Chilblain lupus advice

[Diagnosis_Collector]

Hi I have a diagnosis of chilblain lupus (and SLE) but the chilblain lupus is really getting me down at the mo and with it being so rare I can't find any helpful information online regarding prevention and management. The only advice is 'keep warm ' but as I live in the UK it's impossible to do so. Given I have had this throughout the summer 'keeping warm' for me means living in 30+ degrees which is just impossible in the UK. I wear gloves whenever practical but that's seldom. I have to be 'bare below the elbows' at work, I live on my own and need my hands to just simply do stuff. (Getting something out of the fridge for example can set off a Raynaud's episode). When I'm resting I'm always in thick jumpers, hood up, blankets, heat packs etc. I wear thick boot slippers all year round, have heated blanket on my bed, thermal mattress protector, 13.5 tog duvet with a blanket on top. Extra hot water bottles when it's cold. House is always heated to a min of 21 degrees yet my hands are still cold.

The lumps are painful and ugly, they make using my hands hard to do as it affects my dexterity and causes pain. My core can be warm, my body toasty but my hands are still cold which then leads to the chilblains. When they do get cold they take forever to warm up.

Does anyone have any practical, sensible advice beyond the vague and unhelpful 'keeping warm'?

Medication wise I am taking sidelifil (definitely helps with reducing Raynaud's attacks but doesn't stop my hands being cold or the CLE), hydroxy, sulfasalazine and adlimumab (in the process of switching to rituximab). I've tried topical steroids but they made my hands even more tender.

[Gizmok9]

I suffer chilblains, I hardly never have them, I find it’s good to use real wool socks and fur lined boots all winter. I Have tried heated insoles too, I had ones that charge up and last all day which helped. We now have a house with central heating so no temperature dips has helped me. We Was on an open fire! And portable heaters in old house.

My hands don’t get as bad but I always carry a power bank hand warmer, it splits in two and i can fit them in my gloves at palms.

They don’t call mine chilblain lupus but I was diagnosed lupus before this really started. I do have heated blanket on sofa and bed, heated seat in car and heat pad at work on my chair. Also hot water bottle often used and lots of fluffy socks and slippers.

I Would recommend real wool clothes defo help keeps temperature up

[solo99 in reply to Gizmok9]

I don't have chilblains, but I do have raynauds and vasculitis. When I get cold, I go blue and loose my sense of touch in my hands and feet. I also have neuropathy, I don't want to list everything because I will bore myself as well as everyone else.

I've got hand warmers, silver gloves and so on. But as my skin is really bad my hands in particular are very sensitive, painful and the skin is very thin,

I purchased Heat Holders thermal joint warmers, currently £10,99

heatholders.co.uk/products/...

I wear these on my arms and my hands are free and warm. It seems that warming the circulation in my arms feeds into my hands beautifully.

I wish I could wear them on my knees, but my legs are too big!

I struggle will wool socks as they are hard to get with a comfort cuff and are too tight on my ankles. But warm slippers with a thick sole and warm lining make a great difference, but I see you have warm slippers already.

Hope you find something to ease your symptoms soon.