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

Oh, many days I am as jaded as the next person....wait, something is crawling up my leg....FIRE ANT!!!! (ok, so I was just teasing.):D

Like I said, not much ya can do. I am not ready to jump off a bridge, so, I had better learn to cope. Misery may like company, but, company doesn't like misery...they stay away. So, at times, it pays to buck up a bit.

yes, tis true...

An accurate friend
 

I'm a female 31yrs. I been living with SNF since I was 26. I know a lot of people here sound happy and give positive advice about what they have found works for them to deal with SNF. However, the truth is nerve damage can not be healed ever. Our life changes and all we get is pain management but reality is no one knows how we feel. We look normal and healthy which makes it hard for family and friends to understand. And yes the first years of getting used to SNF can makes us feel sorry for ourselves. You can let it bit you. You have to find a reason to smile every day and be thankful to be alive. I can assure we all have felt or will feel like giving up. However, with time you will get used to it and laugh about it. I sure had come to an understanding that I will always be a mistery and even make jokes with my nephews that I have super powers because I can feel burns or cuts in my skin. I'm their super auntie which at the end of the day walks like a penguine and can predict changes in the weather.
Don't get me wrong, SNF is not a happy neuropathy. Doctors don't know everything but we are helping them for future sufferers of neuropathies.
Is ok to feel down for all we have lost and will lose, but at some point you have to accept it because is not going to change. Once you accept it you must find things that can fullfill you and make you feel usefull. It can be as simple as doing dishes, sweeping the floor or just cracking jokes with a friend. Don't become negative, because no one want to be around people who feel sorry for themselves. Teach your friends about your condition and speak your thoughts. Live every day to the fullest and value the little things in life. Even if is just wiping your Butt by yourself, because they might be a day you might not be able to experience it.
Every day I find little thing to be happy for because tomorrow...who knows?

Sarcasm is good... humor is good,... and we don't "look" sick
 

Before I had PN,
I woke at 5:30am, put on my running clothes, and ran 5 - 8 miles
Came home, and did 200 - 300 crunches, then pulled out the weights for 15 minutes. .
I showered, tooke my daughters to schook, then went to work! I was at work by 8:00 am. :cool:I was a single mom, with a great job and had just gotten my Masters in Business Administration!
I was raising two beautiful teenage daughters and one had a baby.
On weekends, I rode bikes with my friends up and down the hills of the Santa Cruz mountains. I hiked the Redwood forest and swam in the Pacific Ocean. My life revolved around physical activity. I am 5'8" tall and weighed 160.

At the age of 44, my mom shot and killed herself, and I was soon diagnosed with Genetic small fiber PN. I said goodbye to the old me, and hello to the "old" me! I went from being a 44 year old to being a 74 year old! :eek: I was soon in a wheelchair! The pain was so intense I couldn't walk. The meds were so hard to get right I lost two jobs. I was out of work for a long time.
Believe me, it was quite a long process to go through. I did a lot of grieving. I still do. My life is forever different! If you don't learn to accept that you are different... it's like a person who has lost a limb, you can be angry and mizerable all your life, or learn to accept it and adjust your life accordingly.
Yea, I have pain, yea, I walk slower, yea, I'm heavier now... no, I don't get up and run any more.. and no, I can't wear high heels any more... I use my exercise time to sleep now, :o and my daughters forget that I'm sick... :mad: but, it's who I am now, and I just have to learn to deal with it. Or walk around mad at the world, and that's no fun! I have waaaay too much fun laughing at the world :D :D
I'll find a way to lose some of this weight!

:grouphug:

I wonder what is the cause of your neuropathy? If it is hereditary CMT or primary amyloidosis, then yes, there is no healing for that kind of damage.

But there are over 100 other causes of nerve damage, and some do heal, stop progressing, or can have painful symptoms reduced. The degree of this varies from person to person depending on their genetics and causes, and what they do to help themselves.

I had severe hypothyroid induced PN of the hands and feet, and mine improved over 80-90% within a year of thyroid hormone supplementation. It is not cured, but it is liveable. Now that I am old, I am getting insulin resistance issues, but I control that with diet and supplements.

The peripheral nervous system can regenerate.
http://en.wikipedia.org/wiki/Neuroregeneration

I myself had surgery on my foot when I was 12 (51 yrs ago).
The removal of a cavernous hemiangioma was rather brutal, and I had sensory nerve damage to my instep for many years.
No feeling. Well, it all grew back. Not rapidly but it does have feeling now. (sometimes too much feeling and actual pain)It took about 20 yrs before I really noticed that my foot was no longer numb.
People who have the lateral femoral nerve severed in an attempt to stop the pain of meralgia paresthetica, often find the nerve grows back --painfully so. (special new techniques are now used to make sure this doesn't happen).

We have had many people here get better over time. The diabetics who work on their lifestyle, have posted tremendous gains.

I think with any chronic pain issue, with time, there can be a centralization of pain perception. When that happens, the pain persists, even though the cause/stimulus may have been removed. Central pain is what is being researched heavily today, and it is very resistant to treatment. We really need new agents for it IMO.

To Darlindeb
 

Hello Darlindeb,

You mentioned that you have CFS, along with your neuropathy. Are you thinking of having the XMRV test done when it becomes available in the next few months?