Hi I have been diagnosed with scleroderma & raynauds & find no matter what the weather I seem to b in constant discomfort & pain

[Justjac]

In my fingers . Is this normal & any thoughts or suggestions as I'm new to this & finding it difficult to cope!

[Jean15]

I have changed my diet to change my body chemistry from acid to alkaline-most vegetarian and raw. By mostly vegetarian but we add white chicken and fish from time to time. My energy increased, inflammation down, stiffness and pain decreased. Much improved. At the same time I have had lots of prayers which have guided me in my search for a diet and effective treatment. I have 900 mg clindy iv drips monthly and every six months have 2 900 mg clindy iv drips daily for 5 days.

[AHM42]

I have had both Raynaud's and scleroderma for over 35 years and have learned to cope on a daily basis. Doesn't mean I don't have any problems as I do but it is learning to cope with them. If you would like to chat to me on the phone please call the RSA on 01270 872776 who will put you in touch with me.

AHM

[Kuhu]

Have you got the hand warmers from RSA? I've seen others in local pharmacies, but I think the RSA ones are the best!! I usually carry one or two with me and when my fingers "die" I use one. I also wear fingerless gloves, which I make myself! These are just small helps. Add them to the other very helpful replies.

[lindyanne]

Avoid air conditioning at all costs! Just a tiny waft if it is enough to set me off so shops, waiting rooms, planes, etc all need lots of forward planning. Even getting something out of the fridge momentarily can cause a problem, so I agree, it's not always weather related, just small temperature changes within your home can be tricky. Also, pressure on the hands/fingers, even slight such as opening a packet or jar, can set it off so make sure you protect your hand with something first. Wrist warmers are really good, they need to be snug but not tight. The silver gloves from the RSA are brilliant I've just ordered more. I wear them all the time, indoors and out, if it's a cool day. The changes in your skin can be uncomfortable for a while (I have been diagnosed for nine years now with scleroderma) and sometimes almost feels like you have string tied round your finger preventing the blood flow, weird description but accurate! As time goes on you'll find you will get used to the changes, and warm paraffin wax treatment although it's time consuming is very soothing. Hope some of this helps.

[lifeforce]

Hello, Along with the tips from our fellow sufferers make sure you get on an antidepressant like Zoloft,ect. Your mind will need a coping mechanisim over the years. I have had Scleroderma/Raynauds for 13 yrs. Best of luck!!

[PatientX]

I see that you have already received a number of replies with various lines of help. Remember that we are all different in the degree of suffering and the extent of the problem. You may try several before finding what is most suited to you. The best advice is to get a referral to see your local Rheumatology Consultant as soon as possible. I am at the stage where oral drugs are no longer effective but thanks to my excellent consultant I am receiving an intravenous drug which for the past 10 years has improved my quality of life. I also take obvious precautions like wearing heated gloves in the winter, I don't go into supermarkets which have loads of cold isles, I wear more layers even in the house and I also warm all my outdoor clothing before putting them on.

[zenabb]

Yes, it is "normal". Same with me. Don't stress your hands too much. Use gadgets to do hard jobs or someone else.

[Jensue]

Like everyone else who has Raynauds & Scleroderma it a process of trialling various products & medication to see what works for you and trying to avoid those situations which trigger attacks off.

[Justjac]

Thank you to everyone who replied most helpful. I have tried various gloves but not the silver ones , so will have to try them . The skin on my finger tips feel like it has gone thin so touching anything feels sore & hurts , even when the circulation seems fine ie not changing colour ! I do have an appointment for a 5 day infusion so hopefully that will help.