Hello allFor decades I've had Raynaud's, since 17. Got really bad early forties then after being diagnosed with Undifferentiated inflammatory arthritis and starting hydroxychloroquine it seemed to calm down.
Over past year it's been active again although slightly different. Fingers used to go white (not all, mainly first 2 on right hand) then go red and thaw out after an hour. Sometimes extremely painful. Lately my fingers including thumbs seem to be in a permanent state of colourless, not as bad as before, and now they are also blue, even sitting down at work where it's warm. I used to get what I think must have been chilblains on my toes in really cold weather but they were never painful or itchy. Also never had them on fingers until now. Its only on the index finger of my right hand (right handed) and can hardly see it but it's really painful has been there for ages and first noticed because yhe skin has gone really hard and I can't feel as.much any more, when touching things and picking small things up which I have to do at work. I've got one on big toe aswell even though I'm not feeling particularly cold.
In addition to this first two fingers on right regularly go puffy and swell up and feel hot.
All this sensitivity means I can hardly touch anything without gloves which is ridiculous. Shopping opening the car, gardening, letting the dog out, holding car keys.
I'm 53.
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Brychni
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I don’t think anyone who has not suffered from Raynauds can possibly understand just how painful the disease can be. We all take our hands and fingers for granted but when you cannot perform simple everyday actions it iso debilitating and frustrating. My fingers are usually very swollen and painful in the morning, sometimes then go hard and wrinkly, especially if the weather is really cold, they then start to swell again in the late afternoons, with frequent Raynauds attacks
As it seems to be getting worse perhaps you should have it checked again with a Rheumatologist, other than Hydroxychloroquin are you on any other meds for your Raynauds. I used to have terribly painful sores/ulcers but I believe AMLODIPINE and LOSARTAN now help to keep these at bay, thankfully. Don’t suffer in silence, get it checked out. Wishing you well.
Hi Bkart - thanks for you reply. Interesting that you have the same sort of symptoms. My next rheum appt is May. My list of complaints is growing! I'm not on any other drugs at the moment. I did take methotrexate a while ago but didn't feel it was doing anything for the other issues but with hundsight I should have stayed on it. I used to rely on the occasional short course of steroids but can't do that since I was told I have narrow angles in my eyes for which I've been referred in April. My fingers are puffy and blotchy and really itchy today, the sore area on my fingertip is, on closer inspection also with little red areas, just like a chillblain and there is also one on the side of the nail - which I've never had before.
About a month ago I developed over a few weeks a shiny red area just above the nail fold on my litle finger. It wasn't painful and I couldn't even feel it but it just got bigger and redder. After endless googling I decided it was a myxoid cyst. I have no idea what they feel like but it was the closest likeness. Anyway, I put some hydrocortisone cream on it (leftover from some a thing on my nose - which turned out to be something I also had to be referred for! and it went away. I wonder what on earth is going on all of a sudden. As usual it is nearly always on the right side of my body.
Do your fingers get hot when they are swollen? Have the meds made any improvement?
I was born with primary Raynauds Phenomenon and Inherited Erythromelalgia. I’ve had symptoms since birth.
Usually after my Raynauds flare I would immediately go into hot swelling hands and feet…now 70+ years later and they have progressed to the point that one will trigger the other…often multiple times a day.
Everything can trigger them and things like:
Weather shock stress illness sleeplessness being too hot or too cool/cold grieving. I have these episodes wherever they wish to hit. Used to be embarrassed now I’m old enough I don’t care anymore and just endure them.
Hi, my right side tends to be worse, I’m right handed but both hands are affected. Yes my fingers can get very hot, red and swollen anytime of the day or night, I find if I touch something cold the pain recedes, which is the exact opposite to Raynauds. I have to be careful though that I don’t set off a Raynauds attack, very difficult to manage. I’ve had Raynauds, which came on suddenly in my early fourties, for a long time but this started 3 years ago along with other SSc symptoms. I think this maybe EM too but haven’t plucked up the courage to ask the Consultants as being in the grey area for diagnosis makes me feel as if it’s one more thing I’m imagining! It is so painful and much more unpredictable than my Raynauds. I only have it in my fingers and soles of feet, I believe it can happen almost anywhere on your body though which must be awful to deal with.
Just about exactly the same problems here and I don’t even have to imagine what it’s like - you have my sympathy and understanding. I suggest trying your GP. There are a number of meds they can prescribe that may help before your Rheumy appointment.
If you have Erythromelalgia too there are meds that can help: I’m talking pregabalin. Unfortunately I can only take a small dose but it takes the edge off x
Have you ever been prescribed Nifedipine or similar to increase the blood flow to your fingers? sounds like you need it if some fingers are staying white/blue... I get the dusky purple/blueish fingers, and then they go white if colder, before I started on Nifedipine I would get chilblains/rashes and swelling in the fingers, also poor nail growth. It helps, though I still need to keep warm and layer up.
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