Does this symptom sound familiar? I have been woken up with the worst ankle pain - both ankles. On 35 mg of Pred. Only warning has been a few weeks of heel pain. I cannot stand down - no injury or unusual exercise.
Recent GCA diagnosis. 4 years PMR.
Severe pain in both ankles - can’t take my weight. - PMRGCAuk
Severe pain in both ankles - can’t take my weight.
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SheffieldJane
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44 Replies
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I had ankle pain and saw a physical therapist who told me to do those exercises stretching my toes downward and up. It worked.
Perfect. Thank you!
Morning Jane
Do you have arthritis? These would be typical pains/places if you have.
Standing, walking are incredibly difficult for me too.
Yes - in the upper vertebrae.
DorsetLadyPMRGCAuk volunteer
Here’s a link to nhs - which then has a link to exercise- as described
nhs.uk/conditions/foot-pain...
This is good site as well - creakyjoints.org/symptoms/a...
That is helpful!
Hope you can soon sort things out, you’ve been through the mill a bit recently.
Calf stretches and Achilles stretches helped me with a similar problem. Stand on stair and lower heel down. Then up on tiptoes...slowly...10times. Hope it improves. You have had a bumpy time recently.
Uh oh Mary - that may have worked for you and possibly many others but think it depends on what is going on. One thing Prednisone can do is make tendons very touchy and the Achilles particularly. I tried that exercise when having Achilles pain and boy did they make it MUCH worse - I had hardly any sleep for 10 days with excruciating calf cramps all night. Just a word of caution and this may not happen to everyone I know but sometimes an exercise can create more problems than we anticipate if it is not exactly the 'right' one.
Does it wear off with mobilising or stay? Where is it in relation to the ankle bone that sticks out? Inside or outside of the ankle? Any heat or swelling?
It lasted for hours, then disappeared, raised and with Tramadoll. Really quite unbearable, like ankle bracelets, too tight.
This?
podiatrytoday.com/blogged/w...
Similar although I didn’t think I was obese. I could have dropped like a stone with the getting out of bed pain strike.
Not sure being obese is a required feature.
Hi SJ - you 'poor thing' - it seems like 'one damn thing after another' for you lately and we all empa-or sympathise I'm sure. As I said -to Mary below though I would be a wee bit cautious about doing any exercises without knowing what is causing the pain. High doses of Pred can certainly be correlated in some with tendon weakness or pain - and this may be an issue for you but hard to say. Fact it is in both ankles says something though about it having a generic quality so it would be better to establish the 'what' and 'why' more precisely if you can as some exercises may make things a lot worse and you don't want that !! (Sorry just in my 'humble' opinion due to past experiences) - anyway hope things improve FAST this time !!! XX
PMRproAmbassador
Was the pain you mentioned in a reply somewhere else both legs or just one? And was it localised at all? Where was the heel pain you mention?
I agree with Snazzy and Rimmy, if it is so bad you can't stand on it (is that what you mean?) I think it needs some investigation before you try any exercises which could make some achilles problems very much worse.
The whole heel on each foot has been feeling sensitive to weight bearing for months. The ankle pain was tight, painful, constriction around each ankle. Nothing to see.
Does anything in this
aafp.org/afp/2004/0715/p332....
make it easier to identify where is affected?
Does tarsal tunnel syndrome fit?
foothealthfacts.org/conditi....
Very useful articles, thank you. I was even wondering about Psoriatic Arthritis. My Psoriasis has only ever affected my feet. They are extremely dry, although the Psoriasis itself seems to be in remission . The ankle pain went as mysteriously as it came. I have clearly reached my sell by date.
As long as it isn't the use-by date 
I think they are right to call the doc. BUT and this is for everyone. When you awaken ..before you get out of bed, pump your feet (point and flex) BEFORE you do anything else. that way you get the circulation going and wont fall over dizzy or whatever first thing climbing out of bed. I found this out when my husband had to have pace maker put in and we were in the ER waiting for surgery with his heart going at 30 beats per minute (for a few hours by then) afraid because if it went lower they had attached a defibrillator on his chest. but the doc said it would hurt ...but hopefully his heart wouldnt drop more. At one point he said his legs ached and I took his feet and pumped them about 50 times and his heart went back to a normal 72!!! I was so shocked. The doctor said, yes that was why. Course I did ask WHY they didn't pump his feet when he came in to no response. He still had to have the pace maker. But I'm convinced. PUMP THOSE FEET before climbing out of bed. or getting off a couch! (Also lots of ankle rotations. get those feet as flexible as our spirits!!)
GOOD LUCK Jane. What a pain to have yet another thing. NOT FAIR!!! keep us posted. xo
OH has heart problems and regular ankle rotations are one of the exercises given by heart rehab.
That is both interesting and helpful!
Never knew this either~! I'm sure this will help the circulation in my legs to get that blood back up to the heart. I can easily add this to the day. I'm so thankful for all the information shared that just doesn't come up when you are at the doctor's office. xo
If it's Achilles, ice helps. I have gel packs I tuck into the cuffs of my socks when this happens to me, folded around the back and kept in place by lengths of ace bandages cut for the purpose. If you have no supplies, ice in a plastic bag works, too. 15 minutes on, 15 minutes off.
Hope you feel better.
It has been fine all day. Odd the pain was agonising and new.
Thanks for your help. X
No advice but just commiserations! Sometimes it seems it never rains but it pours. Hopefully you’ll be able to get this sorted soon! ❤️💐
Thank you Jackoh! My Kindle has broken - it won’t charge. This maybe incredibly helpful with the insomnia, ankles seem fine now.
Well maybe two positive results!! Keep on going on....you’ll get there! ❤️💐xx
Is it a Fire? OH's is very picky - slightest thing and it won't charge!
It is a paperwhite and annoyingly they’ve given me 15% off a fire as compensation. I think I may have tried to ram the charger in the wrong way up in the dark . It seems loose. I hate being beholden to Amazon. I have about 2000 books on there.
Blimey - I thought I had a lot! Nowhere near that class!
I just saw this, Jane....so sorry to hear this. I cannot describe anything I felt ever as 'ankle pain' but I will say the cramps sometimes make it impossible to move or stand. I attribute it to the steroids???? It is like a meathook...but passes eventually and I have yet to find anything that hurries it up. I see you've gotten some great input and hope it all helps.xo
Muscle cramps? Try magnesium supplements - or sprays or footbaths.
I do take magnesium....what kind of spray? These cramps start in my groin and 'rip' all the way down. I used to try to get up but now I just try to breathe deeply and think of some sandy beach with blue-green water and know that what seems like forever...is not. Luckily, I don't have these anywhere near as often now that I'm on a low dose....🤣😃that is if it is the steroids that cause them. Sometimes I just go with the flow...and turn it over !! I also have PAD...all these acronyms...I think it is peripheral artery disease aka poor circulation.
Sometimes you just have to smile. xo
That sounds really painful. Groin pain was my first PMR pain very disabling. Do you get much limb pain with GCA? I find it much less than PMR. Everything seems centred around my head. I find this makes it difficult to gauge how my GCA is doing at 30 mgs then suddenly my ankles gave way. I take Magnesium, K2, Vit D, vit B12 and Folic Acid to support my wild fluffy locks.
Other than the head, Jane, the only discomfort I had (and had no idea at the time) was a pain in the back of my neck and head, left side, and my left shoulder. This actually was occurring a few months before the headaches and head pain started. It felt 'deep' and I would just rub and rub it. Then the usual treatment for the headache until I realized it was a whole different head pain....and the journey began.
I have not had limb pain just those cramps which I was told was the prednisolone...before prednisolone, I was on 120 mg Prednisone per day. That was crazy and I was crazy. My GCA came out of the blue and was like an out of control train, all in the head. After 5 months I was on 64 mg of Prednisolone...and eventually tapering.
You are wise and strong. Heaven knows you've been given a plateful. I can mainly share what I have learned from the folks on the forum....listen to your body. You will come out the other side of this GCA, I know. Look at DorsetLady and even though I have a way to go (slowly tapering) I am out of the fog of the past year. I'm doing and I even baked a cake last weekend and enjoyed doing it!! It fell flat after I got it out of the oven...but I crumbled what there was and ate it on vanilla ice cream.
I guess, like yourself, it is in my DNA to make lemonade out of lemons. You've got this, Jane. xo💖
Thank you for this it really helps. Your cake sounds amazing.
Fatigue and side effects seem to dominate at the moment. There is so much guesswork with GCA, I feel all at sea, especially when I realise that my doctors are guessing too and lend too much credence to my odd stated symptoms.
I sent for 6 tea light holders in the shape of Mexican Day of the Dead skulls and some bright acrylic paints. I am all set to decorate them like you did with your rocks. Just a happy whim. My son returns from uni at the end of this month. He said “ So the house is going to be even more eccentric?”
I’m using same excercises and it’s working. Thank s
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