Raynard's treatment.

[Sky8888]

Good Afternoon,

I have previously posted re the extreme symptoms that I am experiencing, which I have been told is due to Raynard's: red/white/blue/extremely cold/painful hands, plus constantly red hands and wrists, splitting skin due to fluid, swollen joints, chilblains, ulcers, etc. I think that I probably have Lupus but I am having trouble getting a diagnosis as my blood results were negative, despite me having every other symptom.

I have recently had a Dermatology appointment and have been advised to immerse my hands first in cold and then in very warm water for 5 mins each, every evening, to try to reduce the Raynard's symptoms. Can I please ask whether anybody else has been advised to try this treatment and whether it has been successful?

Many thanks for any advice that you can offer.

[PMRpro]

If I did that I suspect I'd have an attack there and then!! Hands in cold water was a diagnostic challenge when I was working! However - this article felt it was a feasible deconditioning treatment

pubmed.ncbi.nlm.nih.gov/408...

and it is mentioned here

brassmonkey.co/blogs/journa...

It seems to be a longer term approach to reducing the effect of attacks so you need to persist with it.

[Jacko37]

I wouldn't advise doing that. If I were to do that I would be in agony and it would make the chilblains much worse. If your Raynauds is that bad and causing so many problems then chances are you have secondary Raynauds. You are probably better off seeing Rheumatology to get a proper diagnosis and treatment. You can have Lupus, scleroderma or another condition with negative bloods. Good luck

[Lizzo32]

Some basics on Raynaud’s disease from the NHS:

nhs.uk/conditions/raynauds/

From the NATIONAL LIBRARY OF MEDICINE:

pubmed.ncbi.nlm.nih.gov/317...

[Lizard28]

I saw my Rheumy a few weeks ago, my blood tests were always negative for lupus but she said I have MCTD, and did have a skin biopsy which showed lupus when I had a bad rash. I also have Raynaud s, I just wear gloves and keep hands warmers handy and not let them get to the white stage although it happened on the tip of one finger last night for no apparent reason. I was offered medication for it but I declined, I hate the thought of taking more tablets. It’s so painful I find when it starts to wear off and they turn pink again.

[catblue1865]

Test for secondary raynards is a cold stress test and a calliscopothy, done by a rheumatologist.

[WinterSwimmer]

Thank you for this discussion, everyone. I have been struggling with Raynaud's for more than a year now - having had lupus for 20+ years without any significant circulation issues until now. I was prescribed amlodipine, but found the swelling in my legs to be beyond what I could comfortably cope with. In the scale of things - I think this can seem like a minor issue, and I feel my consultants (renal and rheumatology) have not really taken it seriously. But it has seriously affected my capacity - not just for essential everyday activities like cooking or working - but also for the outdoor activities I love that keep depression at bay and make life worth living.

I have looked at all the links posted, will experiment with alternate immersion in hot and cold, and let you know what happens.

[Sky8888]

Many thanks for all of your replies. Is there a difference in symptoms if you have primary or secondary Raynaud's? My hands are extremely painful and visually worse than any pictures I have seen online. The redness is very apparant and the blistering/ulcers are worrying. I am already under Rheumatology for RA and they have excluded Lupus just because my ANA was negative. It is very frustrating as I feel as I m being brushed aside and in the meantime my hands are getting worse. The medication is not helping. I will have to try the hot/cold hand treatment but I am worried as cold water has a negative effect on my hands and they are constantly cold and painful. Many thanks to everyone who has taken time to reply. It is always good to get the opinions of others who understand the symptoms first-hand.

[Jacko37 in reply to Sky8888]

You wouldn't normally have ulcers with primary Raynauds. The more severe your symptoms then the more likely it is to be secondary. Only a rheumatologist would be able to tell you.

[Sky8888]

Many thanks for your help, Jacko37.

[chrisj]

I've always found warm water to help, never been told to dip in cold first. Mum used to put my feet in warm water when I was young for white toes....she said it was down to poor blood circulation. It was much later I found out I had problems with my immune system.

Its improved since then, I'm 78 now was diagnosed some years ago with SLE and Raynauds. I do feel the cold more than most, my hands are always cold in winter, they improve as the weather warms up. I was treated for SLE and I think Raynauds improved somewhat from that.

[Sky8888 in reply to chrisj]

Thank you, chrisj. I have been trying the cold then warm water treatment but I am struggling to keep my hands in the cold water (when they pretty much always feel extremely cold anyway). As I also have RA, I am worried that this could have a negative impact on my joints. Many thanks for your kind reply.