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.
Signed
Me (insert your name here)
http://butyoudontlooksick.comhttp://notdoneliving.net/foothold/openletter/.html---------------------------------------------------------------------------------------------------------------------------------------
This has been adapted by me (with permission from the original writer) from a group of letters she wrote about about CFS/Fibro, ICD/ICI's etc and that others have written about MS, Cognitive Disabilities, FMS, Chronic Pain Fibro and More and they can be found at
http://notdoneliving.net/foothold/openletter/.html (I have her permission to change it and to share it (and I will be giving her the link to link to the Open Letter site)...
* Edited to fix spelling and grammatical errors and to add some more information and links to BYDLS and the original site I got the format from this letter and permission to use it from, that should be included in any printed copies if possible please*
