Can I ask if anyone experiences sensitive feet with PMR? Any advise please? Walking very difficult

[emma9475]

Has anyone else suffered from swollen feet with PMR? Feels like walking on broken glass. Any advice other than elevating them. Doesn't seem to relieve the tight feeling. Have mentioned to doctor but he wasn't overly concerned. Walking very difficult. Thank you.

[Constance13]

Most of us suffer with pains/swelling in feet at some time or other. I find tubular bandages help - they certainly support the foot, especially when walking.

Take care! 💐

Regards from Constance.

[emma9475 in reply to Constance13]

Thank you x

[Hidden]

Hi emma9475, welcome. Yes the feet that feel bound but still feel like you are walking on broken glass. I think that was my first symptom. I wonder if you could tell us a bit more about when you were diagnosed and you current dose and if you are in the UK or elsewhere. It helps us give you specific answers. You can do that in your profile page if you can. My feet eventually developed neuropathy from diabetes and probably a bit of PMR. 🌻

[emma9475 in reply to Hidden]

Thanks Poopadoop. Yes, I will. Cause was mostly likely as a side effect to other medicine. Just over the year mark. Down to 10mg as a maintenance level from 40 mg but attempting to reduce that every month to come off it. Had a great run about six weeks but the feet are the main persistent problem. Some prednisone side effects like foggy brain and light headed, not a nice drug but a necessary one. The pain does feel like neuropathic pain. Burning sensation, sensitive to touch. What do you take for that please?

[Hidden in reply to emma9475]

I take duloxetine. I have had it for a few years but it had got to the stage where I was dreading putting shoes on. Do you think yours has got worse since reducing because it was bad the first 2 years when I was tapering due to PMR then I developed electric shocks shooting out of my big toes! I have just started year 4 and at 6mg. It's a long process but given your natural dose is 7 to 8mg I am fine taking up to those doses no problem. Sadly PMR/GCA takes as long as it takes!

[emma9475 in reply to Hidden]

Thank you. Well even on the higher dose the feet were always bad. Had MRI for infection but all clear. It's the unsteadiness on top of the brain fog and other associated prednisone symptoms. If the feet would return to some level of normal it would at least help. The feet were amongst the first symptoms but took months for the doctor to acknowledge that and refer to a rheumatologist. The ankles feel like they have invisible restrictive bands around them.

[Hidden in reply to emma9475]

You definitely need to have them checked out in terms of circulation too. It's not unusual for even rheumys not to accept feet can be involved.

[Woolyhead]

Yes, my feet are terrible. They feel as though I’ve been walk in the snow with no shoes on, frost bitten and painful. They’re cold to the touch but don’t feel cold enough to feel the frost bite effect. At times they’re burning. I’m only having a couple of hours sleep at night because they’re so painful. My toes are stinging and the feet go from deathly white to bright red. No matter what thick socks I wear, hot water bottle or foot warmer I use they don’t warm up. I take quite strong pain relief but this does nothing. I’ve mentioned to the doctor a few times who didn’t seem concerned until the last time I went when she ordered a doppler test, they couldn’t find a pulse in my one foot. So I’m off to the hospital tomorrow to see if they can find it.

I’m not sure if it’s the PMR as I first thought or something else.

[emma9475 in reply to Woolyhead]

That's awful for you. I hope they can sort you out. Does sound like neuropathic pain or nerve pain. Best wishes

[Sudswathi1]

I feel we can benefit more if you mention your age since we could give suitable weightage for age related reasons as well

[SheffieldJane]

I have Psoriasis on my feet. To keep it at bay I moisturise them morning and night and occasionally use a mild cortisoid cream. They can be scarlet and burning at night. Not sure whether this is separate to the Psoriasis as they can look quite clear when it happens. Oddly slathering them with E45 cream and putting light socks on, soothes them - even though they are burning hot.

[PMRpro Ambassador]

It is almost certainly part of PMR - a lot of people have mentioned similar feeling. Including me! I'm pretty sure it was tendonitis affecting my feet and had something similar in my hands. AFter about 6 months on pred it disappeared. I also have a feeling as if someone has sandpapered my feet.

I found wearing solid shoes helped a lot - by that I mean walking shoes! Bit clumpy for special occasions but comfort is everything! I could wear Birkenstocks OK but sandals and lightweight shoes were impossible.

[Hidden in reply to PMRpro]

Boots were better for me but at least 1 size bigger than usual

[PMRpro Ambassador in reply to Hidden]

Mine were Meindl - not just for walking around town!!!

[Hidden in reply to PMRpro]

They look comfy but out of my price range these days.

[PMRpro Ambassador in reply to Hidden]

I did wear them for well over 10 years before the soles disintegrated ...

[Hidden in reply to PMRpro]

I wear walking boots/shoes as they are usually value for money in the long run. My last pair of over a 100quid ones lasted me about 7 years. They still have good soles but a leak somewhere. The 30quid ones last 2 years tops. I am often on rough ground with a fair weight on them so I do wear them out.

[Marilyn1959 in reply to Hidden]

Try ebay Poopadoop.

[Hidden in reply to Marilyn1959]

I have a pathological fear of ebay 😂😂😂 I have been using mountain warehouse for my walking stuff (such as it can be called walking). My feet are so weird I have to go try them on these days. 😘

[Marilyn1959 in reply to Hidden]

Can understand the need to try on. Was just thinking if you know the make and size you might find them on there.

Why the pathelogical fear of ebay? The question is from an eBay addict!

[Hidden in reply to Marilyn1959]

I have ordered 2 things and both were counterfeit rip offs. No different from Wowcher or others. I am on Amazon but so far the goods have been real and good quality.

[piglette]

I have swollen feet. I go to Hotter for shoes now and have had to abandon my smart shoes. I also have swollen lower legs which feel as if they have been stuffed with concrete. I get the same reaction from my various doctors as you do about it, such as ‘it is the steroids’, ‘oh you would expect that’, followed by a shrug.

[PMRpro Ambassador in reply to piglette]

Hmmm - my slightly puffy ankles were neither. They were the a/f effects. Much better without the bradycardias...

[maria40 in reply to piglette]

Hotter have been my salvation. Not cheap it's true but they last ages and never seem to need repairing. Got my first pair - brand new and unworn - in a charity shop and I've never looked back since then. Used to have days when I couldn't go out because no shoes I had were tolerable so now I watch out for Hotter's sales.

[Woolyhead in reply to maria40]

Try ebay. I’ve had a few new pairs for half the price.

[emma9475]

That is it. It's unfortunate that it is a condition they don't know enough about.

[tangocharlie]

I've had problems with feet and ankles ever since the beginning of PMR. At one point I had steroid injections in both feet for plantar fasciitis which really helped. I know higher doses of steroids help, the swollen ankles resolve when I'm on steroids. GP prescribed support stockings which don't seem to do anything, and doesn't seem interested that I think it's connected with the PMR. Doctors seem to treat every diffferent thing in isolation, whereas I think the root cause is inflammation/auto immunity.

[Oumaof2]

I don't have pain or swelling in feet and daytime they are fine... Night time the soles burn and itch.... They spend most of every night outside duvet trying to cool down.... One thing I find relaxes them... Heron NS recommended Epsom Salts in a foot spa... It's very relaxing and does soothe.... But, even that doesn't help the burning and deep itch once horizontal... GP has checked foot pulses and they are strong... Any thoughts anyone?

[PMRpro Ambassador in reply to Oumaof2]

This

versusarthritis.org/about-a...

suggests using a cold water bottle! My feet used to be very hot overnight and I still stick them out from under the duvet. I suspect it is a part of the PMR a/i part.

[Oumaof2 in reply to PMRpro]

Thanks PMRpro.... Glad you’re switched on🤪 So logically simple🙄 Will try that.... With temperatures set to frazzle from tomorrow it’s great timing...

[PMRpro Ambassador in reply to Oumaof2]

Probably need half a dozen!!!!!

[Oumaof2 in reply to PMRpro]

😂😂🤣🤣

[HeronNS]

I have all my life had kind of bad feet, often with pain, and have significant OA in various parts of the feet. But the thing which might be relevant here is not that I feel pain from it, but I feel like I'm aware of every stitch in my socks, as though the soles were as sensitive as my fingertips. Weird.

[Oumaof2 in reply to HeronNS]

Oh, not nice nor comfortable... Our poor feet work so hard and get little or no thanks... Can't say I've experienced your problem HeronNS.... I'm wondering if my 'skinny' narrow feet ( no padding at all) have a bearing... Buying/finding shoes to fit C width feet are not easy to find, especially at a reasonable price.... My daughter and twin sons have all inherited 'expensive' feet....

Does your Epsom Salts help at all ?... Or, as you're in NS, a good paddle... Probably pretty cold even in summer...

Very excited for you and your OH, on the pending new arrival... It's a very powerful emotion meeting that new little person for the first time...

Take care... 🌻

[HeronNS in reply to Oumaof2]

Thank you for your nice comments. My feet are triangular, very narrow heel, wide (and now malformed from bunions) forefoot. Nowadays I can't ever find anything comfortable to wear, just sneakers with the best support available. I always had to buy the most expensive shoes when I was still able to wear them. Usually Italian with a double fitting. Not sure I could even find such shoes here any more. Sad really, because shoes can be so pretty.

[Oumaof2 in reply to HeronNS]

Yes, I think shoes are one of the last things to let go as we age and need comfort over style.... Yes, Italian shoes are really beautiful.... My sister was married to a Frenchman and lived In Cannes.... Whenever I would visit we had a couple of shopping days in San Remo... I love the Italian

fashion in general....

An arm and a leg just about covered it🤣🤣

I'm a big Skechers fan now..

Comfort all the way.... 🌻

[HeronNS in reply to Oumaof2]

Sadly even the Sketchers don't work for me if I want to walk, but they are about as decorative as I can get these days. Have pink ones I wear indoors when "dressed up"! I do have some FitFlops sneakers in silver, gold and red (not all in the same shoe of course!) but unfortunately they changed the last slightly, I guess, and when I went to buy more they killed my feet so they are now a write off. They wear out quickly and can't be resoled, but my first ones were a dream and I was happy, briefly.

[Oumaof2 in reply to HeronNS]

So annoying when something fits and you like it, then someone decides to tinker with it as it seemed like a good idea!! I'll look for the Fit flops.. Thank you for that... If I find a comfortable shoe/ sneaker I'll let you know... 🌻

[HeronNS in reply to Oumaof2]

I suspect I need to have shoes made for me.

[Oumaof2 in reply to HeronNS]

Do you think an orthotic insole might help? 🌻

[HeronNS in reply to Oumaof2]

Been there, done that. After a few years it turned out the well-padded sneakers (really running shoes) are more comfortable! But I do have to select the sneakers carefully. Again, the manufacturers keep changing things. One of the annoying things is how many brands chafe my anklebone, just one more thing to be careful about. Sigh.

[Hidden in reply to HeronNS]

I ended up with my current trainers due to research that said they were wide fitting. They were 50percent off at 30pounds. But the most comfy trainer I had were Sainsbury's own black trainers at 12 pounds they were fantastic and despite searching I never found the same fit.

[PMRpro Ambassador in reply to Hidden]

Someone said to me the other day that if they found a shoe they really liked they immediately bought 3 pairs!!

And it is said that if all older ladies wore trainers podiatrists would be out of a job ...

[Hidden in reply to PMRpro]

I really wish I had bought 3 pairs of 12pound ones!

[Whatgrange]

I’m just going to add this to the mix! Don’t know whether it will be any use. I started with neuropathy in my feet many, many years ago. Now 77! Not diabetic, it gradually spread from a few toes in one foot to both feet. Had ankle surgery on one foot which messed up the drainage and left me with a bit of oedema. Feet aren’t completely numb, I feel temperature-not always correctly!!

To cut a long story short my feet can be very sensitive and very uncomfortable and it affects my walking. For some reason I thought I would try shiatsu massage and bought an electric machine. From Amazon as I didn’t know whether I could tolerate it and it would be easier to return! Took me a while to find that there was only one programme I could tolerate. That was with no compression and the minimal strength. The weirdest thing was that immediately after the first 15 minutes I had much, much more flexibility in my feet! It didn’t do anything for the neuropathy but the increased flexibility and what seems to be much better messages getting to my legs has resulted in much steadier walking. I can only assume that some fluid retention has been released. So I’m using it 15 mins morning and evening.

If anyone does try one of these do experiment with the programmes gradually! I used YouTube because the instruction manual was useless!!

I’m 18 months into PMR.

BEST WISHES!

[Oumaof2 in reply to Whatgrange]

That is interesting, and something I've never considered... Will check it out on YouTube... Hope it continues to help.. Thank you What Grange... 🌻

[Gary1310 in reply to Whatgrange]

Hi...I bought a Shiatsu foot massage after reading a post here....bet it was this post . I bought mine from Walmart...it is great! My feet are now happy feet! I use it most evenings before bed. Put lotion on my feet, socks and stick them in the massager.

[Whatgrange in reply to Gary1310]

I’m very pleased! I think it’s great to share ideas and experiences. Some will work and some won’t!!