PMR and foot pain: I was diagnosed with pmr 4 years... - PMRGCAuk

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PMR and foot pain

Linny3 profile image
70 Replies

I was diagnosed with pmr 4 years ago and have been on 15mg most of the time. For the past 8 months I have been having a horrible time with painful feet. Have been to foot dr. numerous times, each time trying something different. The last time he said it was tendonitis. He gave me a prescription for a formulated pain gel which isn't doing anything. He said a steroid shot wouldn't help in the area I was hurting and he couldn't give me any more orally than what I was already taking. I asked him what do i do, the pain was so bad and I can barely walk. He said I was between a rock and a hard place and left the room.

Now, I am giving serious thought to this being pmr in my feet. As I think about it, it is the same pain and stiffness that I feel elsewhere in my body. I just never thought about it actually being pmr in my feet. I always thought a little more about it being a possible side effect of the pred.

Any thoughts would be appreciated.

Thanks

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Linny3 profile image
Linny3
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70 Replies
SheffieldJane profile image
SheffieldJane

What is a foot doctor? I was just wondering whether your troubles were kind of beyond his competence and whether another specialist would have the wider view. Like a good Rheumatologist? Just a thought, it sounds awful. Have you been X-Rayed?

Linny3 profile image
Linny3 in reply toSheffieldJane

Thanks for the replyHe is a podiatrist with a list of about a dozen ailments he treats. My feet have been X-rayed many times. Mostly looking for a fracture which we haven't found. Last January I had an mri of one foot and all looked normal. This time the pain was so sharp I thought maybe it was another fracture, but then the pain moved around into another part of my foot.

I was taking ocentric injections. I had three and had terrible side effects. My feet were really bothering me then and the rheumatologist said to stop the shots for awhile and see what happens. Didn't change anything with my feet, but the other side effects went away.

I am really getting so tired of all of this, as many, I am sure are also.

123-go profile image
123-go in reply toLinny3

PMRpro's comments about feeling as if walking on sharp pebbles and worse after sitting reminds me so much of the time I had plantar fasciitis. It was crippling with the pain mainly underneath the feet in heels and arches. It's quite a common complaint so I would be surprised if it wasn't mentioned.

marigolds profile image
marigolds in reply to123-go

I had plantar facilities, it also called gout, it is an autoimmune condition.

rocketman42 profile image
rocketman42 in reply tomarigolds

Plantar fasciitis and gout are not the same thing.

marigolds profile image
marigolds in reply torocketman42

Sorry I read it was a form of gout .

123-go profile image
123-go in reply tomarigolds

People with gout may have an increased risk of plantar fasciitis.

marigolds profile image
marigolds in reply to123-go

The young doctor who came to see me, as I felt as felt as if I was standing on a sharp knife, examined my foot and announced I had gout it was a surprise but it cleared up quite quickly.

123-go profile image
123-go in reply tomarigolds

I've heard that gout is extremely painful. What a good thing your attack didn't last too long.

piglette profile image
piglette

It sounds unlikely to be PMR pain, but I may be wrong. Have they thought about arthritis?

PMRpro profile image
PMRproAmbassador

One of the worst feelings I had with untreated PMR for nearly 5 years became the foot pain. My hand pain was fairly typical tenosynovitis but the foot pain was strange. I felt as if I was walking on a mixture of pebbles, sharp stones and broken glass and wearing shoes that were a couple of sizes too small or they were bound up like Chinese lady's feet were. The only relative comfort came with wearing my leather Meindl hill walking shoes, firmly laced, or Birkenstocks for summer. It was worst when standing after sitting for a while, knives sticking in as a I put my weight onto my feet, after a few minutes hobbling it felt as if bit that had been stuck had loosened up. It improved after about 3 months on my starting dose.

Like you I am stuck about 15mg - and at the moment I feel I'd like more as I am flaring, not much pain as such but niggling stiffness and things. The 8 month timescale shouts "flare due to stress" to me - that's my reasoning and I shall stick to it. If Covid wasn't enough for us, I do have other things going on that can't be changed.

"Ocentric"??? What's that?

Linny3 profile image
Linny3 in reply toPMRpro

oops sorry that was meant to be orencia which is the shot they can give to help get off of pred.I agree, I am wondering if this is a pmr flare. I have only had a flare when I have reduced the pred. and I haven't been reducing.

Take Care

PMRpro profile image
PMRproAmbassador in reply toLinny3

Orencia/abatacept isn't one that would logically be used in PMR which is most likely to be due to IL-6 not t-cells. PMR isn't RA. Why not tocilizumab/Actemra?

Linny3 profile image
Linny3 in reply toPMRpro

The side effects got to be too much for me with the actemera .The Orencia was just approved for use as a dmard for pmr. The stomach pain was really horrible with the Orencia, not sure if I will try it again or not.

PMRpro profile image
PMRproAmbassador in reply toLinny3

That's interesting - hadn't heard of that. Have you any info?

FRnina profile image
FRnina in reply toPMRpro

hallelujah to hiking boots, Birkenstocks and to that I'll add Doc Martins. And I don't even suffer foot pain. (can't believe I ever went round in high heels). But do get little looks of shock-horror when visiting Paris but then I think to myself 'get over it, people'. Never again will I dress to conform: one of the joys of getting old is doing what you like (as much as you are able, that is).

PMRpro profile image
PMRproAmbassador in reply toFRnina

I learned the joy of comfy feet when I was in my early 30s and living in Germany!!! I'm sure women did wear stilettos but not to go to work as they do in the UK and US ...

FRnina profile image
FRnina in reply toPMRpro

wish I'd realized to respect my feet at such an early age. Even the French and British newsreaders wear vertiginous heels- not a brilliant role model for our daughters and granddaughters.

PMRpro profile image
PMRproAmbassador in reply toFRnina

A lot of them just wear them if their feet are in view! German news and weather presenters often appear in jeans - sometimes heels, sometimes something more sensible...

Kendrew profile image
Kendrew in reply toFRnina

Hear hear. I still like to look 'nice' and not frumpy, but NO MORE will I conform to some of fashion's ridiculous trends! Comfort is the priority 😀

tangocharlie profile image
tangocharlie in reply toPMRpro

Increasing my dose has worked wonders for me, sorted out all the niggles that had accumulated by what I think were caused by being on too low a Pred dose for too long, about 8 months. I do hope I will be able to taper a bit and not stuck at high levels for too long. But we will see how it goes. I have gone from 40 which was absolutely blooming fantastic to 37.5 and already shoulders, neck and upper back hurt a bit more. Do you know of anything that could help these areas without having to up the dose again? It feels like classic PMR stiffness but I did stupidly carry a heavy rucksack around the other day so I might have just strained the area. Naproxen didn't do anything.

PMRpro profile image
PMRproAmbassador in reply totangocharlie

Nothing I can think of in the UK I'm afraid. Warmth?

HeronNS profile image
HeronNS

Did he give you any exercises for your feet? Amongst the cascade of unfortunate events which led to my crippled knee was a painful foot. The exercises my physiotherapist prescribed worked really well and very quickly. I had been having trouble putting weight on the foot although I don't think it got as bad as what you are describing, Have you had an MRI?

Linny3 profile image
Linny3 in reply toHeronNS

He didn't offer any exercises which I thought unusual. I did have an mri about a year ago and everything looked good then. At that time I was having this awful burning in my feet.

HeronNS profile image
HeronNS in reply toLinny3

I suppose they've looked at all the usual suspects - i.e. the things you and I find out when we use Dr Google? It most likely is time for a different specialist as this one appears to have gone as far as he can. Neurologist?

One thing which frustrates me about doctors is their tendency to treat symptoms, often, although not always, to good effect, but their disinterest in finding out the cause of the ailment. The doctor I had for about thirty years turned out to be one of the really good ones, although I didn't understand how good he was until he retired and I have since dealt with other GPs of varying competence and interest.

SheffieldJane profile image
SheffieldJane

I see you’ve had a lot of useful replies. Has anyone thought about peripheral neuropathy? It doesn’t quite fit but it is one of our hazards.

Longtimer profile image
Longtimer in reply toSheffieldJane

I think I have that, things are getting worse daily for me....pains in feet and lhave tingling and burning in my kegs....they feel like I remember when I was in my twenties and drank alchohol....weak and wobbly!.....going to GP after Christmas, can't face it right now......like PmrPro has said.....stress....this week everyday someone has ring with bad news, and wanting advice......so hard, but have to keep going....

Linny3 profile image
Linny3 in reply toLongtimer

How horribleGood Luck

PMRpro profile image
PMRproAmbassador in reply toLongtimer

The word is NO!!!!! An answering machine to screen calls is a good move if it is possible?

Longtimer profile image
Longtimer in reply toPMRpro

Yes I know.....this week have felt like I need a switchboard like I worked on all my life!.......then I can see who I want to answer or not!......Trouble is I go to bed with it all mulling over.....today felt like running into the garden screaming.........but legs too painful!....

Tomorrow is another day.....I will NOT be available........

PMRpro profile image
PMRproAmbassador in reply toLongtimer

I am sick of the washing machine brain!!!! You can't switch it off!!!

Longtimer profile image
Longtimer in reply toPMRpro

A good description......my only distraction or "mindfulness"is crosswords...the harder they are the more I can't think of anything else......but then the dam n phone rings...😱Also what's going on in the world is only adding to it all........

I can understand people who live "offgrid"

Sophiestree profile image
Sophiestree in reply toPMRpro

Love that description, washing machine brain, I so suffer from that... badly!

in reply toPMRpro

Caller ID is a big help as I get lots of telemarketers. “Washing machine brain “ is a perfect description.

PMRpro profile image
PMRproAmbassador in reply to

I was thinking more of unwanted relatives and friends having a whinge ...

in reply toPMRpro

Works for them too. 😏

SheffieldJane profile image
SheffieldJane in reply toLongtimer

I have spent a couple of days mostly in bed, feeling like you describe. I can’t tell if it is the underlying condition, the drugs, a random virus, or I’m just fed up. Fortunately my partner is bouncing around like a Christmas elf. I am very, very lucky. 🙏

Longtimer profile image
Longtimer in reply toSheffieldJane

Same here, my body wants to stay in bed, but the pain won't let me.... and like you don't really know why.....the battle dealing with it makes me low. Hubby walks miles does most things in and outdoors, I do the meals......that's about all....I just keep trying to think next year must be better for us all..... 🙏Hope things ease for you, and can communicate with your family at Xmas to give you a lift......this will be out first Xmas not going to my sons, but they understand....

SheffieldJane profile image
SheffieldJane in reply toLongtimer

I feel almost normal in bed, as soon as I go downstairs the flu feelings and weakness starts. The house is decorated, the presents wrapped, the final on-line shopping list is made. Everything posted to Australia weeks ago. All this frenetic preparation kept me going. Now I’ve flopped, typically, for me, at the final fence. Let’s hope next year is our year. Sending you love for a happy Christmas and a really positive New Year!

Longtimer profile image
Longtimer in reply toSheffieldJane

Thank you....it will be our year next year!..Shortest day tomorrow.that's a start..👍

Linny3 profile image
Linny3 in reply toSheffieldJane

I had a nerve conduction test awhile back and all was well. It may be something to look at more seriously.

Longtimer profile image
Longtimer in reply toLinny3

Yes, I will talk to GP, expect it will be a blood test after Christmas....if I'm lucky!....

Telian profile image
Telian in reply toLinny3

Until you get a diagnosis why not try gel supports in your shoes? They were an immediate relief for my plantar fasciitis.

Linny3 profile image
Linny3 in reply toTelian

Thank you for the reply. I have everything known to man to put in my shoes. Unfortunately, I can't put on shoes right now the pain is so bad. When I am Bare foot, my feet hurt but are tolerable and can walk without a limp. When I put on shoes the pain is so bad I can't walk. Right now ice and rest seems to be my friend.

Telian profile image
Telian in reply toLinny3

Not nice for you. Hope you get a solution soon.

How’s the cat?

Bennijax profile image
Bennijax in reply toSheffieldJane

Is burning and itching feet neurological symptoms due to PMR?

SheffieldJane profile image
SheffieldJane in reply toBennijax

It can be Bennijax, more due to long term steroid use, I think.

Celebrant profile image
Celebrant

Have you been checked for diabetes?

Linny3 profile image
Linny3 in reply toCelebrant

Yes I just had blood work done thinking that may be a problem, but everything is good.I thank God for that.

Raewynne profile image
Raewynne

I get really bad foot pain too.I think it may be peripheral neuropathy due to steroid induced diabetes.Taking More painkillers helps.Raising them up.Not getting too tired if that is possible with prednisolone.

Daisy246 profile image
Daisy246

Hi,

I agree with 123-go, I recently had it in one foot and hobbled about for about 6 months before finding a device from a company called Plantar Cure and eventually it went.

Is the pain at its worse when you get up from sitting along time or in the morning when you get up?

I feel for you as it can really get you down

Take care

Linny3 profile image
Linny3 in reply toDaisy246

I have had plantar fasciitis in the past and this isn't that. My pain is now on top of my foot and along the outsides of both feet. The small bone along the side is very painful.

In my opinion in the early days of taking high doses of steroids I think we can do damage to our joints, muscles etc as steroids mask pain, and I felt so well on the high dose (80 down to 40mg) I did more during that time than I’d done for months. I’m now almost constantly on 5mg and I too have a painful foot and hip. I think it’s now arthritis in a previously damaged area. Just my own theory x

marigolds profile image
marigolds

Make sure it isn't gout!

skeeter19 profile image
skeeter19

I have PMR and was told that can be a part but is not peripheral neuropathy. The only thing I have found that helps is "701" available on the internet. I put a strip on each foot and it works for a couple of days! I wear loose shoes, keep my feet from getting too hot and try not to be on my feet too long at one time. During my tub soaks I keep my feet out of the hot water. I use it only when the pain is bad and accept that my feet have that weird pain/sensation on a regular basis. My daughter got a reaction after a while so save it for only the rough days. Hope this helps.

AnnTique profile image
AnnTique

Hi. Sounds just like my feet!!! I have not been diagnosed with PMR and am NOT on any steroids. I am taking Pregabalin as I was told it is nerve pain. I am type 2 diabetic and have peripheral neuropathy, mainly due to damaged nerves in my spine, but a degree of it due to the diabetes. I have had every test known to man and I have never been given a definite reason for my pain! It is now affecting my hand too. I also have osteoarthritis in many of my joints therefore I get palmed off with “it’s down to your arthritis “ or “it’s down to your diabetes “! I’m beginning to think that no one has a definite answer. Sorry to sound so negative but, I have had this problem for about 7 years now. Good luck!!

Barney546 profile image
Barney546

Hi I was diagnosed after a year of pain with atypical polymyalgia prednisolone worked well currently on 6mg . After about a year with pmg I started getting foot pain over the next 3years I was referred to a podiatrist who initially diagnosed me with plantar fasciitis they tried me with several different treatments none of them worked, after another scan of my feet that said I have inflammation in my heels .when I had a appointment with my rheumatologist he said he didn't think it's connected to pmg!! .anyway in the meantime I slipped and injured my knee and was prescribed naproxen (with omeprazole) wow!! No foot pain. The medication was ment for my knee short term treatment. But it's the only thing that works for my feet so I don't want to stop taking it!.

whitefishbay profile image
whitefishbay

Well I have very painful feet (tops of feet and where it meets the ankle). The rheumy said (what I had diagnosed) extensor tendonititis. My podiatrist said no. She said there was a bone growing out of the top of my foot (which would keep growing slowly). I have had PMR @ 5 years and I diagnose myself as having arthritis in my feet. I walk like Frankenstein first thing in the morning but once I get going it is fine. The key is to keep moving but if you do over 16,000 steps your feet will really ache that evening. Build up to 10,000 steps very slowly and a hot shower makes them feel good. My gps are not interested one little bit. When I mention-they just look at me. Best of luck.

KSklar profile image
KSklar in reply towhitefishbay

I find Diclofenac Sodium topical gel is usually helpful with very similar sounding problems. (Small world... went to wfbhs). good luck.

whitefishbay profile image
whitefishbay in reply toKSklar

Thanks.

whitefishbay profile image
whitefishbay

P.S. I wear crocs first thing and around the house. They are the solution for me anyway. Ugly but who cares.

anutycrixp profile image
anutycrixp in reply towhitefishbay

I have troublesome feet even before P.M.R.I went to a specialist podiatrist who predominantly deals with professional sportspeople.He had then just set up a practice to change from global travel etc.He analysed gait and posture using all manner of tech equipment including walking across a long mat up and down a corridor which was connected to the commuter system[the mat not corridor!].He diagnosed the problems and prescribed specific exercises and custom made orthotics.He warned that correction of gait can take time,not an immediate "cure".Yes orthotics did help some straight away but over time [years] my feet and back problems have improved considerably.I can now walk barefoot without pain.May be helpful? I cheerful recommended him to friends,one of whom he referred directly to an orthopaedic surgeon:subsequently required hip and knee replacement yet most pain was in the feet!May be helpful?

whitefishbay profile image
whitefishbay in reply toanutycrixp

Everything is worth a try if you can afford it. So where do you live Anutycrixp? Cryptic call sign.

anutycrixp profile image
anutycrixp in reply towhitefishbay

suffolk,went to clinic in Norwich .

LMAR profile image
LMAR

I have had PMR since Nov. 2017....the Pred was ruining my body & health, so I worked hard & have been off Pred for 1 year now....but I still have PMR symptons but just not painful enough to take Pred....thank God....so I too have suffered & continue to suffer from foot pain - top of my food swells & the pain is awful....I too have been to doctors including the orthopedist...cannot fine anything....so I just take lots of tumerec &/or bosweilia & eventually the swelling goes away....I have found in the US not many doctors know what PMR is, much less can tell you how to handle the Pred...I guess there are not that many cases compared to the population....it is so hard to get info about to handle this disease...I have only found one person in my area that has it & he is a male & handles the pain very differently than I do....& btw, I have a bunyon from the Pred as well...Good Luck & let us know how you fare with your foot problem...

Odosmum profile image
Odosmum

I have inflammatory arthritis and PMR. Before the arthritis was finally diagnosed, I used to have horendous pain in my feet and ankles with little swelling. My hands and wrists were also affected, but to a much lesser degree. I was wondering if you are affected similarly - although the steroids would help with the pain, even if you are affected by arthritis. Proper Disease Modifying Arthritis Drugs made all the difference to me.

Judigardener profile image
Judigardener

I really like Skechers go walk and some slider sandals for the summer. They have plenty of give under the feet. I get intermittent foot pain too. It’s possible we have fibromyalgia running alongside PMR.

Conundrum profile image
Conundrum

Hello, you have my sympathy. I experienced the same this year when we came out of the first lockdown (maybe the period of inactivity, while sheilding contributed). GP dx plantar fascitis and gave me strong pain killers, chiropractor agreed and recommended Birkenstocks; expensive but brilliant, go down a size.

Both began to work in a few weeks but I still need to listen to my body : gentle excercise and recognise when I am overdoing it.It is excruciatingly painful, send hugs 🤗🤗

mngirl profile image
mngirl

I had terrible foot pain (right foot) I went to the podiatrist after trying a boot, arch support he sent me to a therapist. She found a”knotted” muscle in my calf. The massage was painful but it “unknotted” the muscle and that was the last of the pain. If you feel down the calf and feel a hard knot it might be worth a try

Gussy-1947 profile image
Gussy-1947

I am 73 and was diagnosed with Diabetes 2 in July 2019, on Metformin still. In March 2020 my doctor prescribed the statin Crestor, even though I had normal HDL, but she was concerned about LDL level & protection for the future. After two weeks of taking the statin, my feet were extremely sore on the sides and my toes felt like they were filled with gravel. I ceased taking the statins immediately. My thigh and groin area were seizing up and felt like they were filled with cement.

Walking any distance became a problem as time passed by and in August I told my doctor that I saw myself being in a wheelchair by Christmas! Blood tests showed I had PMR and I was prescribed steroids 15mg. After a week I could walk again and am now down to 10mg. Feet problems were probably the result of peripheral neuropathy!

She suggested taking Endep (Amytriptylene) twice a day. After six months my feet are feeling so much better and I can wear shoes again.

Good luck from Australia 🤗

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