NeuroTalk Support Groups - Dear friends of mine

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Dear friends of mine (https://www.neurotalk.org/peripheral-neuropathy/113188-dear-friends-mine.html)

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.

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?

Quote:

Originally Posted by amit (Post 614859)

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

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:

Quote:

Originally Posted by Simpleboricua (Post 616748)

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.

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?