Does this sound like Raynaud's pain?

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Hi everyone

I am so glad to have found this forum.

I have cerebral palsy and I'm a wheelchair user. I've been struggling with pain in my feet for well over a year now and have all the other symptoms of Raynaud's.

The furthest I've got to a diagnosis is actually a nod from my podiatrist when I asked him if it was Raynaud's! Guess it's a start! But I do have constantly cold hands, white fingers when they are particularly cold, either red or purple freezing cold feet( but they can also get extremely hot and go rw red?) My nipples go purple! And I'm wondering if the ear pain experienced when trying to wear headphones could be connected?

To cut a very long story short, I originally thought I had a pressure sore on the underside of my heel which was discounted by the district nurses. (I have a red mark on my right heel that has always been extremely painful), and it wasn't until my left heel started giving me exactly the same pain, but had no red marks, that I realised this pain could be part of the Raynaud's. It's a cross between burning and stabbing. Having done some research I understand that stress can bring on an attack. So I'm assuming that an attack is when the pain is at its worst?

I am by no means asking for a medical opinion, just to hear from someone who has gone through this as well. If it's not something that is common with Raynaud's, I know I need to have further investigation.

Thank you so much for taking the time to read my post and you really do have my sympathies!

Best wishes to you all

Zoë 😃

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  • Posted

    Hi zoe43889,

    Yes it definately sounds like Raynauds. I was first diagnosed in 1990. I had to do the ice submersine test. Had to put my hands in ice water as long as I could handle it. It hurt so bad! I lasted 5 seconds. The sympathetic nervous system responded so fast. My feet became ice cold. It took them 47 minutes to bring my body back to normal temp. I say Im patriotic because of turning red white and blue. The first symptoms I had was in my feet. They would get so cold and hurt so badly! Dont let your hands and feet get cold for longer than 30 minutes because it can do damage. I was given a beta blocker whick dialates the blood vessles. Im still taking it years later. I have gloves, socks heating throws etc. even in the summer easy to get to. Often I just put my hands under hot running water to thaw out. Just be careful when using hot water. We can really burn ourselves without realizing it. God bless you,

    kristyk

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  • Posted

    Hi Zoe,

    I have cerebral palsy as well and was diagnosed with Raynauds last month, though I have had it for ages.

    I can see why you might think you do not not have Raynauds because it is typically associated with the fingertips and toes, but really Raynauds can affect EXTREMETIES, which is more broad. For me, it affects my entire right foot and lower leg. My leg is always numb and red and a tinge of blue to the point where sometimes I'd like it amputated. My grandpa, who had diabetes, always had red and blue legs and so ours matched smile

    But yes, I would say you have raynauds. Definitely bundle up and get dressed right away after the shower and do not stress yourself out. Try not to touch anything too cold (i.e. a train pole grip in the winter, can of pop) or stay in cold areas/rooms. Don't stress yourself out. Unfortunately they say to give up caffeine, but I can't eliminate coffee from my life. Drink plenty of water. These are main triggers for me.

    Please see a doctor with neuro disorder experience. They can give you a better diagnosis. I was advised to move to a warmer climate.

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    • Posted

      Hiya thank you so much for your reply I really appreciate it. Unfortunately it doesn't matter what I do I just can't get my feet warm. The only time they are warm is by the morning because I'm wearing two pairs of socks in bed and have a blanket over them a blanket over the duvet and it literally takes the whole night for them to warm up.

      What did you mean by damaged? Could damage already have happened, hence I'm in constant pain as if I'm in constant attack mode? I'm struggling to wear shoes and slippers even with my feet up.

      Thanks again for your reply and I really hope you are coping.

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    • Posted

      Hi again so sorry i got confused with the person above you! Ignore the question about damage!
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    • Posted

      Hi again so sorry i got confused with the person above you! Ignore the question about damage!
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    • Posted

      Have you tried the against-the-wall yoga pose?  I do that for 15 minutes most days and it helps a lot with that along with leg pain and digestion. Google it & give it a shot. 

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