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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@florentina99

Hello.
My name is Tina and I am struggling with this neuropathy diagnosis which is from my Conns disease complications.It is soo difficult to be in pain all the time,I am looking for information to stop it getting any worse.
I am not diabetic, however Conns disease does cause you to feel hypo all the time and need to eat sugary foods which I'm trying to now avoid.The Dr prescribed pregabalin but for 3 days I simply slept day and night ,was horrendously lightheaded and felt like a zombie,even on a low dose ,no quality of life whatsoever Unfortunately the Conns disease does cause severe weakness as does my low vit d ,all corrected now.Its all the residuals I am now suffering from.I cannot believe this has happened to me, I was very fit and regularly walked 10 miles on a weekend until Conns struck.Along time to diagnosis,sadly.The frustration of being told is all in your head when you have a potentially fatal endocrine condition!! I find a hot bath really helps,hot water bottle and good friend to vent to.

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Replies to "Hello. My name is Tina and I am struggling with this neuropathy diagnosis which is from..."

Hi Tina, I posted a link earlier in the discussion that you might find helpful here - https://connect.mayoclinic.org/comment/915885/

Hi, Tina (@florentina99)

Welcome to the forum!

My situation is different, but I noticed you'd posted only minutes ago, and I didn't want you to think your post had not been seen. I know that you'll be hearing from others with Conn's disease in short order. In the meantime, though, two sites you might visit are the Foundation for Peripheral Neuropathy (the Foundation's homepage) and also the Foundation's YouTube page where, under Videos, you'll find recordings of the Foundation's many webinars on almost all forms of peripheral neuropathy. There's a Search feature that might lead you to some helpful information if you enter "Conn's disease." (I'm unable to give you the sites' URLs because my browser is not working at the moment.)

I wish you the very best!
Ray (@ray666)