Originally Posted by Kevscar

Angelima print this ut and give it to them, then let them watch this.

http://www.youtube.com/watch?v=MviVcjWZDts

Please read my life with RSD/CRPS

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 don't feel well often times and I might not seem like great company, but I'm still
me stuck inside this body.
I still worry about my kids and work and my family and friends, and I'd like to hear you talk about yours too.
Sometimes I want to talk about my illness sometimes I don't, so please don't roll your eyes when I talk about my pain and please don't pressure me to "get it off my chest" when I just want to pretend it doesn't exist.


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. I may be tired I may be in pain. I may be sicker than ever.
Please, don't say, "Oh, you're sounding better!" as if I'm healed. I am not sounding better, I am sounding happy. Tomorrow I may sound worse again.



Please understand
that being able to function for an hour doesn't necessarily mean that I can keep it up all day. Doing everyday things, that everyone else takes for granted, exhausts my resources and I need to recover.
Imagine an athlete after a race. They couldn't repeat that feat right away either.
With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing. Maybe today, I can handle work and home, tomorrow it may be one or the other but not both. There is actually a name for this it's called postactivity payback and it sucks.
So, please try to keep in mind that I don't function like everyone else and just because I can do it today doesn't mean I can do it everyday.



Please remember
that the above paragraph can apply to just about anything, "sitting up", "walking", "thinking", "being sociable", and so on it can apply to everything that requires physical or mental effort. That's what a chronic pain illness does to you.


Please understand
that chronic illnesses are variable. It's quite possible (for me, 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 kitchen.
Please don't attack me when I'm ill by saying, "But you did it before!".
If you want me to do something, ask if I can and I'll tell you.
In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.



Please understand
that "getting out and doing things" does not make me feel better, and
can often make me seriously worse.
Reflex Sympathetic Dystrophy may cause secondary depression (wouldn't you get depressed if you were always in pain and exhausted?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.



Please understand
that if I say I have to sit down/lie down take these pills now, that I do have to do it right now, it can't be put off or forgotten just because I'm doing something. RSD/CRPS does not forgive.



Please understand
that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well, But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better.
It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness. I will go about the business of living, but I won't necessarily be happy about it either so please try to understand that there is a reason I'm a little crabby sometimes. I can't just hide in bed with my head under the covers because I don't feel good everyday. But I sure have tried to do just that.



Please If
you want to, you can suggest a cure to me, but please don't act as if
it's going to be my salvation. It's not that I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest something at one point or another. Typically, it's just the same old snake oil in a new package.
If there was something that cured, or even helped, people with RSD/CRPS then we'd already know about it.
There is worldwide networking (both on and off the Internet) between people with RSD/CRPS, if something worked we would KNOW.
I'm happy to hear what you have to offer and if it's something that I haven't heard before, I'll take what you said and discuss it with my doctor.

Please understand
that getting relief from an illness like this can be very slow if not imposable.
People with RSD/CRPS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.



Please understand
that if I pull away from a touch or a hug. Its does not mean that I am anti-social. Or that I don't like you. It simply means that my body's ability to enjoy touch has changed and I am unable to greet people in a normal mater because of the chronic burning pain that RSD/CRPS causes.


I depend on you - people who are not sick for many things. But most importantly, I need you to understand me.


THANK YOU!

Originally Posted by CRPSsongbird

today I had my worse flareup to date. I lost my job back in march from all the time i had missed from this. I was lucky and found another one about 3 weeks later....... Now I had to leave work today because of the pain. They have a very strict attendance policy. So I could very well loose this one too. I am typing one handed at the moment. I am SO sick of this. It is ruining my relationship. He used to be so supportive when we first got together. Now because there have been SOOOO many doctors vists, ER visits, everything you all know about...he seems not to care. He just doesnt understand how painful this is. He figures I shoud just "deal" with it. Well I do! I hadnt had an ER visit for 3months. And I had gone to my doctors office 1st since I have a pain contract now. He saw how bad it was, my arm was lobster red and I was actually throwing up the pain was so intense. I am crying now because I dont know what I can do. I feel like I'm a burden and also want to eave. I think I deserve better than that. Then I started thinking, who the helll would want me in this condition......My daughter always has to check is tht your hurt arm mommy? before hugging or trying to play.........This has almost RUINED everything in my life..........I just want this to stop. No one nderstands, and everyone in my life is getting tired of dealing with me. I have had a good couple of months before this but....just NO ONE understands, or even seems to try.........I so so your feeling this way too Angelina.....my heart is with you too in our pain

Originally Posted by AZ-Di

Angelina,
I'm sorry I'm late in responding to your post. I can so much relate to your situation. I just got approved for SCS today and to tell the truth I really did not want to be. I had 4 denials so I thought the insurance would never approve it. I thought that would make my decision for me.
But, after 9 (tommorrow 10) nerve blocks I'm running out out of that option and the pain starts to return. My range of motion is still very limited so I pretty much type one handed.
I'm very afraid as well so I'm sure we share many of the same concerns. When do you or did you have your trial?
How old is your daughter? I wish I was closer b/c I would come to help you.
I know what you mean by the opinions of friends and family. I feel like no matter what I do to explain to them - they just don't get it!!

Originally Posted by CRPSsongbird

today I had my worse flareup to date. I lost my job back in march from all the time i had missed from this. I was lucky and found another one about 3 weeks later....... Now I had to leave work today because of the pain. They have a very strict attendance policy. So I could very well loose this one too. I am typing one handed at the moment. I am SO sick of this. It is ruining my relationship. He used to be so supportive when we first got together. Now because there have been SOOOO many doctors vists, ER visits, everything you all know about...he seems not to care. He just doesnt understand how painful this is. He figures I shoud just "deal" with it. Well I do! I hadnt had an ER visit for 3months. And I had gone to my doctors office 1st since I have a pain contract now. He saw how bad it was, my arm was lobster red and I was actually throwing up the pain was so intense. I am crying now because I dont know what I can do. I feel like I'm a burden and also want to eave. I think I deserve better than that. Then I started thinking, who the helll would want me in this condition......My daughter always has to check is tht your hurt arm mommy? before hugging or trying to play.........This has almost RUINED everything in my life..........I just want this to stop. No one nderstands, and everyone in my life is getting tired of dealing with me. I have had a good couple of months before this but....just NO ONE understands, or even seems to try.........I so so your feeling this way too Angelina.....my heart is with you too in our pain

Originally Posted by Angelina55

I got my trial on May 23 and they took it out on May 28 because I was in so much pain from where they put the leads in my back. It felt like I had just had major surgery but with no pain meds to get me through. I could barely move and I pretty much cried the whole time I had it except for the last day. It did start to feel better, which makes me wonder why they took it out. My daughter is 6. And it is hard to get family to understand. You would think they would understand the most because they see you the most. Then I have a sister that thinks she has CRPS now and tells me it isn't that bad and I just need to not show my pain like she does. LOL All I could do was laugh at her. If she really had any clue! But she is not a very nice person.

Originally Posted by finz

I'm sorry for all of the physical and emotional pain you are dealing with now, Angelina.

As disappointed as you might be wit the failed SCS trial, I suspect that you may have dodged a bullet on that one. I've just read too many horror stories here about SCS's (or, worse yet, initial glowing reports that turn into horror stories a year or two later) to feel that they are a good long term solution for us.

It's disappointing when anyone doesn't "get" our pain issues. When the person is a close friend or family member, someone who we thought "got" it or someone who we (thought we could) rely on, the emotional toll is so much worse. As traumatic as it can be, I'd rather know NOW, when I'm only on my sickbed, then be disappointed by someone when I'm on my deathbed, when there is no time left for me to find someone who can support me.

Is your medical team working on finding some other options for helping you get a handle on the pain ?