Hi I have been diagnosed with Raynaud... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Hi I have been diagnosed with Raynauds and recently Scleroderma.

146nanab profile image
8 Replies

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.

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146nanab profile image
146nanab
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8 Replies
Basset profile image
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 profile image
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 profile image
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 profile image
146nanab in reply to zenabb

Thanks zenabb.

CatherineJ profile image
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 profile image
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 profile image
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 profile image
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.

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