holy moly it's cold: Bit of a shocker... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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holy moly it's cold

14 Replies

Bit of a shocker this week in the UK. I am sat at my desk in a heated office with my own little heater on max and hotties in my gloves and in 2 layers, still feeling cold! It is oddly reassuring to read we are all in the same ice cube tray.

My Dr has just returned from his holiday so I am waiting as patiently as I can (not very) for a response with a plan of what to do with all these new and not-so-fun symptoms.

Anyone else know intrinsically the only real respite would be to hibernate for a few months:

fatigue - check

cold - check

pain - check

yep, solves everything.

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14 Replies

The sudden break in the weather has been a complete shock. I have invested in M&S thermals - very fetching but also toasty! I'm also looking at snoods as Raynaud's now seems to affect my entire face now as well as my ears. I think the cold cereal is going to be ditched for porridge, then again I think I might ditch cereals altogether for the next wee while. Im quite anaemic so between not exercising and reaching for quick energy fixes, I'm acquiring a nice spare tyre around my middle (extra insulation?).

Have you had your thyroid and other blood tests checked? When my thyroid is low I can't get heat into myself!

Hope you feel warm soon...

in reply to

I have a slightly low thyroid and take levothyroxine but I am always cold like the dead :)

I am going to get my hat down from the attic tonight and some scarves :) I am putting mittens in every coat pocket - they're already in my car and 3 pairs in my desk. I think I need to relocate somewhere warm ;)

Lher123 profile image
Lher123 in reply to

yep we are going to try to relocate some place warm. I love being outside and I really hate knowing that every time I go outside I will have an attack.

Good luck staying warm!

graygirl1 profile image
graygirl1

I am aware of how the weather changes from one extreme to another so I am not shocked to see the frost this morning. I have been digging out my winter things for a while but I am really not looking forward to the next few months. I know how you feel and can empathise completely. I hope your doctor will be able to see you soon and will offer you the help and support you need. In the meantime keep yourself as well as possible. Best wishes to you and of course, all the RSA Forum "Family"

Graygirl1

in reply tograygirl1

I think it was the unseasonably warm October to a sudden drop - shocked my body :) I have been hoarding all things warm too :)

hall1982 profile image
hall1982

I've been the same. Achy and cold all over past couple of days. Sleeping in my dressing gown under a 13.5 tog duvet and still feeling cold. Seems to happen with sudden weather change but improves when body gets used to it.

Cardio workouts can help. I've found runnings helped loads. Not that I want to in this weather hibernation sounds better, but if I push through I do feel better for it after.

Ginger tea, baths, get your blood pumping and load of layers ;)

Hope your feeling a bit warmer soon.

in reply tohall1982

I read about ginger the other day! worth a try? I train 6 days a week regardless and completely agree it's the best possible way of getting the blood around :) I have been struggling this week as my brain has gone weird I feel really unfocussed and really exhausted. Still lifting, but it definitely affects my ability to do the technical lifts, which is frustrating and upsetting but hey, I've lifted through worse.

Kelga profile image
Kelga

I can't get appointment with my dr till 5th dec been told to take pain relif

in reply toKelga

Mine is in February but he calls me to review when we've changed something and we've just had me off the Mycophenolate after starting it to check it wasn't causing the new symptoms, which it turns out it wasn't >_< so I am waiting for a green light to go back onto them or something else. I hope he calls soon :)

Yorky profile image
Yorky

Hello, have you considered electrically heated clothing. I don't think I could get out of bed without it. At the moment I am wearing my electrically heated Skunkx slippers, the best purchase ever. I also have electrically heated body warmer and insoles from EXO. The thought of the next few months without them fills me with horror. Best of luck with trying to keep warm.

in reply toYorky

haha brilliant Yorky! I have Skunx slippers they're brilliant :) you must be a hive of EMF!

So far I have:

Skunx boots

Electric Blanket (overheats the fiancé but he endures, the poor normal-warmth human)

a wood burning/dual fuel stove (amazing but makes me want to sleep with the dog)

a small jack russell

gloves everywhere

fluffy steering wheel cover

hotties in my gloves/pockets (at my desk)

heater under my desk

car heater on 24

layers

thermal socks and wear huge boots to work

work fleece

super moisturiser

What I need:

get scarves and hat down from attic

hot water bottle for home and one at work

a normally functioning immune system

some more thermals

I have got my heater fan/fire hazard under my desk fired up this week (wasn't working previously) so I am warming up at the office which is definitely helping.

in reply to

Where do you get these 'normally functioning immune systems' of which you speak? I've heard of them but had written them off as mythical beasts! Now I feel hopeful!

AnnieMc profile image
AnnieMc

Yes, that time of year again, Raynaud's already flared up, time to increase the medication and keep warm, Mittens and socks to the ready.

cassandra101 profile image
cassandra101

Hi

I am a fibromyalgia body myself and we cant stand the cold either! I go for silk thermals from patra silks, merino wool under jumpers from katmandu shop, felted wool cardys, alpaca ponchos and pashminas.

Was in nepal one winter - now that was an experience - but there everybody wheres layers of pasminas to trap warmth.

I also go abroad to asia each winter - yes it helps loads but it is not a cure all.

Am here now - no fibro symptoms but have stomach parasite!!

Luck to all this artic winter - i will be back in uk unfortunately soon.

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