Numb Toes Debate.

[Stifffingers]

Interesting reading about Numb Toes. & footwear types etc. One of the distinct “Symptoms” I’ve had from almost day 1 since being diagnosed with PMR has been numb toes , and mainly in the left foot. ( Did I recall the writer saying it was her Left as well ?). At first , in the early days , I had terrible cramps in the front of legs around the shins, combined with the numb toes. Thankfully as I have moved along the wellness route , it is now only my toes.

Took on board the shoe scenario. That does not apply to me. Mine become noticeably numb as I get into bed.. Everynight. By morning they have come back to normal. Very rarely do I feel numbness during the day.

Just adding my experience of “ Numb Toes”.

Regards .

[jinasc]

I invested in soft fluffy angora bed socks.............

[Stifffingers in reply to jinasc]

Thank you for that. Not the kinda thing I would tend to wear.

I wish you well .

[PMRpro Ambassador]

Something I have forgotten to mention in the other discussions is that if you DO have numbness in your feet do please keep and eye on your feet because numb areas easily get damaged and you don't notice. Long term that can lead to trouble. Caught early that trouble can be avoided.

[Stifffingers in reply to PMRpro]

Thank you for your concerns.As I said mine are noticeable only when I get into bed.( PMR Pro is this a common symptom from your vast experience?), so unlikely to substation any injuries!

BTW, if you recall any of my previous posts??? Took your advise and stayed at 2 mg of Pred instead of reducing. Last 2 days , have come down to 1 a day, and thus far thank G-d, not really noticing any real differences.

Kind Regards

[PMRpro Ambassador in reply to Stifffingers]

My personal suspicion would be peripheral neuropathy for some reason and Harvard health seems to agree:

health.harvard.edu/diseases...

and other articles say much the same - including that neuropathy problems are often worse at night,,

It is also a symptom of fibromyalgia:

healthline.com/health/fibro...

and it is perfectly possible to have both PMR and fibro at the same time - pred deals with the PMR but not the fibro and there is sometimes an overlap of symptoms which is why some doctors get rather confused!

[Stifffingers in reply to PMRpro]

Ouch! That’s a shock to the system. Both PMR & Fib.

Is there a separate treatment for the latter?

[PMRpro Ambassador in reply to Stifffingers]

As far as I know there isn't much in the way of successful treatment for fibro - but if you ask as a separate thread there are people on the forum with both.

[SnazzyD in reply to Stifffingers]

Does hanging your feet out of the bed help them come back?

[Stifffingers in reply to SnazzyD]

Only when I get hot. Lol. No haven’t actually tried. Normally , hit the pillow & out , ( After noticing the numb toes.)

[SnazzyD in reply to Stifffingers]

Worth a try because it helps diagnose a possible problems with blood supply to the leg, though the classic sign is pain or cramping with exercise as well, but it might be early days. Not panicking just thinking around it.

[Hidden]

Yes, it's me the writer of Numb Toes. Mine are left foot and strange how you've said about cramps down shins. I suffered leg cramps a long time before PMR was diagnosed, so now know why this has happened. I don't think it has anything to do with footwear either. I can still feel the pinch when I pinch those three toes, so that's a good thing.

[Stifffingers]

Hi.

Never experienced cramp at the front of the leg before. All those years of Athletics , football, etc. Always had cramp down the calf’s. never the front.

Interesting yesterday, did a days gardening. Came in Toes numb both feet. Had to put them on a hot water bottle. So , unlike what I said yesterday, about only getting when I get into bed........that’s changed. Boy do I ache today, from all that hard slog in the garden. Toes still numb ..lol.

Stay safe.

[Hidden]

The shins and around there into feet had big painful nerves. Ever banged your shin hard?? It's like the humourous in the elbow....lots of pain. So keep an eye on that and numbness anywhere. The problem is numbness is hard to about until sensations like pins and needles and pain start. I saw a physio who did a follow body physical nerve/feeling exam. Just basically gently ran her fingers and the funny pin thing down muscles and skin. I had 10 or 15 patches of numbness in addition to the 10 or so I knew about already.

healthline.com/health/numbn...

With diabetes, fibro,. Post surgical pain, sciatica and shin splints throughout adolescence I don't suppose I had much chance of avoiding a bit if changed sensation.

[Stifffingers]

Thanks

[Lanakay]

Mine seem fine in the mornings, also. My left foot has been swelling a bit and my middle three toes have been getting numb since last Thanksgiving.

[MavisEllen]

Hi I have a bit of a problem with numb toes/feet. My toes are very nearly completely numb although I felt it when the sister at the surgery jabbed one with a needle. I have GCA and PMR. The long term yo-yoing of prednisolone has led to me developing steroid induced diabetes. I have over three years finally come down from 80mgs a day, when my ESR went off the scale, to 5mgs. My consultant has basically written me off. He said that as he has been unable to stop my headache, nearly non-stop for 3 years 2months, I must stay on 5mgs pred. daily for the rest of my life. I have muscle cramps virtually every night in legs, arms and along my spine. My feet swell so much that it is difficult to walk although I have special shoes. I am on metformin for my diabetes, furosemide for water retention, quinine for cramp, amitriptyline for muscle relaxant, omeprazole for stomach protection and I have pregabalin for if the pain gets unbearable. I get frequent cellulitis of my lower legs and the skin texture and colour have changed a lot. Another little complication is the fact I have neuropathy from frequent shingles attacks. I don't want to sound as if I am sorry for myself. I try and do what I can to overcome these trials. I have tried to 'make friends' with my pain as it is a daily companion. I also, before lockdown was seeing a pain management team.

[Hidden in reply to MavisEllen]

You certainly have a lot on your plate. I find it interesting the fact that they suppose if you can feel the stabber at the drs you don't have numbness and/or changed sensation. Numbness to be is I can't feel the toes themselves....not that I can't feel a touch on them. But then there are times when I can't feel the stabber. Very weird having changed sensation.

I have had type2 diabetes for 20years and pred put me on insulin a couple of years ago. I have been on Metformin for 19years I think it is. I just wondered what your hba1c is on Metformin and if you are eating a low carb/low salt diet to help out the meds. I hope you can get back to the pain management team. When I started with chronic pain and fibromyalgia after back surgery I found them helpful....especially the counselling sessions I had. 🌻

[Stifffingers]

Sorry to hear of your pain.

Makes my numb toes very minor in the light of things.

Regards

[MavisEllen in reply to Stifffingers]

Hi, Nothing is minor if it is affecting your quality of life and that includes sleep and well-being. I worry probably more about my feet and lower legs as I have a dread of developing gangrene and requiring amputation. I intend to do my utmost to prevent deterioration. Yes, I am on a self imposed low carb/low salt diet. My last blood test in December my hba1c was 49. As the consultant has signed me off I feel that I have slipped through the net a little as no one has even contacted me to see how I am managing. However, I am just about. Thank you for your reply.

[nuigini]

I will add my experience too. Have had numbness in both feet since being diagnosed with PMR 6 years ago. After many investigations over the years it's come down to the possibility of nerve pinching caused by herniated discs in the lumbar (compressed) area of my back, although an MRI didn't clearly reveal the issue. I'm doing exercises to strengthen the muscles supporting my lower back in the hopes of seeing some improvement not only with my numb feet, but weak and heavy legs. I was scheduled to have a further back MRI in July, but I'm sure that will be delayed months until the backlog created by COVID is cleared.