[tkayewade]

Is there anything that can be done for the instability of the feet and ankles? I'm in a wheelchair right now due to the pain and falls due to instability. I know surgery is a no no, but I've tried orthotics, walking boots, physical therapy, and turned my scs up higher. Yesterday I was pushed by a new neuro to check balance and that of course made things worse. I know RSD limbs aren't supposed to be immobilized, but nothing is working. Has anyone tried a cast? Did it help? I'm at my wits end. I would rather be immobilized for a bit than be in the wheelchair forever. I took a spill about six weeks ago that seemed to be the catalyst to these problems. My neuro seems to think it's a problem with the ankles or flares due to absence of pulses and reflexes. However, he by his own admission, knows nothing about RSD. My pain mgmt is the only dr who treats me for that. Sorry if this long and I hope it makes sense. Any help would be appreciated.

TK

[catra121]

Well...all I can do is share my own personal experience with this. About 2 years ago my RSD spread and got worse. I ended up in a wheelchair because my balance was off, I kept falling, and it got to the point where I could not walk or stand at all. I literally had to crawl to get anywhere in the house.

So...what got me back to walking and not only walking but back to work full time in a job where I need to be on my feet for 9+ hours a day? Physical therapy and a walker.

I know you said you've tried physical therapy but I've been through it twice and the last time was very different from the first so I think it's important to know and understand what sort of physical therapy actually got me back on my feet. It was a SLOW process but it worked so I want to share with you that experience and maybe it is something that could work for you.

First off...because I was in such bad condition and not able to walk or stand at all or drive, my doctor prescribed at HOME physical therapy where a nurse comes to the house for the sessions. This really made a big difference for me. I lucked out and got a WONDERFUL therapist who, admittedly, didn't know much about RSD but was willing to learn about it and work with me to find the best exercises for ME. We adjusted a lot of the exercises to fit my RSD limitations and had a great relationship through the 6 months that I went through the therapy.

I also think being at home was key for me because every single exercise I was given in therapy was something I could do at home EVERY SINGLE DAY. I cannot stress enough how important it was to do these things every day because that is what allowed me to 1) progress at the rate I did and get back on my feet quicker and 2) allowed my physical therapist to TRUST me enough to spread out visits so that I could get a full 6 months of therapy instead of running out of sessions after 2 months. The thing with RSD is that you need the TIME with physical therapy...you cannot be forced to get your stability and balance issues fixed in a shorter time just because that's what insurance allows. Doing your exercises every day, that's one of the few things that YOU can control in your recovery when so much else is stuff that you can't.

Okay...so as for the actual exercises. This was a very slow process. The first 3 weeks I don't think I ever even got out of the chair. It was about getting my feet moving, while seated, with a big focus on CONTROLLED movements as opposed to flailing around and just broad movements. We did things like toe/heal raises, leg lifts where I would move my foot side to side and up and down, picking up marbles with my toes, and scrunching up a towel with my toes. I also had exercises to do with my arms like chair push ups (where I would lift myself out of the seat) and different dexterity exercises. I had spread to my arms but this was also important because I needed to increase my arm strength for later exercises.

We also added in exercises on the floor. I had been doing a lot of crawling so we worked on some knee walking (upright on my knees), balance exercises while I was on all fours, leg lifts while laying down, and bridges. Sit ups were not possible for me because of the sensitivity in my ankle/feet.

So then we gradually added standing exercises. It started with first standing at an inside corner of the counter and trying to stand for 3 seconds while holding onto the counter. That was TOUGH in the beginning. But slowly we extended the time, then I tried without holding, then we did leg lifts, marches, etc (all of these while holding on at first). Then we moved over by the sink instead of the corner and did some reaching exercises (toward the windows). Then we did some walking exercises along the counter (walking, then skipping...which hurt terrible and I couldn't do where I landed on my bad foot...then some footwork exercises where I did some vining step work.

Around this time is when I got the walker (a 4 wheeled walker with big wheels and seat). So we added at the end of the sessions laps around my dining room (at first wearing a belt that the therapist held onto just in case I started to fall...which happened a couple of times). This started as just one lap...then gradually moved up to 5 minutes, then 10. On my own I got myself up to 30 minutes several times a day. All of this was in addition to the above exercises.

Then we added in step ups on the stairs and worked on this until I could walk up and down the stairs. I need to use a cane AND the railing...but I can do it. This took a couple of months to master.

One of the later things I worked on was playing catch. I would plant my feet and she would toss me a ball (nerf ball). At first just simple tosses to get me catching things. Then she would throw them off to the side, or low, or above my head. This was sort of scary but we started it in an area of the kitchen where I was surrounded by counters where I could grab on if I started to go down.

It was 6 months of this therapy until I got to a point where there wasn't anything else the physical therapist could do for me. Then it was up to me to increase my endurance which I did by driving to the mall and walking around. Just doing laps through the mall and stores. When the weather got nicer I took my dog to the forest preserve and would walk her around the trails. I did this until I could walk for a solid 8 hours straight.

Through all of this, and even today, if I am having a bad flare or a rough day I do NOT take a rest day where I skip exercises. Instead, I go back to the very first exercises I learned which don't require weight bearing or walking. I kept moving no matter what...but I would go back to early exercises when I needed to. This prevented me from backsliding just because of a flare and then when I was feeling better I could continue from the point I was at before the flare.

I still use the walker but no more wheelchair for me. When I get bad flares my balance will go very wonky again and then it's just about focus and getting myself back to where I need to be. The walker is still absolutely necessary because sometimes out of no where I just lose it with my balance and start to go down. But hey...I'll take it over a wheelchair any day. I have so much more freedom and have learned to adjust things and make them work with needing the walker.

It's really about re-learning how to walk. You have to be patient and you need your physical therapist to be patient too. It takes a LOT of work on your part and a commitment to doing everything in your power to keep progressing little by little. If something is too much for you one day, continue to work towards being able to do it. In my physical therapy appointments when we went to one appointment ever 2 weeks we would run through the exercises and then she would SHOW me the progression (which I wasn't able to do at that point). When she would come back 2 weeks later I would show her my progress on the things she showed me to work on. There was ALWAYS improvement...it was just slow and steady. No giant leaps, no miracle progress, just constant improvement that over time added up to me being able to get walking again.

I know not everyone believes in physical therapy but I honestly think that it's about getting the RIGHT physical therapy and being given enough TIME to get that to work.

I would seriously stay AWAY for immobilization. It will only make things worse. I have a very flexible fabric brace that allows me movement, but prevents me from messing it up really bad and I ONLY wear it if I am walking outside on uneven surfaces. Nothing will be an instant fix...but trust in the research and experiences of those with RSD...do NOT immobilize.

Sorry that was so long but I feel like if I just say "physical therapy" it's not enough to really describe the whole process that I went through. If you have any questions or want to know more details about what I did in therapy...just ask. I did outpatient physical therapy at one point and it was just not as beneficial. The exercises were too hard on me and were not tailored to me as an individual. And the time limit seemed pretty fixed at outpatient physical therapy. If I did not progress fast enough then they made me feel pretty awful. They didn't give me stuff to do at home and it just wasn't as useful. I feel so lucky that I was able to get the at home physical therapy and that I got such a great therapist to work for.

[Brambledog]

It is soooo true about the physical therapy - once I had a good therapist who understood the CRPS a bit things progressed much better. That was a great and informative post Catra

I can't add much exercise-wise to Catra's post, but one thing that really helped initially was a series of general body exercises 'for those confined to bed' - I think it was on a diabetes site!! I started them after I had been having a particularly bad flare for over a week, and I literally couldn't get downstairs and struggled to get out of bed at all. I knew the longer I stayed inactive the worse things would get, so I started doing the page of exercises every day. It really helped, and within a few days I was feeling a bit better and able to do a little more. Daily exercise of some kind is hugely important in CRPS, particularly on the bad days Core body strength is vital for everyone, but particularly if you have any kind of weakness that affects your walking.

The other thing that helps with the CRPS I have in my feet is walking about on carpets barefoot. I find the extreme of temperature walking on a hard floor does me no good in the long run, but carpet is fine. Walking barefoot makes your foot muscles do all the jobs they were designed for, and really helps with strengthening and stability. Wearing slippers or shoes all the time weakens some of the muscles in your foot because you don't tend to grip with your toes in the same way you do barefoot. It's worth a try.

I also have a Wii Fit system and I do games like the balancing ones - ski slalom lol, and balance board - they are really good for strengthening and balance, and my physio thinks they are excellent for CRPS in particular because the fun visual element helps to distract you from any discomfort or learned guarding behaviours. I position mine on the floor near my sofa and sideboard so that I have something to hang onto if need be!

Good luck,

Bram.

[cactusfoot]

If you can't go a year or more without spraining your ankle it is considered to be permanent ankle instability. Alone that would be bad enough but couples with rsd/crps or trouble with both ankles can definitely lead you to be dependent on walking devices or if extreme confined to a wheelchair. My advice is to avoid spraining your ankle for a year or more, pour yourself in to physical therapy, work it as much as you can, rest it whenever you need to. goodluck!

[SloRian]

Originally Posted by Brambledog

I can't add much exercise-wise to Catra's post, but one thing that really helped initially was a series of general body exercises 'for those confined to bed' - I think it was on a diabetes site!! I started them after I had been having a particularly bad flare for over a week, and I literally couldn't get downstairs and struggled to get out of bed at all. I knew the longer I stayed inactive the worse things would get, so I started doing the page of exercises every day. It really helped, and within a few days I was feeling a bit better and able to do a little more.

I've never heard of that - that is a GREAT idea! I have the complication of CFS thrown in, and I have to be so careful to not over-extend. I've found that the only thing that I can do is sit on this bouncy-ball and gently bounce for 5 minutes (and perhaps that will be a helpful thing for you, too, tkayewade - I bet it helps with balance just a bit). I can do it because I'm sitting down. But exercises in bed sounds like a great idea. I'll have to google that.

[Brambledog]

Here's the link...

http://www.diabetes.org.uk/Guide-to-...nfined-to-bed/

They have been great for me, and even though I am much more mobile at the moment I've been keeping them going and doubling the amounts of them when I feel up to it

I find music helps!!

Bram.

[SloRian]

Thanks so much for the link! I'm definitely going to try that. That is a wonderful idea for people that just can't do regular exercise. Exercise really helps, but you have to be so careful to not overexercise.

I love music - I have an insane number of songs/music of all kinds on my iPod. It's kind of fun to put it on shuffle sometimes and hear a Beethoven symphony followed by Bulgarian dance music I'll have to find an appropriate "exercise in your bed" playlist

I've found what helps me sleep, though, are the nature sounds - specifically, ocean sounds. I grew up in California, and we would camp at the beach, and I miss it so much...

[tkayewade]

Thanks for all the great suggestions! I appreciate them all. I definitely don't want permanent ankle disability although I think I may already have it.

TK