I was diagnosed with limited scleroderma 2 months ago. I have been getting Raynauds and digital ulcers for the past 3 years. Im on nifidipine and mycopehnolate and work in a role which requires constant hand washing.
Pain is expected when there is an active ulcer but I seem to have super sensitive and sore fingers at the tips at the site of healed ulcer which makes everyday activities extremely difficult especially when it involves water.
I was just wondering if anyone had any tips on dealing with the painful scars or ensuring the ulcers heal correctly in the first place.
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Try angina patches on your hand. Trinitran patches. They stimulate circulation directly to your fingers but you cannot use them with your medication. Your blood pressure will go to low. Ask your doctor but the patches were the only thing that worked for me. Also put barrier cream on your fingers and keep reapplying.
Oh almost forgot to mention a fabulous Chinese ointment which the Chinese use to treat burns and ulcers. I don't have the name to hand but Google Chinese burn cream/ointment and it will tell you all about it. Any Chinese herbal shop will sell it. It is very greasy and brown so perhaps use it when you are not working and put a dressing over it.
Are you able to wear gloves to at least keep the water off your hands?
My fingers look similar and I feel that Sildenafil is helping me. As easy as it might sound... but trying to avoid the ulcers to appear in the first place is the best advice you will get from most specialists.
Hi my fingers look exactly like yours. I've found over time that the pain in the scars diminishes. I find that the only way to avoid ulcers is medication and keeping warm. I always wear gloves for washing up etc but hand washing can be an issue. I hope you get some relief soon. Xx
I can empathise with you 100%. I got the little b******s on most fingers and one thumb. Have lost the top of one finger. You name it and I've tried it.
By the way I'm actually diagnosed with "systemic sclerosis" / scleroderma. C.R.E.S.T. as it was called before someone decided to confuse the issue by changing the name for the heck of it.
I have done extensive research into cures / medication / ointments etc.
The overall situation is; once you have them they are with you for the duration. You are stuck with them. The scar tissue has damaged nerve endings in it and I am very sorry to be the bringer of bad tidings but you are stuck with it.
I am currently (for the last five years at least) taking 150mg of sildenafil per day. That helps no end but it doesn't cure the problem. I have to use rubber gloves for everythin, they are prescribed for me. Avoid all soaps, detergents of any description including shampoo. Avoid all benzene derivatives. Petrol, diesel, anything like that will cause a problem.
Apply a very small amount of vitamin E oil to them at night and then put on cotton gloves. If you need to do anything that is going to require constant hand washing I'm afraid to say you will have to protect your fingers with a dressing and cotton gloves topped off with rubber gloves.
Sadly, from personal experience if you keep getting them wet they will only get worse.
I am really sorry to sound like Dr Doom. There is no point in telling you that if you put "magic snake oil" on them they will all go away. Form bitter personal experience they won't. You need to look after them, and well.
If you don't then you will loose the finger tips. That hurts even more even when healed. I won't go into the gory details. Take my word for it. You don't want it to happen. Wear gloves and get your Rheumatologist to prescribe you some sildenafil. You will no doubt get headaches and a "warm feeling" on your face when you start taking the drug. Stick with it.
After a while your body will get used to it.
I wish you all the luck in the world with it. I hope I haven't made you completely fed up. The truth needs to be told in these matters.
Thank you Mark for taking the time to write that long post. I appreciate the brutal truth, it's what I needed to hear. I will take heed of your advice. All the best to you.
Totally agree with you Mark. I have lost the tips and nails to many fingers with this dreaded condition. I do wear gloves, but with bad finger contractions putting gloves on is very difficult.
They are murderous little Devils aren't they. People who have never had them have no idea about the levels of pain involved with them.
I really don't envy you having to wash your hands all the time.
I don't know if you have tried those little rubber finger covers? You just roll them on each finger. Trouble is the same old story though. If they are the slightest bit tight they constrict the blood flow and so on.
I know some people who swear by honey. Yes, honey as in Winni the Pooh. It didn't do anything for me. Apparently some do benifit from it.
The other thing I forgot to mention is "Fucibet cream" it's actually an antibiotic. It helped me when they were healing. I found that keeping a tube in the fridge helped to sooth the finger tips after washing, and of course you have the added benifit of it helping to fight any potential infection get a grip. I tried "spray on skin" it works "ish" but not worth getting excited about. I also tried various anaesthetic creams. They were worthwhile but I found I was doing damage to my fingers. Because I couldn't feel the pain, I was overdoing it and damaging the tips without realising it. That said, it helps if they are giving you Hell and you can slap some on and sit down to relax, watch the TV or whatever.
When you say lost the tips do you mean lost the feeling in the tips. I have just had an ulcer which is looking better now but the end of my finger feels dead. Is this what you mean. You dont mean gangerene do you as in having lost your finger tip?
Your tips are fantastic. I too take 150mg of sildenafil per day. You mention that you get rubber gloves prescribed for you. May I ask what you ask for/what sort you are given? My GP could only offer flimsy plastic/paper things on prescription. I spend a fortune on nitrile gloves and would appreciate your advice.
i can not stik my hands in water i scream bloody murder. amolodipine 10mg and slindelifil or viagra for my hands. try pyrrafin wax great for hands ask about pt for hands also. aloe vera. when its cold wear gloves outsiude out stay indoors stay warm. pain management, rheumatologist, immune doctor. even if i take a bath i feel like i am being stabbed by needles. hypersensitive skin reaction. gabapentin 3xs day. good luck. ask your doctor for referals now!
Im glad I found others that can relate but then again, I wouldnt wish it on anyone. Thanks for the advice
All have great tips. For me I made a super thick balm infused with anti inflammatory essential oils and massage it into my hands a few times a day hand therapy was great to desensitize the over active nerves once the ulcer healed. Clean moisturized skin is healthiest. I take 20mg sildinafil ,and 30-120 of nifedipine depending on the weather season. parafin is great when all skin Is intact layer on a thick balm and try wearing gloves to bed. Take the extra tube to really take care of your skin and protect the tips and nails. Good luck
Like MFC911 I find applying a cold antibiotic is soothing (especially when the pain keeps me awake at night.) My Rheumatologist prescribes Flamazine. My dermatologist suggests using Vaseline to soften them.
It's difficult to explain how painful these scars can be.
I have been told by my doctor to keep the ulcers dry and covered. Great help hey. I also use vaseline to soften the skin as it is so painful when my fingertips are tight and hard. So far, I have had no success in healing 😔
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