but in my sleepy fug didn’t twig you can’t lie on both arms at once. In any case it didn’t feel quite like that anyway.

[Rimmy in reply to SnazzyD]

Thanks will consider the neck as a possibility too - as I do sleep on several pillows for a longstanding reflux (avoidance) strategy which has worked well for that anyway !

[DorsetLady PMRGCAuk volunteer in reply to Rimmy]

If you need to raise your head because of your reflux it might be worth considering a sloped pillow made specifically for that. It then stops the neck being in an uncomfortable position which can happen if you have too many pillows - there’s a gap between head and back which can lead to neck issues.

[Hidden]

Hmmmmm? I have not been able to get any doctor to even "imply" that my Neuropathy (hands and feet) is linked to PMR/GCA or caused by the Pred... but there seem to be a lot of people with PMR/GCA and on Pred, who complain of hands, feet or both hands and feet being numb... My feet are much worse than my hands, but yes the feeling is numb, cold, "almost dead." Have it checked out... xxx

[Rimmy in reply to Hidden]

It's all very confusing as I see AI diseases are also sometimes considered CAUSES of 'peripheral neuropathy' as well - and even if Pred is creating the problem - or maybe 'adding' to it the choices we have are limited anyway with GCA. If the only solution is tapering our Pred hopefully we can manage that before to much damage is done - but it cannot be 'hurried' as we know ....

[Hidden in reply to Rimmy]

It cannot be hurried, indeed!

[PMRpro Ambassador in reply to Hidden]

"Nervous system

Frequency not reported: Arachnoiditis, benign intracranial hypertension, convulsions, dementia, dizziness, EEG abnormalities, impaired cognition, increased intracranial pressure with papilledema, increased motor activity, ischemic neuropathy, severe tiredness or weakness, meningitis, neuritis, neuropathy, paraparesis/paraplegia, sensory disturbances[Ref]

Psychiatric

Frequency not reported: Amnesia, anxiety, delirium, depression, emotional instability and irritability, euphoria, hallucinations, severe psychiatric symptoms, insomnia, long-term memory loss, mania, mood swings, neuritis, neuropathy, paresthesia, personality changes, psychiatric disorders including steroid psychoses or aggravation of preexisting psychiatric conditions, restlessness, schizophrenia, verbal memory loss, withdrawn behavior"

drugs.com/sfx/prednisone-si...

under For Healthcare Professionals

Of course, some specialists may find the fact that steroids are used to treat some forms of neuropathy confusing

[Hidden in reply to PMRpro]

Well again PMRpro, you have more knowledge than my GP, Rheumy and Neurologist, as all three have been questioned about this, time and time again and all three have said "straight-out," that my Neuropathy has NOTHING to do with my PMR/GCA or the Pred.

Thank you... this at least gives me HOPE, that as I reduce the Pred, I may actually feel my feet again!!!!!

[Rimmy in reply to Hidden]

Me Too !!!!! XX

[Brubeck]

I often awaken with numbness from elbow, up arm, to ring and pinky fingers. My new Rheumatologist confirmed it's Ulnar Nerve Neuropathy and recommended Occupational Therapy. I'm learning techniques and exercises to free up that nerve and strengthen my hands. Like you, I sleep on my back with pillows and I think sometimes I put pressure on my elbows when they rest against the mattress with hands on tummy. Curling up the hands and wrists is bad too. I'm going to look for narrow pillows for my arms to rest on! Maybe you can find some exercises online.

[Rimmy in reply to Brubeck]

Thanks I do sometimes wake up with clenched hands - so I will look further into this !

[Ciar]

I am another person with PMR who has neuropathy symptoms. Mine started in my hands about the time I got PMR. (had it mildly before prednisone so maybe not a side effect). After a lot of nerve tests I was diagnosed with carpal tunnel. Then it spread to my feet and hips and lower back. Don’t have a clue what’s happening to me, but it’s not much fun. I have read many times that carpal tunnel is sometimes associated with PMR.

[Rimmy in reply to Ciar]

Hi Ciar - thanks for your input - I may be having some similar symptoms to you but I don't think it fits the carpal tunnel dx for me - I have no pain - just numbness and it is generalised very evenly to both hands. From what Idyllic says and info from PMRpro I am fairly sure however it is a form of neuropathy which I am hoping will dissipate with tapering - if it is a side effect Pred.

[Ciar in reply to Rimmy]

I was surprised at the diagnosis, as I also had no hand/wrist pain. Also not much repetitive movement in my hands. I think it was brought on by PMR or whatever caused PMR. All my neuropathy symptoms are a bit worse on the left side, but it’s both sides. More recently I have developed what is most likely arthritis pain in my thumb joint on one hand which might or might not be related. Hopefully you are right and it’s a side effect for you. Good luck.