Tingling hands and feet. Is this norm for PMR? - PMRGCAuk

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Tingling hands and feet. Is this norm for PMR?

Marilyn1959 profile image
β€’25 Replies

Hi, have been diagnosed this week with PMR. Steroids making a significant positive difference except for tingling in hands, feet and to lesser extent head. In ariticles I have read on net this tingling isn't mentioned as a symptom for PMR. Does anyone else have this as part of their symptoms or could I be looking for something unrelated?

Thanks

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Marilyn1959 profile image
Marilyn1959
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PMRpro profile image
PMRproAmbassador

Do you mean the tingling was there pre-pred? Can't say I can remember coming across it as part of PMR, no.

Marilyn1959 profile image
Marilyn1959β€’ in reply toPMRpro

Yes it was one of first symptoms prior to any consultations. Hence I wasn't sure initially whether I would be referred to rheumatology or neurology. Have mentioned this to both GP and Rhuemy but neither commented specifically on this symptom. Guess I will just have to ask the question, though have fed back to both that the pres has not had any impact. Will follow this through as you are confirming my own thoughts in your reply.

PMRpro profile image
PMRproAmbassadorβ€’ in reply toMarilyn1959

Which fingers? It COULD be carpal tunnel syndrome which is often found in PMR and which might take quite a while to settle with oral pred.

Is the tingling in your head your scalp? That can be a symptom of it affecting blood vessels in your head - I had it for a month or so before it disappeared, never to be experienced again. I also had jaw claudication that appeared and went.

Otherwise - pass!

Chihuahua1 profile image
Chihuahua1β€’ in reply toMarilyn1959

I have tingling and parasthesia in hands and feet which developed recently and my rheumy diagnosed me with Fybromyalgia on top of PMR. I also have stiffness and difficulty gripping with not being able to feel properly. It remains to be seen whether or not he's right. I can't say I have much faith in him.

GerriMc profile image
GerriMcβ€’ in reply toMarilyn1959

I have that too. Constant tingling in hands and feet. Only got it after starting on pred. Sorry you have it but glad it's not just me! 😊

Marilyn1959 profile image
Marilyn1959β€’ in reply toGerriMc

Hi GerriMc, Do you know why you have the tingling? Mine has been there before diagnosis, (as PMR symptoms escalated to a height!) so pre pred, but pred hasn't touched it. Am having neurology tests in a few weeks. Will get back to you and let you know outcome.

GerriMc profile image
GerriMcβ€’ in reply toMarilyn1959

Thanks Marilyn, I don't know why I have it. It's not too bad so didn't realise it was an issue until I read comments here. I'll ask again at my next appointment, between us we may get some answers. Best of luck.

Rose54 profile image
Rose54

Hi

Yes I had it in arm and leg on higher dose of preds mostly in morning but went off a day progressed .

Also experience it in scalp on occasions have attended A and E when it first happened as concerned about GCA but they said not to be concerned.

However if tingling is head leads to soreness and other GCA symptoms don't take any chances .

Rose

Marilyn1959 profile image
Marilyn1959β€’ in reply toRose54

Thanks for the advice Rose54. Am aware of GCA symptoms and won't take any chances if in doubt. Thanks for caring.

Unlike you this constant and consistent tingling in hands and feet started pre meds and diagnosis, but occurred at the same time as morning stiffness etc started, so assumed it to be a symptom of PMR. I am now having some doubts and think this may be unrelated to PMR.

Rose54 profile image
Rose54β€’ in reply toMarilyn1959

Its a nightmare

I honestly cant remember if it was a problem with me pre diagnoses or not .

I was one of the ones who took years before finally GPs agreed I had PMR not Chronic Fatigue or anything else .

And even now have to push for anything

As you say have to look after ourselves and be kind to us as no one else will do it for us.

Good Luck

Rose

PMRpro profile image
PMRproAmbassadorβ€’ in reply toMarilyn1959

Is there any chance that you don't have "PMR" as we discuss it?

PMR is just the name given to a constellation of symptoms and there are multiple causes. All the others should be ruled out - and THEN it is fair to say probably PMR on that basis plus response to pred.

However - if the tingling is due to poor blood supply to nerves (and that is very possible) it is likely to be slow to fade and, if the damage done is extensive, may last a very long time, possibly even be permanent.

Marilyn1959 profile image
Marilyn1959β€’ in reply toPMRpro

Consultant has made diagnosis based on no indicators present for rheumatoid arthritis, absence of any indicators through X Ray's on bones, presentation of symptoms (history), pace of progressive symptoms, pretty extensive practical examination and responses to related practical activity during examination and also response to 15mg of pres on symptoms. He seemed to put a lot of store on this last indicator in terms of confirming a diagnosis. He did also repeat bloods as one of the prime indicators (ESR) had not been tested for previously. We are awaiting results. The other bloods prime indicator (CRP) was high end of norm, but he said this was not unusual. The morning stiffness became whenever I sat, lay down or stood still. I couldn't bend my knees, my thighs. This had been the case for a couple of months and was worsening, but I think what sealed the deal was when These symptoms travelled upwards to my upper arms and the muscles around my neck really swelled. It got to the stage where movement didn't relieve pain as movement was so severely restricted and pain levels so high I didn't know what to do with myself.

All I know for sure is that it took only two 15mgs doses of pres to subdue these symptoms significantly, except the tingling. Hence why I posed the question.

I did ask the original doctor to check the pulse in my feet (initially tingling was in the feet not the hands) as my Dad developed gangrene due to clogged arteries in his leg and my sister has also has an op for this. But she said pulse was fine.

So am running with the diagnosis of PMR with perhaps something secondary going on. Watch this space.............

PMRpro profile image
PMRproAmbassadorβ€’ in reply toMarilyn1959

Fair enough - sounds convincing.

Chespoll profile image
Chespoll

Hi

Sorry to hear your news, and welcome!

I had / have problems with my hands but not my feet.

The pain in my hands, esp. middle two fingers seemed to be part of the PMR to me. Or it started at the same time! Got so bad I struggled to grip and pick things up. It went straight away with the steroids.

Now with the pred I do sometimes get tingling in my hands.

GP said probably part of PMR, Rheumy said not PMR but could be another form of Inflammatory arthritis, and asked me to take photos of my hands when they felt inflammed or tingled etc.

Which he then said might be PMR!

I don't know if its me being daft, but the tingling in my hands does seem to give advanced warning of when I've done too much or about to have a not so good day!

Billwizz profile image
Billwizz

I can feel for you I had/have tingling in my hands three years before being told I have PMR had all tests for carpel tunnel, steroids help but don't stop pain mine can start just buy holding a cup spoon also my feet tingle dr has gone done root and I have just had op on my back,time will tell. Hopefully you get some relief soon.

1602 profile image
1602

Hi Marilyn

I have had tinly hands almost since start of pmr symptons. I was originally given a possible diagnosis of carpal tunnel and given splints to wear. It was months before I was diagnosed pmr and the chronic hands and wrists disappeared with pred. I do get occasional tingling even now but just accept it. Hope things go well for you, Cath

Marilyn1959 profile image
Marilyn1959

Thanks to all who responded. I have noticed I am more clumsy dropping things and have always have a poor grip, but have only become aware of clumsiness since I have been unable to bend to pick things up! I don't have any pain in either hands, fingers or feet (thank goodness) but the constant tingling is Persistent, pred or no pred. Will pursue and let you know any outcome. Thank you for your interest and feedback.

pszak72 profile image
pszak72

I have had PMR. since March of this year. I also have had tingling in the feet and to a lesser extent in the hands. In my case it began after 2 months on prednisone. The tingling in my feet and throbbing awaken me at 4:00am like clockwork. My Rheumy doesn't seem concerned. As long as my inflammation keeps away I will deal with it.

I have had tingling in my legs and specially my feet since before I was put on pred and ever since. I was tested for everything you can think of (mri, tests for peripheral neuropathy), but still diagnosed with PMR. Also numbness in feet ( and getting worse) I hope all these symptoms go away if I can ever get the dose of pred down ( still at 10mg per day after nearly three years)!! It pleases itself and we just go with it.....

Marilyn1959 profile image
Marilyn1959

Hi All. Update on tingling hands and feet.

I have now mentioned this to Rheumy, GP and Stroke Consultant. None of whom batted an eyelid. This is the only ' unexplained', untreated symptom I have remaining since starting Pred. So I pinned my doc down, as whilst it causes no pain the constant tingling is very irritaing. GP will complete a neurology test on nerve endings when I get back from my hols towards end of August. Hopefully we can find the cause and deal with it!

ciy9091 profile image
ciy9091

Hi I have had tingling in hands and feet for about 18 months tested for many things MS Peripheral Neuropathy then got an ache in shoulder felt I'll for a few weeks flu feeling and hard to drag one foot in front of the other shoulders got worse and worse and spread down arms and hands the pain was incredible I couldn't get out of bed one day and my husband had to call an ambulance who gave me gas and air and morphine drip and took me to hospital Med admitting consultant said classic PMR but then saw Rheum Reg who said no trapped nerve in neck and gave me Tramadol I kept saying no this is PMR my brother also has GCA which should have been a big clue to them anyway dischafed still in awful pain after 12 days and 3 days at home with c diff as well that I contracted while in hospital contacted GP crying in pain who said she didn't see the problem in trying steroids been on them 4 days now and the relief is incredible. So yes I can only say mine started with pins and needles. Sorry for such a long diatribe

Marilyn1959 profile image
Marilyn1959β€’ in reply tociy9091

Hi. Definitely sounds like PMR since Prednisone works miracles with PMR when you first take it. If it is you will be on long term steroids to manage the inflammation. So check in with doc BEFORE your current prescription runs out or you will very quickly be back where you started. Do you have a follow up appointment booked?

Tiffany2 profile image
Tiffany2

Hi Marilyn Saw this old thread and yes, I too have the same issue of tingling in feet and lower legs (started before Pred). Just wondered if you ever found out why with yours or did the tingling just eventually stop?

kimsaunsc profile image
kimsaunscβ€’ in reply toTiffany2

Tiffany, I am experiencing tingling and wondering if your ever resolved?

kimsaunsc profile image
kimsaunsc

I am experiencing the tingling in feet and hands. Wondering if it persisted for you or if you ever got an answer.

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