Living with Polyneuropathy CIDP, GBS, & CMT

GBS Burning Feet

Hi, those of you who know me out there, know that I’m coming along very well four years after GBS but this past week I developed a horrible burning in the arch of my right foot. I Goggled it and saw that Gullain Barré was mentioned as one of the causes.
I have a doctor’s appointment in ten days but. I would like to hear your experiences with this problem. Thanks.

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I’ve had my whole left foot from ankle down burn for 6.5 years after GBS. My right foot is about 1/3 the pain and only across the ball of the foot. Im on a lot of neurological pain meds, but still there. Unfortunately or fortunately you get used to it

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I’ve had bi lateral foot burning pain since CIDP onset too many years ago. Remission stopped spreading of pain which early on increased to pain my lower legs and into left thigh. Remission stopped the spreading but not the pain from damaged nerves. I must have my feet elevated, not down. I take nerve meds and pain meds, some illegal herbs too. Life can become tolerable, but don’t decide you must live in pain! There are meds to help reduce pain but they will only be scripted by pain management doctor, not your neurologist. Live each day with faith! You are a dearly loved child of God!

And God bless you William. :latin_cross:

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I’m not familiar with what you’ve previously struggled with for 4 years, but my foot pain wasn’t sudden onset like you are describing, but a slowly expanding pain from the tips of big toes thanks spread from there over several months and kept expanding effected area for a year or more. Then stopped and remission later after 4 years of infusions

When you were diagnosed with CIDP and received no treatment, what was CIDP doing to your body at the time? Your symptoms? Was it hard to get the right diagnosis? Did you need several doctors to get the right diag?
Do you have pain?

Hi William, I’m not sure that it’s me you’re asking. I had quite severe GBS. I live in Denmark where and in the city where we have one of the leading GBS doctors in the world so that was lucky. With the excellent treatment I received and still am far as rehab training and national health system is concerned I’m leading a happy, normal life. I was just wondering about this foot pain. It gets better as the day moves on and is no way hinders my life which I look upon as a very normal one. Mary

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All wonderful news! Blessed be the name of the Lord who heals and restores.

Burning feet for years now and it does seem to be getting worse. True, you do get used to it after awhile, but it can be really irritating. The only thing that I’ve found is Cannabis. I use a tincture mixed in with a rye and Pepsi… Put a bit of rye because I like the taste, but my wife doesn’t…so she won’t take a drink by accident. CBD doesn’t work for everyone, but it sure helps me!