I just joined and have never spoken to or met another sufferer of Raynauds.
I get Raynauds quite badly in my fingers but have not tried medication - I have just put up with it and bought lots of gloves. Later this year I am traveling to the Polar circle and really don't want to get frost bite. Any tips would be welcome. Can you just take medication for a week while you are somewhere cold and then stop it?
Hi I suffer from Raynauds although I've never had it properly diagnosed only by a doctor I used to work with. I've had it for years but it's getting worse, I'm now 67. Yes there are drugs you can take but I've tried to avoid doing that up till now. You will need to discuss with your GP whether you can take a drug for a short period to cover a holiday. I would also buy thin thermal gloves and socks to wear under a thicker sock or glove, Rohan sell some good ones but there must be other companies that sell clothes online for those weather conditions. Also there's those heat pads that you can pop in the microwave, if you will have access to one, and wear in your gloves, that heat last for quite a while. I went to Iceland in the winter a couple of years ago and did the above and was fine, not the drug though, good luck and enjoy yourself.
It is perhaps possible but you need to be vey well equipped. Anne Maudsley, the founder of our organisation the first to raise funds for research, did something like that. But she was well equipped and advised. I suggest you contact the Raynaud's and Scleroderma Association and your GP.
If no microwave you can buy hand warmers to pop in your gloves that you massage a bit and they just heat up. I use them and find them good. They are in Boots. Not eco friendly so I just use them when I have no means of heating. Enjoy the trip!
Definitely take something like HotHands handwarmers or whatever brand you can find, get very plushy, lined, thick mittens, and I would also buy a couple of pairs of SmartWool socks. I started using them about 6 months ago and the temperature regulation is better than any others I have tried. And of course keep your overall body warm, too as a general chill can trigger RP even if your hands aren't that cold. Have a great trip!
My kit for cold weather outdoor activities includes thick lined mittens (2 or 3 pairs at least so you can keep one pair warm inside your jacket and swap over if the ones on your hands got cold or wet), 2 or 3 pairs of socks layered, really good boots - lined leather, Hothands hand warmers in the mitts or pockets and also one in each trouser pocket as that helps warm blood going down the legs. Regular hot drink or food e.g. soup in a flask also essential. Plus all the usual thermals and hat. I am thinking of a trip to see northern lights and drive huskies through the snow. With plenty of spare gloves I think it should be possible. Good luck.
Oh I forgot to put on my last post that my consultant prescribes me sildenaphil for raynauds and you can take this as required. It gives me headaches so I only use when it's really cold.
I take Nifedipine which really seems to work. Also I have battery powered electric gloves that really work well. You have to get good ones and they are not cheap.
I have some gloves too, from Blazewear.
Can you just take Nifedipine as and when you need to? For example on a one off cold day?
I take Nifedipine every day - that is what is recommended. Not sure if it would work if taken as needed. I doubt it. I do not have any side effects.
I had the same concerns when I went to see the northern lights in Sweden. For me it didn't turn out to be as much of a problem as I thought it might. We were provided with appropriate outer clothing and footwear as well as gloves. And as a result I had less trouble than I do I the average supermarket.
Suggest you check to see what specialist clothing if any is provided. I enjoyed the scadoo rides and the husky driving during the day without a problem. Being out at night watching for the northern lights was a bit more of a problem as your whole body gets cold but everyone else found it cold after a while too.
Good luck hope you have fun.
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Positive Nail Fold Capillary test and Raynauds
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Feeling the Cold Snap
