I'm very hard on myself too, but the legs just won't get far. I do move about and keep mobile as best I can and as much I can, of course, that's essential, but I can't get farther than about 10 meters without having serious problems and without repercussions. I can't stay upright more 5 minutes at a time if I want to keep moving the next few hours - I constantly interchange sitting and taking steps, can't stay seated for too long, can't stay upright for too long, so I constantly exercise in moderation as I call it. The absolute maximum I can stay upright for is about 10 minutes (I do often get a flare then, it slowly builds up from the inside and my knees start to burn). If I stay up for about 10 minutes, then I won't be able to get up for a few hours. If I can't get up the following few hours, then my legs stiffen up, which in term lessens my ability to get up and take steps. That's the toll of RSD... I have to pace everything. You can't do too much of one or the other. If you persist through the flares, you'll be in hell the next few days to even weeks! I usually am. This limited range of motion won't get you many places outside, trust me on that! Not that you have to quit trying!

my other thing is i have no choice with having young children and a family dont get me wrong at all there are alot of times that i am uncapable of alot things.. but when i am able to i walk as far as i can .. i guess that it just depends on the person for that tho.. everyone can handle different things. i just have it stuck in my head that i will not go back to a wheel chair period ..

carrie

Hi Dew,

I love the desert, I do much better there. I think it helps detox the body and cleanse the lymph system.

I am sorry to here about your sister being ill. When bad things happen to me and my loved ones, I look at it like I am in a storm, with a lovely rainbow at the end.

I am giving it a go, with building some muscle tone over the summer. One of my MD's told me she goings in the pool every morning before 7am. She shared she didn't feel like it but does it anyway.

Much Love, Roz

Hi Their,

I hope you don't mind me chimming in. I was bedridden for over 2 years of this RSD hell.

Trying to get back on my feet was very discourageing at times.

I had to go very slow, and not despise even very small beginnings.

Much Love, Roz

I think it depends on how bad the RSD is, most and foremost. I think there's enough people trying to push RSD and its effects off on weak personalities for us not to start hinting at things like that. I totally resent this implication. I don't think I have to defend myself on that account. I don't think I owe anyone, in particular another RSD patient, an explanation as to why I HAVE TO use a wheelchair.

by NO means was i attacking anyone i was giving MY personal account of my journey with RSD and that having children that are small has helped me be MORE moblie .. if you will look in that post its SAYS that i do alot of times have problems just like everyone else.. so im sorry if that confused you.. i also have full body and organ involevment and i think that i am lucky to have had this young and learn to live with RSD from a young age and to grow into it so to speak.. i am sorry that you felt that i was attackin you or anyone else .. that is all i was saying on my personal journey..
and never did i say that anyone was WEAK as anyone who has RSD is a very very strong person to have to live like this everyday PERIOD!!
carrie

Carrie, thanks for explaining! :) :hug:

Don't feel bad about about asking about wheelchair use. I have RSD in my leg and arm. I was forced onto crutches because of a wound on my foot that led to my inability to walk. Having RSD in my arm makes using crutches almost impossible. My insurance will not cover an ultralight wheelchair so I bought one on Ebay. It has been a lifesaver and I use it constantly. I've gotten past people staring at me, I stare back. I have come to realize that the wheelchair gives me back some life that the RSD and wound have robbed me of. Always put your needs first and never worry about what other people or doctors are going to think. Let them walk or roll a mile in our shoes!

Exactly. It's about living your life and having the tools to do so. If your body breaks down and has its limits, you try and find solutions.