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 07-01-2012, 10:52 PM #1
calikris calikris is offline
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Default I need help understanding crps

I'm 24 and I got hurt at work. I crushed my hand a year ago and i have been fighting with workers comp for a year. The Dr. recently diagnosed me with CRPS type 2. That wasn't what i wanted to hear but after a year of them thinking i was lying i was happy to hear I am not crazy and that i do have something wrong with me. I am now battling depression and frankly I'm really sick of hearing my partner say " I'm tired of hearing it already"....i need support
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Old 07-02-2012, 12:00 AM #2
painman2009 painman2009 is offline
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we'll you've come to the right place..(welcome) sorry to hear you have this beast, and unfortunately depression for most is part of the package deal with this. as far as your partner is concerned . have your partner come on to the site and read a bunch of threads. this is a real infliction. the diagnosis is real and the pain is surreal. but as for you. you will find real support here as we all share this beast and suffer in our own way. It is easier for us here as with little explanation we can convey what we are going through. I hope you utilize this forum as a tool towards better mental and emotional health plus a good research point for us as well, There are many different treatments and many different results so this helps us keep up to date to possible treatments.. I hope you find all you may need here.. good luck and god speed
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Old 07-02-2012, 09:37 AM #3
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Your message brought up alot of those feelings I remember having the first year or so of being diagnosed with rsd. I remember my husband also would say "I am tired of hearing it." Eventually, he said you need an antidepressent and that's what I did. I am now on abilify and it has helped quite a bit. I still have periods of excurating pain, but it is mainly during bad weather. i am also sleeping so much better.
WC is hard to deal with. Make sure you have an attorney, and that your atty has experience with rsd. Mine is so so. But he is getting the job done. He really wasn't sure (I don't think) until he saw my foot and the pretty colors it turns.
Rsd is very lonely, so make sure to make yourself some friends on here because this can literally be a life savor. It was for me.

Welcome to the group.
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GOD help me be faithful in the midst of my suffering. Alt1268
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Old 07-02-2012, 11:26 AM #4
anne523 anne523 is offline
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I also injured my hand a year ago at work and developed RSD and the physician kept telling me it was all in my head and there was no reason for what was happening with my hand...one look and he knew. He is just one that doesn't like things to deviate from the normal and he couldn't deal with it. Time to move on and find someone that will treat the condition and me the way it should be..still working on that one. I am 53 and my husband is also not understanding of the pain and limitations this has on everyday life that we all take for granted..sleep being a major one.
I am new here also, but you are not alone..from what i see this is a good way to see how others deal with this monster and cope. Hang in there!
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Old 07-02-2012, 03:32 PM #5
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i'm only 15, so i don't really know a whole lot about work and that stuff, but i'm sorry. at first, my doctors thought I was faking too. and it's never what we want to hear, but it's better than being told we're lying about the pain. and ever since i was diagnosed, it's been hard on me too, just like everyone else. so depression is almost inevitable. but it doesn't help when it feels like no one's supporting you. especially if they're mean and rude about it. it's not really my place to say anything, but i think next time you have a doctor's appointment, take your partner with you. have the doctor explain to them how it makes you feel and what it is. maybe that'll help.. just a suggestion.

and remember, you can message or email me anytime. i'd be glad to listen to you. i think most of us would considering we pretty much know how you feel.

love &many, many hugs.
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Old 07-03-2012, 09:02 AM #6
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I'm sorry to hear what you are going through and that you have CRPS. Mine resulted from a work injury too...which as I'm sure you know just adds another level of stress and frustration to the whole mess. I feel very lucky that my friends and family have all been very supportive and helpful throughout this whole process...never once was I accused by any of them that I was lying or that I was a burden (even though I know I have been the latter many times). Work was always another story...so many people thought I was lying and just didn't want to work...probably still think it...but I don't really care about any of them anymore.

The good news is that things can get better so never give up hope. It takes time to find the things that help the most and to figure out what triggers your pain flares and how to avoid those things. Best advice I ever got through all of this was to focus on the things I CAN control and not worry about the things I can't. It helped me keep my mind on the right track when it felt like so many things were spinning out of my control.

Take care, and please feel free to post any questions, thoughts, feelings, etc that you might have. This forum has been a life saver for me.
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Old 07-06-2012, 02:21 PM #7
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There are some good web sites also that have good info the RSDSA web site and the RSD hope are very good for info the rsd hope one even has a letter to give to family members and freinds on how to explain rsd to them.

I have full body rsd caused by foot surgery I have seen 191 doctors in 13 states before settling in pennsylvania with a great doctor. I have gone every treatment available the stimulater was very helpful for me and then the ketamine infusion really help alot and if you can find a doctor to prescribe you I have ketamine nassal spray and ketamine lossanges for at home which help alot. If you want to see my video on you tube go to youtube.com and type in before and now with RSD.

Samantha
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Old 07-14-2012, 10:23 PM #8
Imahotep Imahotep is offline
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Quote:
Originally Posted by calikris View Post
I'm 24 and I got hurt at work. I crushed my hand a year ago and i have been fighting with workers comp for a year. The Dr. recently diagnosed me with CRPS type 2. That wasn't what i wanted to hear but after a year of them thinking i was lying i was happy to hear I am not crazy and that i do have something wrong with me. I am now battling depression and frankly I'm really sick of hearing my partner say " I'm tired of hearing it already"....i need support
Now's the time to fight this thing with everything you have. After two years the cure rate just plummets. You have age on your side so your chances should be good.

It's really hard for other people to understand this thing and accomodate for it. It's really hard for many of us to accept that we probably won't get a cure. There was a really great write up about this for family and freinds here a couple years back. I'll see if I can find it.
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Old 07-14-2012, 10:31 PM #9
Imahotep Imahotep is offline
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http://neurotalk.psychcentral.com/sh...ghlight=andrea

I believe there's another one as well that's more specific but I can't find it. .
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Old 07-15-2012, 10:15 AM #10
PhyllisJ PhyllisJ is offline
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It's really hard when people, especially family and friends, don't take the time to understand our pain and struggles. I think my husband is finally realizing...after 5 1/2 years...that this isn't going to get better, and it's actually getting worse. I also suffer from a few other joyful challenges such as narcolepsy, and it seems at times my family doesn't care, but the I try to remember a conversation I overheard my husband having with his friend when my hand specialist was still trying to repair the damage. He said he felt so bad and just didn't know how to help me, and that he wanted to take my pain away, but couldn't...he felt helpless. He was almost in tears. If I can remember that the more I hurt and struggle the more helpless he feels, it helps me better handle his seeming frustration with me. I truly hope your CRPS calms down. Welcome to the group.
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