raynauds pain 🥶

[PBMB]

Hi all ,

This condition is slowly making everyday life quite difficult 😞

I have tried all the handwarmers in the world and some medication and nifedipine- but can’t cope with the side effects . As soon as I get a little cold my hands ‘go’ and the only thing that helps is running under the warm water until they turn blue / purple / tingle and feeling again !

However I feel like I can’t actually do anything with my Hands but also it affects my mental capacity to think properly until the feeling returns making my job as a tutor very difficult particularly now the weathe is cooling .

just wondering if this is similar for many others and what has helped 🤷‍♀️

Many thanks 😊

[LadyTrundle]

Yes - this sounds familiar! Have been struggling for years. Even now, in September and with the central heating on for 2+ hours, I have my heated glove on the worst hand. So heated gloves have helped me the most, and learning how to voice-activate my smart phone as much as possible. I can use a keyboard with the gloves on, so I'm also lobbying hard for app developers (especially health-related apps) to always have a desktop version, as I can't use their apps in winter!!

I do adjust to nifedipine after a week or so, and last year started losartan potassium as well which seemed to help without the side effects of nifedipine. And eating lots of turmeric, hot spice, garlic etc.

[PBMB in reply to LadyTrundle]

oh tell me more about the turmeric … does this really help ? I’m not good with spices but imagine you can get this in other forms . Definitely worth a try !

Yeah I’m going to try nifedipine again . My doc has given me the modified release to try .

I know I worry it’s bad now in September too 🙈 so you have one hand worse than the other mine appear to be the same .

Thank you

[LadyTrundle in reply to PBMB]

Well, I take all sorts of recommended things in the belief they"l help but haven't personally done controlled trails...! only thing I can say yes or no helps is direct application of heat. but the losartan and nifedipine combo last winter did seem to help me be more resistant. and yes, modified release!!!! years ago when I started on it the gave me the other .... kept falling downstairs it lowered my blood pressure so much.

btw - as gloves make being accurate on the keyboard harder I currently have heated gloves on and a soft-ended pen in each hand to type. I was only ever a two-finger typer anyway, so this is a breakthrough! All because you asked a question this morning :))

[Montaza]

Hi PBMB, I am experiencing similar problems with my hands. I put hand warmers under my gloves (they last up to 10 hours, buy them from the chemist) but my hands are pretty useless. I have ulcers on three fingertips which are very sensitive to touch. My hands turn purple very easily. It doesnt have to be too cold, just a change in the temperature is enough of a trigger. I use Nifedipine also, 30mg a day but not sure its that effective. Have tried illoprost infusions in the past which requires hospitalisation which works for a while. However its quite a procedure for me as they battle to insert a canula as my veins are hard to access. Ive heard the key is to keep your torso warm and put gloves on before you step outside. Some people take Sildenfal however where I live they only provide it for patients with ILD otherwise it is quite expensive.

Overall these handwarmers from chemist work the best for me. Once exposed to air, they last for hours and they are discrete. They are called exotherms, small sachets full of iron oxides I believe that heat up when exposed to the air.

Good luck with everything. 😊

[PBMB in reply to Montaza]

Hi ,

Thanks for the response I have tried similar hand warmers but they still don’t stop the effects but probably slow it down slightly .

Yeah I feel like any slight change in temperature and my Hsnds are gone 😕

I Also have issues with cannulas and taking of blood also !

Keep warm 🙌

[Montaza]

Thanks 😊 You keep warm too, especially as you're heading into winter.

[PoodlePup]

My daughter bought me a Therabath from Amazon recently and using that seems to help for a while. I wash and moisturize and then dip my hands into the warm wax 2-3 times, blow on them a bit in between dippings to harden the wax and place them quickly into a plastic bag and then wrap that in a fleece blanket. to let the warmth sink in. I do one hand at a time to make it easier to peel off the wax. The unscented wax is my favorite due to allergies.