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 07-21-2014, 05:27 PM #6
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Angelina55 Angelina55 is offline
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Angelina55 Angelina55 is offline
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Join Date: Feb 2013
Location: Post Falls, ID
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I was at a loss for words when the Pain management doctor told me he would no longer see me after my last injection made me worse. I am pretty sure they did something wrong and don't want me to know. A new doctor came from out of town into their office and they wouldn't let me even see her! So we (my PCP & I) found that really strange!! But I don't want to just keep living this double life! I can't anymore. I can't cry whenever no one is looking, try to not limp or look hurt when family and friends are around, pretend that I am doing great all the time, but as soon as I am alone start screaming into my pillow. How does a person manage a life like that?

You are very lucky to have love ones and a boyfriend around you that love and care about you! Don't take that for granted. I wish I had someone to just hug me sometimes and let me cry and tell me it is ok to show that I am hurt. Or to have someone come and help me at my house instead of me always having to go to their house and help them.

I am excited and nervous about my appointment. I am not sure what to bring??



Quote:
Originally Posted by catra121 View Post
I'm so glad to hear that you finally got the appointment and I will be sending good vibes your way in the hope that things go well and you get the sort of treatment you need.

I got so angry when my primary doctor said to me, "You're just going to have to come to terms with the fact that you may spend the rest of your life in a wheelchair." I was 27 or 28 at the time...and that was the final straw. I walked out of that office (rolled really since I was in a chair) and called up a different doctor and scheduled an appointment. This was the doctor who delivered me and while there had been several other red flags in my care that one statement put me over the edge...I was not ready to give up on myself and what sort of doctor tells that to a patient? Ugh!! My mom over reacted to my reaction but I said I was not about to waste any more time with a doctor who clearly did not have the same goals as me.

Best decision of my life and I ended up with another doctor who actually listened to me, what MY goals were, and helped me achieve them. I walk with a walker now and the pain is still just as bad...but I have my life back. It took MONTHS of at home physical therapy (where the therapist came to my house) but I got the function back enough to take my life back and get things back on track. They won't ever be the way they were...but anything is better than being in pain 24/7, unable to walk or stand, feeling trapped on the couch, not going out, not doing anything, and feeling completely and totally useless to the point where you ask yourself why you bother going on with it.

But I know I was/am VERY blessed to be surrounded by people who love me and who have given me the support I need to get better. They never question me when I say I am in pain or I can't do something. They help me out however they can but do it in a way that doesn't make me feel "broken" or "less than"...and that's important for my mental health too. My boyfriend does give me a hard time when I overdo it...but just because he's concerned about me...it's not meant to belittle me in any way. And it's usually something I know anyway...I often overdo it and know I am overdoing it before I even start...but there's a stubbornness in me that sometimes results in me wanting to do something for myself darn the consequences.

Anyway...enough of my rambling...all I meant to say was that I am VERY happy you got your doctor's appointment and I hope it goes well for you. Take care.
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