living with scleroderma

[patsyb]

i have only just found this site, it is nice to know that i am not alone, with this condition,and hopefully that there is alot of useful imformation out there. At the moment i am suffering ulcers on my ankle, and a finger nail which is taking ages to come off. i have heart patches which i put on my hands to help the blood reach the end of my fingers, they work wonders

[zenabb]

Welcome friend. What are heart patches?

[dordle in reply to zenabb]

Do you think its 'heat patches'?

[patsyb]

Thank you for the welcome

It is patches meant for the heart, I put half of one,on each hand at night

because the body temp is lower at night. They open up the blood vessels, allowing the blood to reach the end of the fingers. They work for me, even through that horrible winter we had last year. I don't use them when the weather isn't too cold. No they are not heat patches,

[patsyb]

I should have added that they are on prescription, my doctor prescribed them as a last resort.

[zenabb]

Thank you Patsyb. I am glad they work.

Best wishes

[Rosamylio]

Hello Patsyb, I am also new to this website. So glad I found it. A lot of useful information is on here. I have had scleroderma since I was 10 but I wasn't diagnosed until I was in my 20's. This is the first support website that I have been on and its been great =)

[patsyb in reply to Rosamylio]

Hello Rosamylio. Welcome, I have already found this site very good and informative. Something which all us sufferers really needed, I have had scleroderma for over 12yrs. I am suffering from the crest syndrome.

Good luck

[joba]

I have also had ulcers on my ankle, which finally healed after 7 months. I had to see a special wound doctor. My ankles swell and the swelling causing the skin to stretch too far and opens up. I have been wound-free now for a couple of years and happy to say so! It was a very painful time and I had to wear special "boots" and tried all different medications. A medication my doctor called "liquid Jesus" at $700 a tube finally did the trick. I have to wear support stockings to help with the swelling.