Severe Raynauds

I have severe raynauds secondary to scleroderma. The raynauds has affected my hands, knees, and feet. I get arterial ulcers on my fingers and toes. I live in Michigan. In winter I wear heated insoles in my boots and heated gloves. This is not enough even though my heaters have three different temperature settings and yes I've been burned not to notice till later. Please tell me any boots, heaters, sock liners, gloves liners etc that anyone has had success with for winters. I also use these devices intermittently through summer as I cannot hand the breeze outside or air conditioning.

16 Replies

  • Sounds to me as if you are doing as much as possible. The gold standard treatment in the UK is an iloprost drip usually given over 5 days in hospital - have you had this?. The one thing i have found of benefit to my raynauds is cutting out all dairy from my diet, i have noticed an improvement although not a cure. Take Care

  • What is the connection between dairy and Raynauds please?

  • I actually take in very little dairy! No I have not tried iloprost. Docs here don't seem to do a lot of anything unless its detrimental then its too late.

  • We moved to NW Indiana about 4 years ago and the winters have been tough. I also get the digital ulcers on my fingers and toes but try to recognize the early signs and stay proactive in caring for them. I have been taking nifedical XL to increase blood flow to the extremities and try to stay warm (which is tough during Midwest winters!). I also try to keep my fingers well-moisturized by coating my cuticles with A&D every night. Good luck and hopefully you have a rheumatologist who will be aggressive in helping you out. :)

  • My rheumatologist is actually at University of Michigan and he's not proactive :(

  • It seems to me that you should give Iloprost a go. I have it regularly.

    I have been given an electrical throw in faux fur to put on me when I am seated and another one for the car. It has a timer and a heat moderator. It is a great help. I have alsofound that in an emergency a little amount of a strong alcohol helps.

  • I will try to push my rheumatologist for this iv drip. Thanks for electruc blanket idea wonder if any take batteries and rechargeable at that!

  • Hello, I use EXO heated insoles in my boots for about 9 months of the year. Having these for my feet means that I can actually go outside. I have 2 pairs, one I use in my outdoor boots and the other in little bootee slippers, they have rechargeable battery packs. They are brillant. If you put EXO heated clothing into a search you should pick them up. I think they were orginally developed for the Canadian police motorcylists, so I would think you would be able to get them in the USA.

    Good luck.

  • I'm taking Adalat for the Raynauds up to 9 a day depending on the weather. I think they help but of course its not a cure. One of the things I do when I'm really cold, despite the heating being on, I put a towel on the heater and when its really warm wrap it around my shoulders. I have a heated faux fur rug as Zenabb stated but I don't go out much especially in the winter. Just can't bear the cold and can't lift the house keys from my bag when I'm so cold. I keep a pair of oven gloves beside my freezer. Just thinking about it makes me cold. :-)

  • Any suggestions to locate battery operated glove/glove liners for a female with short fingers? I am reluctant to order over the WEB because I can't see them or try them on. I need them to fit well and not be too bulky because I have to make dinner using them and have trouble holding on to things if they are too bulky or the finger tips are too long.

  • Hi it's faith again. I forgot to tell you, I bought the extra small size by mistake and that size would probably fit you well.

  • Thanks, I'll remember this when and if I find a battery operated pair to order.

  • Silver glove liners have helped me. I can't remember where I found them on the web, but I use them in the house all the time and in the car.

  • I have a couple pair of the Thermolite glove liners, BUT these don't help when my finger tips are so cold and white and hurt. I really need "heat" to warm them up first , then Thermolite gloves help keep them that way. I have been putting them on sooner, before I get really cold, but it is SO hard to make dinner with the gloves on. sometimes I have to handle food with bare hands and then they get too cold . I sometimes have to resort to putting my fingers under the hot water tap until the feeling comes back, then put on gloves to keep them warm. Guess I will have to give in and contact these On line places and try to get more info about them before ordering. Thanks for your suggestions.

  • Hi guys, I may be able to help. I spoke to this lady tonight who lives around my area, she is a sufferer and works on behalf of the Raynauds org. She told me there is a new hand warming device that costs approximately £30 and lasts 7 hours and can be charged just like a mobile phone. Nice and easy over night. She is sending me an information pack which has such details of the item. Apparently is called a hot rock but I haven't found it yet. As soon as I know I will share it with you all. Please also I have secondary Raynauds due to Schlorderma and worries me a lot and is painful. Could you tell me more about this drip please?

    May thanks and I am James by the way, new today:)

  • Yes they sell them on amazon hot rox £30. Looks good. Mite av to purchase one of these myself. Thanks x

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