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Old 01-02-2010, 01:34 PM   #1
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Join Date: Dec 2009
Posts: 3
Kim H HB User
Hi, I am new to this forum. I have a question about small fiber neuropathy pain.

My dad had small fiber neuropathy. I am trying to understand the pain associated with small fiber neuropathy. My dad said he was in pain 24/7. He had severe burning in his feet and was taking medication for pain, high blood pressure and depression to help cope with the pain from the neuropathy. I lost my dad on 11/7/09. He took his own life. He couldn't live with the physical pain. I believe the side effects from some of his medications caused him to do what he did.

I just want to know how much physical pain my dad was feeling. I am trying to understand why he did what he did.

I apologize if this is not the right forum for this question. I am also sorry that so many of you are living with small fiber neuropathy.

Thank you,
Kim

 
Old 01-02-2010, 08:55 PM   #2
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Join Date: Dec 2009
Location: ohio snowbelt
Posts: 4
penney lane HB User
Wink Re: Hi, I am new to this forum. I have a question about small fiber neuropathy pain.

Hi to Kim and to everyone here who
suffers from sfn. I am also new my
name is Penney , I have sfpn had it
for approx 10 yrs. It is getting worse.
Kim the pain is intense and constant
and sharp, stabbing, and shooting
pain. At least mine is. I am so sorry
for the loss of your father. Also he
probably was depressed from contin
ous discomfort. I pray that he is at
peace now and free of pain. God rest his soul. Penney .

 
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Old 01-02-2010, 09:14 PM   #3
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Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Re: Hi, I am new to this forum. I have a question about small fiber neuropathy pain.

Hello Kim, I am so sorry to read about your father.........
I posted this letter a while ago that may help you understand how your father felt, I hope it helps.

A Letter to Normals From One in Chronic Pain:

Having chronic pain means many things change, and a lot of them are invisible.
Unlike having cancer or being hurt in an accident, most people do not understand even
a little about chronic pain and its effects, and of those that think they know, many are actually
misinformed.


In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn't mean I'm not still a human being. I have to spend
most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably
don't seem like much fun to be with, but I'm still me, stuck inside this body.
I still worry about school, my family, my friends, and most of the time, I'd still like to hear you
talk about yours, too.

Please understand the difference between "happy" and "healthy".
When you've got the flu, you probably feel miserable with it, but I've been sick for years.
I can't be miserable all the time. In fact, I work hard at not being miserable.
So, if you're talking to me and I sound happy, it means I'm happy. that's all.
It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better,
or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!"
I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that,
you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that
I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes
yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed,
or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo.
I never know from day to day, how I am going to feel when I wake up. In most cases,
I never know from minute to minute. That is one of the hardest and most frustrating components of
chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating",
"being sociable" and so on, it applies to everything. That's what chronic pain does to you.



Please understand that chronic pain is variable. It's quite possible (for many, it's common) that
one day I am able to walk to the park and back, while the next day I'll have trouble getting to the
next room. Please don't attack me when I'm ill by saying, "But you did it before!" or
"Oh, come on, I know you can do this!" If you want me to do something, then ask if I can.
In a similar vein, I may need to cancel a previous commitment at the last minute.
If this happens, please do not take it personally. If you are able, please try to always remember
how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better,
and can often make me seriously worse. You don't know what I go through or how I suffer
in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it",
may frustrate me to tears, and is not correct.
If I was capable of doing some things any or all of the time, don't you know that I would?
I am working with my doctors and I am doing what I am supposed to do.
Another statement that hurts is, "You just need to push yourself more, try harder".
Obviously, chronic pain can deal with the whole body, or be localized to specific areas.
Sometimes participating in a single activity for a short or a long period of time can cause more damage
and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense.
You can't always read it on my face or in my body language. Also, chronic pain may cause
secondary depression (wouldn't you get depressed and down if you were hurting constantly for
months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now,
that probably means that I do have to do it right now, it can't be put off or forgotten just because
I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive,
nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought,
and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood,
if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better.
This can involve side effects or allergic reactions, as is the case with herbal remedies.
It also includes failure, which in and of itself can make me feel even lower.
If there were something that cured, or even helped people with my form of chronic pain,
then we'd know about it.
There is worldwide networking (both on and off the Internet) between people with chronic pain.
If something worked, we would KNOW.
It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure,
then so be it. I may take what you said and discuss it with my doctor.



If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact,
I try very hard to be normal. I hope you will try to understand. I have been, and am still,
going through a lot. Chronic pain is hard for you to understand unless you have had it.
It wreaks havoc on the body and the mind. It is exhausting and exasperating.
Almost all the time, I know that I am doing my best to cope with this, and live my life to
the best of my ability. I ask you to bear with me, and accept me as I am.
I know that you cannot literally understand my situation unless you have been in my shoes,
but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick.
I need you to visit me when I am too sick to go out.
Sometimes I need you help me with the shopping, the cooking or the cleaning. I may
need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life.
You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again,
just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening.
It really does mean a lot.

Aussie

Last edited by Aussie100; 01-02-2010 at 09:31 PM.

 
The following user gives a hug of support to Aussie100:
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The Following 2 Users Say Thank You to Aussie100 For This Useful Post:
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Old 01-03-2010, 06:50 AM   #4
Newbie
(female)
 
Join Date: Dec 2009
Posts: 3
Kim H HB User
Re: Hi, I am new to this forum. I have a question about small fiber neuropathy pain.

Penny, thank you so much for your response. You are 100%correct when you say he was depressed from the pain. Who wouldn't be depressed in that much pain? You are in my prayers. I pray that you have more better days than bad days.

Thank you so much for your response. It means a lot to me!

Kim


Quote:
Originally Posted by penney lane View Post
Hi to Kim and to everyone here who
suffers from sfn. I am also new my
name is Penney , I have sfpn had it
for approx 10 yrs. It is getting worse.
Kim the pain is intense and constant
and sharp, stabbing, and shooting
pain. At least mine is. I am so sorry
for the loss of your father. Also he
probably was depressed from contin
ous discomfort. I pray that he is at
peace now and free of pain. God rest his soul. Penney .

 
Old 01-03-2010, 06:54 AM   #5
Newbie
(female)
 
Join Date: Dec 2009
Posts: 3
Kim H HB User
Re: Hi, I am new to this forum. I have a question about small fiber neuropathy pain.

Aussie, your letter is wonderful. I appreciate you taking the time to respond to me. I wish you could hand that letter to every new person you meet. Unless you are in chronic pain you don't understand. My brother and I would get our hopes up when my dad was having a good day. After reading your letter know I know that my dad's good day was still full of horrible pain. My dad did his best to keep going. The pain and depression from pain got to him.

Thank you so much! Just like I posted to Penny, I will pray that you have more better days than bad days.

Kim

 
Old 05-06-2011, 05:06 PM   #6
Junior Member
(female)
 
Join Date: May 2011
Location: medford,oregon, usa
Posts: 24
leighallen HB Userleighallen HB User
Re: Hi, I am new to this forum. I have a question about small fiber neuropathy pain.

Thank you so much for this letter. I can't tell you how much it helped me to be able to read this and know someone REALLY knows what I feel. I shared it with my sister and have saved it to give to my niece who helps me a lot also. I tried to communicate, but this letter just puts everything in to perspective. Thank you for sharing.

 
Old 05-07-2011, 05:27 AM   #7
Junior Member
(female)
 
Join Date: Apr 2011
Location: Lafayette, IN USA
Posts: 29
tbowles6 HB User
Re: Hi, I am new to this forum. I have a question about small fiber neuropathy pain.

Hi Aussie,

I thank you for sharing your letter here with us. It describes so many things that I would love to tell my family and friends but end up getting too tired trying to explain so I just resort to smiling and nodding. This helps me realize that I'm not alone. I hope you have more sweet days than bad.

Kim,
I hope you have found your answers. I have nothing to add as this says a lot. I pray you get some peace and comfort.

Tracy

 
Old 05-07-2011, 06:42 PM   #8
Member
(male)
 
Join Date: Jan 2010
Location: Whitehall, PA U.S.
Posts: 97
awlright HB Userawlright HB Userawlright HB Userawlright HB Userawlright HB Userawlright HB User
Re: Hi, I am new to this forum. I have a question about small fiber neuropathy pain.

Kin, I thing what Aussie wrote is right on the money and I believe you grasped that immediately. I too live with pain, but fortunately not all the time, some of us are lucky and we don't know why nor do the doctors. Life is simply not fair. Why should I have long stretches of so many good days and someone with my same condition (as far as medical science knows) suffer so much more. Essentially my point is this: your dad did that best he could for as long as he could for you and all the others he loved and then (and I'm convinced that this was his right) decided it was enough. He likely wanted to be of sound mind and able to still make a choice. I don't for a moment give myself over to the belief this society holds, that one has to be depressed or beaten down or overcome by medication to decided to call it a day. The human condition provides for us to comprehend that death in and of itself is part of life; because life is a renewable process that we see with the seasons and in every aspect of nature. We are part of that nature. Perhaps the only creatures who can decide when we would like to start the renewable dynamic. We should never give up that right to anyone or any institution. May the creator of this univere bless you and yours and may your very heroic father rest in the peace he came to understand was meant for him at the time of choosing.

 
Old 06-28-2011, 03:44 AM   #9
Newbie
(female)
 
Join Date: Jun 2011
Location: Cornwall, England
Posts: 1
seahawk HB User
Re: Hi, I am new to this forum. I have a question about small fiber neuropathy pain.

Quote:
Originally Posted by Aussie100 View Post
Hello Kim, I am so sorry to read about your father.........
I posted this letter a while ago that may help you understand how your father felt, I hope it helps.

A Letter to Normals From One in Chronic Pain:

Having chronic pain means many things change, and a lot of them are invisible.
Unlike having cancer or being hurt in an accident, most people do not understand even
a little about chronic pain and its effects, and of those that think they know, many are actually
misinformed.


In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn't mean I'm not still a human being. I have to spend
most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably
don't seem like much fun to be with, but I'm still me, stuck inside this body.
I still worry about school, my family, my friends, and most of the time, I'd still like to hear you
talk about yours, too.

Please understand the difference between "happy" and "healthy".
When you've got the flu, you probably feel miserable with it, but I've been sick for years.
I can't be miserable all the time. In fact, I work hard at not being miserable.
So, if you're talking to me and I sound happy, it means I'm happy. that's all.
It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better,
or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!"
I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that,
you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that
I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes
yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed,
or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo.
I never know from day to day, how I am going to feel when I wake up. In most cases,
I never know from minute to minute. That is one of the hardest and most frustrating components of
chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating",
"being sociable" and so on, it applies to everything. That's what chronic pain does to you.



Please understand that chronic pain is variable. It's quite possible (for many, it's common) that
one day I am able to walk to the park and back, while the next day I'll have trouble getting to the
next room. Please don't attack me when I'm ill by saying, "But you did it before!" or
"Oh, come on, I know you can do this!" If you want me to do something, then ask if I can.
In a similar vein, I may need to cancel a previous commitment at the last minute.
If this happens, please do not take it personally. If you are able, please try to always remember
how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better,
and can often make me seriously worse. You don't know what I go through or how I suffer
in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it",
may frustrate me to tears, and is not correct.
If I was capable of doing some things any or all of the time, don't you know that I would?
I am working with my doctors and I am doing what I am supposed to do.
Another statement that hurts is, "You just need to push yourself more, try harder".
Obviously, chronic pain can deal with the whole body, or be localized to specific areas.
Sometimes participating in a single activity for a short or a long period of time can cause more damage
and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense.
You can't always read it on my face or in my body language. Also, chronic pain may cause
secondary depression (wouldn't you get depressed and down if you were hurting constantly for
months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now,
that probably means that I do have to do it right now, it can't be put off or forgotten just because
I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive,
nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought,
and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood,
if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better.
This can involve side effects or allergic reactions, as is the case with herbal remedies.
It also includes failure, which in and of itself can make me feel even lower.
If there were something that cured, or even helped people with my form of chronic pain,
then we'd know about it.
There is worldwide networking (both on and off the Internet) between people with chronic pain.
If something worked, we would KNOW.
It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure,
then so be it. I may take what you said and discuss it with my doctor.



If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact,
I try very hard to be normal. I hope you will try to understand. I have been, and am still,
going through a lot. Chronic pain is hard for you to understand unless you have had it.
It wreaks havoc on the body and the mind. It is exhausting and exasperating.
Almost all the time, I know that I am doing my best to cope with this, and live my life to
the best of my ability. I ask you to bear with me, and accept me as I am.
I know that you cannot literally understand my situation unless you have been in my shoes,
but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick.
I need you to visit me when I am too sick to go out.
Sometimes I need you help me with the shopping, the cooking or the cleaning. I may
need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life.
You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again,
just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening.
It really does mean a lot.

Aussie
Hi Aussie100, and to everyone else on this post. As a newcomer to this site I was only diagnosed with Peripheral Neuropathy 6 months ago, so I can't say that I know exactly what it's like to live with constant pain for years - however, I do know what it's like to have this horrible condition for months. The pain in my right foot, the feelings of burning/ cold, numb/pain and the "crampy spasms" in my foot and calf drive me crazy. On another post you listed a number of supplements that you found helpful. I plan to try them. Many thanks and have a good (bearable?) day.

 
Old 06-28-2011, 07:36 AM   #10
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(male)
 
Join Date: Apr 2011
Location: Phoenix, AZ
Posts: 386
RisingParrot HB UserRisingParrot HB UserRisingParrot HB UserRisingParrot HB UserRisingParrot HB UserRisingParrot HB UserRisingParrot HB UserRisingParrot HB UserRisingParrot HB User
Re: Hi, I am new to this forum. I have a question about small fiber neuropathy pain.

Kim....the members here hit it on the head. I'm VERY sorry for your loss and know your father is looking down on you and is no longer in pain.

Aussie...awesome letter...so true and to the point. Being in constant pain just plain sucks...no way around it or to sugarcoat it. As I say..my day pain wise is either bad or awful.

I hope everyone has as great a Tuesday as they can.
J

 
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