Hello lovely people 
I have only had Raynauds since September last year, but my Raynauds come on at the same time as my skin thickening. I do have bad Raynauds but I suffer more with the skin thickening on my hands. I have a few like this and they are over my knuckle areas and not at the tip of my fingers.
They are very inflamed. Red sore around them and almost like blisters filled with pus ? Is this a digital ulcer ?
Thank in advance, Jaz xxx
I'm so sorry you are suffering with that pain. May I ask how long before this in your fingers did you start having symptoms.
My hands have been especially bad these last 3 weeks. My fingers are white pretty much 24/7 with or without change in temperature, then when I have a Raynauds attack - it’s quite severe. I have noticed my hands are rather inflamed a lot recently too and extremely hot and severely itchy, but cold white fingers - I appreciate any feedback as they are extremely painful 
xx
I also have Raynaud’s in my toes, tip of my nose and ears are effected too... however they are not as bothersome as my hands x
I don't think so. It might be psoriasis.
Hi, they look withish, so they may be calcinosis. Are you on any medication for the lRaynouds? You can ask you rheumy for sildenafil, which has become the golden standard of treatment for it. I really feel for you, as I k ow just how painful they can be. Keep warm.
Thank you @pino99
My rheumy suggested Losartan 50mg to my GP - however, my GP said this may make me tired, lethargic etc. So to wait until I see my scleroderma specialist x
I’d get a check for scleroderma? I have the marker for scleroderma but no clear signs of it yet, however when researching it i came across photos similar to yours.
I have had raynauds since I was a child but never had ulcers like that.
Keep warm x
Thank you @lifeisapain I have been referred to the Royal National Hospital for Rheumatic Diseases in Bath, under Dr John Pauling who is a scleroderma specialist. Just waiting for my appointment to come through the post xx
Great you have a referral and you’re being taken seriously. I have found it so difficult to get a clear idea of all the different illnesses I have.
Good luck and keep in touch 🙂x
Hi Jaz, I imagine that your finger is very sore. Anything going on with the hands is really painful as they are quite well supplied with nerve endings! It doesn't look like a typical digital ulcer, although we are all very different. Am I right in thinking that you are currently in the middle of investigations down in Bristol, and have just started seeing a new Consultant there? Did you have these when he saw you? Do you have ongoing appointments with them? They are the team to talk to because they know your condition and what is going on with your disease. I would be contacting them and discussing the situation to see what is going on and what treatment is best. If you can't get in to them then I would go to your GP and see if they can give you anything appropriate to treat them.
All my best
Lucy xxx
Hi @lucyjean ! Yes my hands are very sore! Yes I have recently been referred to Dr John Pauling, he’s a scleroderma specialist based in Bath. However, there has been a delay due to funding....! As I’m welsh, and Dr Pauling is in Bath but it’s all under way now so I’m hoping in the next 4 weeks or so I’ll have my first appointment through ! In the mean time, I’m suffering I have an appointment with my GP on Wednesday so I’ll ask his opinion and advice - thank you xxx
The pus would suggest an infection, I think you should check with your gp , it looks very painful.
They are so painful and swollen in the mornings too, as are my feet. My finger tips are rock hard, my son and I like to do the ‘skin test’ I close my eyes and he touches the tip of a finger or toe and I have to guess which one he is touching just something we like to do to keep him involved - he understands a lot xx
This looks like calcinosis to me, it commonly occurs on and near joints in scleroderma and can be very painful, I’m so sorry you’re dealing with this. You can find many pictures for comparison if you google “scleroderma calcinosis.“ I’m glad you will be seeing a specialist soon.
Thank you @dianekjs I’ve just had a look on google images and yes, they look the exact same as the scleroderma calcinosis on there. Do you know if this happens in limited or diffuse scleroderma?xx
Calcinosis is the c on CREST, wich is now normally referred to as limited scleroderma. Great that you are seen a specialist soon.
It can happen in both forms of systemic scleroderma, but calcinosis represents the C in the acronym CREST, which was the old name for limited cutaneous systemic sclerosis. Which have you been diagnosed with?
Neither as of yet! My rheumatologist has referred me to a scleroderma specialist in Bath, Dr John Pauling. There has been lots of mess ups and cock ups in my diagnosis and treatment... so much so that my local MP is now involved.. I’m hoping to have a diagnosis soon as I’m suffering and it’s been long enough. I have visible skin thickening on my legs, feet, hands and face. I have Raynaud’s and it now appears Calcinosis. I don’t have reflux or esophageal problems but I do have lower GI involvement - constipation, bloating and malabsorption with serious weight loss.
I also have been experiencing heart palpitations with racing heart beat and high blood pressure - I did have an ultrasound of the heart done which revealed fluid around my right ventricle
All of my symptoms including Raynauds come on at the same time! Prior to this, I had absolutely nothing - I’m really confused as to what the hell is going on xx
Maybe I’m wrong but primary Raynauds (like me at this point) just has the loss of oxygen therefore the fingers and feet turning white? But this goes on year and after year Mine for 17 years Started with white fingertip only when I was cold in a supermarket - then bluish feet when I got into tub - now it stays white on bottom of feet also entire 2-3 fingers unless I warm up
You mentioned you have had Raynauds symptoms only for 6 months- then this?
Yours sounds like a more serious situation. I’m sorry. 😕. Stay positive. You have a lot of support! Like all of us we adapt. It’s not pleasant. But we have to adapt. 🌹
Jaz Point. I’d be interested to know if Traditional Chinese Medicine could be of any help. If you can afford it - I would go to a qualified accupuncturist - research it. Make sure they have been in your area at least 10 years. Look up reviews.
Also google “accupuncture for CREST” or whatever you suspect
I’m a medical skeptic by nature They have done EXTENSIVE double blinded studies on accupuncture for a variety of ailments. It’s compelling! Especially for your gastro issues!! Don’t flub it off to quick. 👍🏻 ( I’m trying to use a UK term. Lol. I’m in California)
Here is a good article It briefly mentions accupuncture But again - they will work on various functions naturally - like the GI problems Don’t jump into hard core drugs too soon if you can help it or of course- if it doesn’t harm you NOT to take it
Hi Has.. I have Raynaud,s.and vascular troubles I have been given in hospital MEDS that
Says ii HELPS with both. I have no ulcers. MEDS IS ONLY FOR ME to use, but there is
Something that your doctor will help you with. I wish you good luck. It look very
Painful. Our hands when so sore keep us from doing normal everyday things.
I am sure a good doctor will help.
Hello JazPont. I have experience of digital ulcers. Do you have any other photos you can show the group? In my experience they tend to form over knuckles, other flexure points and points of general abrasion rather than on the top of fingers as shown.
Their incidence and severity has reduced greatly since I have been on Sildenafil, which I tolerate well.
At the risk of offending squeamish readers I'd like to explain how I deal practically with these ulcers. I find I have two types: small 'dry' ones which solidify into hardened plugs which are hard to shift, and 'wet' ones which begin life as hot, tender 'ponds' under the surface and then brew up painfully. Perhaps yours is this type. I have a technique of letting the liquid out with a sterilised needle (immediate relief from pain) then either suck them for five minutes (saliva is antibacterial) or for dip them into hot, salty water (acts like a poultice and draws up the liquid). Then covering the ulcer with sticking plaster, I repeat the processes once or twice a day until the problem has gone, usually after a week or so. |
In the beginning I used to contact my GP to get help from the nurses in our clinic, but they hadn't a clue about what to do - just wrap it up they said. I tried this, but it is too painful and the problem kept persisting for weeks and the white liquid solidifies until - bingo! - I had a buried lump or a crystal. There are antibacterial ointments like Bactroban or Manuka honey which tackle infection, but in my experience they tend to block the liquid in the wound and make it more marshy and painful. I think it is important to build up your self-help skills by trial and error.
I send you my best wishes.
Tim
JazPont, hope you get some answers at your rheumy apt, does sound like you do have scleroderma. They may be ulcers or calcinoisis or both. If the inflamed area gets worse make sure you get to a Dr as there is a risk of wider infection and sepsis. I use good old fashioned germolene cream on m calcinosis when it is weeping as it has both antibacterial and anaethetic properties so it helps stop infection and gives some pain relief, it's cheap and available over-the-counter.
Hello JazPont, and everybody else, can I make a suggestion? Anytime I notice something different happening with my skin I take a photo so I can show my rheumy the next time I see them, because I can guarantee if I dont, it wont be there when I go to see them!! Smile and wave folks, smile and wave.
How are your fingers doing
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