the number of EM'ers developing Raynauds is alarming. Its co existence is well established. As a sufferer myself , coping with either ends of the spectrum is an intolerable double whammy. What types of minimisation tactics do people use?
Have attached research to start the discussion
Wishing you all a 'comfortable' night
Thank you for the research Mads.
It is beyond frustrating and painful walking the tightrope of EM/Raynaud's mix!
I have found it helpful to cut the tips off of a pair of gloves so you can put just the tips on the fingers effected for a little added warmth without warming your whole hand which inevitably causes my hands to burn. This is more of a preventative measure when you can feel it starting. Once the full on white numb fingers start the only thing I have found that helps is Sucking on the effected fingers. I know that sounds gross but just wash your hands first and you will be ok! Just pretend you are a baby again and sucking your thumb! It gets the circulation going again with the suction while providing warmth just to the area needed. For the feet I have found rolling socks over so they only cover the numb toes and not your whole foot sometimes doubling up so you have a couple of socks rolled over your toes without warming the rest of your feet.
I don't recommend attempting to suck your toes! HA!
I hope this helps.
just adding myself into this discussion thread. Am soon to see Dr Lunn at the Queens Square consulting rooms and will refer to some of these papers. Thank you
Please let us know how your appointment goes ajh . I love that we have the ability to learn from each other. Every time someone comes back with something new from their doctors it's as if we all had that appointment!
I hope this next appointment offers up some help for you.
Great news ajh.
Good luck with Dr Lunn. I have heard some good reports, so fingers crossed.
We are all thinking of you
As Alina says, letting us know how your appointment went, and Dr's names helps other EM'ers
The reason I found about EM was I went to a dermatologist during my first major flare-up and she saw one or more blue toes. In researching the Raynauds that she identified was how I found about EM. This flare-up was probably precipitated by a bike ride where I was caught in a 20* F. temperature drop, sudden severe wind and heavy rain. I had to ride 8 miles in this and another rider brought me a coat from his car because I was sitting with my group in Starbucks shivering violently. I had had hints of EM previously after long bike rides in hot weather and just thought, "My shoes are too tight, my socks must be binding and chafing or etc." With my daily magnesium supplement I seem to have the fiery toes down to a minor annoying sensation at worst. I did have a little more of a flare-up a couple weeks back when I misjudged the temperature and rode my bike to work 15 miles with open sandals and it was much colder outside than I had anticipated.
It seems my toes want neither too cold or too hot. And, yes, EM and Raynauds are linked in my case, kind of like circulatory regulation overshoots its goal in either direction. (??) We shall see what August in Texas brings!
Don in Austin
I am glad you have found some relief with the magnesium Don in Austin, Texas.
I refer to having the two as having to walk on a tight rope all day every day. My husband used to always try to make it as cold as possible to help my EM and I would have to thank him because I know he is just trying to help but beg him to stop! There is a fine line for me of about 5 degrees between causing one or the other.
Something I find interesting is I saw one of the few EM specialists ( no names please) In the US about 2 years ago and he said he thought my Raynaud's / pernio/ Levido reticularis was my fault from cooling myself too much. I tried to explain that I actually had the strange cold hands and feet before I ever had a bad EM flare and I don't use ice. I just keep my house about 63 degrees and surely that isn't causing it. My husband lives here too and like I said this came on just a few months before the burning. I think it is important we make our doctors aware of the Raynaud's too as an ongoing problem if we have it because it seems to be forgotten often because it is usually less of a painful problem than EM.
After being on this site and seeing so many others have this complication too it must fit into the puzzle somewhere and not just be a coincidence or caused by cooling tactics. It made me feel a bit put off as it felt as if he was saying I was doing it to myself. I just think more awareness of the two coexisting might be helpful in finding the answers to how to help fight it.
Thank you for letting me get that off my chest!
Be well and enjoy your bike rides. I do miss that.