Anyone else have RSD bad enough you're often on crutches? I guess I'm just hoping to not feel so alone in this. I have had RSD in the ball of my left foot for the past year and a half, and my specialist and I have tried everything: PT, steroid injections, injections to try to deaden the nerves, etc. etc. Nothing has worked, so I just always wear my ortho walking boot when I leave the house since it helps me put the weight on my heel instead, which helps make walking bearable. I've come to accept this, and embrace the attitude of "it is what it is" and move on with life. For the most part, I handle it swimmingly, I think.

I can handle walking short distances, like walking into the post office and back to my car, but for trips to the grocery store or errand hopping in the mall, etc., I definitely need my crutches. I'm 43, and was a competitive tennis player before being diagnosed, so I've been lucky enough that I was in decent enough shape that crutches aren't THAT big a nuisance, but sometimes I just feel so...tired, I guess. My doc reassures me that chronic pain is exhausting and that it's normal to feel that way, but sometimes my spirits just takes a ding.

So I was hoping to hear if someone else faces this. It might make me feel less alone.

I used crutches, cane, and a wheelchair. I ran half-marathons and going around Walmart now exhausts me. I have an scs. I still have breakthrough pain.

Yup, sad isn't it?

I used to be very active, chasing my kids around, played a lot of competitive tennis too, climbing etc. now I use crutches out of the house, hold on to furniture in it, and use a wheelchair for anything further than about 2 mins limp. It's frustrating, but better than not doing stuff

You use what you have to I suppose, but every now and then it does get you down being reliant on things to get you about. Hey ho.

Take care and remember you're not alone. We do get it. My CRPS is in my knee and both feet now. Socks and shoes are a major hazard all of a sudden!

Bram.

Hello AliM. I use a cane some. For the most part, if I leave the condo, I use a wheelchair. In the condo it really depends on the day and how I feel. If I am in a lot of pain or my balance is out-of-whack, then I use the chair there too. I do not have enough strength and coordination to use the crutches. With the chair, I am a bit more independent. I figure, why use all my energy just getting there when I can use the energy to participate when I do get there. For instance, having lunch with friends, playing with the grandkids, walking the dog on a beautiful sunny day, going to the market, etc.

Our dachshund has gotten quite good at walking along side my wheelchair.

It really has helped.
My insurance covered the chair.

Hi AliM!

My daughter had to use crutches in addition to a surgery boot on her left foot for 9 months until recently when we got her into remission with the Calmare treatment. It's so tough, because it definitely helps get weight off the foot and helps with the pain, but then you get other issues, like hand pain, and it's just difficult to handle backpacks (she used the crutches at high school). She also got plantar fasciitis from being in the surgery boot for so long, which added to the pain, so if you don't have that already, you might want to look into gentle stretches to avoid getting it (or find stretches to do if you already have it). We tried to avoid crutches whenever possible, but sometimes we just had to have her use them. There's a lot of balancing to do with this illness.

As far as the grocery store trips and mall trips you mentioned, the grocery stores and malls around here all have the little motorized scooters - would that be helpful to you? It's just another option, and we found that it helps to use different aids so your body doesn't get too sore from any one aid.

Good luck!

I used crutches for a while when it was JUST my ankle with RSD but that went out the window when the pain started to spread to my upper body. I use a 4-wheeled walker now (rollator) and it is SO much better than the crutches ever were. My walking is so much more natural now compared to the crutches and if it's becoming the sort of thing where you need them all the time you might want to talk to your doctor or physical therapist about trying the 4 wheeled walker instead. I know using crutches caused a lot of other pains in other parts of my body...which no one really needs with RSD.

I also have a cane and have had to use a wheel chair (when my spread and pain was so bad that I couldn't walk or stand at all). It took a lot of physical therapy to get where I'm at now but it really is a MUCH better place than where I was 2 years ago when things were at their worst.

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.