I too have lost many relationships due to this HORRIABLE illness weather it be my own sister who I already did not get along with or even trust (who I call my parents other daughter lol) making fun of the way I walk actually mocking me calling me a liar & saying nothing was wrong with me, strangers on the street giving me strange looks, making comments under their breath, guys not wanting to even date me because Im not active enough, or Im in too much pain all the time so I'm not worth the headach or stress for someone to even date, like I didnt already feel low enough about myself or the way I walk or the way I look. I've learned to put walls upon walls up just to not get hurt because I've been hurt to many times in my life but espically since my life suddenly changed almost 10yrs ago from this RSD/CRPS.
Although we can not pick our family's unless we're marring into them we can pick our friends & my thoughts Heather is you have enough to deal with & although you've known these 2 women for years they dont deserve you to even call them friends because they are not anything close to a friend if they can do that not once but twice if not more, thats just wrong & hurtful. I think you would feel better speaking your mind to them & get it off your chest. I know it may not be an easy thing but I think you will feel a load lifted.

HeidB, tears streaming down my face as I read your story, I hate that you have been forced to endure the cruelty that people so selfishly dish out with little care to the damage they cause in its aftermath. You are an incredibly strong and from what I can see in this photo beautiful woman. Shame on those who have shallowly pushed their own fears out and on to you. As to your sister, jealous much, are the words that come to mind. She sounds as though she is a very jealous girl of any or all attention you have had due to your condition and whining for your parents to pay attention to her. Sorry, but that's how it sounds, what a pitiful sister she has been to you. Love hugs and kisses to you for the braveness you show.

I am sorry this is terrible..Family should be there,but I guess they are too busy to even want to understand.My own son cannot be bothered.Todays world is uncaring...Just remember some day this can happen to them..You know its so strange that we try to reach out to tell others about our illness and they hear you but they don't.I know sometimes my pain is so high,that I feel emotionly off,and they think I am nutts.Any way you Ladies are very pretty by your pictures,but rember it really counts for who you are on the inside..I know from talking here,YOU BOTH are beautiful on the inside and out..You both are caring and giving.So anyway I want you both to know WE ALL HERE LOVE YA,AND YOU MATTER TO US....

Change the heading send them this and ask where were you when I needed you.

Dear Loved One,

Reflex Sympathetic Dystrophy also known as Complex Regional Pain Syndrome Type 1 is a rare chronic, painful, and progressive neurological condition that affects skin, muscles, joints, and bones that causes severe chronic pain, sympathetic nervous system, immune system and motor system dysfunction as well as other things like fatigue, sweating, migraines, inflammation, cold intolerance etc. RSD means that I am in constant chronic and severe pain, all the time (awake and asleep), as well as MANY other things. Just because you can't see these things etc doesn't mean they aren’t real.

Most people don't understand much about RSD (even the medical specialists don’t know why it happens or exactly what does happen) and its effects, and of those that think they know (including many medical specialists) 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...

I am scared. I don't know what the future holds for me. Will I always be in pain and suffer from the other symptoms this disease/ syndrome throws at me or will I be one of the lucky ones, who may get a remission (there is NO CURE for RSD/CRPS1). If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.

I am angry. RSD has taken so much away from me. I can no longer do many of things I enjoy doing, even the simplest and most innocent of things can make my pain a lot worse (things like vibration, the wind blowing, a slight brush, even my clothes touching my skin). I have difficulty just completing simple tasks. If I appear angry please understand it is RSD I am angry with, not you.

Please understand that having RSD doesn't mean I'm not still a human being. I spend most of my day being very careful about what I do, and being in constant severe chronic pain, and if you visit I might not seem like much fun to be with, but I'm still me… stuck inside this body. I still worry about school, work and my family and friends etc, and most of the time I'd still like to hear you talk about yours too.

Please don't assume you know what is best for me. RSD has affected my body and nerves etc, not my mind (although it does effect my thinking etc (as it would anyone who was always in constant severe pain)). I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating etc with everyone else, but it hurts when you exclude me. Maybe I can't skate etc with everyone else but maybe I can bring the hot chocolate etc and watch.

Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know most of the time I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with a lot of invisible pain, fatigue and other symptoms. Even on a good day I feel like you do when you have the flu plus at the same time like someone lit me on fire, while electrocuting me and hitting me with a hammer. Please keep that in mind.

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 months/years (RSD has NO cure, while some can get a remission it is very unlikely if it wasn’t diagnosed and treated in the first couple of months and most suffers are not lucky enough for this to happen, for many it takes 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 worse that ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please don't tell me how “Auntie Mary” cured her joint, nerve, pain etc problems by drinking vinegar or any other supposed remedy. 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. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. There is NO cure for RSD (and as they are still not even sure why or how it occurs until this happens and then they find a way to treat it, then I will have this always), only some of my symptoms and pain can be treated. If there was something that helped, then myself and other suffers would know about it (this is part of the reason I am a member of the online communities I am a member of). This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, and if something worked we would know about it. If after reading this, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.

I want you to know that the pain and other symptoms of my RSD fluctuate/ flare. Please don't attack me when I'm worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I'll tell you. Just because I climbed the stairs yesterday (or an hour ago) doesn't mean I can do it today (or in another hour). Yesterday (or earlier) my pain and other symptoms may not have been as bad; today (now) it may be worse (but I am NEVER pain free), who knows what it will be tomorrow (or later). Also understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to EVERYTHING that I do.

RSD and the pain and symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please remember I am in pain every second of everyday and in a pain that is worse than you can imagine or explain – RSD pain is considered worse than non terminal cancer pain, childbirth or the pain from a digit amputation, and it is constantly and consistently there, and while it does fluctuate in intensity it NEVER goes away EVER. I NEVER get a break from it.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. Telling me that I need some fresh air and exercise etc is not correct and probably not appreciated - if I could possibly do it then, I would.

RSD and most chronic illnesses/ diseases may cause a secondary/reactive depression (wouldn't you get depressed occasionally if you had a body that caused you pain 24/7 and could spontaneously get worse through no fault of you own, or from the slightest vibration or touch etc) but THEY ARE NOT CAUSED BY DEPRESSION. Telling me it is all in my head or that I need to get psychiatric help, does NOT help. If my treating Doctors think that getting help for any secondary/ reactive depression that I might have will be helpful to me and my health, then I will do so, BUT getting this sort of treatment will NOT treat/cure or even HELP my RSD and symptoms...

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 else more exciting. RSD does not forgive its victims easily.

Please understand that I can't spend all of my energy trying to get well from RSD… it is incurable. 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 an important part of having a chronic illness or disability like RSD is coming to the realization that you have to spend energy on having a life while you're sick/disabled. 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 RSD or any chronic illness/disability.

Finally, please remember that I am the same person I was before I started suffering from and was diagnosed with this. RSD doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before.

I need lots of love, understanding, support and hugs, just like you.
But most importantly, I need you to understand me.

Thank you..WELL SAid...

Dear Kevscar,
Thanks once again for providing this, it is so very well said.
I have wanted for months to send this to loved ones, especially to my
grown kids.
I'm afraid they'd say or think "jeez, you didn't need to "go off" like that.
Since I've not been working they have an attitude of how nice it must be
to be acting like I'm retired early (not exact words).
In different conversations, one of them points out hypothetical jobs I
could do, how she has Crohn's disease (and works). I so much want to point out there's specific medicine to keep that in remission.
RSD does not have one.
Maybe I just don't have the nerve (bad pun) to speak up.
Any comments??

Hey Di! I think you need to speak up and give this to those loved ones. I gave some family members and friends something similar to this and it helped. Sometimes when they read something like this it puts it into a little different perspective. What Kevscar posted is does not read like you are "going off", it is polite but matter-of-fact. There is no way they will ever understand fully, but this could help get them closer to understanding and showing you more support and empathy. Also give them a copy of the McGill Pain Index (my husband said that is a real eye opener).

And oh, I hate when someone asks me "so, are you enjoying your retirement?" REALLY??? I am only 47, I am not retired, I am disabled...I cannot work! This is not my choice!

I had my hubby read all this ..He said I should send copies to my friends and relatives..He said it was well spoken..Thank you

or sit them down and say look this is what RSD can do to you.
http://s834.photobucket.com/user/Kev...eam-1.mp4.html

I think CRPS is scary enougn without frightening ourselves silly with horror pictures. These are extreme cases, and there is nothing positive about having them in your head.... I wouldn't recommend anyone with CRPS to look at them, and shown to anyone who did care about us they would be horrified and scared witless. It's quite extreme to show it to someone who doesnt care as a shock tactic, it would certainly provoke a reaction...

I'm not in a good place right now, so apologies if I'm not coming across well, but please don't any of you fine folk look at these. I saw a few a while ago when Kev firet posted this link and they're burned on my mind, not in a good way.

Bram.