I was 25 when my RSD started...it's been almost 5 years now that I've had this. I agree that the hardest part is the first couple of years. I've grieved for the things that I have lost...for the person I was...but I've also embraced the person that I have become.

You CAN fight this and beat this. For me the key has been thinking about a key phrase from one of my favorite book series, "Think of the solution, not the problem." It sounds cheesy...but really that has been my approach to everything. I can't do things the way that I used to...but I have become very resourceful when it comes to figuring out how to accomplish the same tasks even if they are in completely different ways (usually more difficult...but manageable). It's allowed me to return to work full time and take control of my life again.

Just remember that YOU are not your CRPS...you can't let that define you. Sometimes we have to change the definition of who we are...I don't think any of us are the SAME person we were prior to this monster...there's some self discovery in there to figure out who we are NOW...but the answer cannot be CRPS or pain.

I am very sorry that your girlfriend abandoned you...that is one thing that I have not had to deal with thank goodness. My boyfriend has been frigging amazing through everything. The biggest thing though and the greatest gift he's given me (and I've said this so many times that I know there are people reading who are rolling their eyes)...it's that he doesn't treat me like I'm broken...not ever. He supports me and helps me when I need it...but not once has he ever made me feel like I am "less" than I ever was. Even when I was in a wheel chair and couldn't walk or stand at all for almost a year...he never treated me like I was broken. That made it so much easier to do the therapy I needed to get where I am today.

We're expecting our first child now...and that's scary...but it's also exciting and I just filled with so much joy. I know that I won't be the mother I would have been before I got CRPS...but that doesn't mean I won't be a good one. Will I be able to play catch in the backyard with the little one or chase them around or run around the park with them? No...but we'll have other moments...other things that we can do together...and it will be great.

I still get twinges from time to time where I remember the old me...and it's not even the old me but the things that the old me could do that I miss sometimes. I actually love the person I am now...I feel so very blessed to have wonderful people in my life and I don't take for granted any of the good things in my life. I wish I didn't have to be in pain all the time and I wish that all those activities that I used to be able to do hadn't been taken away from me...but I'm definitely at peace with my life as it is now.

Every day is a constant struggle...it's about me making a very conscious decision to get up, get moving, and live my life. It would be so easy to give into the pain and just give up...but the fight is SO worth it. My life is nothing like I pictured it would me...but I am genuinely happy. It IS possible...you will get there. Life is not over...don't give up on yourself...you will be amazed by the things you can accomplish if you really commit to them.

I'm so sorry that not everyone has the amazing support from their loved ones that I have had though this. It honestly breaks my heart and I wish for all of us to know the kind of love and support as we struggle with this beast that we need to make it through to the other side.

I don't know where I would be without that...and I don't know where I would be without you guys too. I needed the support of the people on this forum as much as I needed the love and support from my loved ones. I honestly think we all NEED support from people who know what we are dealing with. The members on this forum were so much more helpful than any of my doctors ever were...I learned most of my adapting tricks from the people here. YOU guys gave me the ability to make it through each and every day with your tips on what works for you and how you adapt to live your lives. Not to mention just the ability to vent to people who REALLY understand...that is something that has been SO helpful to me. I've learned so much from everyone...

And now that I've rambled on for a good 30 minutes or so...I think I need to stop before I get WAY too blubbery to even see the computer screen...

Well done catra

Bram x

Hi Allen, Looking back now I wish I did kick him. Right in the N**S. But unfortunately I can't go back. I just hope that he doesn't hurt anyone else and cause them undue pain or worse yet rsd. I tried legal action against him hoping that it would prevent him from hurting anyone else. He treats children as well as adults and the thought of his emotionless expression and incapable hands treating others especially children makes me cringe. I tried my best, but because drs don't note everything in there reports and because some drs cover for each other, I ended up having to drop the case. I remember him telling me one time that he really wanted to be a heart dr not an orthopedic dr. That wasn't noted in the report either. I don't think he should practice medicine at all, but it's out of my control. What is in my control is not holding on to the anger I feel for the way he has permanently hurt me (and my family) both physcially, emotionally and financially. It's taken me over three years to be able to do this, but I finally have because I don't want him to have control of my life anymore. And if I harbour this anger I feel for his inadequacies that ruined my health and life, he will still be in control of me, and that's unacceptable to me. Like I told Tos in an earlier post, I will forgive so that I can move on, but I will NEVER forget.
I'm so sorry this happened to you too and that you died twice on the operating table, and I find it deplorable that it wasn't noted in your report, but I am not surprised. I've had it happen all the time to me. That's why I document everything in a diary I keep. I hope this never happens to you again and am glad you woke up. I hope that the place you were at when you were traveling at the speed of light was a happy and peaceful place. Because the way my health has been deteriorating lately, I am worried that I may be heading into that speed of light place unfortunately someday soon. I hope I'm wrong and am trying to get as healthy as I can, but it seems that I when I get one problem fixed, another health problem arises. And my heart is getting really tired. I can just feel it. I'm have alot of trouble breathing lately. Scary Stuff.

Dang this stuff just ruins lives

I hope things kinda slow down for you Renee, but totally understand. It is like that for me too. Im on this downward slide as I watch and feel my body get worse.

Not sure how long I will last, but I have decided to not let it steal my ability to decide to enjoy what I have left. I wish I would have known how precious life without pain was before RSD. I would have done so many more things...

Just glad I had the attitude that when I got old, I didnt want any what if's, or shoulda, woulda, coulda stuff on my mind.

That other place was really beautiful. I didnt see anyone, but was in this beautiful valley and was looking at some snow covered mountains. I thought ......man those mountains are gorgeous! Would love to check them out. No sooner did I think it, and I was in the middle of this beautiful forest, and now over looking this beautiful valley!

It kinda freaked me out! I thought Oh man, what if someone was looking for me? I should have stayed right where I was! Then faster then a blink! I was standing back in the spot I first arrived at. Then all of a sudden I start to fall backwards......everything blurred and I kinda slammed back into my body. Thats when I hear the people yelling stay with us. The next thing I remember I was waking up. I am not afraid to die now. It doesnt hurt

Reading all these stories causes me to want to hug everyone real tight, and take their pain

Hi Allen, Thank you for telling me about that beautiful place you saw. I hope when my time comes, I can see it too. I'm so scared of dying, but have been close to my Priest and he has comforted me so much. I love him. He is so kind and has given me so much strength. My family and friends here on this forum have too. I want to hug you all back. I hope my rsd slows down too and that yours does too. I'm trying to find places that will let me do trial testing to see if it will help. I finally got an appt with my original pm dr. My husband ended up calling because I was so upset about my loosing my dog, that I couldn't speak to anyone. I would have said things I didn't mean and regretted later. My husband is much more diplomatic then me. So hopefully my pm dr can try to help me with the trials. He knows alot about rsd and knows alot of people who know alot about rsd too. I'm still waiting for my obgyn to call me back about the endometriosis that came back. It's been three days since I called and I also left two messages. I am freaking out and can't understand why he is taking so long to call me back. The nurse said it could spread and I want it out asap. Why don't they have any sense of urgency? I don't get it. Anyway, I'll stop talking now. Sorry I'm being so depressing. I'm just in a crappy mood again today. Just not a good week, but at least my pm dr will see me. I hope he will help. I'll let you know, and hope that maybe I can help all of you too. And I too have been trying to appreciate life more since I've have rsd. I also can't believe how much time I wasted getting upset about silly things before I got rsd. But now I try to enjoy life as much as I can. It's not always easy and depends on my pain level and things like losing my dog last week, but I try harder then I used too prior to rsd. As much as rsd sucks, it has made me try to enjoy every minute that I can and not waste as much time getting upset about things I can't control. Well, I hope you all have a pain free and beautiful day today. It's finally warming up here in Jersey. I like that. As always, my thoughts and prayers are with you all. With loving kindness, Renee.

I worry about that myself Renee. I knew my surgeons schedule, I do NOT believe the surgery she does should be legal, its a disgusting surgery, its not even researched or approved by the NIH. But ever Monday and Wednesday I knew she was causing harm to 4 more people. I hated it! She thankfully moved after some bad press a few months ago, but is now teaching new students, new surgeons how to do this surgery. Which is scary in itself. I have never said this to anybody before. But when I was 4 weeks post op I was sitting in the office because my complications were full force, I was way worse off then I ever was before the surgery, and I had talked to the PA and told her everything and the PA, I remember the look on her face, it wasn't good. She told me my surgeon needed to go back in (my guess is the PA knew what my surgeon had done to me and was trying to get it corrected) and then my surgeon walked in the room and she said she needed me real quick and grabbed me and took me into another patients room, she was a young women, probley at the time just a little older then me in her young 20s and the PA tried to stop my surgeon but it was to late, and the surgeon told me to tell the girl how good the surgery was and how I was doing, and I lied, I said I was doing great and told the girl she was in good hands and the surgery would be just fine. I LIED. I was only 18! She pressured me. I went back into my room and my surgeon followed me back and she asked how I was doing and I told her everything and the PA quickly said I think we need to go back in and do surgery and my surgeon said NO, she said I just needed to keep doing physical therapy. And like you all, all my notes were falsified. But I cant help but think about that girl, I put her in harms way. I honestly didn't know at the time, I didn't know how bad the surgery was, I didn't know how manipulative my surgeon was, I just didn't know, I was naïve and young. Did that girl turn out like me? Is she worse off? I cant help to think. And the insane thing is I didn't really start to research until I was a little after a year post op because my surgeon made me feel so isolated, I felt like it was just me that was having these issues. Until I had my second surgery, the goal was to help even things out, crazy huh? They figured if one side was out of balance because they took heaven knows what all out, that maybe if they did the other side it would help. And after the second surgery and things still continued to get worse that's when I did the research and found SOOO much out, I was sick! I remember being in my exam room again, I saw my surgeon usually every other month (that's how I figured she knew what she did) because what surgeon sees you that much? So there I was sitting in my exam room and I hear my surgeon in the next room and I can hear them, I can hear the women telling her she wasn't getting any better, but worse, and it was like I was hearing it all over again, word for word, my surgeon said the same thing to her as she did to me when I first started out. I was STUNNED! And I felt bad for that women. I wanted to go to her and tell her she wasn't alone, there were more of us. THATS how I knew my surgeon was manipulating me and all the others, that disgusting surgery wasn't for me or the others, it was for HER! For HER research! And she was falsifying all of it! Remember the surgery hasn't been researched or approved, so there's no guidelines, so these surgeons can literally do whatever they want in the surgery without any consequences.

The pain I had from the complications was bad, but at the time I could still at least work pretty decently, half a day at work verses a full day, and with light meds I could still do most of everything with limitations. But it was after I had the second surgery I actually got even more worse and whats odd is that's not my worst side. But it was my first side that kept getting worse and worse and I noticed the changes of my extremities getting hot,cold, color discoloration, and I told my nuero a little more in depth of my pain and what I was experiencing (he actually only saw me for my epilepsy) and that's when he diagnosed me with RSD and then he quit and I had to go see a new nuero and I told him and he actually felt my extremities and could feel the temp changes in them along with the color changes. I called my surgeon up and told her what was going on, and she said "oh no, not from my surgery! Not from me! You must have had that before". That's when I stopped all contact. Because I actually think she was looking into my chart because they are all interconnected with the hospital, I saw multiple surgeons in that hospital and the first visit would go fine, heck sometimes the second visit would go fine, they would say they would start testing etc.. and then I usually could never get to a third visit without them calling me and telling me to not come back because they couldn't help. That's how I knew she was always looking, she was calling them up and telling them not go near me. She had a lot of power there and had all power over the surgeons. Do you know how isolating that makes you feel? Not only did this 1 person ruin my life, she also had full control over it for 6yrs! I finally went to another hospital and I saw a surgeon there and he was sooo nice, it was so refreshing to have a surgeon treat me like a human, and he looked over everything, he was willing to do surgery, but he was honest and said the fact was the damage was already done, I got dealt a bad hand of cards and he could only give a 50/50 chance if that and wasn't sure if it would make me worse or better, when his real surgery without complications like mine has an 85% success rate. I decided not to do the surgery and that was the last time ive seen a Dr, which was 3yrs ago, besides my pcp since she manages my pain. In Sept. I go to PA to Drexel to see Schwartzman's team of drs and that will be the first time I go see an actual dr again for this crap. And im honestly still not sure about going there, the only reason if I do decide to go, is to strictly talk about the treatment that Tessa is doing. Im not doing injections, trial drugs and other crap that's just "temporarily" gonna work.

Tos, You shouldn't feel guilty about what you said to that girl. You were young and trusted your surgeon. When we're young, we see the world in rose colored glasses. We think everyone and everything is good and okay. We trust more easily and are manipulated more easily because we haven't been in touch with the real world yet. So please don't blame yourself. Your surgeon is to blame. She shouldn't have manipulated and intimidated a young person and shouldn't be a surgeon doing surgery on anyone. But unfortunately, alot of them continue to hide their mistakes and keep working. Before I got rsd, I trusted all of my drs completely and did everything they asked me to do and never questioned them. I was older but still naive and because of my low self esteem, easily influenced. Not anymore. I question everything my drs say now and everything they have me sign like hippa forms and med release forms. I get second and third and sometimes fourth opinions and I don't worry about hurting their feelings anymore. They didn't care about my feelings when they hurt me, so why should I care about theirs. I hate being like that but feel that we all have to be on our guard with drs to protect ourselves. We still need them unfortunately, and there are some that are good, but we still should always be careful. I hope you go to see Schwartzmans team. It can't hurt to talk to them. I may call and ask to be on their waiting list too. I want to check into what Tessa's doing too. She is amazing. I hope your visit works out for you. If you could let me know how it goes, that would be great. I'll be rooting for you my friend. And again, please don't feel guilty. You have nothing to be sorry for. You have been a victim just like that girl. I'm sure she's okay and getting the help she needs. You have to take care of you and put it behind you. Someone once told me how do you move on from a mistake you think you made that you can't change. They said it's not what you did that matters anymore, it's what you do with what you learned from it from now on that matters. We can't go back my friend and you're not the only one who's done this. I've done things that were wrong because I let others intimidate and manipulate me because of my low self esteem. The fact that you feel guilty makes you a good person because you show remorse. And if it bothers you that much and you are religious, then maybe see a priest or minister and ask for forgiveness. Ask God for forgiveness. God forgives if you let him. I've asked him many times for forgiveness. It helps me to move on. I hope you can find the strength to move on too so that you can find some peace. I will pray that you do. You are a good person and an amazing person too and don't ever forget it! With love, Renee.

PS - And Tos, most importantly of all, forgive yourself. You didn't do anything wrong. You were manipulated by a bad doctor. I can see why it's so hard to forgive her, but she will have to answer for what she did someday. I believe that. Don't let her have any more control over you. I know the anger you feel. I feel it too, but am trying to let it go by putting that bad dr of mine out of my head. These bad drs are not worth our time. Use your time and energy to take care of yourself and to get better. I'll be praying that you do. Love, Renee.

This is a lot of how I feel , at times I feel downright stupid for not doing more before the rsd. Like earlier today my fiancee and I were watching something about surfing and it kinda hit me between the eyes. I live in California and I have only been to the beach once in my life and have never learned to surf or for that matter snowboard or ski either. Why did I never appreciate the simple ability to walk?

Ditto...

Oh, if only someone had said! It's the other Great Unanswerable Question....

The GUQs are:

1) Why me?
2) What am I going to do now?
3) How am I going to cope with this?
4) Can I deal with this for the rest of my life?
5) But I'm a nice person! Why doesn't this happen to the mean people out there?
6) Why didn't anyone tell me about this before so I could cram more life into the life I had before this?!
7) What's the point now?

Of course, the GUQs do in fact have answers....but they are different for all of us, and they are there deep inside us when we look hard enough.

My answers are:
1) Thank goodness for science. The universe is chaotic. I just got a crappy bit of chaos instead of winning the lottery or finding a £20 note tucked in my book.
2) Different things. Some aren't as good as the originals, and I miss so much, but there are things I can do, and thank goodness I now know to value them while I still can!
3) I get up every morning, just like on Castaway, and I breathe in and out. And I face the day with as positive an attitude as I can. And I just see what happens. Good or bad, I will deal with it.
4) Crumbs. I try not to think about that. But yes, mostly I think I can. Like I have a choice lol
5) See 1) above. I'm not a bad person, there is no reason to any of these things. Which is why none of it makes sense. Which makes sense to me. I find a shrug helps here.
6) Ahhhhhh, maybe they did. It's the kind of thing my grandma used to say on occasion, but being young, fit and healthy, and rushing about anyway, I probably laughed and skipped on, or put a sensible face on and agreed, or said 'but I can't afford it at the moment, I'll do it when I've got more money'... Money. Now there's a thing. But would I really have done those things anyway? Some of them. But not all. The truth is that you can't live your life as if ever day was your last - its just not practical. Ordinary life isn't like that, with a job, and family, and chores and work and life and commitments. There are some things I sooooo wish I'd done, particularly travelling. But I really couldn't afford it then, and then I had children, and life got in the way. Would I really swap my life with those choices for memories of travel? No. I'm glad I met my husband, and I'm glad I had my kids.
7) The point is to live now that I know more about how precious my life is. To spend time with my family and friends and take the opportunities that come my way. To smile and laugh whenever I can, and not to dwell too much on the crap crips stuff.

Bram the Philosopher x

I hope you all had a great Easter!!

I was researching neuro stuff, and because it is Easter some of the links were different. Not the usual med speak lol.

But I found one article with a video that hit me deep. This neurosurgeon went to a valley!!! He was brain dead, and went to a valley! I wonder if it was the same one I saw?

http://abcnews.go.com/Health/neurosc...ry?id=17555207