Hi I have been diagnosed with Raynauds and recently Scleroderma.

[146nanab]

Since I was diagnosed with raynauds, I seem to suffer a lot of attacks and more so digital ulcers. Its terribly painful and give me sleepless nights, I'm constantly in pain, I get my treatments from The Royal Free Hospital, I have had two Iloprost infusion which didn't help much and about to have another one. I also take gabapentin, methotrexate, adalat, sildenifil, losartan on daily basis. Can someone please let me know if there is anything else i can do to help me, I'm really fustrated with it all.

Thanks.

[Basset]

I am just obsessed with staying warm and wear a lot of sheepskin. Not had the ulcers so can't help. Will be interested if anyone has further advice.

[146nanab]

Hi Basset, thanks so much, I'm glad you keep warm and I pray you don't get any ulcers. Look after yourself and keep warm.

[zenabb]

Most of these dilate the blood vessels so that more blood goes to the extremities. This blood then has to do its works to heal the ulcers. It takes a long time.

[146nanab in reply to zenabb]

Thanks zenabb.

[CatherineJ]

I have had digital ulcers for 30 years as part of CREST / LCSSC. At the moment the pain isn't too bad, I think largely because I use microwaveable handwarmers regularly, and they seem to keep the circulation going much of the time. However, when my ulcers are painful I put on either Germolene or Sudocrem, both of which contain a local anaesthetic. I also found that Nelson's Hypercal cream was effective in promoting healing (this is a herbal preparation from Hypericum and Calendula, I think). Re pain, I think that's usually worst in the small hours. If I cannot sleep for pain, I often find that turning on the light seems to reduce the pain - maybe my brain is not so focused on the pain because of having other distractions (i.e. seeing) as well. I hope things improve for you.

[146nanab in reply to CatherineJ]

Thanks CatherineJ, I will have to try this microwaveable handwarmers, my only problem is have do you use them when you are not at home and you're out and about? I must say you have done well for 30 years with the ulcers, I simply cannot bear the pain, don't know if its because always have three or more at ulcers at a time.

[CatherineJ in reply to 146nanab]

Re pain, I think I'm lucky in that I think I don't feel pain as badly as lots of other people. Also, I've lost some feeling in my hands as time has gone by and that may help. I forgot to say that I've often found it helpful to have an elastoplast bandage over an ulcer: it seems to matter the extent to which the ulcer gets dry - and also if I'm cold the pain is much worse then when my hands have been warmed up. Re the microwaveable handwarmers, yes, of course it's a problem when out and about. I work 30 mins walk from my home, and the handwarmers last that long, and then there's a microwave at work. Now I generally don't go far from places where I can warm up again in the winter (I was better at grinning and bearing it when I was younger). I have three ulcers on one hand and one on the other, and yesterday wasn't too good. Good luck and very good wishes to you.

[146nanab in reply to CatherineJ]

Awwww, CatherineJ, i know how you feel, four ulcers at a time? That is well painful. I finally took the dressing of my fourth ulcer this morning and I must say after a long time its healed, although I still have a firth ulcer on my index finger causing a lot of pain and not healing at all. I have an appointment with Mr Goddard in Royal Free hospital tomorrow to have consultation on a possible sympathectomy, we let you know how it goes. Good luck with the ulcers healing for you.