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.

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

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.

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.

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.

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