Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-25-2012, 10:53 PM #11
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Fighting to find good information and put it out on this and other forums to help all of you but more importantly fighting to find the un/misdaigosed sufferers out there who have no one.
For the last 2 years I have been constantly amazed and disappointed by how many of my fellow sufferers are willing to help people who wander on to these forums but won't lift a finger to go that extra mile and help anybody outside the forum.
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Old 10-26-2012, 06:51 PM #12
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But how would I do that?
I am basically home most of the time. I do not drive that much and i live in a small town. When I do find someone who is suffering and/or unsure about the future and RSD I try to help as best as I can. If you could help me reach out to others I would be glad to offer support.

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Fighting to find good information and put it out on this and other forums to help all of you but more importantly fighting to find the un/misdaigosed sufferers out there who have no one.
For the last 2 years I have been constantly amazed and disappointed by how many of my fellow sufferers are willing to help people who wander on to these forums but won't lift a finger to go that extra mile and help anybody outside the forum.
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Old 10-26-2012, 08:27 PM #13
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See my Worldwide Awareness Campaign post
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Old 10-26-2012, 08:46 PM #14
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See my Worldwide Awareness Campaign post
Thanks, I'll check it out.
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Old 10-26-2012, 08:54 PM #15
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None of us are "ok" with it. I know for myself ive just SLOWLY learned to live with it some how. Theres not a moment im not in pain. I dont even remember what its like to not live in pain, so maybe thats "helped"?. Im young and for a very long time it made me angry that it took away my teen yrs and now my young adult yrs. But i learned that being angry all the time wasnt going to get me anywhere eather. I had to go threw the grieving prosses, that is very important. And there are still times that i do grieve and there are still days that i get tired, tired of it all, ready to throw in the towel and say screw it im done, but then i turn that into strength and i fight, because I will NOT let this beat me down. Im constantly doing my research and trying to find ways to get the help i need and treatments. There are days that the pain is so bad i feel like its just eating at me, or so bad that it can make me vomit, and on those days i medicate with the meds i can take and i sleep and rest because thats all i can do on those days. I dont talk about any of my crap anymore because most people dont understand it. I have 1 friend that does and she is the one that i can talk to and shes been an amazing friend, but she is the only one that i talk with about any of this. So turn all that into fighting! Do your research and fight to get the help you need!
Well I was diagnosed when I was 16 but I had the symptoms from when I was 15. I get what you mean by grieving process, I still feel like I'm in it, We have yet to actually find something to help or someone to help. It has made everything harder, from school to guys to friends. I just feel like I don't have to positive outlook like you guys.
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Old 10-26-2012, 10:21 PM #16
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I have 1 friend. I cant drive (embarissaring right?!), and even if i could when i was 19 i devolped epilepsy (seizures) ontop of everything else. I worked full time, usally around 50hrs a week (i was 16 when i started working) and I was a PT tech and was hopefully going to be going to college to become a PT befor i was hurt. it was my love! i LOVED working! I loved doing my job, i loved helping people! And then a few yrs later, BAM im the paitent! And then i HATED it! My boss, the person i worked for, was then having to treat me is a paitent. Eventually i had to stop going because no progress was being made and we knew the outcome and i couldnt stand seeing my co workers anymore with out me actually working with them. I dont go out, its rare if i do. I dont date because thats just to complicated with all my health stuff. And yes i went threw the intial grieving prosses, that felt like it lasted forever, and theres many times i still grieve. Many times i still get angry. WHY cant i be a normal 22yr old? WHY cant i go out and have fun with friends and do whatever? WHY cant i drive? WHY do i have to feel this pain every single day? WHY did i believe it was just a simple surgery? Because that "simple" surgery changed my whole intire life! Every bit of it! And then i start having seizures, WHY me?! And these seizures arent even easy to treat because of what kind they are, my luck huh? and they cause so much pain when i have the big ones, they take such a hard toll on my body, so WHY me?! WHY am I having to go threw so much stress right now in this very moment because my little brother who oh gosh we love so much is fighting for his life after a surgery and now is trached and vented, and hes been in the PICU for a month now. so WHY am I having to go threw all these trials?! My personality COMPLETLY changed! The person that was very laid back and happy and sarcastic all the time is no longer there and hasnt been for a long time and never will be. I lost all my friends because of it. My family even struggled with it for a little bit because i wasnt me. What I saw in my paitents at work, I became myself and gosh i couldnt stand that. BUT its made me who I am now. Ive changed for the better and not for the better. I dont know if its nessisarly a "positive" outlook i have or how much i have, ive just simply learned to live, day by day and some days its just minute by minute. Ive learned not to take the little things for grandit. To apreciate everything you have, because you can loose it in an instant. And I havent found anybody to help me eather, most of us havent. But it doesnt meen you dont stop doing your research and fight to get the help you need. Look for drs to see, find one that can help, exspecially to manage your pain.



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Well I was diagnosed when I was 16 but I had the symptoms from when I was 15. I get what you mean by grieving process, I still feel like I'm in it, We have yet to actually find something to help or someone to help. It has made everything harder, from school to guys to friends. I just feel like I don't have to positive outlook like you guys.
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Old 10-27-2012, 11:07 AM #17
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I was diagnosed a little over two years ago. For a long time, and even some bad days now, I find living with this hard to accept. I played sports for many years growing up, so I was used to the injurys that just got better or were fixed with a simple surgery. There was always an answer and a quick fix. Then, I got injured and there weren't any answers. There weren't any quick fixes for the pain. And it was the first time I heard the word "permanent" from a doctor. How do you accept that? How do you come to terms with something you may live with the rest of your life when you are only in your 20's? The rest of your life is a long time. It took over a year for me to accept this, and come to terms with it. And I still have days where I break down and say "Why me?". But, the next day I get up and say "I am NOT going to let this control me". It isn't easy. It is a struggle every single day. But, I find support through my friends, and my family, and all of the wonderful people here that struggle everyday as well. It doesn't mean you are weak because you have bad days or have a hard time with the pain and what that does to your life, it means you are human. We all find ways to accept things. We find ways to grieve and let go. The best thing I can recommend to you is find a support system. And know that it is OK to cry, or scream, or do whatever you need to do to let out the frustration. And then move on to the next day and tell yourself it will be better than yesterday.
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Old 10-27-2012, 11:58 PM #18
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I don't think any of us really gets over or past the greiving process, the worst for me is when my grandson comes round, he was 2 Monday. I have never picked him up or held him, I know I.ll never roll on the floor and play with him, teach him to swim or take him to disneyland, have special days out just me and him as I did with my Grandaughters.
Sometimes when his mom is playing on the floor with him or my wife is chasing him around I have to go to the back door for a smoke or I will breakdown in tears.
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