Who else gets 'caught out' ? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Who else gets 'caught out' ?

Rp321 profile image
11 Replies

So this lovely weather has been amazing and has put me in the happiest of moods ever! However this type of weather keeps catching me out - I bet I'm not the only one to have experienced the following in the past couple of days ;

- unexpected super market trip, had to grab a jumper out of my car which didn't even vaguely match my outfit oh and to top it off I only had my big fat fluffy mittens. Ne naw ne naw - fashion police on their way !

- my phone reliably ensured me it was going to be 27 degrees today so I'm dressed in short leggings and a long tip I have a spare cardigan just in case and my gloves (not getting caught out like yesterday!) turns out it's only 20 degrees and in my mind freezing in comparison to the day before so I am sun bathing in the garden in a big fluffy blanket.

- my car has been boiling - lovely! But because my hands are always on the chilly side I burn my fingers on the steering wheel so have to keep the windows open for a while for it to cool down before I can touch it.

Joking aside it's been a lovely few days where raynauds hasn't been a huge problem for me (in comparison to normal) but i find it funny how it likes to 'pop it's head up ' just To remind you it's still there.

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Rp321 profile image
Rp321
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11 Replies
Lupiknits profile image
Lupiknits

I made a rare supermarket visit the other day as a result of desperate longing for fruit and veg. I decided a treat to an M&S foodhall was deserved. I bundled up in thermal boots and jacket because these places are freezing to me. Out came the woolly gloves, too. Delightful young man on the cash machine saw my hands as I took off the gloves to get my stuff on the conveyor belt, and packed my bags. Sigh ....sometimes you just have to ignore the side-looks from those in t shirts and cropped trousers 😂

Yes, otherwise the higher temp has made the Raynaud's less of a nuisance. I don't have to build up courage to get into the shower!

As to burning cold hands, pl be careful. In the winter I opened an emergency handwarmer and clutched it happily. Result? A burn on finger I hadn't felt at the time.

cowhide profile image
cowhide

Yes, I had been absolutely sweltering all day yesterday (went on a lovely walk with friends) got cooked in motorway tailbacks on the way home and then we sat outside having a BBQ in the balmy evening. Then I came in and ours is a very cool stone built house. Got very cold and when I went to bed just could not warm my feet up - nearly ended up getting up for a hot water bottle but in the end resorted to hubbie's feet as an alternative.

The strange thing is that when I get too hot I'm sure I feel more uncomfortable than I used to. Can scleroderma affect the sweat glands so we don't lose heat so easily (weird though that sounds?)

in reply tocowhide

Not sure about answer last question because my Raynauds is secondary to Sjögren's. But I have same experience of loving the warmth - then deciding to leave jacket in car and gloves at home and realise my mistake while walking through a large garden centre with air conditioning and a sudden breeze outside. Could barely stand in queue with hubby and a large rose as the chill ran through me and my toes and fingers started changing colour. Then home and stupidly ran a hot bath to warm up. Now extremities are burning still - 3 hours later - lying on top of duvet with window wide open and rain pelting down outside. Soon I'll be cold again - need a proper heating engineer to revamp my thermostat methinks!

Walked to the hairdressers in a tshirt yesterday and it was a lot chillier than expected

My husband bought me a fluffy steering wheel cover which protects me from winter cold and summer scorching :) with the added bonus of making my car look like it belongs to a 19 yo boy 😎

MilkMaid profile image
MilkMaid

Hi RP321, I think we can all get caught on the hop with this sort of weather. Cold hands are very effective at cooling a hot forehead though! I went for a massage last week and the lady was so concerned about my cold feet that she took the arterial pulse in the ankle!

I don't know if Scleroderma affects the sweat glands, this sort of weather I can be drenched in five minutes, must have gone through three clean dry shirts on friday although I was working hard silage making. I have noticed that I need to drink a lot more fluids - even in the winter when it's cold so perhaps we do dehydrate more?

darkdreamer profile image
darkdreamer

I went to visit my mum and took my cardigan off in her room because it was so warm. However, I forgot to grab it when I left and had a moment's panic when feeling chilly outside and not finding it. Rushed back up to her room. Sigh of relief when I saw it lying on the floor. The thought of a long journey home without a cardi filled me with dread.

This morning walking to the gym, I still lost the circulation in my fingers despite having a hoodie on. People think I'm mad when I say I'm still sleeping with a 13 tog duvet over me.

Rp321 profile image
Rp321 in reply todarkdreamer

I still have my 15 tog duvet on 😂 not sure I even have a thinner one

cobr1 profile image
cobr1

hi, i get caught out as well, put factor 50 on but still look like a lobster and come out in great big lumps - not a good look !! - so painful

slothpie profile image
slothpie

I always get way worse symptoms when its warm out! Think it is just all the changing around from hot to cold! One minute I'm so cold and my hands are flaring, then the next my legs and feet are burning!

GGhere profile image
GGhere

I can identify with you 100% Rp321. I so love it when my car has been sitting in the sun and when I get in it feels so hot in there I can get warm all the way through. Everyone else is gasping but I love the cosy warmth of it. Then in the supermarket I suffer just walking by the fridges and freezers and have to do that bit quickly. Do you eat ice cream? I've not touched it for years as after I've eaten it I can feel the cold inside me for ages after.

I worry about the fashion police too (nee naw - nee naw) I can be dressed for the warm weather looking fresh and summery and then have the need to put my gloves on. We Raynaud's peeps are not a happy lot.

Rp321 profile image
Rp321 in reply toGGhere

Ice cream is the worlds hugest treat and it happens maybe twice a year. It's great because other people will be happy in the sunshine and get an ice cream from the van. For me getting an ice cream from the van in the sunshine makes me literally extactically happy - other people don't get to feel that extra happiness that we do :)

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