I was using a cane on good days and two elbow crutches on bad days. Even with pacing, my legs have become more and more wobbly, so recently I was given a rollator (totally pants one, but might get a better one myself) and am looking at facing getting a wheelchair. My GP didn't want me to because he says it will make me give up on walking, but I've held off as long as I can I think.

My boyfriend has been on crutches from day one..He will never walk again. He also uses a wheelchair most of the time but we have no way to transport his power chair so he uses crutches most often. He is 33 and has had RSD for 5 years. It started with a broken foot and because of the way his foot is now at such a weird angle he will never be able to walk again. We are told if his CRPS did disappear it would take 30-40 corrective surgeries just to get his foot to the point of being able to be flat to put any amount of pressure on it.
Every doctor he has seen (which is more than 25 from GA AL and FL) has told him he has the worst case of CRPS they have ever seen though..
You are definitely not alone!

Kathy, just had to weigh in on the wheelchair thing....

I saw a physio with a lot of experience of CRPS, she had mobility issues herself. Sadly she went on sick leave not long after, so I only saw her once, but she was the most understanding person I've seen for it. She really understood, in a way no one else has.

I had struggled with the whole thorny issue of a wheelchair for ages. I hated the thought of it, didn't want to be 'disabled' or be seen to give up... I told the physio lady my thoughts and fears on the subject of mobility and wheelchairs, about how limited my life had become and how I wasn't going out that much now and only to certain places where I knew I'd be able to sit down regularly, etc... Basically she asked me which was better, living my restricted access life and worrying about seating, walking distances etc every time I needed to do anything...or using a wheelchair to give me some more freedom and widen my possible outings. She told me that using a wheelchair sometimes DOES NOT MEAN YOU HAVE GIVEN UP. It is a tool to help you do things, the same as using crutches or a rollator. And other people get used to seeing you in it very quickly, and who cares what strangers think? Lol, she was very wise and kind.

I now have a wheelchair. I went to my gp and told him what she had recommended (she wrote to him as well) and asked to be referred for an assessment. I went for an assessment, got a voucher and took it to a dealer and got my chair that day. The first outing, I was anxious about being in a wheelchair, but it was so nice not to have to struggle slowly with crutches!! We went to a big department store, something I hadn't done for months, and I wheeled myself around on my own.....the bizarre thing is that being in my wheelchair makes me feel more free and independent than I do when I am on crutches and looking anxiously for a seat before my foot goes mad!

We all do what we have to. Your GP is a fool to think of it as giving up. It is a big step psychologically, and as long as you want one for the positive reasons, and still use crutches or nothing whenever you can, then it is a GOOD thing to do, and nothing to be afraid or ashamed of. Sometimes GPs just need to be told firmly what you want...

Sorry to go on, but your words really struck a chord!! I hope you can get one soon, they really are fab things, and can be pimped up for a bit of individuality...

I went to town on my own today for the first time in ages. I used my crutches. I went maybe 200 yards total and was shattered and hurting. It felt good, but i'd have liked to go further than just to the chemist. I'm going out this afternoon for some fresh air.....I'll be in my chair!

Bram.

Your post is so dead on. Live your life by any means necessary so long as you continue to LIVE it. People really do get used to seeing you with the chair, walker, whatever. When I first got back to work one of the other managers called me scooter girl...now when someone mentions it she looks at them like, "What are you talking about?" She doesn't even notice it now because I still run circles around others...lol.