Skin Question

[JazPont]

I have read that people with systemic sclerosis should avoid hot baths.... why is this ? I’ve read a lot to avoid it but can’t find a reason why? Obviously I know the consequences of cold water but hot water ? I know my skin comes out in a horrendous rash after a hot bath x

[fairy56]

Hello JazPont, I"ve not heard of this, if you can find any information pass it on. It"s just I have an emollient prescribed, that has to be melted in hot water to bathe in.

[JazPont in reply to fairy56]

Maybe because hot water dries out the skin ? Hmmmmmm

[Hidden]

Oddly enough I was thinking about this tonight. I wouldn’t want to suggest the same thing applies to me because I only have a mild Raynaud’s secondary to a severe small fibre neuropathy with Sjögren’s.

My toes go bright white when in contact with hot/ warm water. I crave hot baths but did go through a stage where hot water would trigger unbearable burning throughout my peripheries for the rest of the night or day - depending when I took my bath. I was in constant conflict between the desire to warm up and the ensuing pain. For a while the pain won and I opted for tepid baths.

Nowadays the burning has switched to freezing neuropathy and I crave hot baths to get warm. In fact I feel ill if I don’t get my hot bath daily - it’s the only way I can reboot my circulation.

Also, due to Ataxia I can’t stand for longer than 20 seconds so showers aren’t very warming or attractive to me these days.

I know from my vascular/ Scleroderma doctor that our small nerves overlap with small blood vessels so hot water causes vasospasms to occur in the areas where small nerves have already died. For me this particularly applies to my toes. They go bloodless white with black patches in exactly the way Raynauds does but only when I put them in warm/ hot water. My fingers do it too with cold air - again this is the small fibre neuropathy for me.

I asked him if this was harmful to my tissue and he said “no not at all - it simply reveals the areas of nerve death you’ve suffered”

I don’t know if this is useful to you though as it could well be different for systemic sclerosis or more severe Raynaud’s to mine,

[JazPont in reply to Hidden]

Thanks Twitchytoes, very interesting to read !! Xx

[fairy56 in reply to Hidden]

Hi Twitchytoes, thanks for that, I"ve always thought I tingle because I"m cold when I get in the bath. From now on I am going to take note of my white and black patches, hey isn"t Ssc fascinating just keeps us on our guard, ha ha. Whilst I am here, I keep getting, what looks like a boil/spot that then turns red and lumpy and generally lasts a week or so, the recent ones are on the side of my face and my chin!! I should have had a hospital appt today and would have shown them to my doctor but because of the snow I couldn"t attend, I rang the hospital and they will send out another appt.

[JazPont]

It’s on SRUK and John Hopkins site, but I’ve read it elsewhere to ... I can’t send a screenshot photo to this thread but I’ve copied and pasted this from John Hopkins Scleroderma-

Things to avoid -

Scratchy fabrics such as wool

Rubbing alcohol or other products

containing alcohol (perfume)

Harsh soaps, detergents and household cleaners such as: Wisk, Lestoil, Arm and Hammer, Woolite, Cheer, Tide, Liquid soaps, detergents with extra power or brighteners, store brand soaps.

All fabric softeners’

Hot baths

Excess cold exposure

Vigorous exercise

Active or passive cigarette smoke

Fatigue and anxiet

[Hidden in reply to JazPont]

Huh? Half of that list is my entire day

[JazPont]

Copied and pasted from Scleroderma news -

Use oil-based creams and lotions after every bath.

Use sunscreen.

Use a humidifier at home.

Avoid hot baths or showers.

Avoid strong soaps, cleaners, and chemicals. Wear rubber gloves if you have to use those products.

Exercise regularly

[Hidden in reply to JazPont]

You see I think this list would apply to all with Connective Tissue Diseases - and probably most people with psoriasis and eczema too?

[fairy56]

A great excuse not to clean the house then, ha ha.

[JazPont in reply to fairy56]

Yeah right 😂😂😂😂 my hands would have to be decapitated before anyone else steps in and does the house work 😂

[Hidden]

I will post a collage of photos I took tonight for my first dermatology appointment on Monday to show you what I mean.

[MEW53]

Wish I could have a bath as unable to get in and out of the bath, I used to love a weekly soak up until 3 years ago. At least I have a walk in shower.

🚿

[Magsterly]

You mentioned using a humidifier. Should that be warm or cold vapor?