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SweetMom

Raynauds syndrome (disease)

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I'm not sure if this is the right place to put this but if not, someone can move it. Anyway I saw where someone else has Raynauds Syndrome. I have it too. I have a lot of trouble with my left foot and toes and my fingertips on both hands. 

The doctors in the emergency room found it before I had my strokes. 

​I have a lot of trouble with it in the winter. My whole left foot will go to sleep and won't wake up. It also turns black or blue and I get sores where my heal will crack and gets infected. Its not as bad since I am not waitressing anymore, but was really bad then. The cold weather is the worst. 

I have a real bad sore on my heal now which makes it hard to walk. And I need to do more christmas shopping. 

 

 

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It's Donna right? I have Raynauds and I understand everything you are saying. It's been in the 20's here for a couple of days and it kills me. I can't warm my hands or feet and I feel bitter painful cold down to the bone. I wish you the best I know how much you suffer. Mine started about a year before the stroke maybe not quite that long. My fingers have cracked all winter before and my thumb and another finger just would go numb for days at a time and look blackish blue or white like they were dead. I absolutely hate the winter.

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Hi folks, I don't have Raynauds but I do know of it. It's surprising how many people have it once you know what to look for.  I saw it a lot when I was scuba diving in cold water.  So many people who would get back on the dive boat with blue/white hands and faces, even though they were otherwise warm. 

 

What I do get post stroke is the "blue foot/hand" syndrome which my physio tells me is caused by the damage to the white matter in my brain, and the loss of some autonomic functions.  It does look awfully like the Raynauds I was familiar with in others when diving. and even though there's no reason for it to happen if I sit still for too long my brain seems to forget to look after the temperature and blood flow in my bad foot and hand.  I find myself wearing sheepskin slippers all year, as I don;t necessarily notice that my foot has gone blue until I look at it.  I have to be very careful when wearing sandles in the office (air con) in summer.

 

I'm curious since your strokes is the Raynauds worse on your affected side?

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I had a pretty even bilateral stroke so both sides are still affected the same. I'm not really sure if mine has gotten worse we are just now getting into winter and I don't remember much of last winter. I do know it is still there. We'll see how this winter goes.

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I don't have Raynaud's, but I do have hemiplegia on my lt side, and I am also numb on my lt side, except that  I can feel pain. Like you, Tracy, Winter is no friend of mine. In the winter, even indoors,  my fingers get cold and stiff from the cold. But I have found a solution that may help ya'll, too. They're  called "convertible mittens". They have a cap which goes over the fingers. Lift the cap off the fingers, and you have fingerless gloves.  Put the cap back over your fingers, and you have mittens. With these on, I can use my fingers if I need to, and keep them warm when not in use.  This year, I've seen them advertised for hunters, who need their "trigger finger" free sometimes, and want to  keep them  warm the rest of the time. Happy Hunting, Everyone!!!!!!!   Becky  

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​Like y'all winter is no friend of mine. Starting about sept my left foot and toes start going to sleep, turns blue/black and then the cracked skin. Oooooohhhhh the pain. Its always in the same spot too. I refuse to go to the wound center again. My insurance doesn't pay much on that and I get billed for the rest. I cannot keep paying out of pocket for dr. visits like that. 

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Donna I have had the painful cracked heels many times to and it is so uncomfortable. The best thing I have found is to keep both my hands and feet as moisturized as I can. It doesn't work 100% but has cut down on the quantity and length of time to get it healed. It's a mystery illness to me most of the time I don't know why or what I can do about it. I try to stay calm cause my anxiety can bring on attacks. I just plain hurt in the winter and I feel like that is the most I can say about it.

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Becky I really like those gloves. I purchased an inexpensive pair where the flap would come over and make a mitten. They couldn't hold up and broke after just a couple of uses so I took them back. But if I put more effort and maybe paid more I think those gloves are fabulous!

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Also do a search on Raynaud's Disease Clothing and it brings up a multitude of sites with lots of different ideas. I just did it and am going to poke around a bit and see what I can find!  :)

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I have it as well but not as severe as you but I MUST wear socks and slippers, even on the carpet and on warm days as well./ My fingers and toes turn a lovely shade of violet and the bottom of my feet feel like they've fallen asleep but have the 'dead color' like all the blood has drained from it. I've stood in hot water and it sometimes doesn't help for the pins and needles kill me.. My heart goes out to you

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BTW- I SOOO love your profile picture . Always wanted to tell you that 

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The summer where I live is very hot so I only had trouble in the winter, but after my strokes, its all the time. I must wear the softest socks. I cannot wear terry cloth on my feet, unless I turn them inside out. I wear rubber rain/garden boots year round. Those things are cold. I just started using this cream called CeraVu on my heals and the cracking seemed to start clearing up immediately. Its expensive, but cheaper than a dr. visit.

Kelli, thank you

Tracy, I also do research on Raynaud's and try to find out what different things to try alleviate the symptoms. And on top of that I have the neuropathy in my left foot and calf.

Its a crap shoot if ya ask me. What works one day seems like it doesn't work the next time.

I hope we all find some relief soon. 

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