Quote:
Originally Posted by llrn7470
I just wonder when it's not feasible to think that I will be one of the "cured" ones. I am improving and my RSD was caught within a week, which are supposed to be good indicators. I love ICU nursing, but it is tough on the body and I don't want to let it go. My being out of work for an extended time has made our family finances an absolute shambles (my hubby makes about 1/3 of what I did). This just has to go away and I now find that I am desperate-doing massage and desensitization to the point of tears, contrast baths all of the time, and pushing myself to spend more time walking and bending the effected knee. But, by the end of the day, it really hurts and I wonder if it will be for any good. I have worked my entire life to be a good ICU nurse (got my CCRN, got tons of experience in various places and specialties doing agency, am graduating in December with my BSN and was going to go into the nurse practitioner program, but is that a pipe dream now)? I bounce back and forth between "I'm going to be one of those lucky ones and do anything I can to change this" to "My life is destroyed and why put myself through the pain if this is chronic and will always be my disability." No doc will give you an answer as to chances. I swear, they know a prognosis for Ebola, but not this! I'm frustrated and have been calling all of my past contacts for some clue as it seems my PMR currently is without the balls to tell me the truth (if he even knows.)
Thanks to all who have been answering me. This crap isn't for cowards, but the support sure helps!
Lori Lee
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I'm sorry that you are having to go through all of this, Lori Lee
. The fact that you were diagnosed within a week will give you the best possible chance of going into some sort of remission.
I would just like to share something with you that my PT's at Great Ormond Street told us. When my mum explained to them that NON of the desensitisation was helping, my PT's asked what exactly were we doing. We told them that I was rubbing my leg with a feather and cotton wool etc every day and they explained that that can sometimes cause the nerves to become more "angry" as one minute they are being touched and the next they are not so they don't really know where they are or what to expect.
They explained that to try and reduce the hypersenstivity, you really have to touch your leg 24/7. For me that meant HAVING to wear shoes and socks. The first few times I did it, I would scream in pain but after so long, my tolerance sort of got better. I still have the hypersenstivity but I can "cope" with it better, ie, when my PT's touch my leg, I will just make little noises instead of screaming in pain and it allows my PT's to be able to do more hands-on work with me.
I hope that made sense. It might not help you but it's worth a shot if you aren't already touching your affected limb 24/7. It DOES hurt unfortunately, I wont lie to you but i'm sure if it reduces the hypersenstivity, it will be worth it.
Take care and if you need anything or any help, I am here for you.
Alison.