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 04-16-2014, 11:19 AM #11
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I guess this is what I hold onto Allen, the resentment and anger towards the surgeon. Same thing in your case, how can 1 person take away our lives like that and have no remorse what so ever?
It was really hard to forgive this guy. When I went in to see what was wrong with me. I had to threaten to jump on his sports car to see me, otherwise it was a 2 week wait.

Because I threatened to jump up and down on the hood of his $85000 car.....he cussed me out all the way back into the treatment room. He listened as I told him what was wrong, then proceeded to check the wrong leg. When I corrected him....he started cussing again.

He cussed a blue streak when I told him I wanted another doctor to fix it. When he discovered that the artery was blocked......all he said was ....oops!.
Not Oh man im sorry....just oops!! Thats when I started cussing!

I tried to sue, but in California they capped the award to $250000. The attorneys would tell me to go lose my leg , and then come back!

You have to realize I probably made more money then he does, and had a nice sports car too! He took everything away without even an Im sorry.

But after a few years I realized I was carrying around this anger and hate, and it was only hurting me, not him. He didnt even have a clue. It doesnt mean I have to like him, but I needed to move on in order to find a life.

It isnt easy when you start thinking about all the things he took away, but there is no going back. I have to look at what I am able to do, and see if I can build a life out of the ashes.
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Old 04-16-2014, 12:48 PM #12
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Originally Posted by toepain2013 View Post
I was a young, healthy 28 year old. I rarely got sick, worked long hours, took long hikes, ran daily, played soccer 3x a week and was notorious for having the toughest feet around (I was notorious for running / walking barefoot -- even on hot asphalt or sharp rocks -- I even went tide pooling bare footed once!).

At 28 I finally felt like everything was coming together. I had met the girl of my dreams and landed a fantastic, well paying job. I felt like a million bucks.

One ill fated night, a home intruded broke into the house I lived in with my girlfriend. After hearing the door bust down I woke up to investigate to find a large, deranged man standing in my entryway. Upon questioning him, he immediately attacked me. I defended myself and actually ended up doing much more harm to him than he did to me (he ended up with 35 stitches in the back of his head, a broken nose and a broken arm) -- but I tore my feet up real good. Luckily I was able to restrain him until the police arrived -- at least he got was he was due.

Fast forward a year later. The girl of my dreams left me as she can't handle the person I've become as a result of the pain. I no longer play soccer. I just stopped running and cross-fit in an attempt to see if things will improve. My career is falling apart, I can barely afford the medical bills from the various procedures I've tried. Basically, my hopes and dreams of becoming a husband, father and successful entrepreneur have seemingly been flushed down the toilet.

My 29th birthday is rapidly approaching. 3 months ago I told myself that if I was still in pain at 29 that I'd purchase a ticket to Sweden and have assisted suicide. That was likely the lowest point I've ever experienced. Since then I've abandoned the idea -- but I still have days when it sneaks back into my consciousness.

I still try to maintain hope. I still look at the future as an opportunity to beat this situation -- even though my insurance or doctors really think that's possible. I'll never give up though, as I'll do anything to rebuild my life as much as possible.

I have to try to revive my dreams. I have to try to be a tough, happy, successful young man again.
The first two years were the hardest for me too, it does feel like everything is falling apart and it is. But as you learn to adapt to change your surroundings to help you it gets a lot easier and finding someone to help you through it and share daily ups and down does help.

As for your ex- ... My high school sweetheart fiancee man of my life for seven years, he did the same as your ex. Ditched me when I needed him most. That says a lot about how flawed his character was not mine. But I have found over time it was for the best, I am not who I was before and almost all my interests have changed too. If he had stuck it out with me we would be fighting all the time now for a load of reasons. but it may come down to politically I became a democrat bleeding heart liberal where as before we were gun toting repubs . and all that, that change implies about his view on women, housework and life. So I went through a metamorphosis and because he couldn't even handle the catalyst of it he left. I have days where I miss something about him still once in a while but for the most part it is good that he left. Even if it felt like **** when he did. It takes someone very strong and wonderful to be with us who have rsd, I feel blessed to finally have found one.
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Old 04-16-2014, 10:47 PM #13
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Originally Posted by toepain2013 View Post
I was a young, healthy 28 year old. I rarely got sick, worked long hours, took long hikes, ran daily, played soccer 3x a week and was notorious for having the toughest feet around (I was notorious for running / walking barefoot -- even on hot asphalt or sharp rocks -- I even went tide pooling bare footed once!).

At 28 I finally felt like everything was coming together. I had met the girl of my dreams and landed a fantastic, well paying job. I felt like a million bucks.

One ill fated night, a home intruded broke into the house I lived in with my girlfriend. After hearing the door bust down I woke up to investigate to find a large, deranged man standing in my entryway. Upon questioning him, he immediately attacked me. I defended myself and actually ended up doing much more harm to him than he did to me (he ended up with 35 stitches in the back of his head, a broken nose and a broken arm) -- but I tore my feet up real good. Luckily I was able to restrain him until the police arrived -- at least he got was he was due.

Fast forward a year later. The girl of my dreams left me as she can't handle the person I've become as a result of the pain. I no longer play soccer. I just stopped running and cross-fit in an attempt to see if things will improve. My career is falling apart, I can barely afford the medical bills from the various procedures I've tried. Basically, my hopes and dreams of becoming a husband, father and successful entrepreneur have seemingly been flushed down the toilet.

My 29th birthday is rapidly approaching. 3 months ago I told myself that if I was still in pain at 29 that I'd purchase a ticket to Sweden and have assisted suicide. That was likely the lowest point I've ever experienced. Since then I've abandoned the idea -- but I still have days when it sneaks back into my consciousness.

I still try to maintain hope. I still look at the future as an opportunity to beat this situation -- even though my insurance or doctors really think that's possible. I'll never give up though, as I'll do anything to rebuild my life as much as possible.

I have to try to revive my dreams. I have to try to be a tough, happy, successful young man again.
I try not to reply any post but yours is different,you are still young,you will be able to fight back ,don't get discourage for anyone ,you own your life and only you can built a future,great future ahead if you try harder,I know is hard to deal with the physical and emotional side of rsd/crps and suddenly no one around you,feel defeated is normal but will past,here in nt,we all know how hard is,the future is not written for you yet,you can write you on future just keep trying and always fight,fight back what ever comes to you and is not right, love,love is real when you can understand each other and support as well,soon God will bless you with everything you need,keep the faith,you are already bless,everyday you woke up is a bless,don't stop trying and believe the future,your future is still in blank pages,when you ready go ahead and start your story,I bet it will be different than today's story,good luck,always believe ,something good is been destine to each of us,we just have to wait,be patient,blessing from Jesika
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Old 04-18-2014, 09:08 PM #14
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Im glad you were able to forgive him. Ive come to terms that ill never be able to forgive my surgeon, she knew what she did, she took advantage of me and knew it, and she knew she could get away with it. So ill harbor this anger, but for now that's ok because its what gets me threw the day.



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Originally Posted by allentgamer View Post
It was really hard to forgive this guy. When I went in to see what was wrong with me. I had to threaten to jump on his sports car to see me, otherwise it was a 2 week wait.

Because I threatened to jump up and down on the hood of his $85000 car.....he cussed me out all the way back into the treatment room. He listened as I told him what was wrong, then proceeded to check the wrong leg. When I corrected him....he started cussing again.

He cussed a blue streak when I told him I wanted another doctor to fix it. When he discovered that the artery was blocked......all he said was ....oops!.
Not Oh man im sorry....just oops!! Thats when I started cussing!

I tried to sue, but in California they capped the award to $250000. The attorneys would tell me to go lose my leg , and then come back!

You have to realize I probably made more money then he does, and had a nice sports car too! He took everything away without even an Im sorry.

But after a few years I realized I was carrying around this anger and hate, and it was only hurting me, not him. He didnt even have a clue. It doesnt mean I have to like him, but I needed to move on in order to find a life.

It isnt easy when you start thinking about all the things he took away, but there is no going back. I have to look at what I am able to do, and see if I can build a life out of the ashes.
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Old 04-18-2014, 10:26 PM #15
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Im glad you were able to forgive him. Ive come to terms that ill never be able to forgive my surgeon, she knew what she did, she took advantage of me and knew it, and she knew she could get away with it. So ill harbor this anger, but for now that's ok because its what gets me threw the day.
Hi Tos, I feel the same way about the surgeon who screwed up my wrist surgery. I'm angry that he caused me harm not only in the ER but when he changed casts. He did it without putting me under and my wrist was still broken. I was in so much pain and he didn't seem phased. He even joked about it saying that he betted I wanted to punch him because of all the pain I was in. I said I did but I wouldn't because I thought at the time he was helping me and trusted him. So I squeezed my husbands hand so hard and cried for about fifteen minutes. Then I got a sharp pain in my shoulder and screamed. The dr said that happens sometimes from lack of movement. I come to find out later that I had rsd and that it traveled from my wrist and hand up to my shoulder. There was no nurse in the room and this incident was never noted in my drs report. Big surprise. So now I have rsd in my wrist and all extremeties and stomach and limited range of motion in my hand and no motion in my wrist. I am so angry, not because he made a mistake, but because he just didn't seem to care. But you know Tos, these drs that hurt us and don't care, have to live with themselves and someday have to answer to God. So I am trying to forgive my dr and hope he asks for forgiveness from God. I've made my share of mistakes and don't feel I have the right to judge. I've asked forgiveness for things I did that were wrong. So I going to try to do the same for my surgeon. I know it's hard because he hasn't asked for forgiveness (at least not from me), but they say that not forgiving only keeps us from moving forward. And we have suffered enough. So maybe if not for your surgeons sake, maybe forgive him for your own sake so that you can move on with your life. You deserve to have some peace. I hope you find it my friend. You have a been a good friend to me and I hope you feel better soon. With love, Renee.
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Old 04-19-2014, 01:54 AM #16
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Man Renee what a bummer....you shoulda kicked him! I know what you mean about not being in the records.

They told me I died twice on the operating table, and I can remember waking up and hearing someone yelling....stay with us! Come on stay with us! But in the official records there is no mention at all of any of that happening.

Plus they told me that a small piece of the clot had dislodged and traveled down into the calf. It lodged in the artery that feeds the ankle and little toes side of the leg and foot. He said that it would take a year to know what would be permanent damage, but was better then him going after it and tearing up the leg to get it. That too not in the records. But found it later in a doppler by another doctor.

At least I know what it is like on the other side, because I remember going somewhere. Somewhere where we can travel at the speed of thought
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Old 04-19-2014, 04:48 AM #17
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I put a post about this on a 'mad' thread, but this is about so much more than anger or loss.

At the end of everything, getting this disease has changed who we once were, in a way that we didn't ask for and couldn't control. That leaves us with not just the pain and other health and mobility issues, but a whole heap of emotional garbage we have to carry around afterwards. The old chestnut of 'why me?', and more than that, 'what the hell do I do now?'

If I ever get round to writing a book about CRPS, I think I'll give it a subtitle, 'The First Two Years' Those first two years were my emotional sorting process, where I filed all sorts of things away. During that time I learnt so much about CRPS and doctors and how the practice of medicine actually works, and who the actual priority is for so many medics... There are some fab doctors out there, but I've lost my innocence as far as blind faith in them goes. No bad thing I think.

I was very a active wife and mum, playing chase with my youngest, lots of dog walking, family days out, always the first one to start decorating or gardening lol. I played a lot of tennis and was very involved behind the scenes in the game. Loved it. Loved lots of sports...I'd have a go at most things. We didn't have much money most of the time, but I thought so often that once the children had grown up and moved on to their own lives, we would have a bit more time and energy and cash to go and see and do the things we wanted to... I worked at a physically active job that I was good at and enjoyed, and my money made a big difference to us.

I had increasing left knee pain over about 6 months, started when walking, climbing stairs, etc. Saw the doc, then a physio, no change so referred to a specialist. More physio, getting worse if anything, so he said they would just have a look inside my knee, see what was wrong and sort it out. No problem. He said I would walk out the same day, and be back to my work and sports in 2-6 weeks. Oh the treachery of it. Very very very blasé about any risk... I remember going in to surgery, nervous but so glad we were actually doing something to resolve things so I could get well again.

I remember waking in recovery, oxygen mask over my face, tears rolling down my cheeks, just crying at the pain. They gave me something, concerned faces hovering over me, a hand on my shoulder. Nothing. Heads shaking, more busyness around my hand. I must have slept or something. I woke up in the day ward, more pain, nurses having conversations around me along the lines of 'she shouldn't be in so much pain...' They rang the surgeon, who said they had done a lot of resurfacing work in there, so that was why, and to give me something stronger to control it. Nothing they did seemed to make much difference to me, I jut remember my poor husband sitting by me, lifting the mask to wipe my face and kiss my cheek, holding my hand and looking worried. Poor lad.

Much later I was moved to a room for the night, and was finally given morphine, and I slept for a few hours. I remember being really hot, and so relieved when my eyes started closing... The next day I woke feeling a little better, but any movement of my knee was awful, but they wanted me up on it and moving about, after all, I should have gone home the previous day. One of the surgical team came and said they had cleaned my knee up a lot, but everything was fine now and I would be back to work in a couple of weeks. He wasn't sure why I'd had so much pain. I was helped to get up to limp the few steps to the loo. Omg the fire in that knee. They were a bit impatient. They saw this op every day, it was a day procedure, I should have walked out, but here I was, cluttering up a ward and making a fuss about a bit of soreness.

By the time I made it back to the bed I was a mess. More painkillers, more voices outside my room, more discussions. Husband seemed to be with me a lot, normal visiting rules relaxed for a wonder. I stayed another night. Next day, after another night of very little sleep I had had enough. I went home on codeine and something else, made it very slowly up the stairs to my own bed. I was told it would settle down soon, just tissue damage, no biggie. At home I tried to do my physio exercises, and waited for the pain to lessen... It was getting worse again, saw the surgeon for my follow up, he didn't think I should be still having this much pain. Hint hint. He said they had only cleaned it up and flushed it out, nothing that would cause any problems. Was I doing my physio? Using ice to control the swelling? Of course i was. Honestly, he clearly thought. What a fuss.

Time dragged on with no change. Movement was terrible, even with crutches, no movement pretty terrible too. Life just shrank down to my bed and my sofa and pain. My knee started behaving oddly, the big ball of swelling was still there, but it was very cold one minute, very hot the next. Strange colours started appearing at times, ugly random splatters of blues, purples, oranges and reds. Strange pains too, the dull ache, the bone wrenching pain, the dagger stabs, the lightning hot sear, the cold numb pain of iced water. My family were concerned. The ice I was using to control the swelling started to cause more pain, so I used it less and less, although the physio was adamant it was the only way. My stomach gave up on the ibuprofen, so that had to stop. Elevation continued. You do what you have to. Just survival at that point.

Two months after the op I saw the surgeon again. He was surprised at how little progress I had made, at the swelling, at the pain. He put his hand on my knee. It was having an icy patch right then, thank goodness. He stopped and looked at me, put his hand on my other knee, then back on my bad knee. It obligingly began to flash little orangey patches where his hand had been. He started to ask some questions that I now know are entirely crips-related, he kept watching my knee as it did its weird thang....he sighed. He said, I think you have developed something called CRPS. Chronic Regional Pain Syndrome. He explained it very briefly. He said he would refer me to a specialist, and to see my GP for pain relief. He wished me luck. I left, went home, and started reading. Saw my GP and asked for something to try. Started amitriptyline. In three days I was a different person - the pain was less, I could put my toe to the floor!

My initial elation cooled quickly because progress was so slow and painful. I learnt a lot about CRPS, tried to help myself as much as possible, and luckily found a friend who had had it for a while. Her advice helped such a lot. I hated being so rare and special, having something no one had heard of, including everyone at my surgery. Sigh. The odd medic would pretend to know it, then let themselves and me down by their inane ramblings or poor advice. My faith in medicine really sank, especially when the ami stopped working. I asked for and was given Lyrica, titrated up to a high dose. That gave blessed relief from the worst of the pain and I started to get some recovery.

Of course by then I was a year in. My life had shrunk a lot. A LOT. Friends had wandered away, work had ended, social life was non-existent. It's like starting from scratch in a whole new world as a whole new person. It's unfair and it feels like it. You want people to learn about this cripsy thing, to understand what you're going through and give a damn - but they just can't get it. If it was that bad, surely everyone would know about it? There would be a concert and stickers and adverts about it? Ha. We wish. Trying to do things with all these new thing to think about.....how far is it to a loo? Are there any stairs? Is there a seat? How far is it from the car? Is it cold there? It's like planning your first outing with a new baby, packing everything you might need and planning an escape route. No fun at all. Awful to have to take a babysitter with you because something might happen. The fear was a whole new ball game. I wasn't a scaredy-cat by nature, but now I was skittish going outside my front door.

Oh dear, I'm sorry. I didn't mean to make this post my life story!!!! I'll cut it there. Anyhooooooooooo.....

Cut to nearly three years on, and I have mellowed. Less anger, less sorrow and what if, why me, what now, etc. For me, I had to let some stuff go or I was going to go mad. It's destructive, the anger and grief. You have to go through it, but then you need to put it down and metaphorically walk away. I've found other things, different work that I can control (mostly), different pastimes (thank goodness for Minecraft lol) and a couple of new friends. Getting back out there is like being single again, and it takes a lot of determination to achieve anything at all. I'm still a bit of a coward, and have to really push myself to try anything new at all.

I don't know the answer, but I do believe that it's a journey we have to take. Getting stuck in one place is not good for you, in all sorts of ways...

Anyway. What a ramble. Good luck guys, never give up on yourselves

Bram x
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

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Patella femoral arthritis both knees.

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Old 04-19-2014, 05:13 AM #18
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Beautiful as always, Bram.

I am about 16 months into my journey and don't really know how I feel yet. I am still working full-time which, as you can imagine, is a struggle. I am so grateful that I am able to work but I am also so very tired. Being in pain is exhausting, especially when you spend most of your time pretending not to be in pain.

One thing that I feel I have lost to some extent is the ability to be understood by others. No one has ever even heard of CRPS/RSD. The people closest to me in my family have researched it and understand it as much as you can without having it. But the other people in my life haven't researched it at all. They only know what I tell them about it and that is only the most basic of information, given in a very brief conversation. I know some people have had experiences with medical professionals not believing the severity of the pain so how can I expect my colleagues to understand? The pain feels like a secret that keeps me standing just apart from everyone else.

KimA
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Old 04-19-2014, 06:39 AM #19
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The pain feels like a secret that keeps me standing just apart from everyone else.
Brilliantly put Kim. It is exactly that. And the degrees of separation thing with folk is very true as well....my close family that I live with kind of get it, but they don't fully understand the nuts and bolts of why it is so hard. They are learning the same as me. My parents and sisters don't really understand it, but are better at tolerating it (and me) than they were .

Friends, hmm. Friends are tricky. I lost a fair few during the first year, just not understanding, and not being willing to deal with everything that was going on. As they say, you find out who your friends are....sad, but so true. With the friends i have now I do a lot of pain management around them, and try not to make a big deal out of anything. I've just found that letting them in to any full-on cripsy crap is too much for most people and they can't deal with it.

The one thing I miss most and want most is a close friend I can just be myself with, no pretence, no hiding, no secrets. I find not having that very hard, and it's the main reason I'm here with all you lovely folk. You are my best friend who listens to the worst stuff, and just says, it's ok, we're here, we understand, hang on. Means the world.

Such a shame you can't come round for the odd evening to share a good film, a bottle of vino and a box of chocs though lol

Bram
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

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Old 04-19-2014, 07:44 AM #20
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These posts hurt to read. I think all of us grieve for the person we were. My biggest pain came from having to give up my career. I was at the top, when I had to quit, and had a real shot of having a comfortable future. Instead I am on Medicare/Medicaid, broke, and yep angry. It isn't what I worked for. I do not have RSD, but I do have pain. I can't do the things I did either.
I had a national reputation in the art field, rode horses, skydived, traveled all over the country. All came to a screeching halt. I am sorry we all have to give up many things that we loved, and parts of ourselves that we loved too. ginnie
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Helping support those with neurological and related conditions.

 

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