dear Mom,

First my heart goes out to your daughter, yourself and your whole family!

I have internal RSD that was caused by 2 surgeries i had. I have been ill for 6 years and just got diagnosed 9 months ago. I also have a herniated L4 disc that causes me to walk bent over with a walker. i am mostly bed ridden and can still get to the bathroom with my walker. I get out side about once a week and i use my walker to get to the car. if i have to go any further then that, i wont make it and my hubby pushes me in my wheel chair. I am getting very weak by not using what i have but like you said it hurts to move.

SO because we cant feel eachothers pain but we all know that we have it, I say do all you can to be as comfortable as possible. have the wheel chair accessable for your daughter so she knows its there if she wants it. it doesnt become a crutch for her, she needs real help. Until you can find a better pain management situation for her, help her all you can. Being trapped in a body filled with pain...I will sometimes hold my urine for hours until i just cant wait another second because it hurts me to move more than it does to hold my bladder. i didnt mean to be gross ....i know exactly how many steps to my front door and how many more to my car...until i can sit and rest my body and the pain from each step i had to take stops radiating through out my body. I have a letter to hare with you...I posted this a few weeks ago.....maybe you could print this off for your family and friends. It was written so eloquently by a wonderful person who did not put their name on it....read below and maybe it will help you understand your daughters pain a little bit more. Also, I just think it is amazing of you that you have come here looking for help....I know its hard to watch someone you love suffer!

Here was the post i mentioned:

Passing this on from a friend on face book She did not write it. I do not know who wrote it but this says it all better then I could ever explain how it is to live with 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 of 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 respect 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?

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 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.

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 am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

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 to help me with the shopping, cooking, or 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.

-Author unknown.