Chilblains

[Megan89]

I have recently been diagnosed with lupus, I'm currently under a rheumatologist due to having chilblain type symptoms on my toes. Has anyone else experienced this?

[kelpie21]

Hi Megan, am also having feet problems and have just noticed small lumps on all of my smaller toes along with tenderness etc. I did mention to GP about referral to Podiatrist, Paul from LUPUS UK recommended this also read their leaflet on Feet. My doc has not referred me but taken a toe nail sample in case any fungal problem. I have phoned a local Podiatrist and am waiting for them to get back to me as I feel their expert advice is needed. I do see Rheumatologist in a fortnight (this is first appointment after diagnosis three months ago) so am hoping he will help also. Will keep you posted

Regards

[EOLHPC]

Yes...I'm 63 and have infant onset lupus. my version of chilblains (permit) is the severe weeping type: very unpleasant.

But, over the decades, I have learned to manage this predisposition...and I'm sure my daily oral combined therapy lupus meds are helping to reduce both the amount of chilblains I get and their severity. At the very first signs of chilblains developing, I apply prescription topical steroid ointment. Otherwise I keep my hands and feet clean, well moisturised, I avoid exposing them to cold temperatures and I change my socks twice a day to ensure they are clean & dry

Belonging to Scleroderma & Raynauds UK also helps me: they produce a great magazine, and their Healthunlocked forum is great too

Otherwise, hereis a link to my fav source of info on this subject:

dermnetnz.org/topics/chilbl...

🍀🍀🍀🍀 coco

[Megan89 in reply to EOLHPC]

Thanks for the tips coco, Iv had them for the past 5 years pretty much constantly, Iv tried all sorts but nothing seems to help. They are mainly red and swollen which is difficult when choosing shoes etc. I'll take a look at the link thanks

[EOLHPC in reply to Megan89]

Am v much feeling for you: they are dreadful and make figuring out footwear very complicated. I hope you do find a way to minimise the trouble they're giving you

[starbook13]

One toe on my right foot. I think that's what it is. I'm going to see a new rheumatologist next week to make sure.

[Cann]

I get them on my fingers - very painful!

[Mifford]

In the winter yep - when I was at secondary school they were so bad the itching drove me insane with them and they were hideously bad. I often get them overnight too as I get too hot in bed at night and get nightsweats so end up sticking my feet out into the cold to stop it. I don't feel it at the time but they can be bad the next day. I was under the impression it was a Raynauds thing? I know the itching was always when they'd get cold/wet and then start to warm up.

Anyway my tips - there are funny wax stick things that people use for skiing that I found helped but can't remember what it's called and I now can't find mine typically. I wear uggs or sheepskin lined boots with no socks quite a bit, mainly indoors, as it stops my feet getting either too hot or too cold while letting them breathe. I know general advice is to avoid them but I find I'm much better when I use toe socks as it stops the toes running together. A few thin layers of socks are better than one thick pair and when you are warmer you can take some off to stop them getting too hot and sweating which can spark it again when they then get cold.

That's all I can think of for now but hope they help slightly as I know how miserable it can be.

EDIT: I think it's called a snowfire stick

[Tiras]

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Hi;

I know what it is like to have lupus issues with your feet. Because of lupus rashes/blisters I have had to go barefoot for the last 2 years. I know your issues are different than mine. There is not much advice I can give you with your issues, I Just want you to know you are not alone!

👣👣👣👣👣👣Tiras👣👣👣👣👣