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Originally Posted by MominPainRSD
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!!!
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Thanks again for your kind words, I really appreciate them! I'm sorry that you have to deal with the same things as me and I really hope things get better for you soon!
I totally understand what you are saying about your leg not feeling like it is part of you ... that's exactly how I feel and sometimes when the swelling is really bad, it affects the nerves and decreases the sensation so my leg is really numb but yet I still have awful pain which is really strange!!! My Doctor couldn't understand it at first as he had never seen it before but now he say's that the swelling is affecting the nerves so my PT's try and do some exercises to get rid of it.
There aren't that many people in the UK that have RSD. I have spoken to a few online but never actually met anyone with it in person. My Doctor had arranged for me to meet with a 15 year old girl who has RSD not so long ago but I was ill so wasn't able to go unfortunately and the girls mum is now in hospital so we are having to leave it until a later date. I really hope that we are able to meet up soon as I feel it would do both of us and our parents lots of good!!!
I spent almost a year off school and because of the RSD, I am now having to go to a special school about 20 minutes away from where we live. The teachers at my old school just didn't understand and were forever giving my mum fines for all of the time I had off school for hospital appointments and they would complain at me in lessons if I wasn't concentrating (RSD affects my memory and concentration skills). At the new school, the teachers understand as there are quite a few other children there that have health complains. It makes the world of difference when someone actually understands what you are going through and don't judge you!! At the moment, I just go to school for 4 hours every Monday, Wednesday and Friday as I found it way too hard going full-time.
Not many of my friends understand what RSD is. I have lost sooo many friends because of my illness because they just couldn't understand why I wasn't able to do all of the normal things that they wanted to do. Having RSD has really made me realise who my true friends were but unfortunately, I had to learn the hard way. It is SO hard at times not having that many friends to talk to because of this horrible illness and I get pretty lonely at times - I still have some friends who understand but no where near as many as I did. Unfortunately, many of us with RSD have lost friendships and it is so hard to cope with at times - I hope and pray you don't have to deal with that.
Sorry if i'm rambling, I should really be in bed as it's 11pm and I have school in the morning but it's another night of no sleep - ugh! I'm thinking of you and am here if you ever need someone to talk to!