Scleroderma & Raynaud's UK (SRUK)

End of my tether with raynauds

I have suffered with raynauds for 30 years +. every year i think its going to get better but this year not only are all my fingers going white but i am now getting orange spots on the tops of my hands. I am really at the end of my tether. I believe stress is related as well but i was once told by my doctor that the nerves controlling my blood circulation found under my collarbone also controls my eyes. Has anybody else heard this ? Not sure what to do anymore. Bought the battery controlled gloves from USA and they did not help.

8 Replies

I use heat pads that you use to go skiing with, but most of the time I keep my hands inside my jacket sleeves or close to my body. It is very painful and I feel for you but there is no answer that I know of.

I do have a brandy or vodka in very bad weather at lunchtime, just a small sip to warm me up, but never when driving. I also have soup a lot during the winter. Lots of hot tea!.


Do explain what you have done to make your Raynaud's get better. There is no cure, it is part of you; but there is much you can do to help to cope with it. You seem to be under much stress by it all and that is not good for you. You should have a programme of things to do. Tell us what you do and then perhaps we can help from experience.


Are you on any meds. for it,i have taken Nifedipine for years and manage quite well with this,as well as keeping hands warm of course.


I am still blessed to be able to do physical fitness workouts, it helps a lot with blood circulation. Even those I have fibrosis spasm attacks, I am learning to work them out a little sooner, endure them better, and to have less attacks than I did in the first 1.5 years afteran intense hospital stay and being on life support - the culprit is Scleroderma and the associated problems like CHF, PAH, Raynauds. Please try your best to keep your stress levels as low as possible, eat your meals on schedule, take meds on schedule, and be around positive people, encouraging people who understand your situation. Listen to your body, follow signs and equip yourself accordingly. I will keep you in my prayers too, Karyn. Oh, I from time to time when my hands are very cold I will raise my arms and hands - and 2 pairs of gloves go with me everywhere I go throughout the entire year, just in case.


some top tips for helping raynauds that i use on a daily basis are:

- dress warmly in layers (try to go for a thermal layer first on a cold day).

- always wear decent ski mittens (i got mine as a present and i know they were very expensive but i would never do without them now). YOu can put hand warmers inside them and keep your fingers wriggling around at the same time to keep the blood going.

- in bed i wear those really thick socks on both my hands and feet, because the bed is always cold when you get in it and when you do finially warm up they seem to just fall off in my sleep.

- sitting still is a nightmare for me as even that will often cause an attack so i regularly get up and run upstairs or go to the kitchen to make a warm drink which helps.

- when all else has failed and i have had a rubbish cold day at work i get home, have a warm shower put on my warmest pjs and snuggle up with a hot drink and my big chunky snuggle blankets with some rubbish on tv or a nice film (always makes me feel better).

- try not to carry heavy bags in your hands as that seems to make my fingers go (not sure why).

- most of all i think you have to think ahead, ie remember gloves (in summer is the time i may forget never ever winter), to check the forcast to see how cold and how much to wear, oreder drinks with no ice and be careful when you pick them up, put your hands in your pockets if there is a breeze in the room etc.

strangely it was hard to think of the things i do as i do them so automatically it comes without thinking.

I hope they help you in some way.


I forgot one :

- dont take any cold or flue remidies as there is somthing in it that makes rayauds worse (i found it out last year, and only some brands write it on the instructions). I work with children who are always full of cold and giving it to us and i must say it is really hard sometimes to not just grab a sudafed and be done with the syptoms of a cold but i learnt my lesson vlast month with that one.


Thankyou Kaz 321

I really appreciate you taking time out to answer my question


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