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Old 08-11-2011, 06:43 PM   #1
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Talking Polyneuropathy; motor and sensory

Does anyone else have this diagnoses? If so how do you cope with the constant pain? I'm tired of all the doctors who don't know anything or what to do when you explain how you are suffering. I don't want anymore pills. I get sick just thinking about them and the hold they have over me.

Most of all i am very tired. So tired of being sick, tired of doctors and their offices. I hate that i'm there so much they know me by name. Most of all i'm tired of the pain that i can't describe to the people around me.

Is this as good as it gets? Should i let go of the hope for a cure?

Even with all the meds my feet are so sore i can barely put weight on them. My bladder overfills and runs over. My stomach takes spells were everything i eat comes back up. This problem has caused me many hospital stays.

Sorry for the rant,i guess i just have a lot of built up stress. Thanks in advance for any replies.

I hope that everyone has a night as good as it gets.

 
Old 08-12-2011, 08:31 AM   #2
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Re: Polyneuropathy; motor and sensory

Sorry you are having a bad time. My PN doesn't ever "go away" so sadly You might be dealing w/at least that until they find out why you have it and how to treat it. Like you I HATE going to doctor apts...Kath makes sure I have an Ipod w/me...when waiting I put that on..put my head down and just wait to be called...and w/me after 4 Neurologists and many many tests they don't know why I have PN so it appears it is something I will deal w/for the rest of my life...I just try and NOT make it own me...do what I can..don't let it beat me down.

Again sorry you are in such pain and hope you have a better rest of the day.
J

 
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Old 08-12-2011, 11:11 AM   #3
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Re: Polyneuropathy; motor and sensory

MY NEUROPATHY IS IDIOPATHIC IN NATURE, SO I KINDA KNOW IN MY HEART AFTER 9 YEARS THAT I WILL ALWAYS DEAL WITH IT ON SOME LEVEL. IT JUST PLAIN HURTS MY HEART SOMEDAYS.

I HAVE GRANDCHILDREN I CAN NOT PICK UP AND CARRY BECAUSE I WOULD MOST CERTAINLY DROP; I HAVE CHILDREN WHO WILL NOT SPEAK TO ME BECAUSE THEY SAY THAT I AM SELF CENTERED; MY MOTHER IS ALWAYS TELLING ME THAT THE DEVIL HAS AHOLD ON ME AND THAT IS WHAT CAUSES MY PAIN.

SO YOU CAN SEE WHY I AM FRUSTRATED. THE CONSTANT PAIN ONLY ADDS TO MY FAMILY PROBLEMS. MY HUSBAND IS MY WORLD BUT NOT A DOCTOR SO HE DOES HIS BEST. WE ARE BEST FRIENDS AND HE HAS BEEN WITH ME SINCE THE START OF THIS NIGHTMARE.

I ADMIT TO HAVING A PROBLEM SEPERATING MY ILLNESS FROM WHO I AM OR WHAT I USED TO BE. THAT IS WHAT YEARS OF LIVING WITH ANY ILLNESS DOES TO SOME PEOPLE IN MY OPINION.

I WILL CONTINUE TO READ HERE ABOUT THE STRUGGLE OF OTHERS AND HOW THEY DEAL DAILY WITH THIS MONSTER WE ALL LIVE WITH.

THANK YOU FOR THE SUPPORT.

 
Old 08-12-2011, 12:26 PM   #4
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Re: Polyneuropathy; motor and sensory

Quote:
Originally Posted by 6122000 View Post
MY NEUROPATHY IS IDIOPATHIC IN NATURE, SO I KINDA KNOW IN MY HEART AFTER 9 YEARS THAT I WILL ALWAYS DEAL WITH IT ON SOME LEVEL. IT JUST PLAIN HURTS MY HEART SOMEDAYS.
I'm in yr 4 of dealing w/my Idiopathic PN...like you I realize that I'm going to be dealing w/the pain for my life. It for sure isn't something I'd wish on my worst enemy.

Quote:
Originally Posted by 6122000 View Post
I HAVE GRANDCHILDREN I CAN NOT PICK UP AND CARRY BECAUSE I WOULD MOST CERTAINLY DROP; I HAVE CHILDREN WHO WILL NOT SPEAK TO ME BECAUSE THEY SAY THAT I AM SELF CENTERED; MY MOTHER IS ALWAYS TELLING ME THAT THE DEVIL HAS AHOLD ON ME AND THAT IS WHAT CAUSES MY PAIN.
Very sorry...that would be hard but maybe just holding them while you are sitting would be an way to be close and you get to hug them.

For your children and mother to say and do those things are wrong. PN isn't something you can control or just take a pill and you are better.

Quote:
Originally Posted by 6122000 View Post
SO YOU CAN SEE WHY I AM FRUSTRATED. THE CONSTANT PAIN ONLY ADDS TO MY FAMILY PROBLEMS. MY HUSBAND IS MY WORLD BUT NOT A DOCTOR SO HE DOES HIS BEST. WE ARE BEST FRIENDS AND HE HAS BEEN WITH ME SINCE THE START OF THIS NIGHTMARE.
PN affects us not only in the constant pain but many ways...it is hard to NOT think about it.

I too am married to my best friend...and she also has been w/me since I got my diagnosis. She is my ROCK!!! w/me for every appointment and keeps my medical records handy so we have them if needed. I'm also lucky to have many friends that are there for me if I need to talk or get advice. I appreciate them all.

Quote:
Originally Posted by 6122000 View Post
I ADMIT TO HAVING A PROBLEM SEPERATING MY ILLNESS FROM WHO I AM OR WHAT I USED TO BE. THAT IS WHAT YEARS OF LIVING WITH ANY ILLNESS DOES TO SOME PEOPLE IN MY OPINION.
It for sure does that...I TRY and be positive...there is nothing I can do about "fixing" my issue besides NOT let it beat me down. I'm happy to be able to get out of bed and go to work. Some days are for sure worse then others...I'm either in a LOT of pain or it is AWFUL...I know every second I'm awake I'll be in pain BUT I'm try and live my life. I look at it that there are many others w/a LOT more health issues then I have and I'm lucky to be alive and have a great family and friends.

Quote:
Originally Posted by 6122000 View Post
I WILL CONTINUE TO READ HERE ABOUT THE STRUGGLE OF OTHERS AND HOW THEY DEAL DAILY WITH THIS MONSTER WE ALL LIVE WITH.
This forum has helped me a lot and like you I read posts here to help me deal w/my condition. I talk with a few here I consider friends even though we've never met.
Quote:
Originally Posted by 6122000 View Post
THANK YOU FOR THE SUPPORT.
That is what we are here for....we know how the others people that post here deal with....we need to have a strong bond/vent when we need to and support each other.

I hope you have a great Friday night.
J

 
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