PMRGCAuk
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Anyone else have bad feet (the tops)?

I started my journey with PMR Oct 2016 and was finally put on Pred in March after much weeping, wailing and gnashing of teeth. I have had a pretty good run compared to some I read about here (and totally sympathize with). Last visit to the rheumy was in July (I think) and he said my bloods show inflammation gone and he wants me off pred soon. I am on 1mg and have been for awhile. I feel okay but some evenings I go to bed and can hardly turn a page before I crash out. I work in two schools full time which is fine (too much sitting). My problem is the tops of my feet ache and ache. I get up and walk like Frankenstein until I have warmed up. Lately though the tops of my feet just ache all day. I work in a shelter preparing and chopping food on a Monday after work and when I walk to get my car (parked far away) I can hardly walk. I really must look like a zombie - slow shuffle going over Albert Bridge. Sorry for the long story but I am seeing a podiatrist who told me I do not have extensor tendonitis (which is what I diagnosed and the rheumy agreed). I have exercises which I mostly do (stretches) but my feet are horrible. If I have a day of lots of walking I am dead that night with really stiff, painful feet. My only exercise is walking and try to do 10K steps a day which is fine. Help. Any ideas what it could be? I cannot turn into an old lady already as I am (only) nearly 61 and have to keep working. Plus I want to keep active. What could it be? In my initial xray showed a bit of gout in one toe but no other arthritis...My bones ache.

Sorry to go on but any comments and expertise welcome. Thanks so much in advance.

xxx

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whitefishbay, I was just told by a Dr Rod Hughes, just a week ago tomorrow, that PMR does not effect you from your knees down. He said this when I mentioned that I believe my GP ignored PMR symptoms for over a year... One of the things I had complained to GP about was awful pain in my feet; I had trouble walking first thing in the morning. Dr Hughes said that did not sound like PMR... I did however have a myriad of typical PMR symptoms that went unheard. I'm sure others on this site, will be much more knowledgeable.

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Wow. Thanks for that info - never heard that before. So what is it? not fun. Dr Hughes is super knowledgeable isn't he.

thanks so much.

WFB x

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Yes, I went to him for a second opinion because a lot of people on this site mentioned him and felt he was one of the "good ones!" I didn't ask what he thought that (pain in feet) was, because he and I both agreed I had enough of the other typical PMR symptoms to justify my belief that it had gone undiagnosed for a while.

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My feet definately involved. I know the frankenstein/zombie/alien invader from men in black gait. I was told once by a physio to rub my feet together in bed ...sort if arch to arch...then whereever you can touch them together. It seems to work for me. Dont know theory behind it apart from confuses pain gateways and probably helps circulation. It can becone very comforting but irritating for others.

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Have had PMR For 4 years...and bad feet starting about a year into it!

First had a Navicular collapse (inside instep, Left foot)...eventually had the bump on the top of the foot, ankle instability, etc. Went to a Podiatrist early on and he suggested that I was doing everything I could. Also went back about 6 months ago, just to be sure I wasn’t “ruining” my feet with activity.

So, my on-going so,union has been “Superfeet” inserts that I buy online for all of my many tennis shoes....and KT tape that I used every day for 2 years. You can Google KT tape applications..tops of the foot pain, I step pain, etc. and apply the tape accordingly. I would not have been able to get through without it! It is applied with a “light” hand...just some light pressure over the sore spots...hard to believe it works! Best wishes for a solution😊

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Thanks so much. Will google shortly.

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K tape is brilliant actually. I have ysed it a couple if times but sadly i am allerguc to elasterplast so it tips me into a rash. There are eccellent videos on youtube. Just type k tape feet or k tape ankle on youtube app. I eatched it through to the end then taped up. I have dodgy knee so thought i would use again as it says hypoallergenic. It was 6quid for 5m on amazon. It really helped my knee but i could only leave it on 24htrs before it irritated my skin. But it heloed my mobility. It is well worth a try.

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I had pain in my feet at the start of PMR - enough pred got rid of all that but now at lower doses I do notice that they do get sore when I've been on them a lot.

Must remember to tell Rod Hughes if I see him that Prof Mackie in Leeds did some work and decided that PMR CAN and DOES affect hands and feet. I know a lot of PMR patients who describe similar feelings: as if our feet were bound tightly and struggling to spread out to be comfortable, and feeling as if we were walking on a mixture of sharp pebbles and broken glass. Now maybe it wasn't PMR - but we all have PMR diagnoses.

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Yes thats the feeling.

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Hmmmmm? Interesting. I'll be interested in hearing his reaction, as he was pretty clear that the pain in my feet was not caused by undiagnosed PMR.

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My feet are horrendous. The pain is shocking. Its like the bones are raw. I've tried every kind of footwear - my day starts with dread of putting them to the floor - then the ritual of rubbing in the latest "pain" cream to see if it will help. It is good on higher doses of pred but as I taper - the pain gets progressively worse. I actually can't bear to touch them most of the time apart from rubbing in the creams. Each step I take hurts. You have my total sympathy for yet another thing to put up with.

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The only shoes that are really fine for me are my crocs. I wear them at home and they don't hurt. Ugly but worth it. Sorry to hear it as you need your feet to do anything.

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The only shoes I could wear comfortably were a pair of Meindl hiking shoes!!! Blue leather I grant you - but hardly ladylike!!!!

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I have been diagnosed 2 months ago and now on pred, down to 12.5mg from 15mg.

Feet were definitely involved. For me it’s the sole of the foot (cusssiony bit) and the toes. My fingers are also swollen and that started about the same time as I started the pred.

The rest of the pain in shoulders neck and hips is gone thank god.

But this resudiual pain in fingers and toes is really debilitating... I read somewhere that someone got rid of it with higher doses of pred. Do you guys think I went down too quick? Shall I ask my doctor to go back to 15mg?

Many thanks

Claude

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My suggestion is to go up by .5 or 1mg and stay on it for a least a week before trying to drop. I am 6 months into PMR, and have dropped quickly at first, and was at 9mg for a bit, but then symptoms were significant so I am back up to 12mg... maybe 11.5mg. You will know best, and you do not need to ask your doctor everytime you may need to adjust the dose. I try to be active but struggle when the dose drops. There is no rush at first to drop your dose too quickly.

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Thank you that’s really helpful. Yes I think I dropped too quickly, I was even at 10mg for a week, certainly paying the price now...

Will try and go up by 1mg, actually 1,25mg as all I can do is cut a 2.5 pill in half, don’t have 1mg pills yet...

Let see what happens. Thanks again for your help and good luck to you too!

I am a yoga teacher and struggle to do my routine but find that when I do some stretches, the discomfort of the morning goes away quickler.

But sometimes too knackered to drag myself on the mat !

😵

C

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It took 6 months at 15/12.5 for the hip brsitis and the finger tendonitis/synovitis to go away entirely. They still reappear occasionally but never as bad. It felt like red hot knives stabbing into a joint - but it wasn't the joint it was outside it.

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Wow that’s a long time, how do you cope with the steroids? Is it ok? Actually it’s relatively low dosage still compare to the 60mg they use to put people on not such a long time ago.

I should be patient I guess...just worried about steroids side effects.

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It fades into insignificance in relation to 8 and a half years on pred altogether!

At PMR doses there are few or no significant side effects:

medpagetoday.com/rheumatolo...

except for cataracts - the one side effect I would welcome (I could get rid of my specs!!!) and there is no sign of them...

Many of the side effects of pred can be caused by aging or even by PMR itself - pred isn't half as bad as it is painted!!!

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Thank you, great article. Good to see research in this subject!

Oh and canI ask you, what dosage are you on now after 8 years?

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Currently trying 7mg again after being up to 9mg for a short while - minor flare due to a UTI I think.

I got down to below 5mg a couple of years ago, 4mg was OK too but 3.5mg wasn't so I went back to 5mg for simplicity and I felt better there. Then a few months later I had a proper flare that needed 15mg to get under control - it was quite bizarre, nothing like anything I'd had before and we came to the conclusion it was large vessel arteritis affecting chest arteries. Possibly mixed with adrenal insufficiency...

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I think maybe you reduced too quickly. Slowly slowly does it. High stress time slower still. You can read about the dead slow stop method which works but some doctors think is not fast enough.

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Hi my feet and lower legs were definitely involved. The pain in my calves was a late symptom , which appeared when I had become almost totally immobile. The pain was excruciating and felt very deep-seated. It went as soon as I started pred and I am now on 1mg and that pain has never returned. Although if I get a bit of a flare both my legs and feet are ‘achy’.

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Hi,

I am Hashimoto's with other autoimmune issues.

4 years ago I began to have pain in my feet so I was sent to a podiatrist.

He did not listen to anything I tried to explain and just pronounced that I had plantar fascitis. He suggested I have a scan guided corticosteroid injection into my left foot as it was the worse of the two. Although he did admit that the pain I had on the top of my feet radiating throughout the metatarsals "did not meet with the criteria of plantar fascitis", but all the same I should have the injection.

I flatly refused.

Offended he asked why and I replied that I did not agree with the diagnosis. We parted ways.

I have been taking my own water coconut Kefir, brewed at home since the 23rd November.

To date my so called plantar fascitis, has dramatically improved by, I would say 80%+. I always believed it was connected to Inflammation connected to Hashimoto's...

And the top of my feet pain, the pain in the metatarsals has gone by about 95%!! It was do bad, I could not walk at all. It felt as though my feet would snap with the pressure of putting my weight on them!

All I take is;

Kefir

Vit B complex

Magnesium

Vit D

Vit C

Iron

And I AVOID; sugar, potatoes (unless eaten cold the next day when the sugars in the carbs have altered), cow dairy, wheat, gluten, sodium monosulphite found in balsamic vinegar, red wine, shrimps (it is a preservative, BUT not used in organic wines and vinegar), Soya, legumes and celery.

I am also allergic to lamb and possibly beef.and Bok Choi.

I have lost over 5 kilos without dieting and am feeling better on the whole with less pain.

See my other posts.

Rgds

Poppy.

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