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Behcet's disease: Would like to connect with others

Autoimmune Diseases | Last Active: Sep 26, 2021 | Replies (5)
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@richardrr

Thanks Colleen.
My feet have pretty much lost all sensation and I get pain into them. My ankles feel frozen and unable to move but can as normal and my calves feel as though they are being squeezed in a vice. As far as pain it is mostly in my feet and shooting nerve pain from time to time in the calves.
There isn't much variation between the lack of feeling and discomfort day or night, hence poor sleep.

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Replies to "Thanks Colleen. My feet have pretty much lost all sensation and I get pain into them...."
Colleen Young, Connect Director | @colleenyoung | Sep 26, 2021

Richard, if you haven’t already, I suggest following the Neuropathy group https://connect.mayoclinic.org/group/neuropathy/

While neuropathy can’t be reversed, members share tips and tricks that might prove to be helpful for you.

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Chris Trout, Volunteer Mentor | @artscaping | Sep 26, 2021

Good evening @richardrr. @johnbishop has invited me to get to know you and your neuropathy pain that appears to be in your feet, ankles and calves. And as @colleenyoung reminded us, there is not a cure waiting in the wings. We do have the opportunity to learn our "tips and tricks" from each other. As he may have told you, John Bishop has no pain with his small fiber peripheral neuropathy. I do. I have the same diagnosis that you do, complete with the tingle, tangles and pain.

I notice that my pain is not only in my feet and ankles but also in my thighs. That has been a tough area for me to control. I usually wake up with heaviness and bruising-type pain in my thighs. It is "heavier" if the barometric pressure is lower. If I just lie there for a while, it may subside enough for me to get out of bed and get going.

Here is what has been helping me get going for quite a few years now.
#1. medical cannabis......either a tincture or topical in dosages and component percentages selected for your issues.
#2. MFR.....myofascial release therapy twice a week to release restricted areas and prevent swelling. I don't think I would be driving without this form of treatment.

Have you heard from anyone about these two options? Let me know if you want additional information.
May you be free, protected, and safe from inner and outer harm.
Chris

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