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Raynaud's white tongue

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Paula1968x
Paula1968x

I've had raynaud's in fingers and toes for as long as I can remember, but the last two years my tongue has started to go white and swell, then pain goes from neck right up to my ears, it's unbearable, I've had tests with rheumatologist which ruled out connective tissue disorder, scleroderma and polymyositis. I was then referred to ENT who found nothing and now getting referred back to rheumatology. Any advice anybody x

0 likes, 2 replies

2 Replies

  • Eddie_c
    Eddie_c Paula1968x

    Posted

    sorry to hear about your Raynauds. I've had it in my hands for years and now it's starting in my feet. I use handwarmers in winter and exam rubber gloves, even indoors.

    I wish you well, Paula!

  • emily59858
    emily59858 Paula1968x

    Posted

    Hi!

    I have the exact same thing and its the first time i've heard of anyone else having it. I can fully understand the pain your experiencing, it is so extreme - I find my posture and speech are also badly affected within attacks and that swallowing has become a bit difficult in general. Have you experienced this ?

    I have also been through multiple departments (maxio-facial /ENT /Neurology/ speech and language /rheumatology) and still can't seem to find any answers.

    I'm being treated for raynauds at the moment but haven't seen much relief (my attacks can happen in summer too).

    I hope you are getting on okay, please let me know if you have found any answers or relief?

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