Hello. I've recently been diagnosed with systemic sclerosis which was a bit of a shock but I remain grateful that I have succembed in my mid-50s rather than when the children were young and needed carrying which I couldn't now do!
One of my current problems is sore fingers around the nails which makes the use of my hands even more difficult. I try to keep them moisturised and have tried using Sudocrem but it stings too much and doesnt seem to work. I'd be most grateful for any suggestions.
Many thanks,
Janet
Written by
sussej
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Welcome to our little family 😀 I know it's not the best circumstances to meet new folk, but I hope u find some help and support here as I have.
Ok, a top tip that I learned here is a great cream to use for our hands is double base gel. You can get it on prescription, or buy it over the counter. I've bought some from eBay as it seems there's a booming trade where ppl are selling their prescription gel lol (not my place to question that) and I picked up quite the bargain 😁.
There's a few other creams that I find useful, I bought some argan oil hand cream from body shop that's really great at adding extra moisture, but it can't be applied if you're sensitive/have broken skin. I've been using it on my heels as they get so very dry that if I don't cream them every day, usually two or three times a day, I can develop quite deep cracks which are agony. They get so bad that I'm bed-bound so it's really important to keep up the moisturizing.
Wearing cotton gloves to bed after slathering on doublebase really helps to soften up the nail edges. Atm I've got 3 fingers on my right hand I can't use as they're agony from the 'paper cuts' by the nails. It's this British weather that's playing havok with my whole body, but it's old hat now as I'm over 6yrs into SSc (systemic sclerosis) and I've had RP from being a child.
If there's any other help u need, don't hesitate to make a new thread asking as there's always someone along shortly to offer the support you need! I fact I don't mind admitting that this forum is where I come before checking in with my gp lol!
Thank you very much for your help - much appreciated. Funny how life turns out and you find yourself asking for such help but good to see there is such a helpful and understanding audience out there. Thank you
You're welcome, and yes it's a strange world that finds us posting in forums such as this for help lol.
I never knew that Raynauds was a possible pre-cursor to SSc, especially in women in their mid thirties. I'd lived with it all my life, but never really bothered with meds and just dealt with the issues a mild case produces. It was almost on my 35th birthday that the Raynauds went into overdrive and the SSc symptoms appeared more or less overnight.
The first couple of years were like a living hell. But we as humans can become used to the most awful situations life throws at us, and over the years I've just learned to deal with it. If I'm bed-bound, that's what I am. If I'm able to walk short distances, then that's also just the way it is that day/week.
Anyhoo I'm now waffling lol, once again, glad u found us.
You sound as if you are coping with things very well but I'm so sorry to hear that this condition has left you bed bound. I am still in the early stages post diagnosis with belief in finding the right medication to make everything better! But as you say, we have to learn to accept what life throws at us as a very sensible approach. Thank you again and let's hope 2017 is a positive year!
I've actually thought i might lose my middle finger these past 6 months from ulceration...carelessness on my part .really..but i seen to have helped alot with the over the counter voltaren...i'm not out of the woods yet on that..but i will keep yah's posted..i have this several years now...i can't play my guitar..or piano..😞 but i treat every day..like a new beginning ..and life is good..i am from nova scotia...brrrr.and lucky enough to be in Vegas..and its pretty cool hete for january..but since I'm in a condo..i've the heat cranked to 80...........+++...lol.....
There's a big possibility that you'll find meds that relieve your symptoms, I'm sending u positive vibes while you search through the various chemical assaults on this disease.
Plenty of us live with SSc and the various CREST illnesses related to it. Some of us find that certain meds help while some of us exhaust those drugs available and are unlucky.
What's gotten me through this challenging time of life, is the knowledge that there's worse out there than what this illness could ever throw at me. I guess I've fought in one way or another throughout most of my life and tbqh even with the daily physical challenges, I'm happier than I ever was with full mobility...
I used Triamicalone cream ( smells terrible)doctor ordered. I now use a cream I found that is great, does not burn, very moisturizing called UDDERLY SMOOTH Hand cream. You can buy it in many places. Also very important to always wear gloves to get into freezer, avoid cold water. You can google the name of the cream and where to get it near you. Let me know when you find it and use it, how you are doing. It's great. I never recommend getting anything from eBay if prescription for this disease.
I have that ....endorsed by Shania Twain....but volataren.. Not sure if thats the right spelling...actually took down my ulceration of my finger..alot..not out of the woods.on that..but ..has given me hope..I was shocked my 2 fingers ulcerated. do not get neglectful as i did....wear gloves all the time..😢😢
Voltaren is an anitinflammant, it also comes in pill form it is a nsaid for arthritis, not for the skin.the cream form is for you to apply on affected joints. Not to treat the skin issues from Raynaud's or systemic sclerosis.
I have the same scleroderma raynauds sore and ulcerated finger tips
I was using germoline for a long time. It helped with the soreness and pain but it didn't heal the ulcers.
In desperation I went to my local Chinese herbal doctor. She gave me lots of treatments which helped but it was costly. The thing that specifically helped and healed my ulcerated finger tips was an ointment.
It is called Jing Wan Hong Ruan Gao !! Google it and you will find a description of the ointment a list of ingredients and what it is used for.
It is very greasy and it is brown so I cover my fingers with a plaster or breathable dressing when I apply it but it healed my ulcers and relieved the pain in the meantime so I did not care how it looked.
£15 per tube from any good Chinese herbalist shop and it lasts ages hope this help
Also I have just started using corpitol emulsion which apparently heals and prevents future events. Only available on the internet from Spanish pharmacy websites. It is expensive (£40) per bottle but if it does what it says I don't care. Only been using 3 days so can't say if it works yet.
Thank you so much for all your helpful comments and for the positive way in which it sounds as if you are all coping with this condition. I will look into all the suggestions and revert with any success stories! The secret seems to be in staying warm and gloved up!
I use the double base gel too I get it from the doctors on prescription. I also use a brand called Simple moisturiser I have used this for years for my face and hands during the day. This is available in most supermarkets. I take it everywhere if going away on weekends or holidays. Not greasy.
I have the double base gel for my legs mainly because they swell a lot.
For my Raynauds I find, if you do not have any broken skin. Get yourself a hand wax bath. It is brilliant for the pain and swellings. You can only do one hand at a time. I have found how to do the two hands one after the other. I use a lavender wax which is cheaper on ebay. It comes with some wax on purchase. It is fabulous.
This is a terrible illness. But find this website blog the best at getting help and advice.
Sussej the relief the wax bath does on your hands some days. It is well worth checking our ebay and buying one. They are not too expensive. The hospital tried it with me and it helped with the swelling, movement in the joints and pain.
Aaaaand one more! Prevention is key for me. Protection of the hands, always. Gloves always - for dishes and cleaning too - and hand warmers, whether they be the little packets or battery operated.
One thing I've found that I've never heard anyone mention is pure lanolin. It's no good if fingers are already ulcerated but if I notice that I'm starting to get a slight stinging pain I put lots on at bedtime, sometimes wear cotton gloves overnight too. In Canada it's available at pharmacies or the baby section of department stores. Same kind that breastfeeding mothers use. Usually after a night or two the stinging is gone.
Lanolin is very old used ointment , pure lanolin is very good. Hard to find most creams claim to have it in there but to small amts. Lanolin is great, used by old druggists that believed in opothacary medicine (which works better than stuff they shove at us today). I'm all for it. Keeps skin so soft in original form.
I use CETRABEN emollient cream, I get it on prescription in 500 ml dispensers, it is also on Amazon but quite expensive. When I was diagnosed with systemic sclerosis 2 years ago, I saw a skin consultant and she prescribed it, keeps me moisturised and good for itching especially after a shower when the pores are open.
I have Raynauds and have permenantly red, sore areas around my cuticles - lots of hacks and cuts too. I use lots of nail oil - 'Poderm' suits me, and Berts Bees products too. I oil my nail areas several times a day - it does seem to help - more so in the summer when my circulation is better. X
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