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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

I hate RSD
Aug 28, 2006
I hate RDS!!!!:mad: I know that 'hate' is a pretty strong word and I can't say that I have ever used that word lightly (at least in my adult life) but it is the only word that comes close to stating how strongly I feel about it. I can't say that it has ruined my life, but it sure has changed it. Never once in my life when I was younger and would daydream about what I would do or become did I ever imagine my life as it is right now! I had been married to my husband and best friend for less than two years when I was attacked at work. I have gone through more pain then any person should have to. Not only does RSD affect me but it affects my husband and children. My youngest twins had to learn to walk by holding onto my crutches. My other three kids were 9, 7 and 7. I'm sure that this has been hell for them too.

I have been in a coma because of meds that I was allergic to but WC said that they would not pay anything else if the doc did not try the meds. My Nuero surgeon told WC that he needed to do a nerve release or I was going to lose my leg (2 inches of my pereneal nerve was crushed/that is where RSD invaded my body) so WC told him "Well I guess she looses her leg." My Neuro surgeon, bless his heart, told him that he was going to do the surgery and then he was going to contact his lawyer and sue the pants off of them, I got my surgery on Valentines Day '96. I woke up the next day, they were sure that I had a bloodclot. My leg was steelly blue and ice cold. I got to go through the lovely pain of having a freshly operated leg sqeezed numerous times with BP cuffs to 'find the blood clot'. There wasn't one. RSD just raised its ugly little head a little higher. I was pumped full of morphin and was finally able to breathe and see something other than the red haze of pain.

I wish that I could take RSD in a back alley for just 5 minutes. What I would do to it!!!!!! It's like an invisible monster that loves to bring you to your knees, it tries to take everything from you and punishes you more when you try to fight back. I call it the designer disease. Just when you think you know all about it, it decides that it needs to make a new line of complaints so that you aren't wearing the same ones too often. Just when you get use to it, RSD decides that it will learn a new trick. I imagine that RSD often laughs at what it can do to someone. If you aren't fighting it you are fighting ignorant medical professionals that know nothing about the disease so it must not be real. Let alone well intentioned people that let you know that you must 'have a very low tolerance for pain.' OMG are they serious? I would not wish this on my worst enemy! But I sometimes wish that people would have to live a day in our shoes. I dare to bet that one of our best days would be the worst that they have ever had!!

I also am tired of feeling like a medical guinney pig. Here try this, oh it didn't work, how about this, I'm sorry, let's try this. What do you think we should do? Oh I don't know aren't you the one that went to med school. And then you have the shining lights that do try to learn all that they can and instead of wanting you to do their work for them want you to work with them. Thanks for letting me vent. I sometimes get tired of looking for the silver lining and just want to scream. Always in pain, never being able to make plans in advance, NEVER getting more than 2 1/2 to 3 hours of sleep or being up for more than 30 hours and then still only getting a couple of hours of sleep because of PAIN and then getting depressed because you can't sleep because your hurting.

:blob_fire This is what I imagine RSD would look like if we could see it. That is if you add very sharp teeth, a sledge hammer, a blow torch and a colony of fire ants at its beck and call.

Thanks again, Kim

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