Raynauds, Schleraderma, Erythromelalgia.

[anitaranita]

I would love to contact other sufferers. If anyone wishes to communicate who is suffering from some or all of the above, I would love to chat with them.

[Lindaharmony]

I was diagnosed with Raynaud’s phenomenon over 25 years ago.
On several actions during  the winter I have had gangrene on my toes to the extent that amputation has been recommended.  I have successfully kept my toes all these years despite not having any detectible blood pressure.  
One of the ways I have done this is with hot Epson salt soaks.  I also have found that the toe warmers from Costco have been very effective in preventing the eruption from forming that usually turn into gangrene.  
I also was born with a form of club foot, with an extremely high arch.
I did not have a good reaction to the drugs that our usually prescribed for Raynaud’s.

Linda

[Brandi98225]

Um I was digonis with EM and I think I am might have Raynauds as well because even as a kid my feet would get ice cold along with my hands in the winter time. But in the summer watch out burning,redness,swelling,pain not only but shooting pains in my hands and feet. But funny thing is I not only have pain in my feet and hand but everywhere else and I have the worst attack with pain in my upper back that radiates to my chest so bad. I have to lay down sometimes its hard to breathe and talk. The more I talk the worse it gets I am not sure what that is about. But anyways both my aunt and my mom had auto immune dieases and pain its only my mom side of the family could I have something more then Raynauds and EM as well? My mom died at 52 and my aunt at 63 on my mom's side of the family they die not young like 20 years old but pretty young. And I have a tendcy to isolate myself because it hurts to go anywhere so I go out as little as possible sometimes I go to the store but to much walking and my lower back and everywhere else hurts. I finally got an answer for my EM but.....I had to look on the internet because my doctor was preplex and didn't know what was going on. So he gave me Neruton,ellival and they sucked *** forgive me for my language but they did. The neruton made things worse but I take Lyrica three times a day and Cymbalta once. I do however get headaches and sometimes get dizzy been doing it since I was 18 not sure what thats about what do you guys think.

[dixiegal_32]

I am 36 and have RAynaud's Phenomenon i think, havent had a doc check it out yet but plan to soon. My feet are all ways like ice no matter what i do , and they are hurting at the end of the day anyway, ( born with clubfeet ) . and my hands  and doing the white ,red , blue thing . and i try to stick them under water but it dont help that much , Getting frustrated with all of these ilnesses that have overcome me, and just want to feel better for once .

[JenB12]

I find the Scleroderma forums on inspire.com to be very helpful for support and advice on sclero and all of the secondary diseases that come along with it.

It's here: http://www.inspire.com/groups/scleroderma-foundation/

medhelp does not seem to have a forum specifically for scleroderma. I have found a lot of help, advice and support from the website I listed above.

[thyroidian]

Hi.
I have raynauds, and erythromelalgia, in my hands and feet.

Due to having Hughes syndrome/Antiphospolipid Syndrome.

It is a secondary to my illness, so i am told, but it causes problems, i hate having to put two and three layers on my hands and feet just to try to keep warm, my hands and feet are like ice boxes, but when i get the erythromelalgia they go very red and hot, they burn.

I think this is due to the vasodilation, which causes them to go bright red then burn like they are hot coals.

I hope you can share some off your experiences with me , and maybe any tips you have picked up along the way,

Regards

Nicola