It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Neuropathy Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 03-12-2009, 03:13 PM   #1
Veteran
(male)
 
Join Date: Oct 2006
Location: OZ
Posts: 382
Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Helping others understand about chronic pain

Whilst some family members & friends can be supportive having PN but far to often others clearly don't understand nerve pain at all, maybe if they read this it may help them understand.

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

 
Reply With Quote
The following 3 users give hugs of support to: Aussie100
bell486 (08-23-2011), Capewind (08-23-2011), Dan101 (09-08-2011)
The Following 5 Users Say Thank You to Aussie100 For This Useful Post:
Capewind (05-09-2011), June89 (04-10-2012), LadybugQ (08-10-2011), Pain in NH (08-22-2011), Spouse of Pain (04-29-2012)
Sponsors Lightbulb
   
Old 03-12-2009, 11:14 PM   #2
Senior Member
(female)
 
Join Date: Dec 2008
Location: Vancouver BC Canada
Posts: 264
daisymaegrl HB Userdaisymaegrl HB Userdaisymaegrl HB Userdaisymaegrl HB Userdaisymaegrl HB Userdaisymaegrl HB Userdaisymaegrl HB Userdaisymaegrl HB Userdaisymaegrl HB User
Re: Helping others understand about chronic pain

Your letter made me cry Aussie. You have just put into words something that I am unable to verbalize or put down on paper. It is a wonderful letter! I am amazed as it points out everything I would want to say to people who say I can't be sick or in pain cause I look so well. Thank you!!!

 
Reply With Quote
Old 03-13-2009, 05:26 PM   #3
Veteran
(male)
 
Join Date: Oct 2006
Location: OZ
Posts: 382
Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Re: Helping others understand about chronic pain

Hi daisy, although I am recovered from my nerve damage these days I can very well remember the isolation and lack of compassion off others that just didn't get it, trouble with neuropathy it doesn't show pain, like if someone poured boiling hot oil over someones skin, but as the good people know here it feels the same just doesn't show it, I found these words in this letter helpfull to those who persisted in saying hurtfull remarks to me.

take care
Aussie

 
Reply With Quote
Old 03-13-2009, 05:31 PM   #4
Senior Member
(male)
 
Join Date: Jun 2006
Location: Bakersfield, CA, USA
Posts: 142
captinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB User
Re: Helping others understand about chronic pain

Aussie that was a great and very articulate way of describing what us with chronic pain deal with on a daily 24/7 basis. What people dont get is its 24/7, there is no real good days ,at least for me anyway. You put to words what I couldnt and for that thank you, I'm making copies now to hand to out to people that dont understand and most dont. With stem cell research opened up maybe will see some help for some of these incidious diseases. THANKS AGAIN AUSSIE

 
Reply With Quote
Old 03-25-2009, 02:00 PM   #5
Junior Member
(male)
 
Join Date: Mar 2009
Location: san diego
Posts: 29
jjm0019 HB User
Re: Helping others understand about chronic pain

Aussie - You said you've recovered from you never damage. What did you do to get better? Are you still in chronic pain today? If not, what have you done or taken to feel better? I was recently diagnosis with Small Fiber Neuropathy. I'm 31 now and have been living with the symptoms since age 18. Needless to say, it has been a struggle.

Regards,

Jason

 
Reply With Quote
Old 03-26-2009, 08:07 AM   #6
Newbie
(male)
 
Join Date: Mar 2009
Location: london, uk
Posts: 3
Delboy75 HB User
Re: Helping others understand about chronic pain

It was just by chance i came across your statement about chronic pain and living with it...i have been like this for 2 years now and still can't see a light at the end of the tunnel....your words chill me to the bone as i feel IDENTICAL to the way you are feeling.....i know it helps neither you or me, but at least i know i'm not alone on this earth feeling a genuine sense of frustration, anger and helplessness..
Like you said theres good days and bad days....today for me happens to be a really really bad day.....i have on 20mg Buprenorphine transdermal patch plus taking300mg Lyrica twice a day...plus Amytryptaline 50mg at night.....i feel like a proper vegetable now, just a more sedated version of who i am day to day......i am extremely sorry and unbelievably sympathetic to your cause....if you ever find a way out please let me know what you done.....i have been operated on by the best surgeon in the country and i'm still in tears of pain from day to day......my poor wife and family have to put up with this leech on their lives.....so fed up of it all............really really can't take anymore.......

 
Reply With Quote
Old 03-26-2009, 08:09 AM   #7
Newbie
(male)
 
Join Date: Mar 2009
Location: london, uk
Posts: 3
Delboy75 HB User
Re: Helping others understand about chronic pain

i concurr...thank you thank you thank you a million times for articulating our nightmares....i will also make copies to give to people....thanks again Aussie : )

 
Reply With Quote
Old 03-26-2009, 08:55 AM   #8
Member
(female)
 
Join Date: Feb 2009
Location: westfield ny usa
Posts: 63
dianne04 HB User
Re: Helping others understand about chronic pain

[url]http://pain-topics.org/pdf/IntractablePainSurvival.pdf[/url]


Hello all, above is a link that a woman sent to me about pain. I found it very helpful to read and thought I would pass it along.

 
Reply With Quote
Old 03-26-2009, 09:35 PM   #9
Veteran
(male)
 
Join Date: Oct 2006
Location: OZ
Posts: 382
Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Re: Helping others understand about chronic pain

Hi Jason, I had small fibre neuropathy and the large nerves were also affected,
I am not suffering at all these days because a reason was found, it was caused by prediabetes which i addressed and 5 years latter all is great, thank god
plus I took a few vitamins and supplements to help the nerves repair.

I only posted this letter as it helped others understand what was going on with me at that time, I thought it could help others here as well.

Aussie

 
Reply With Quote
Old 03-27-2009, 11:46 AM   #10
Junior Member
(male)
 
Join Date: Mar 2009
Location: san diego
Posts: 29
jjm0019 HB User
Re: Helping others understand about chronic pain

Thanks Aussie!

I've been suffering with SFN since I was 18 and I'm 31 now. It took me 13 years to get a diagnosis. Needless to say, it was a very frustrating experience dealing with doctors for so many years. But I'm grateful now to be able to put a name with my symptoms and pain. I recently had a number of blood tests run to try and find a reason for the SFN. Unfortunately nothing came back positive, therefore the result of the SFN is deemed idiopathic. I guess I'm okay with that because it means nothing else is wrong in my body. Other than the SFN, I'm healthy, and grateful for that.

What over-the-counter vitamins do you recommend to combat nerve pain. I'm currently taking Vicodine and Cymbalta. The pain meds help a lot, but I need more and more to keep the pain subdued. I'm interested in alternative meds/vitamins as well.

Thanks,

Oh, Aussie? Are you from Australia?

 
Reply With Quote
Old 03-27-2009, 03:09 PM   #11
Veteran
(male)
 
Join Date: Oct 2006
Location: OZ
Posts: 382
Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Re: Helping others understand about chronic pain

Jason, for the burning I found a little relief with B1 [thiamine ] 100 mg x 3 times daily, unfortunatly it doesn't help everyone though.
B12 methylcobalamin supplements are good for general nerve support [1-5 mg daily] taken on empty stomache for max absorbtion.
A multi B vitamin will help the B12 work better, I take mine in the morning.
There are no quaranties with supplements, but vitamin B is needed by the nerves so they definatly won't hurt you.
The only vitamin B people must be carefull wth is B6, to much can actually cause nerve damage, but there should be enough in the multi B tab to cover normal needs.
I am wondering if you have tried a gluten free diet, it is often overlooked as a cause and presents itself as small fibre neuropathy and is something people can do themselves.

oh yes, I am as the screen suggests, Australian.
best of luck
Aussie

Last edited by Aussie100; 03-27-2009 at 03:12 PM.

 
Reply With Quote
Old 03-27-2009, 11:40 PM   #12
Junior Member
(male)
 
Join Date: Mar 2009
Location: san diego
Posts: 29
jjm0019 HB User
Re: Helping others understand about chronic pain

Hey Aussie,

Thanks for the information. I've read on a couple other threads that people have had a lot of success with a product called Nerve Support Formula from a company called WSN. I ordered a bottle today and hope that it lives up to its 90 money back guarantee. It's funny because it sounds like something you'd see on info commercial. From what I understand however, it has all the B vitamin products incorporated in one pill. What are your thoughts on this product? Am I better off going to my local drug store and buying the B1 and B12 separately?

I have not taken a gluten free diet. If I had a problem with gluten, wouldn't it show up in the thousand blood tests I've taken to date? If not, I'm totally willing to try and go gluten free. I'd have to do a lot of research on how to go about it, because I'd have no idea where to start. I really appreciate the suggestion however!

The reason I asked if you were Aussie is because my fiancé is Australian. Actually, she was born in the Philippines and then moved to Australia when she was a little girl. Been in the states for close to 9 years now. She can turn her Aussie accent on and off, which I think is pretty funny!

Jason

 
Reply With Quote
Old 03-28-2009, 08:01 AM   #13
Member
(female)
 
Join Date: Feb 2009
Location: westfield ny usa
Posts: 63
dianne04 HB User
Re: Helping others understand about chronic pain

Hi Jason, I'm trying the Gluten-free diet, although I too tested negative for celiac disease. I thought I would give it a try. I don't think it is really helping though, but I'm going to stick with it. I'm trying many supplements that are beneficial for Neuropathy, so far I don't think they make a huge impact, but I do think it's important to have a healthy diet and lifestyle, regardless whether it "Cures" the neuropathy. It's so frustrating to be doing all you can, and not see results. I sometimes don't know how I'm going to live my life like this. I'm getting pretty depressed. Anxiety is also right there, I think it's the unknown and realizing life is unpredictable and they are many things we just don't have control over.

 
Reply With Quote
Old 03-28-2009, 12:44 PM   #14
Veteran
(male)
 
Join Date: Oct 2006
Location: OZ
Posts: 382
Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Re: Helping others understand about chronic pain

Jason, I know a guy that had been classed as idiopathic small fibre [whole body wide] he tested negative for celiac disease but tried a gluten free diet anyway and said he has definatly improved and is sticking to the diet, this guy does a lot of neuropathy research and told me that he read 20% of people have been tested negative for celiac by blood tests, but have tested positive for celiac by biopsy, I am not saying this is the answer for anyone by any means but when patients get labelled idiopathic, I think anything [within reason] is worth a try to get better..

The same goes for vitamins and supplements there not going to work for everyone, simply because of the many differant causes of neuropathy, they sometimes help some but do nothing for others, so it boils down to personal choice, with me I choose to use them to support or nourish my nerves whilst I was healing from the damage the elevated blood sugars had done.

With the Nerve Support Formula, as far as I know its a mixture of b12 methylcobalamin and Benfotiamine, both of these vitamins have helped some neuropathies but I am sure that it won't help all people with neuropathy.
Its interesting they offer a money back quarranty but i would like to see how they stand by there policy if it doesn't work, you won't get that buying them seperatly in stores so its really personal choice again.

Us aussies think everyone else has accents, not us

good luck mate
Aussie

 
Reply With Quote
Old 04-11-2009, 11:50 AM   #15
Member
(male)
 
Join Date: Apr 2005
Location: Georgia
Posts: 61
waswell HB User
Re: Helping others understand about chronic pain

Aussie,I have neuropathy also,and I am experiencing chronic fatique.I also have bad allergies,they tell me it's the allergies that is causing the fatique.Like you I hurt all over at times.This fatique is a killer,if you have anything to offer on the fatique problem,or anyone.I would appreciate any help.

Thanks for the post and the help,

Waswell

 
Reply With Quote
Reply Reply

Similar Threads
Thread Thread Starter Board Replies Last Post
Pain Meds Not Helping HarleyGuy Pain Management 9 08-07-2011 05:59 PM
Does the generator help ? stasis4 Herpes 27 03-29-2008 06:37 PM
Dos and don'ts in helping a loved one with a substance abuse problem. mariogreymist Addiction & Recovery 2 08-05-2007 02:12 AM
Others keep suggesting it's stress... I don't think so. 4thof4 Fibromyalgia 4 03-05-2006 06:07 PM
Question for Shoreline and Others jaguar63122 Pain Management 7 05-26-2004 12:45 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



tingles (48), Aussie100 (34), RisingParrot (34), daisymaegrl (33), Ruby8 (27), captinsane1 (25), June89 (22), awlright (10), LasVegasgirl (10), jverive (9)

Site Wide Totals

teteri66 (1180), MSJayhawk (1005), Apollo123 (906), Titchou (850), janewhite1 (823), Gabriel (759), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 07:38 AM.



Site owned and operated by HealthBoards.com™
Terms of Use © 1998-2014 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!