I have been struggling with this issue since Nov 2023. Sudden sharp pain in one ankle then the other. Saw 8 docs diff views. Scan of one foot saw mild Achilles tendinitis but treatment for that didn’t help and all docs agreed not the issue. Had some cortisone shots which as everyone knows helps for awhile. I do have large neuromas in each foot pad and perhaps can account for toes but no one commits to that. Toe nerve pain yes but not numbness they say which I think is weird.
I do not have high glucose
Ankle pain and weakness is everyday. Must tape ankles and wear ankle boots with 1 1/2 inch heel. These are regular fashionable boots so ok but also must wear them as slippers!! Massages from therapist and tape etc let me get around. Rheumatologist had me go up in Pred and then down. Have rested on 2.5 which is good for PMR and higher does nothing for ankles.
My question is does anyone in this learned through experience group have anything weird like this or have an idea of what other illness I might have? Regular blood work is good not even high inflammatory indices or glucose. Rheumatoid arthritis negative also but rheumie still wonders.
As always thankful.
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bluegirl7
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Some people develop neuropathy when on pred - and not necessarily because of raised BS.
Where in the ankle was the pain - is it ongoing or intermittent?
I had dreadful achilles problems - a GP gave me cipro as an antibiotic when I was on methylprednisolone and within days I had tendinitis. It came and went until the local rehab rheumy told me to get orthopaedic insoles to insert in all shoes I worse. Easy enough to get here, orthopaedic shoemakers all over the place , but you pay through the nose!!! But it did work. I never wear slippers in the UK sense - proper shoes all the time.
You have my sympathy though - it is really horrible when your feet hurt, you can't do ANYTHING without pain can you?
What kind of doctors did you see? In case the pain in the ankle is in the outer aspect, this is worth considering if it hasn’t already, peroneal tendonitis.
My concern regards wearing a heel all the time is that you may shorten Achilles, though it does take the tension of the tendon. Full time taping may also lead to weakening on the foot muscles and tendons because the job of stabilising is being done by the tape. However, I do get that you need to be mobile. Have you been medically cast to the wind then?
I have seen top docs/ orthopedists and foot and ankle specialists. Additionally Osteopath and different physical therapists. The pain is on the side of ankles and top of feet. I did think perineal nerve. They ignored it. I am amazed at the assortment of “excellent “ orthos who did not know what to do with this problem.
I am also concerned about the taping and the heel but if I even try for an hour without the heel the pain is intense. I have been limiting the the tape on my own to long walks. I have also found a leg wrap that fits over the boot and holds ankle steady and it is the best. And happens to be fashionable but cannot be worn every day.
My calves are very tight and PT massages them which helps somewhat. I have lidocaine patches when pain is too intense.
I find it all difficult to manage but also just bizarre.
I saw several people. The only person that sorted me out was a podiatrist who examined my gait and assessed my muscles from the waist down. She cost about £80 initially and the insoles were less than £100 I think. The report made it clear I wasn’t going to win any awards. Pred and deconditioning and Quinolone antibiotics years ago, had taken their toll. I was given exercises to sort out stability from hips to feet. At first I couldn’t do more than 3 reps at a time. Then my lifelong wonky gait that wasn’t at all obvious until my body decided it was withdrawing support, was adjusted with insoles. My tendons worked themselves back to normal and my Morton’s Foot was supported. It took the best part of a year to go from tears every time I walked the dogs and skating around the house on flat feet to not thinking about it.
Wow!! Snazzy this sounds amazing. Wish I could find a similar doc. Will keep trying. All of the same apply to me with PMRahd Cipro and sitting at computer esp during g Covid!! I will keep this in mind regarding my gait etc. and different inserts etc.
you don’t happen to have a printout of your exercises do you? Just to give me ideas. I can’t seem to loosen calves even with PT exercises.
It wasn’t a doctor but a podiatrist in their own practice. You need to do your homework. I went to two rubbish ones first. One had memory problems and was long past retirement and the other was in a nice clinic but spent half of the expensive appointment time trying to remind himself what the situation was. He also sounded like he was waffling and the sound of his own voice.
The exercises didn’t come as a sheet, they were tailored to my particular hip, leg and foot weaknesses. The person also needs to assess whether you can carry out any particular exercise safely and not have your tendons go twang. I found the standard Achilles exercises worse than useless.
I thought my gait was normal apart from wearing my shoes down in a particular way like many people. The Pod was able to see the complex way my foot operated on its way to wearing down my heel on that spot while gaving me a bunion on the other corner of my foot. With my untreated issues and tendonitis by walking flat footed to protect my Achilles though you are doing that by wearing a heel which is not a long term solution. My neuromas have felt so much better with a proper insole made for my foot and my bunion has stopped getting worse.
Don’t give up because others who really shouldn’t be have been useless.
Hi, Well noted. had two PT's that podiatrists sent me to who insisted on Achilles tendon exercises that increased the pain 10X and I ended up in ER!! Coming out of there another orthopedist prescribed the same!!! The new PT is very good and massage and exercises help but she is confounded by the toe numbness etc and the neuroma bit as playing a role.
I found an article this morning by a doc in Australia who says that the neuromas can cause a lot of this neuropathy as well as leg and ankle pain. He does surgery which I have looked into but there are some logistical problems for me regarding that right now so not an option at this time. I also found that there are some docs doing a laser type of treatment that shrinks them and I will see about that. Might be easier for me if it works and can help with this immobility and pain.
Thank you for these NHS exercises. They are great! Nothing like that has been on offer to me. To be clear, I have done a lot of homework - 8 senior docs and 4 physical therapists!!!
That is why I am so frustrated and reaching out and reading anything I can find.
I am going to hand out this article when I go into the next doc on my list to try!!!
I’m similar with PMR for 2 and a half years and down to 1 to 2 preds but Plantar Fasciitis now for 5 months but gradually improving. Podiatrist helped with some exercises and Rheumy blood tests low.
yes similar little sharp pains in feet. Saw Rheumy who said none of my pains .. itching etc were pmr. .. have reduced to 3/4 mg…from starting at 15 nearly 3 years ago. She said.. neuropathy! Nothing to be done. Just have to put up with it!!!!
Yes, I have. Mine seemed to start with a fall, 14 months ago. Too many things to mention after that including two subluxations of the ankle bone (partial dislocations) & a badly sprained ankle. I haven’t walked without pain for 14 months. I have an NHS podiatrist, was referred to her by a consultant & I have speviallyade insoles £140 a pair, but I get two free pairs to start with & a new pair each year. I need shoes that are boot like & must wear them 24/ 7. No sandals, no Crocs. I had x-Ray which shows damage to the bone below the big toe. I had an ultrasound 3 weeks ago, which revealed many problem, including tear in tendon, tendinopathy (& other stuff I don’t understand but waiting to meet with Dr). I do get pins & needles & numbness & there was talk of neuropathy. I do have hypermobility so that doesn’t help. Oh & thr achilles tendon is in trouble, too. I have 3 large swellings on the foot as well. But nothing to do with PMR….unless you know differently, PMRPro & DL? Don’t kniw what treatment with be. I’m on crutches for 4 weeks so far following an accident damaging my knee & dislocating the patella!
Pred doesn't do tendons any good really - especially if someone dishes out cipro for an infection. And you have damaged a lot - it is all very well insisting on carrying on as if there were no problems, but accidental damage never heals to perfection and then as age advances, the rot sets in!!!
Hm. I was starting to wonder, as more & more results show tears in tendons, or tendinopathy, or both! Nah, you’re right, the damage is taking longer to heal,plus not healing quite as well. I’m down to 1mm pred, had extra fatigue since last fall, but think it’s the pain I’m in. Good news, foot, knee, hip (bursitis) & shoulder are all on the same side!!!! That’s lucky! But I have sciatica on right side for a bit of balance!! S xx
I was interested to read this post as over the last couple of weeks I have been having foot and ankle pain. My right heel is really painful I was thinking Planter Fasciitis for that but I'm also getting pain the left side of my left foot, burning sensation in feet and lower legs, cramp in both feet toes and legs and tingling in all areas of feet. In addition to the PMR I have blood cancer that can cause burning in the feet and legs it also causes bone pain which I'm getting in my lower legs so it's very difficult to know what's causes the problems. Like you my calves feel tight especially at night when my feet are up. I'm starting the process of elimination by getting my bloods done to see if my markers are up re the blood cancer. If they are I usually have venesection and feel relief when they've removed a pint of blood. I'm also trying to reduce my pred after going back up from 6.5mg to 10mg as I felt so unwell. I stayed at 10mg for a while then reduced to 9.5mg for 5 weeks and yesterday 9mg . Every drop in dose affects me but it seems worse coming down from 10 this time than it did with my original reduction Im not sure why? But I want to keep pushing through as recent dexa showed osteopenia 🤦 what a nightmare this is. So to clarify I've foot pain, ankle pain, painful legs both in the bones and muscles. I haven't seen anyone about the pain yet but I think I now need to. Hope you get to the bottom of your foot pain please update.Kind regards
What are your t-scores from the dexascan? It is all very well wanting (or being told) to reduce the pred dose because of bone density considerations but there are other ways to deal with that and reduction of the pred will inevitably result in worsening PMR symptoms so the process is self-perpetuating.
All those symptoms in your legs COULD also relate to poor blood flow so you may be sensible to ask about testing for that.
I'd be reluctant to rush off pred with figures like that!! They are near enough normal which is a good starting position. Osteopenia only means that your bone density is less than it was as a 30 year old. It isn't pathological state until it become osteoporosis.
There are other things to think about with pred and bones but that is another conversation.
Well that's good news thanks. I've been trying to do more walking and weight resistance exercises to help my bones but with this foot pain it's getting difficult. You're right about the circulation and that does concern me as the biggest risk with the type of blood cancer I have -polycythemia Vera is blood clots. I'm trying to get an appointment with the hematologist to get my bloods checked but it's proving difficult 🙄 I'll try to get an apt with my GP to investigate other potential causes for the foot pain. But like I said the problem is both PMR and polycythemia Vera can cause leg and foot pain so it's difficult to know what's what. My knees are also really painful 😣 I'm not rushing to get off the pred I'm tapering at 0.5mg every 4- 8 weeks depending on how I feel. This is the plan agreed with endocrinology and when I'm down to 5mg, if I can get there I felt really unwell at 6.5mg the last time I tried to reduce, the plan is another adrenal function test and according to the results switch to hydrocortisone, I think that's the name, and try and come off. Sounds like a good plan but we shall see.
The trouble with HC when you have PMR is it doesn't control the inflammation as well. Endos only see their side of the coin - so do rheumies if it comes to that!
Yeah I've read posts about this medication I guess I'll just have to see how I am. I have a long way to go before reaching the point of switching anyway.
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