A-typical Raynaud's

[carofromlondon]

My diagnosis is a-typical Raynaud's because it is not the classic white finger syndrome. In cold weather mine starts with a pink sore area on a finger, which spreads over weeks into a larger area and to other fingers, red, swollen, sore, skin splits over the knuckles. This winter (202/21) I had it for four months and it only healed when the weather warmed up in mid February. Not painful except for one night when I needed paracetamol to be able to sleep. I cannot find much on the SRUK website about this variation. Does anyone else have it?

[Jacko37]

Hi, hope you don't mind me asking but who diagnosed you with a typical raynaurds? Have you been given any treatment for it? What you have is very similar to what I have on my fingers, starts with a small sore spot and then spreads to all other fingers. Skin splits and I get ulcers and blisters that just won't heal. I can guarantee that once we get to the third week of November they will start to appear and can last until May! Have tried all sorts of treatments over the years but nothing really makes much of a difference. My diagnosis is limited scleroderma. Sorry I can't really give any advice but hope you find something. Take care, Xx

[carofromlondon in reply to Jacko37]

Thanks for replying, Jacko37. My GP referred to a rheumatologist at the local hospital. The only advice he gave was to control blood pressure, which I already do. I am on two tablets for that, and at nearly 79 am proud to be about 135/60. A year ago one finger went septic. Antibiotic was slow to kick in, and I went to the walk-in place at the hospital, where they prescribed Sudokrem (used for nappy-rash!) and Double Base hand cream. I also used a Vitamin E cream and Vaseline to keep the skin soft and avoid chafing. Putting it on thick and then wearing Spa Gloves helped. My GP is now changing one of the BP tablets to bring it in line with what the Rheumatologist said. I don't have scleradoma, but I have had Chronic Lymphocytic Leukaemia for about 3 years without any unpleasant symptoms --- it's dormant and stable, but my white cells are not as they should be. Within months of diagnosis I had Shingles. I suspect this may be part of why these sores take so long to heal. I wonder if my tips help you at all? Incidentally, I should really call it ATYPICAL, all one word, to mean a variant, unlike the normal one.

[DJK99 in reply to Jacko37]

Ohh Jacko - I think I was thinking Caro said all that about the onset and different stages of your finger sores - oops. Sorry got confused. maybe take a look at my rather long response to Caro below. Hope it helps. What do you think of my pic - anything like any stage of yours? Hope you are doing ok. D

[Jacko37 in reply to DJK99]

Yeah, my fingers go like this in mid November, starts as a small spot on one finger and then spreads before the ulcers and sores develop. Tried tadalafil at the end of January but stopped last week because I was having really bad migraines. In fact I still have it now and my neck is on fire, really strange. Although my diagnosis is limited scleroderma, I have always had my doubts about it. I have always felt that my symptoms pointed more to lupus as my symptoms don't really point towards scleroderma, take care, Xx

[DJK99]

Hi Caro - goodness that looks very painful, poor you!

I have had this sort of thing yes, you describe it exactly as I do ie the onset and different stages it goes through, although haven't had it that bad since a young child in the 60's along with a ton of other stuff such as full body and face extremely dry flaking skin, mouth ulcers, recurrent infections, feet deformity, mega sleeper etc. The rashes like that were also allover my body in any place that was exposed to the sun which I was very sensitive to and still am.

My father changed my diet to v v clean, boring but highly nutritional diet (difficult for a 4year old!) - so veg, fruit, meat fish, wholemeal grains, nuts, and high quality vits and minerals, tons of filtered water, and made sure the washing powder was fragrance free and non bio. No sugar!

All of that really helped hugely, and I kept it all going most of my life. I started getting quite bad raynauds in my early teens along with aura migraines, and earlier than that just had weird pain but can't remember the change in colour. I'm finally on nifedipine (well, lacidipine as they discontinued the MR version of nifedipine which is a shame as it worked brilliantly). In 2015/16 my hands started looking like yours again and, along with all the aforementioned stuff, things I'd had most of my life got worse ie constant exhaustion, increased recurrent urine, ear and chest infections, atrial fibrillation, a lot of back and general bone pain , v v bad aura migraines and all sorts. I'm just wondering if you have any of those symptoms??

After my old GP retired, and I got a new one who noted abnormal blood tests when I went to ask for help yet again, he referred me to Rheumatology and I was diagnosed with mod-severe SLE (lupus) in 2016 when finally saw the top rheumy in town, further to the rest of his team. In Autumn last year he downgraded me to "lupus like symptoms" as said he can't continue with that diagnosis as I've not had a positive ANA blood test. And now he seems more interested in my constantly low complement 3 and 4 - which I've had lifelong along with neutropenia. Have these blood tests been done for you? Presume so and wondered what they say? Do you have autoimmune neutropenia as part of your diagnosis of your leukaemia or is it they lymphocytes (or its that same thing - sorry??) I had shingles last year actually...

Anyway, have they done your ANA and all the other tests ie antiDsna or whatever it's called etc? My rheumy has referred me to the Lupus Centre in London, and he said they can do all the tests they can't down here in Sussex. Such as a capillaroscopy - have you had that done? Sorry if you know all this! I've added a photo for you that isn't the worst I've had and doesn't show when the skin is split etc but hope it helps (you can see one red bit forming on the left side of the mid finger, they're very dry so the redness isn't showing up but it's v v sore, although nothing like the stage yours are at!) - have your fingers looked like that during the process of getting to where they are now? Just remembered my rheumy called it vasculitis at one point, and said maybe I'd be positive for anti-ro blood test - has any of that been mentioned? So sorry you are going through this.

Do hope all this helps, D

[DJK99 in reply to DJK99]

Actually - I got this on my toes recently - and then watched the scleroderma webinar that was on the other week via SRUK - it would have had you down as scleroderma I think?? Oh dear. I am a bit worried about you as it does look so painful and you're rather open to infection if that's ok to say? How low are your white blood cells? Mine are 1.4 neutrophils at the moment - do you get your results when you have them tested regularly? Also on the Lupus site there is a great member called Barnclown and, in response to my posting of my feet the other week, she said maybe I had Lupus Chilblains... She might see this post and have a view. Just googled images for them and here is one - does this look familiar? dermnetnz.org/topics/chilbl... or parisadermatology.com/chilb... x

[carofromlondon in reply to DJK99]

You have had a really rough time , DJK99, and I extend my sympathy. I am so lucky to have had near perfect health until my mid-70s. Maybe it's partly because of my decdes of healthy diet, much like you describe. My lymphocyte count is 50 and stable. None of the tests you mention have been done. Neither the Rheumy nor the GP have mentioned Scleroderma. I feel completely well and full of energy. As soon as the weather warmed up last month my hands quickly healed. And yesterday I installed a programmable heater in my breakfast room which I never eat in during the winter as it's icy. This morning it was lovely to walk in there. The only cold thing in my house now is the tap water, which I handle only briefly to wash an apple or something. So I shall face next winter with a lot more information and experience. And the knowledge that others share my condition and are happy to talk about it is hugely comforting.