NeuroTalk Support Groups - Worst case scenario.

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- - Worst case scenario. (https://www.neurotalk.org/peripheral-neuropathy/130658-worst-scenario.html)

Positive thinking is the way ahead guys, agreed. Thanks.

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Its not about how hard we hit, its how hard we can get hit and keeo moving forward.

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Originally Posted by hemse (Post 686960)

Positive thinking is the way ahead guys, agreed. Thanks.

Being positive is getting harder. Still must be. I have had this for about eight years now. My feet are gone (completely numb) My hands burn and this is what is the worst now. I'm on gabapentin and it is helping a little.

I just finished reading "Wheat Belly" by Wm. Davis, MD who is a cardiologist.
He talks about a lot of things in this book, and feels diabetes (and a lot of other illnesses) can be cured by eliminating wheat. He thinks it is at the root of the obesity problem in the U.S. At one point he said people with peripheral neuropathy will not see any improvement until they eliminate wheat from their diet. The "wheat" we are consuming now is not the same wheat referred to as amber waves of grain in "America the Beautiful." It's been altered extensively.

For me personally, at worst its in bed crying and not even believing how severe the pain can be. Feeling like I'm in a pit of fire and believing I am going to burst into falmes. Waking up every morning and even from naps with numb hands. Being on heavy hitters like oxycodone and lyrica , and still feeling like hell.
But, also knowing that some days this is totally manageable. Knowing that there will be better treatments one day. Hopefully soon.
Knowing I can sleep to escape the pain. My heart goes out to you.
Use this forum as a lifeline- I think many of us do. :hug:

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Originally Posted by David L. Paynter (Post 960133)

Positive thinking won't do it for a CMTer.

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Originally Posted by hemse (Post 686621)

Ok guys, I do hate to be negative and dwell on what I cant change but I feel the need to ask this question. For those of you who have not met me before I was diagnosed with neuropathy nearly a year ago. At the time my doc told me it would get worse over a period of months and years, as it was it got worse in weeks. It levelled out but has recently started getting worse again.

I want to pick you guys brains about what I can expect, I know it might seem maudlin but if you guys are willing to talk about it then I want to know how bad it can get from your experience. I want to know if any of you have had to give up work because it got so bad? I have heard stories of people being housebound it got so bad. Has this happened to any of you?

I know there will be arguments about not worrying myself and to try and be more optimistic. Thanks to you guys I have never felt more confident about my condition as you have been a wealth of knowledge in things to do to help it. I just want to get the full spectrum of the condition so I can get a balanced view.

Another reason I am asking you is that as I mentioned earlier I have read horror stories on other websites. Left unchecked these stories will make me worry more than true accounts from people who suffer with it daily. Thanks , Hemase.

I was housebound and almost had to quit my job because of this. I thought I had autonomic neuropathy but what I had was neuropathy, undiagnosed thyroid problems,anxiety due to all this and chronic pain. I realized that not everything I was suffering was related to my PN and PN was not a catch all phrase for everything that was wrong with my body. We can develop overlapping medical problems. So my advice to you is if you worry about this too much it will take over and cause conditions such as depression, anxiety and so forth. Not even healthy people know what's around the corner for them or what the future holds in terms of health.don't expect to get worse, expect to get better.

Wishing you the best of health.
Aussie

i try to be positive too! its hard, believe me. my PN has been with me my whole life, not sure why i was born with it. i have just started taking the b12 drops under my tongue at night, gross, but having faith in those and God that they will help! my toes are all curling under, i can not wear heels, shoes hurt sometimes. i am trying to stay as active as possible. btw i am a 33 year old mother to 3, ages 13- 2 1/2, i am tired a lot, but i have to keep on trucking :) i pray a lot, there has to be a cure for this crap, there must. i was finally diagnosed this past july when i to the dr for it. i have known something was wrong with my feet for years, just ignored the burning and numbess.

Positive yet worried

My symptoms improved gradually after quitting prilosec and taking supplements discussed on this forum. I still get flares that last a couple of weeks or longer and then mostly go away for weeks at a time. Light numbness in soles of feet , coldness, tingling in fingers, odd scalp sensations, etc. Going through one now, but it's winding down. I think mine is due to nutritional PN from years of using acid blockers.

My fear is that one day it won't subside. Makes me thankful for the blessings that I do have.

mine advanced quickly over 5 years and there has been some improvement recently after trying some of the supplements.

Its all relative though. I was just reading about the lady in the link below who also suffers from severe burning although not nueropathy

http://www.smh.com.au/national/healt...228-2f7zb.html

everyone's pain hurts wether its new and small or big and adapted to