Quote:
Originally Posted by ali12
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! |
I know exactly how you feel about trying to walk and it feeling like you're in a cast. I don't feel like my foot/ankle are quite mine anymore. The skin is different and it has a mind of its own. Yes, I get the same thing.....the swelling comes and goes......sometimes in a few minutes.......pending on my activity level. They SAY how critical it is to stay moving to avoid osteoporosis and immobility issues, but when I do that, it swells and hurts which only makes me stay in the bed more the next day. It sounds like you experience the EXACT same thing as me. Apparently there is some "happy medium" I'm supposed to find.....hard to do when one limb has a mind of its own (sorry I keep saying that.....don't know how else to put it!).
I am so sorry you've got the dystonia. I've seen pictures of it and what it does to your body and it looks absolutely miserable. Are you able to go to school??? How do your friends react to your situation??? Do you know anyone else personally in the UK with this???? I really want to avoid taking any more meds than I'm already on as well. They all have such nasty side effects.
Yes, my foot changes colors every time I stand. I wear socks as much as I can (since it's cold) so I try not to look at it often. It gets hot to the touch only once a night now for a few minutes (maybe 30). I have NO idea what precipitates that. It oddly seems to be happening later and later each night.
This disease really baffles me. I hope and pray for a successful treatment for this SOON. I'm glad you're part of this forum. You are a sweetheart and have so much to offer the rest of us!!!