Life With Idiopathic Neuropathy

 Sometimes a personal account has far more impact than a scientific article with no personal appeal and that's the case with today's post from livingwithperipheralneuropathy.blogspot.com (see link below). There's no suggestion that the author has any connection with HIV but her account will certainly strike a chord with many people with neuropathic problems. Just knowing that someone else is going through the same as you can be a great comfort.

 

Living with Peripheral Neuropathy
Sunday, January 8, 2012 by Betsy

I've looked online quite a bit, and find that although there are tons and tons of pages out there that give drug review info, there really isn't anything that gives real life, valid info on Peripheral Neuropathy. There's no place for people to go to discuss how it feels to have to live in chronic pain with this debilitating condition. So I decided to start this blog in the hopes that others might find their way here and share their stories to help those who are newly diagnosed. It's a scary thing to face when it's brand new to you.

My name is Betsy. I was officially diagnosed in May of 2011 with "idiopathic" peripheral neuropathy. That means there is no known cause. The only possible cause in my case, but not confirmed, is that I took too many mega B vitamins over a period of 15 years or so, leading to a toxic level of vitamin B6 in my bloodstream. Apparently, that can cause neuropathy. So much for trying to take care of myself!

I started having symptoms LONG before I saw a doctor about it; it was only in hindsight that I was able to recognize them as early onset symptoms. I finally saw a doctor when the burning pain in my hands and feet became too much to bear. I thought it was arthritis. The doctor said, "It's neuropathy," and sent me to a neurologist where I was ultimately diagnosed.

My symptoms when I sought treatment were severe: My hands and feet would swell up and I was losing strength in my hands, unable to do normal tasks without great difficulty. For example, I have long hair, and holding a hairbrush hurt a great deal. I was having trouble cutting my meat up on my dinner plate. It hurt to use utensils. I could no longer peel a potato without great pain.

My feet burned with fire from within - BURNING PAIN. That was/is the only way to describe how it feels for me. I know for others, neuropathy brings a lack of sensation, a numbness or tingling. I almost wish it was that way for me. It got to the point where I wanted to literally chop my feet off at the ankles, because it seemed like that would be the ONLY way to make the burning pain STOP. Obviously, that is not even logical.

At night, the pain would either keep me awake, or wake me from a sound sleep. My hands would be swollen claws. I had to lie in a way that my feet wouldn't touch ANYTHING, not a sheet, not the mattress, not each other - they could touch nothing but air. I was eating ibuprofen like it was going out of style - and while it helped the swelling, it did nothing for the pain. I had to find a way to get this treated. It was affecting my job, my sleep, my life.

I had to wait 3 months before I could get in to see the neurologist. In the meantime, I researched my butt off, learning all that I could about "neuropathy." I self-diagnosed it as "peripheral neuropathy," and learned enough about it to scare the crap out of me. (I am one of those that tends to plan for the worst but hope for the best. The worst case scenarios for this condition are terrifying, but they are potential reality.)

My hands are starting to hurt too much to continue typing, so I'm going to stop here for now. I will pick up again later. Eventually I plan to publish helpful links for people that are learning to live with this as I am. I welcome any and all comments from people that have been/are now living with Peripheral Neuropathy, regardless of the cause. Please feel free to add links that you think might be helpful to others that are dealing with this chronic pain.
 
http://livingwithperipheralneuropathy.blogspot.nl/2012/01/living-with-peripheral-neuropathy.html