Quote:
Originally Posted by MominPainRSD
Oh dear.....so you've had your swelling for a year??? I am so sorry you've got dystonia as well. I try so hard to keep moving my ankle around to maintain flexibility. Are you on any muscle relaxants??? I have been on them for over a year for another medical condition. I wonder if it hasn't helped keep my ankle pliable just having had it on board all this time???
The odd thing is that the color changes (for the most part) ONLY occur when I stand.....they are not present when I'm lying down. I'm hoping that is a good sign of this being a "mild" case. My foot still has the other symptoms (tingling, jabbing, electric shocks, getting hot) regardless of my position....it just only turns red when I stand (and stays that way the whole time I'm up......I can feel it and tell when it's getting worse). This disease is so mysterious......
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Thank you for your kind words, I really appreciate them
! Yes, my leg has been swollen for over a year now which is really frustrating as sometimes it feels like i've got a cast on my affected limb and I can't walk very well because of it. The swelling varies from day to day and to what I have been doing - if I have been doing more, the swelling seems to get worse and when the pain is worse, the swelling is worse - it's so frustrating!!!
I am not on any medications at the moment because non of them worked for me at all and the side-effects often outweighed the benefits so my doctor thought I was better off them. I have been on several muscle relaxants including Baclofen, Diazepam, Kenadrin, Propranolol etc but they didn't work and my doctor felt that they were making me way too "floppy" as I couldn't stay upright very well so I had to come off them almost straight away.
The Dystonia started almost straight away for me so I think that is what made it hard for me to move my leg ... the Dystonia didn't happen because I didn't move my leg but rather because I couldn't move my leg according to my Neurologist if that makes any sense! My doctors aren't sure whether the Dystonia started first or whether the RSD did - I think they both started at the same time to be honest but i'm not sure and don't think we ever will be!!
I really hope you get some much-needed pain relief real soon and I am keeping you in my thoughts and prayers! I'm glad to hear that the colour changes only happen when you have done too much at the moment - my leg seems as though it is forever blue or red so my mum calls it the "Rainbow Leg" lol.
If you need anything, please know that I am here for you and you can always PM me - i'm happy to help you if I can because I know how scary it is dealing with RSD!