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 02-23-2010, 02:47 PM #11
hollyk24 hollyk24 is offline
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Thanks for the advice, I'll check out the link. I do notice things once in a while, but am not sure if I'm just over thinking it sometimes. I've already told him I don't want to get married until at least a year and half of being together. At times I feel he is using the medical insurance reason as justification for rushing things. It would open up more options for me, but I am not going to go into a marriage for a reason such as that. I'm 30, never been married, no kids, and have been very independant my whole life. I just want to make sure I'm not going to ruin something good just because I'm over thinking it. I'm gonna just try to take it slow and watch how things go for now . . . . . Thanks!!!
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Old 02-23-2010, 03:03 PM #12
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You sound very level headed to me, Holly.

Just enjoy the moments you have now, and keep alert. Once the hinky moments start adding up or not, you'll have your answer.

I figure you came here to get some hints. That is how I found that link myself, years ago, from the net!

If you are interested in personality types, there is a book explaining them all in easy to understand language. It even shows which types get along best with which others.

Here is a link to it. I found this very helpful for dealing with the public and relatives/neighbors, etc. I still go back to it now and then for a "refresher"...
http://www.hermitary.com/solitude/personality.html
http://search.barnesandnoble.com/The...+self+portrait

This book is just fascinating, and explains how the various types get along or don't.
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Old 02-13-2011, 09:26 PM #13
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I will tell you that in my case when I developed CRPS after a car accident where I was a passenger in a car driven by by husband, my husband of 34 years (now) and now my soon to be ex-husband, literally "took over" my life - at first like you are describing, but later he felt he could "tell me" what I should and shouldn't do - and when I tried to do something he didn't feel I should, he got very angry. I was an extremely independent woman, and made far more income than my husband did. He also tried to tell me which medications I should take and which I shouldn't - despite the fact they were all precribed by very legitimate pain management physicians - Cleveland Clinic, University of Michigan, etc. I am a Registered Nurse (BSN), and have always been extremely careful with my medications. I think I know a little bit more than he does about medications, but yet he felt he always knew better. He got to the point he wouldn't "let me" do anything around the house - and while his intentions may have been good (i.e. to prevent pain) he refused to listen to me when I told him I desperately needed to feel that I had some purpose in my life, and that I was able to do things for others than meant the world to me. He literally took away so much of who I was, that I decided I would actually be happier by myself than with him and left. He had also made the decision on his own that we no longer would have a physical relationship two years before I left - and wouldn't listen when I tried to talk to him about that. I literally no longer felt like a woman or a wife any longer. My auto insurance company was paying him to help me with the things I couldn't do - especially on bad days - and when I left, he told me he would call them and tell them they "needed to get someone to take care of me" - and I totally believed he would really do that, so I got a home health agency to have home health aides come into my home and help me. He also threatened me that the insurance company would get "tired of paying for home health aides and eventually put me in a nursing home". That absolutely devastated me - as he was playing on what he knew were my worst fears. I felt I had become nothing more than a "cash cow" to him, and that hurt immensely! He also went to one of my children just after I left, telling him how much I had changed etc., which has led to a very difficult relationship with that son - now even almost a year later. It has led to me feeling like I don't even know who I can trust any longer. He has never been able to understand what he did to me emotionally, and that was absolutely far worse than what the CRPS has done. It eventually got to the point he had very little to no compassion at all when I was in the worst possible pain and in fact got angry with me when I was. I didn't blame him for the pain, or take out my frustration on me either. I tried to live as positively as I possibily could, and tried to do all that I could for myself. He would spend as little time as possible with me -and wasn't the least bit understanding of what I was going through, or the loss I felt. It seemed like his need to control everything took over, and led to the end of our 34 year old marriage. I understand I most likely am not the same person I was before the car accident that led to CRPS, but I try to live in the most positive way I can while living with this horrible condition. He told me I should move home after the first couple days, as he could "life much cheaper than I could" so I did, but now he is trying to make a case that I am "not safe" in my home, because it is a two story and on bad days I often don't leave my upstairs bedroom. He has now had his divorce attorney attempt to supboena my medical records to prove this - which I think is unbelievably cruel - when I tried to leave and get an apartment when he decided he couldn't live in the hotel room type apartment he was in for the first 2 months. At that time, he told me I had too much equipment to move, etc. Now, he is trying to force me out of the house by saying I am not safe. Despite having 12 hour a day home health aides, I also have a Freedom Alert pendant, in the event I need help during the time no one is here with me.

I am sure there are some men out there that love their partners enough to do whatever is needed without taking over their lives, but I never in my wildest dreams would have ever, ever have thought this could have happened to me!

I think you should proceed cautiously, while listening to what your heart and head are telling you at the same time. Don't rush into anything though - I'd clearly take your time and see how you feel then. Best wishes!!
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Old 02-15-2011, 09:11 PM #14
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Good for you, Hang in there & trust God to guide.
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Old 02-17-2011, 01:33 PM #15
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Well...every relationship is different. It's great that he has stuck with you through the whole RSD thing. But I'll share my experience with you and how I think it's different from what you are getting because I honestly don't think you're wrong to feel a little paranoid.

See...Jeff (my bf) and I have been going out almost 8 years now. We used to do a lot things together like travel, go hiking, fishing, etc. In July 2009 I hurt myself at work and was diagnosed with CRPS. It took a few months to find the right doc and get the diagnosis...but while I was happy to finally know what was wrongl...I was devastated at the diagnosis and the fact that there is no cure. At the time I got hurt I was 25. Now I'm 27 and we're still together...but we don't do most of the things we used to. But he still treats me exactly the same as before. We never talk about my RSD, He know I have it and he can tell when I'm having a rough time and then he'll being my plate of dinner out to me instead of me going to the kitchen or he'll grab an extra can of pop for me so I don't have to get up later. But it's mever like he coddles me. He makes me feel normal and that is really what I need.

Right now I am going through a really rough time and come serious complications where I can't even walk or drive because soemthing went wrong with the LSB that my pain doc did and now I an suffering from uncoordination, no control over my feet, extreme pain in my neck and spine including tenderness that is now spreading everywhere. I don't know what wrong and am scared that it's a spread of the RSD more than anything else. So he helps me walk to the bathroom and drives me around (cause I can't right now)...but when we're sitting on the couch he still makes me laugh, reads me the newspaper (which I have always found humorous because I won't read the paper or watch the news). He still teases me for getting crumbs all ober my shirt or fighting with my little dog.

It's great to have someone who is there for you when you need it, and who does things to help you without it all being about being your caretaker. If it were me...I'd try to explain to him that you don't want to be the girl with RSD...you want to be his normal girlfriend. And yes, you'll still need help with things but your relationship can't be about him taking care of you all the time. Does that make sense?

I feel really lucky and blessed to have Jeff...but I also feel guilty because I feel like he has given up so much being eith me, But I WILL get better. I WILL. That's what we focus on and we make our plans for the future like I will be better. And it's that normalcy that keeps me sane.
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Old 02-18-2011, 01:21 PM #16
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I believe you WILL get get better - as much as is humanly possible! I admire you for that! All I wanted was the same kind of treatment that you are getting -we all need to feel that we are still people with worth and value - and that is what my husband took away from me. I tried desperately to tell him that, but he just wouldn't listen! If he had, both of our lives would have been better!
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