Dear friends of mine
 

We don't know each other, but still you do know a lot about me, as we all in (almost) in the same boat of neuropathy. I would like to share with you some of my thoughts, even though it will be in my broken English....
I'm female, 53 years old and have idiopathic small fiber sensory neuropathy for 4.5 years. This (the SFN) knocked me down. It caused to a big change in my life. I stopped working (I worked in a lab. with too many chemicals and without the proper condition for this and I thought it might be toxic PN) and start to look for cure and relief to the PN. I think that a great part of my day is connected to my PN. I think, eat (vitamins), dress (comfortable cloth), walk (only with sport shoes) PN. (Beside some other things as going to some philosophy classes, do patchwork etc.) But - still have some fear from the future. I'm afraid of the pain, I'm afraid of the idea that the neuropathy can leads to mobility problems etc. And this fear stops me of doing other things. I don't know, most of the time, how to deal with this fear. How to live in the moment and not in the future. I see a psychologist, but he doesn't understand the neuropatic pains I have even though he tries to do his best...
I see here, in the forum, so many of you that live "happily" with their PN. Please tell me how do you manage with your PN. How do you explain to your friends what you have.
Many thanks for reading my post till here.
Have a nice day and take care.
Amit

You have to learn to live one day at a time. I have many issues, and could very easily sit at home and stress about them, but I can't, I have to work full time to take care of me, give me a place to live, food to eat. So, I go on, I smile on the bad days, and I don't bother telling friends unless there is a need on any one day. I also have celiac disease, and am a super sensitive, so every day, I have to constantly be on the alert for potential glutenings, which is a full time job where I work...not because it's a dangerous gluten area, but because my coworkers aren't careful.

As for my neuropathy, I research, and try things that may help. The best thing I have ever done is B12. I take 5000mcg daily of Jarrow B12, and it has helped. My balance is better, most of the time the buzzing stays minimal, and I do feel better. I too have sensory neuropathy. I also exercise every day, which has been a chore with my chronic fatigue syndrome, but I know it's necessary, so I do it. This morning, all through the exercising, my legs cried, and I was thinking, "Why, why does this have to happen?" Yet, I kept at it, and in the long run, the exercising will be one of the best things I do for me.

Chin up, get out, try not to dwell on neuropathy. I know that's easier said than done, but try.
:grouphug:

I trust that if I fall, some one will pick me up.

I have a cell phone with me all the time just in case I do fall which has happened

I was being literary....but I will keep the cell phone idea in mind.:Ponder:

I've become a cell phone wearer most waking hours
 

I write while recovering from a fractured wrist. All caused by PN. My pathetic balance did me in...with some help from my unstable ankle which I broke 8 years ago.

My PN is chemo induced and right now I'm almost in a total meltdown...can't walk without a rollator but can't use broken wrist to hold onto it. So I have cabin fever & have been housebound since Dec. 4th.

But I have to look on the bright side...at least I didn't break my neck!! And fractures heal. But if I hadn't had my cell handy, who knows when EMS would've shown up.

Gonna look into a gizmo worn around the neck since maybe when my next fall happens, I might not be in shape to dial. But until then my cell is never out of sight.

I understand about the fear of the future. I used to be worse about this but agree with debbie to take one day at a time. I try to focus on what I can do today to get through in the best way. My pain doc told me on days you have a good pain day do as much as you can and the bad pain days do the best you can. I see a psych too which was a very good choice for me with this because I was basically loosing my mind. Now I am still anxious and depressd but to a better degree and more rational. Are you on any meds for the mental side? A really good treatment I did was biofeedback. It really helped bring my anxiety down. I think also since life does change like what you stated about work etc finding things you can do that you enjoy helps one live in the present. For me going to a movie,bookstore,etc. I know these things don't take away from the fears and the pain but they do help distract. There is so much unknown with this condition. That to me is a very hard part. Anyhow hang in there and if you want an email buddy I am here

day by day
 

this is what I'm doing. live the future.
I took CBT treatment and it helped. As you (Daniella) said - the level of fear is reduced, but not enough.
I would like the doctors answer my million questions - but the don't know the answers. mostly - I feel lonely. I have my husband and the whole family - but still very upset with the rare condition I'm in. It is not like high blood pressure or things like that. no one can understand if I say that I'm numb all over my body all the time or understand the burning and tinglings I have.
I try to do things that I love to do and even enjoy most of the time - but live with different levels of fear and this I don't like. I would like to erase the fear. Is this possible?

It sounds like you are doing all you can. CBT was probably good. Perhaps you need ongoing help dealing with your fears.

I don't see much point in fearing what you can't control. Fearing it does not alter it. Fear is anxiety, and it makes things even worse. I am at the point now, where I expect to feel 'odd'. I expect to feel numb, tingling, in pain, short of breath, palpitating, nauseated, arthritic, like my head is a helium balloon on a string floating above the rest of me....echo-ey like I am an empty barrel. That is the disease I have and I can't really expect any one who does not have this to understand how I feel. Nor do they need a play by play description. They can see when I can't keep up, can't breathe, can't sleep, can't eat, etc.

Worst comes to worst, and I keel over, pass out and things become some one else's problem....my family, the EMTs, the ER staff. At least for a temporary period of time.

We are all mortal.

I hope it doesn't disable me any worse, but it may. I hope it doesn't shorten my life, but then again, I don't know what my 'allotment' of time was. I feel like I have lived many lifetimes in this one life. I would love to pack more living into the days I have, but, unfortunately, my strength and stamina are limited, depending on the day. Given what I used to do, maybe this isn't a real bad thing.

Fear is part and parcel of the existential crisis we all have to deal with. Without fear, would we have courage?

I guess, I have to trust that I will cope with whatever comes my way. Hopefully with dignity and humor. Hence, I am not worrying about who picks me up....I meant that in the philosophical sense, in that you have to trust others and a higher power.

It sux to be sick. It sux worse to be sick and look great. I am not recommending denial. It would be worse to be imminently terminal and have to deal with that in the prime of life. Life is not a rose garden....it is more like a briar patch or a nest of fire ants.

Cyclelops, I really like what you say here... Very true and honest... You have such an unaffected outlook on chronic illness and life.

Mere

Mere