Red itchy lumps and blisters following an attack

[Coldgirl]

Hi, I self-diagnosed myself with Raynaud's a few years ago (the GP agrees but hasn't run any tests) but it's been getting worse and for the last 2-3 yrs my only respite has been for a couple of months in the Summer. Rapid temp changes usually trigger my attacks (e.g. getting into a hot shower when I am cold) and I try to manage the condition with warm clothes and gloves but take no medication. Following an attack when my fingers turn white for anything up to an hour I seem to develop red, hard, raised sore areas over my fingers which are painful, itchy and sometimes blister and they persist for a week or more (in the past the skin has broken open on some of them too). They are usually on the sides and tops of my fingers and sometimes on the finger tips. At the moment I have 8 on my left hand, 5 on my right and 5 on my toes. I've tried to find info about them online but most of the symptoms seem to focus on the blood loss and numbness and not on the symptoms which persist after the attack. Are these 'sores' common in Raynaud's and does anyone have any suggestions to manage them? I would prefer to use something topical rather than long term tablets so any suggestions are welcome, thanks!

[Jmrose]

The sore from Raynaud's are called Digital Ulcers. If you Google that you will find alot of information about them. I currently have 6 ulcers and have been dealing with them since May. My GP just started me on Nefedipine ER to aid in the healing process. Good luck and consult with your doctor and hopefully you have a good Rheumy.

[Coldgirl in reply to Jmrose]

Thanks for the advice. I'll look into the ulcers and follow up with my GP as you suggest. I hope your ulcers are responding to the meds and heal up soon.

[Jensue]

Go back to your doctor so he can look at them & hopefully refer you to a Rheumatologist. He should do blood work and also do a simple test to check if the araynauds is causing blood vessel damage.

My raynauds began with infrequent occurrences & then got worse over time, my go did blood tests & they came back positive for autoimmune issues that's when I was referred to Rhuemy.

Raynauds can be primary or secondary to an autoimmune disease. Mine became secondary to Sytemic Sclerosis & was told it's much worse to treat & control. I've tried various medication but now take sildenafil.

I always wear gloves & even have a pair of thick oven gloves hung to my freezer door so that when I get something out they protect my hands. You shouldn't really warm up in a hot shower but only a warm one.

[Coldgirl in reply to Jensue]

Thanks for all the advice. I'm going to do as you suggest and go back to the GP. Bad attacks do leave me wondering about any permanent damage they could be causing. I wasn't aware that further tests could be done but it sounds like they'll help to put my mind at rest and get me on the right type of treatment which would be great. I do always wear gloves when getting things in and out of the freezer and try to avoid the rapid changes in body temp. My downfall is often when I've been out for a run and my body temp falls after I stop exercising. If I don't shower before my temp drops I find it causes an attack even if it's just warm water. Just need to be better organised I think! Hope you're getting on OK in the cold weather, I often question my decision to live in Scotland!

[tall-tim]

Dear Coldgirl,

I'm sorry to say I know your problems. Thankfully you are at an early stage of your possible symptom development. Yes, permanent alterations are probably becoming embedded. All the advice above is good. You need a referral to a Rheumatology department pronto. I am on Sildenafil for Rayanud's and it helps by opening the peripheral circulation without bad side effects. Experience has made me suspicious of all contact with water, hot or cold, so I have stopped having regular baths and showers and swims because they inflame ulceration. (I won't go into details.) There are other ways I can keep myself clean. Blue nitrile or white latex gloves are useful for all sorts of things. Mittens and wrist warmers are everyday friends, even in summer.

So.... changes in lifestyle will be needed. In the end, you are likely to discover that no cherished customs can be immune to alteration and revision. A new phase of self-management beckons...

Scotland tends to be damp and cold. I live in SE England, which is warm and dry. I always look at the Scottish weather forecast and notice that the weather is mostly several degrees colder than here. For example: today Edinburgh 6 deg c; Norwich 11 deg c.

Best wishes,

Tim

[Coldgirl in reply to tall-tim]

Dear Tim,

Thanks for the valuable advice. I'm trying to train myself to think/plan ahead to keep my temp constant rather than just reacting to an attack when it occurs. Prevention is better than cure as they say. I'm probably going to continue to find reducing my tea habit one of the hardest changes but everything seems to point to avoiding caffeine. Decaf here I come! First significant overnight frost here left us with a frozen bird-bath this morning so 'summer' is definitely over!

Thanks,

Sarah.

[tall-tim in reply to Coldgirl]

Dear Sarah,

I have cut out tea and coffee; both have the effect of promoting ulceration and sleeplessness. I don't trust decaff. Perhaps you could try try an experiment. A fortnight without any caff or decaff, then try decaff and see if you are kicked back to square one.

Best wishes,

Tim

[Coldgirl in reply to tall-tim]

Thanks for the suggestion. Two weeks cold turkey is going to be tough but if I set my mind to it I should be able to give it a go. Worthwhile to see if caffeine does make a difference for me. Thanks.

[tall-tim in reply to Coldgirl]

Let us know how you get on. I have a Scleroderma friend in Scotland who was addicted to tea, then stopped using it without problems.

[Coldgirl in reply to tall-tim]

Will do!

[Coldgirl]

Thanks everyone. I took your advice and saw the GP this afternoon. She felt it was 'classic' Raynaud's and doubted any underlying rheumatic causes but I am having blood tests later this week for rheumatology markers and thyroid etc. She felt that the sores were chilblains and gave the usual advice re good gloves (any recommendations anyone?) and handwarmers. She prescribed 10mg Nifedipine SR to improve peripheral circulation and advised that I give them a try and see how it goes. She suggested that I may be able to stop taking them in the summer i.e. only take them when necessary and said that some patients only took them for their skiing hols which surprised me a bit! Anyway, will try to hold out for the blood results (in case they indicate an alternative course of treatment is required) and then start the meds. I'm reluctant but the attacks/ulcers are going to cause more damage and be harder to manage than the possibility of side effects etc.

Thanks again everyone. It's nice to feel you're not on your own!

[cowhide in reply to Coldgirl]

Ah - I was going to suggest chilblains too, used to get them as a child and remember them as very itchy and painful. I get digital ulcers and they are never itchy just very painful!

[Coldgirl in reply to cowhide]

Thanks, that's a good way to spot the difference. Sorry that you suffer with ulcers though, they sound really painful from everything I've read.