Hot feet

[carolBF]

Morning all

Happy Father’s Day in the uk,

I have a question about feet,

the other day I did some exercise I swam for 40 minutes then had two short walks, ( my feet were very hot) this was enough exercise to have another flare all over my body, 😢

This is very disappointing as every time I do anything to help myself keep fit my body stops me.

Now at night time my feet are very uncomfortable & on fire I have never felt this before and have to soak them in cold water for ages before I can sleep.

Before all this 2-3 weeks ago

I had called the doctor after my last flare from doing C25K jogging and she arranged a blood test

My ESR levels was up from 15 to 28

She told me to take 10mg steroids for a week then 9mg for 3 days then 8mg for 3 day then 7mg . This is what I have been on since last Sunday

Is the hot feet a side effect from upping my steroids from 5.5mg to 10mg and coming down quickly. Or just trying to exercise to soon after last flare.

At the moment I am 51 and feel like I did at the beginning 91.

I feel like it’s always a constant battle because if I sit around after work each night that’s not comfortable on my hips and if I go for a walk I am uncomfortable I can’t win.

Any advice very welcome

[PMRpro Ambassador]

I think that you need to pace that exercise a bit! 40 mins of swimming OR two walks - but not both at first.

The trouble is that your muscles are intolerant of acute exercise - you have to train to get back the old level. The pred relieves the inflammation and the symptoms - but the actual disease process is unaffected and chugs away in the background, attacking the muscles in much the same way as flu would. It is possible to train them to cope with more - but you can't rush the rehab process. The muscles are damaged during exercise, forming tiny tears between the muscle fibres which have to heal in training to become stronger. That is why the rest time is important at first. And if you do too much, the muscles become very sore, taking longer to heal again.

With walking (if that is all you were to do) walk a distance you know you can manage on one day and time that. Next day rest and see if you feel OK with no muscle pain. If you are OK, halve that total time and add 1 minute. Walk that far out, the same back - rest the next day and assess. Keep doing that until you get to a distance that you can feel the next day - then stay there until you can no longer feel it the next day and then you can add time or intensity/speed - not both at the same time. It sounds slow but you will be amazed how quickly the time mounts up!

The same with swimming - small amount to start and build it up. Not sure if you could alternate one day walk, one day swim but I certainly wouldn't at the start. The rest day is crucial at first, Then you can graduate, doing one activity one day and another that uses different muscle groups should be OK - but again start with small amounts of both first and then do more on the "exercise" day and less on alternate days.

Nearly forgot the hot feet!Does anything here fit?

nhs.uk/conditions/erythrome....

[carolBF in reply to PMRpro]

I will try this with my exercise thank you

[SheffieldJane]

I experience bright red burning feet in bed at night. I have just been tested for steroid induced diabetes ( can be a sign apparently). My feet are very dry and peeling, sometimes Psoriasis appears there, no where else. Alcohol is a trigger, even one small glass of wine.

[carolBF in reply to SheffieldJane]

Wow this makes sense I have diabetes and I did think it was worst with a glass of wine, I can definitely live without alcohol.

I tested it tonight I was fine then I had a glass of wine and my feet started burning.

Thank you for all your replies

X

[SnazzyD]

Are you sure these are always flares as in increased autoimmune activity? I have GCA only but if I over did exercise, especially repetitive my muscles became strained. I do think it was not PMR in the way often described, but a susceptibility to muscle damage. When I say exercise, I mean not a lot above a slow walk for 3km and no weight, so no watering cans of water. This was awful having been very fit and sporty prior to diagnosis. Your exercise level is stratospheric compared to mine and you work as well.

[carolBF in reply to SnazzyD]

I can’t exercise all the time but I really want to. I Ben after gardening I have to lie down.

My PMR has responded well to steroids but I can’t get lower then 5.5mg. I have bought the book by Kate Gilbert and I have text book symptoms

[Purplecrow]

I use an ointment called mentholatum (in US). It cools and moisturizes my feet, and helps my hot feet. It's an old remedy for chest tightness associated with colds, is sold over the counter, and has no Apparent side effects.

Might be worth a try.

[carolBF in reply to Purplecrow]

Thank you