Ten fingers and toes

[Delissedoesclay]

What works for you for the pain and the sores that develops with raynods

[gindy]

I use oxycodone (longtec) tablets, and oxycodone liquid (oxynorm) for breakthrough pain. It seems to work for me, speak to your doctor though as we're all different.

[Delissedoesclay in reply to gindy]

OK I will ask her about that I don't know how to handle the pain I am on I nifedipine it helps but still hurts

[gindy in reply to Delissedoesclay]

Delissedoesclay your GP can refer you to the pain clinic to see a specialist. I actually paid to go see the pain specialist privately as there's an 18 month waiting list here is SE England.

It was the best spent £100 (yes that cheaply) I can think of recently. I saw the exact same specialist I would've on the NHS, but jumped the queue by paying.

[sbbtd]

When I first notice the ulcers forming I use nitroglycerin cream three times a day to increase blood flow and aide in healing. If I'm too late and the ulcer forms then I soak in Epsom salt & essential oils including rosemary and frankincense along with the nitro cream until healed. Take care to keep the skin moisturized to discourage ulcers from forming.

[foxglove in reply to sbbtd]

Would you kindly tell me where you get the nitroglycerine cream? Does it require a script? thanks

[sbbtd in reply to foxglove]

I got a prescription for it. I don't think it's available OTC but your doc shouldn't have a problem giving it to you. Order some disposable cotton gloves on-line to aide absorption. Although they are "disposable" you can wash them for multiple uses.

[foxglove in reply to sbbtd]

Thanks for advice. I sort of remember that I tried to seek it before but couldn't. Will have to ask G. P. Don't know if I will be successful.

[Jmrose]

I take nefedipine, use nitro cream and pain management put me on perocet for the pain. I noticed a big difference in healing after I started taking nefedipine and using nitro cream. Good luck and hang in there 🙁

[Jmrose]

I forgot to mention I also use Silver Sulfadiazine cream too.

[tanya1981]

Apologies if the question is ignorant- i am about to go into my 1st winter with scleroderma.. what in particular makes the experience so painful? Is it the ulcers and if so, how long is one likely to last?

[cowhide in reply to tanya1981]

For me it is ulcers associated with my Raynauds and also calcinosis. Both of these seem to have lessened significantly since I was started on sildenafil. I have had Raynauds for decades, diagnosed with scleroderma last year and I work out of doors so I have to be SOOO careful!

One of my ulcers has lasted about 10 years but I've only been treating it properly fr the last 18 months - it has got a bit better but it gets more sore when it starts to spit another lump of calcinosis out. It is noticeably more painful when the weather is cold too.

Stock up on warm gloves!