Scleroderma & Raynaud's UK (SRUK)
6,785 members3,210 posts

Feeling the Cold Snap

Well it's that time of year and here we go again , layers upon layers of thermals and still the cold manages to eek its way into places on my body I hadn't realised existed !

Last night I walked into the living room and sat on the couch , as I did there was an almighty crack , my husband looked at me and jokingly said " what have you broken now fat ass ". "That my darling was the sound of my knees and hips all cracking at the same time " "Bloody hell sounds like you busted something "...just another delightful evening of raynauds....

I woke up this morning feeling quite good , that was until I looked in the mirror , I am so swollen I could easily be mistaken for the wife of the Marshmallow man in the Ghostbusters movie , my face is almost twice its normal size , I know that it will gradually go down during the course of the day , but all the same I'd rather be eating marshmallows than looking like one .

My right hand could easily be mistaken for one the foam hands you see at an American baseball game ,, its twice the size of the left and despite taking my medication doesn't look to be thinking of getting better any time soon , the chilblains have turned to ulcers and all of my joints are a pretty black colour ....( Before anyone answers this saying go in for an iloprost treatment....I can't ! five days away from home last Christmas had such a knock on effect that I'm never going to do that again ,no matter how bad I feel )

Anyway my fingers are starting to lose all feeling so it's time to stop typing and put the gloves back on ...all three pairs of them , and for me to wish all of you a Very Happy and Healthy ( as much as possible ) Christmas's hoping 2013 will bring some new advances to help us manage our condition .

5 Replies

Hi TJme

I know what you are feeling, my feet swelled so much last year they burst the skin off, followed by bursting all my toenails - every single one of them came off. My feet, toes, ankles, knees crack and crunch when I walk, sit, laying down even. I did try Nifedipine for four weeks but in fact it exacerbated the problem so wont be doing that again. Was prescribed Codeine Phosphate for the pain, it doesn't do anything for me :(

I wear layers in the house and even more layers when I go out. Going to bed I'm a marshmallow man, I wear thermals, pj's, two pairs of mountain socks, hot water bottles, two duvets and my feet are still cold, they actually NEVER get warm.

My rheumatologist is doing more tests as I also have neuropathic pain. Want to eliminate anything else and 'might' have the iloprost infusion but putting it off until other tests are done first.

Merry Christmas and a Happy New Year, good luck and best wishes. xx


I did Iloprost earlier in the year when I was in hospital for my Necrotic toes, got really sick by the third dose and it only alleviated my symptoms for about three weeks. I know people swear by it but I don't think it is for everyone. But I would recommend trying it if you haven't as for some people it is a wonder drug and helps them immensly. That was why I tried it.

I am sitting here now debating on putting the heat up or more clothes on as my fingers and toes are slowly going numb from cold. lol I have friends visiting from America but I am unable to go out much as it isn't worth the suffering I will have for at least a week after. My legs have gone all tight and swollen again, last time this happened I started leaking out of my leg. Now that was weird! All the weird and wonderful things we get with this disease, well I wouldn't call them wonderful but definetly weird.

CardiffLady, I use Tramadol 50mg tablets, for the pain combined with 500mg Paracetomal. When my pain is bad I take two of each, every 5 hours and it helps me a lot. So far it has knocked out some of my worse pains and I have had some bad ones with my toes dieing. And I don't get as bad side affects as with regular Codiene. I also take a stool softner when I am taking anything with Codiene and this helps prevent the constipation that always goes hand and hand with that for me. I also drink loads of water.

I hope you all get some relief and a bit of respite for Christmas, I am planning on being the Michelan Man for Christmas as we are going to a relatives house, and no one keeps their houses as warm as I need them to be. Had someone comment recently on a photo that was taken of me holding my new nephew, they asked if I was trying to look posh wearing gloves or was I afraid of baby germs, I just smiled and said no that I need them to keep my fingers alive. They just looked at me like I had lost my mind, which is the usual reaction. I find it difficult anymore to go into detail with people about my illness. They look all sympathetic and uncomfortable, so now I just nod a lot and change the subject 8) That is why I like this site, it is nice to just say oh its my Raynaud's or my Scleroderma and everyone understands and you don't have to turn into a medical journal all the time. Stay warm and safe everyone!


This all sound so awful my heart goes out to you.

I would like to suggest that you load up with multivits and Vit D3 - the best that you can afford. It has worked for me.


Have you ever asked them to check your thyroid, just in case it could be contributing to the raynauds? I am sorry about how cold your feeling. I get the inner shivers and cold nose , numb fingers and toes (on and off).

So swelling can accompany Raynauds? I didn't know that ?

Bless you and stay warm. If you can afford it I would buy a battery operated warming vest and wear a hat inside the house also it really does wonders to keep the heat in your house.

God bless and continue being beautiful.



Sorry for the typo, I meant to say keeps your whole body warm. I forgot to mention I would start working your way up to ingesting 3T of extra virgin coconut oil (do research on the web it is safe). It will help your metabolism and eventually you will feel warmer on the inside.

God bless and continue staying beautiful,



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