I believe I've had Raynauds all my life (in 46 now) . From chillblains as a child to my grandma affectionately calling me 'old cold nose'. My middle 3 toes go alabaster even in a luke warm bath before all my toes going a deep purple and throbbing as they warm up. My index finger on my right hand is almost always numb as my hands (and feet and nose) are always cold even when the rest of me is toasty.
So basically I know it is Raynauds although I only realised it was a condition recently....I always thought it was just the way I was....is it worth getting an official diagnosis of should I just carry on doing what i always do to manage it?
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JaneCorn
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I’ve had RP/Raynauds Phenomenon since birth. It really presented problems after puberty.
What many afflicted don’t realize is that this condition causes damage over time. As/if it progresses it can cause damaged nerves/sensory problems. When really bad it can cause ulcers and gangrene requiring amputations.
Extra care is needed to prevent these tragedies.
There are treatments available that can help prevent such events.
Over the years I have lost much of the sensation in my hands to detect dampness and things on my palms eg shampoos and lightweight items. If they are placed in my hands I can’t feel them. It effects my dexterity too.
Use gloves or protection whenever handling cold/frozen items.
Please get diagnosed so you won’t experience such tragedies.
My blind dad recently used a hand warmer on his nose to warm it up after he stood outside the nursing home window to let my stepmom see him in subzero weather. His hands turn such dark purple they almost go black. Not good but he refuses to not connect to her because this pandemic has separated them for the first time in over 9+ years he’s stayed at her bedside there prepandemic time.
RP causes the blood flow to be blocked when tissues blanch white or go blue violet.
When you use water to warm/pink up make sure it’s only warm not hot because that can damage tissue too.
There is another condition that can go along with RP which I chased the diagnosis for 6+ decades which is erythomelalgia. This causes sensation of burning /swelling/lobster redness/ pain.
I have the rarest form which is genetic/inherited.
Having both conditions causes them to be cyclical for me. Whichever one flares first it triggers the other to follow.
Thought this might be helpful just in case you experience the symptoms too.
Thank you. Gosh I didn't realise it was so involved. Yes I will speak to the doctors when they open again next week. It has deffinately got worse over the last few years.
To be honest, it is secondary raynauds that causes more problems, ie raynauds secondary to a condition such as scleroderma. Primary raynauds is not nice but causes less damage. It’s still worth getting it checked though!
Yes I am the same, I used to get chilblains as a child. I have had Raynaud's for years now, I mentioned it to doctors some time ago and he said to keep myself warm as much as possible. I never queried it at the time but now it's much worse, so much so I dread going out as it's so cold. I don't drive and like to walk when I can, I wear a pair of woolly gloves inside sheepskin mittens which helps a little but doesn't stop the numbness altogether. I think I will have a word with the doctor when I can, our doctors don't see anyone unless it's an emergency at the moment. Good luck with your doctor and let us know what they say. Happy new year
I spoke to the doctor today and (amazingly) got blood tests done the same day. They have done ANA which I believe is for rheumatoid arthritis, liver function and full blood. Will repost when I get the results.x x
i have raynaud's try wild lettuce extract for pain ebay i use it or ask the doctor about prazosin 1mg for raynaud's also take a twig of rosemary and crush it under warm water of a bath the smell should help you sleep also warm electric blanket before bed time and warm pjs keep your joints warm so you can move easier. hope that helps you. hugs for a better day. love julie
I have Raynaud’s and always wear gloves in winter etc. When I had (pre-tests, symptoms led me to believe I had it) Covid in Feb I then developed Covid-toes. Like chilblains so itchy / painful and red and on both feet especially around toe nails and at the tail end of the virus. Then, when the weather became worse this year, in November, the Covid toe symptoms came back with a vengeance. GP ignored my description of the pain and case history and gave me steroid cream, which doesn’t seem to work. Has anyone else had anything like it? Lots of painful at times red dots under the skin, clustered near / under the end of the toes. Gets worse when / if I have a hot bath.
So I spoke to reception yesterday and they said 'everything came back normal - no action required ' ...I replied, that was what we expected as they were to rule out other conditions. Reception said, well you'll need to ring at 8:00 next week to request a telephone consultation,........Here we go again.🙄
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Can anyone recommend a way to warm my hands up when I get an attack?
