Worst case scenario.
 

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.

Ive been Dx'd with PN for the past 12 years,
but with proper medications have been able
to run my own locksmith business- shop & road service,
with a little prudence on what I can, & cannot handle.
I do turn down some jobs that are too difficult, physically.
Shop service & key cutting, is the easiest for me to do.

I have pretty bad PN and some autoimmune junk going on.

I had to give up work. I am badly affected with FINE motor skills. I can't open a package, a jar, nothing. I can't get in IVs and stuff. I can't write very well with pencil or pen...I CAN type.

I do have a small organic farm...very small, and I can manage this, but, it is hard and I have a lot of pain and have to arrange my work so it gets done. Hubby helps me.

I can travel, but have to be careful to pace. I won't drive far alone, and only drive into big cities in an absolute emergency.

My legs are numb below the knee, but the numbness is more superficial....I can use them, I just have to be careful where I plant my feet. I use trekking poles when outside walking....or, lean on my grandson's stroller.

My hands are nasty and I am having surgery to try to fix the arthritis I also have. I have gotten to the end of my rope with disability and pain with the hands....so I am trying this fix with full knowledge it could backfire and get worse....

I have autonomic neuropathy and that is the MOST disabling part. If you can get away with not having the autonomic part, and can adapt to pain, you should do OK.

That said, I don't rule out being in a wheelchair at some time and I am fighting that with all I have. Once that happens your autonomic system functions very poorly. I live in a home with lots of stairs and that has probably been therapeutic...it forces me to walk up and down. I still even OPT to hang out laundry instead of use the dryer!

Try to stay on your feet. Try to stay active. Try to stay inspired. Try not to lose your sense of humor, you are going to need it. Try not to get to entangled with lots of meds. Try to eat well, even if it is baby food...(it's not all that bad.) Try to maintain social ties.:hug:

We all think about the worst case scenario....my advice....DON'T. Chances are, you will have suffering, some disability, but, you will prevail.

I am confined to my bed 24/7 due to my neuropathy... and while I don't see how it can get much worse (except to have autonomic PN, which I am thankful I don't)... I'm told it will get worse... so we'll see in time what that means for me. I've only had PN since December and have been bedridden since May.

Baby food?

Thanks for the honesty guys, it really is appreciated. I guess I will have to enjoy myself now and not worry about the future.

Yes, baby food. It's good for us that suffer with gastroparesis and other nasty things caused by autonomic neuropathy. :vomit2:

Mere

Hemse,

You don't mention precisely how your neuropathy manifests itself. That might be helpful for us to know.

Have only had neuropathy a relatively short time (January 2010), and really don't know how to answer your concerns about worsening.

Mine is non-length dependent small fiber neuropathy affecting the skin (burning, fabric intolerance). The burning part has gotten significantly better though not gone. Haven't been able to wear my "old" wardrobe or pants because those things feel like burlap now. It's called allodynia when something causes discomfort that shouldn't - like a soft sweater now feeling like sandpaper on the skin.

Try not to look at the WCS because it might never happen. As cycleclops pointed out, try to stay involved, social, keep a sense of humor, etc. And as most of us, just do the best you can for as long as you can. That would include trying to keep up with physical activity although it might be the most difficult thing you've ever done.

Best wishes.

Yes baby food...ensure...boost.

PN affects the entire body in some of us.

It is hard to tell you what is ahead for you, no one really knows, I also have SFPN with autonomic symptoms. I have only had this for 2 years and also worry what is ahead for me. I was only dx this year. If reading what other people are going through is what is ahead for us then I guess we have to do as cyclopes said and keep positive. It helps talking to other people and NT is the best place for that.

Take care

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:

Positive thinking won't do it for a CMTer.

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

positive
 

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