"My RSD Hell" Shannon's story

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From: Shannon (Original Message) Sent: 2/26/2008 3:17 PM
I am only 26 and gave been suffering with RSD/CRPS since I was 22. I was in a car accident back in 2002 and had knee surgery as a result of it. The Dr. didn't do my surgery correctly and had to have it corrected. It was a little over 1 year between the first and second surgery and that is why I developed RSD. It started out only in my left knee and has since spread to all over. The cold weather is killer on me. When I step outside in the cold it literally feels like there is blood running down my legs. My left is is still the worse of all. It changes color, purple, blue, gray, red, pink, etc. My knee is still swolen from my last surgery in 2003. It is also always about 3 degrees colder than my right leg. I usually always keep a lidoderm patch and ace bandage wrapped around my knee because any clothing or even the sheets touching it hurts so bad. I suffer from severe depression and anxiety from this now. I used to spend a little over $300.00 a month on medication to try and function daily. A lot of the medication has lost it's effectiveness so now I am only on pain medication and go for Epidural Steroid Injections and am currently looking into the spinal implant to block the nerves. I used to do the Lumbar Sympathetic Blocks but they no longer work so well. I would not wish this disease on anyone. I am a prisoner to RSD. I can no longer go skiing or do any water sports for fear of injuring myself further. I am out on disability because of this. I have been on disability since I was 24. I was a paralegal before that and had an awesome job but can no longer do it. I have been with my fiance for 9 years and he is unbeliveable!! He is so supportive of me and takes me to any procedure that I need and helps me with overcoming this and the depression and anxiety. I have found an unbelievable pain managemnt Dr. He is a life saver. I am hoping that the soinal implant will be a success and hopefully I can get some of my life back. I still have my whole life ahead of me but it's hard to live it like this!! Sometimes I don't want to either. The worst part of it is that a few doctors that I have been to prior to being diagnosed with RSD told me that there was nothing wrong with me that my pain was "all in my head". That was hard to hear from a doctor. That there is nothing that he can do for me because there was nothing wrong with me. That is what the first surgeon told me after he performed the first knee surgery. Finally, after 3 more ortho doctors, I found one that did believe me and actually he sent me to pain management to treat before he would repair my knee. My kneecap had to be moved and reattached. Thank you to him and pain management and my fiance for helping me through this!!! I feel bad for anyone else suffering in RSD HELL.



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From: byrd45 Sent: 5/27/2008 11:36 AM
Hi Shannon,
I am sorry I didn't see this sooner or I would have replied to you. You sure have travelled a rough road. It seems that RSD likes to carve the toughest journey so it can see what we are made of but I think that people with RSD are forced to be more resourceful than the average person without RSD. We have learned when there is absolutely nothing left in our reserves and we feel like a writhing mess of pain cells somehow we pull another hour,another day,out from our reserves. No matter what the situation,pain,whatever,even though we might not want to go on we do. This is what people with RSD do in pain with too little sleep, bleery eyed, and sick we do why?...Because this is our life and we are entitled to it even in this form, and if we hold on another day maybe, just maybe things could get better for us. Maybe a new medicine or treatment will come along, and help us have what we rightly deserve, our place in this world without the pain. I've learned over the seven years I have been living with RSD that people that have this and their loved ones are some of the strongest people I have ever seen or met in my life.As for those doctors they don't know you and they definitely are quacks so don't even give them another thought. It really angers me when doctors like that are allowed to practice medicine. I recently went to a medical exam from workers comp after seven years of having RSD and almost dying last year from a blood clot due to complications from a port they had implanted so I could have Ketamine treatments to help with my RSD. This doctor says not only don't I have RSD, but there isn't anything wrong with me and everything is magically healed. I was pissed like I have never been, and crying at the same time. God he has no idea how many times I have prayed for that to be true and still wish it was, but it just isn't. What is with these doctors are they daft or what? You, me, or anyone with RSD doesn't want it!!!! Who in their right mind would want it but when we already have it. We have no choice to face reality and it truly hurts to have a doctor who has taken an oath to protect his patients and do no harm hurt us by lying like that or accusing the patient of lying! I don't blame you for feeling hurt but just remember it isn't your fault that they are a quack. I'm glad you finally found a good doctor that knew how to help you and please if you would like to add the good doctor's name to our RSD Docs board it could help someone in the future who is looking and in need. Only if you feel you want to it is a voluntary thing to add to the board okay. That is wonderful that your fiance is always standing by you! What a great guy! Thank you so much for sharing your story with us and I hope to hear from you real soon!
Love,
Robyn