Well hello there, I missed your post here. Thank you for the time in saying hello. I have not spoken to another nurse with RSD. Seems I missed a huge diagnosis on myself. LOL. Doctors and nurses make horrible patients, I think only because we do not know how to communicate to our doctors as their patient! I found that I tend to make them nervous as I speak in medical lingo as it is second nature. But maybe doctors are not used to that coming from their patient. Anywho, I stopped doing that and now sense a relaxation in my doctors behavior.

I agree about not admitting pain from nurses, but I also see this in many people. To tell the truth my 10 year missed diagnosis was due to my insecurities. Our culture has a taboo around the sick and dying. This taboo is killing our hearts, all the stereotypes we are supposed to fit into is also killing us. So sad to me. But I am trying to do my best to teach myself and help others who are traumatized like me as now I understand better.

I think the 10 year missed diagnosis happened because of these taboos and my insecurity. That built in "American work ethic" along with "work hard and support yourself" or else you are a "lazy lowlife" . After a little therapy these ideologys is what I found inside my head. Crazy how I could not even rest when I was terrible sick. Very very sad how this happens to so many people. before my surgeries I was driving around seeing patients and sobbing in between each patient as I drove, I was just in so much pain I could not help myself. I have had a very,,very sad 10 years. I am finally not suffering like that any more and am so much happier as a person.

Another reason I suffered for so long is that I was brutalized by my caregivers when I would cry or say "I am really hurting" as I look back I think they just did not understand what was happening to me and neither did I. Does not excuse their bad behavior though, they could have asked me more questions but they didn't. Since I was told by every one around me to "suck it up" and "you need to do what every one else is doing" I stopped talking about being in pain.

My family and friends treated me bad, so I moved away just like a leper. I had no support and I lived alone so I could at least cry in my home and nobody could say " you have to be strong" or " everyone has pain sometimes" wow you gotta love that one huh?

Another reason this happened to me is that I was given the wrong information in nursing school, and only saw one patient with RSD. I do not have swelling, redness, atrophy ect...so I dismissed the idea I could have RSD. As nurses we are not instructed that there are "pain syndromes" other than RSD. Well I didn't get that information anyway.

Sorry to rant here, I just have to get this out of me so I thought I didn't have RSD because my symptoms did not match. I had cervical ribs and that is what started the whole thing "a birth defect" oh no another taboo. I was up against many taboos at once and that just shut me down. I had no voice because I felt it was me that was wrong. My body was wrong. Right? Thank god I had some counseling and my eyes are open now. I am pretty angry, but that is expected after what happened to me and after suffering like I did for 10 years. My birth defect made the thoracic outlet have no outlet LOL. The rib on the right was huge, and I am a small woman. There was just no room for my nerves, so one of the nerves was just crushed before they were able to do surgery, so I had RSD before surgery and my pain did start before my surgery when nerve was being crushed. My surgeon said " how was you working like that"? The median nerve was almost flat. Well everyone knows we have to do therapy before insurance will pay for surgery. Well that's why it took so long to help me, and I worked all the way to my surgery date. I wanted to die, but I just have a very strong will to live instinct unfortunately......but I am glad I survived as I am going to use what I learned and try to help others in my situation. I know I did not suffer for no reason and there is a purpose for me. Just the way I am, disabled and all!
I also believe the diagnosis was missed because the rib surgery decompressed that nerve and I did not have the progression or RSD. My cold hand went away, many of the RSD symptoms stopped except for the pain. I think the surgery may have disguised the RSD. I do not know.
Sorry so long. Anyway I wrote a letter to all my family and loved ones and I go home to see everyone in 2weeks. I can't wait to see them. The truth is out. Some will have to deal with feelings of guilt "but I will help them" as what happened was not all anyone's fault. But some I will look in their eyes and tell them how I feel about what happened. Being mean to someone in pain to "shake them out of it" is NEVER ok. I am not going to be mean like they were to me,but I will tell them out of love how I feel about what happened so they can learn from this horrible experience we all went through. I will not let my suffering not have any meaning , I just believe it is a awesome chance to grow our hearts.....like in the grinch movie. So wish me luck and any advice would be appreciated......I really want to tell some people how evil they are and tell them how much they hurt me, as living alone with this disorder was another lower level of hell on this earth. But I know that will not help anything
Oh my god, I just had to get that out of me. I am so glad I am finally strong enough to try to deal with my emotions about this. I want to finally be free from that and I am finally feeling better after 10 very hard years.
Take care everyone! I sure hope this rant can help someone here. LOL!