[cinders999]

This is the first time I've posted on a forum, I didn't even know they existed. I've not had broadband for long, just pay as you go dongle.

I've had rsd in my left arm for 16 years now, it started in the hand in '96 but wasn't diagnosed till '98 by which time it was really bad & was starting to spread. Three years ago I bumped my knee & got water on it, the knee cleared up but gave me a few problems for a while then went. A year later I started getting pain in my hip, that also eased a little with good pain killers. I noticed I wasn't walking properly about 6 months ago, I have rsd in my left foot now too. The foot has clawed the same as my hand. All the research I'd managed to do said it could spread but my consultant didn't seem to think it could. I have a new consultant now, he's digging his heals in a little about pronouncing rsd in the leg but he's treating me for it.

I'd love to know if anyone has any tips for trying to keep my foot straight, at the moment it wants to point east to west instead of north to south, & its rolling under, I'm walking on the outside part of the foot. I've bought proper walking shoes, on the advice of my podiatrist, but the foot still tries to turn in the shoe.

[kathy d]

Hi Cinders999 and welcome to our place to vent and get some good advice. Sorry you have had this mess for 16 years. I was pretty impressed at how long it took for your body to spread it. Unfortunately for me, from initial injury to full body took only four months for me...with my organs shutting down! Yup it was a crazy time. My initial site was my foot so I understand about the disuse of it and I walked on the outside of my foot for a year and a half. It is painful but you have to try and desensitize your foot all the time. If your foot only wants to go east and west then make it go north and south. I started out with ankle pumps and did them constantly just to keep things moving. Also, I used to take a towel and roll it up and put it under my foot and then just move it back and forth to try and desensitize it. Hurt like heck but it had to be done. I've had rsd for seven years now and each day is a journey for sure. Just try to do as much as you can each day without going over that fine line where you will be in lots of pain. Best of luck to you and welcome to our club! We are glad to have you here.
kathy d

[catra121]

I dealt with a lot of these same issues in my foot last year when my RSD got a lot worse. The biggest thing for me was the physical therapy. Starting small like Kathy said with the ankle pumps and the towel rolls and working up to standing exercises and walking. It took a lot of work and I will often have to actually THINK about what I am doing with my feet because they will still do this...and it gets worse as I get tired. But all the concious effort and pain is worth it because I am now walking fairly normal almost all the time (though I do have to use a walker). But it took several months to move beyond just the stuff I could do sitting down and that was with doing the exercises several times a day every day. But it is possible to get past it if you can push through the pain in the beginning...it does get easier as you go but I won't lie and say it is ever painless.

I'm so sorry to hear that you have RSD and have been dealing with it for so long. The internet is a really great resource for those of us with RSD (especially since doctors often aren't in my experience) and this particular forum has been a godsend for me. If you ever want to know more specifics about the different types of physical therapy, just ask...I'd be happy to share. The hardest part is really making sure that you have enough pain relief so that you can DO the therapy...but you will still have to push though a lot of the pain regardless.

[alt1268]

Hi Cinders,

Welcome to the forum. You will find this is a great place to find information on RSD and other issues. Everyone hear is great and I consider them part of my family. Feel free to rant, rave or just chime in when you feel like it.
As far as your foot, I can only agree that you need to consider more pt.

[cinders999]

Hi, thanks for the advice, I'll try the towel exercises. I'm really lucky as my daughter, Suzi, is engaged to a PT(physical trainer), David. He's really great at designing my exercises (David works with cancer rehab, MS & chronic illness clients), good job really cos my physio hasn't done anything for my foot so far (it's been bad & turning for about 6 months) except give me some pictures of hands & feet to 'play' with

I didn't even know RSD could spread till about 2 years ago, my consultant wasn't that knowledgeable, my new ones ok, just a little slow. I don't know why it's taken so long to spread. I guess maybe my attitude may have masked some of it & I was on oral ketamin for about 10 years, I only came off it about a year ago. You see I got my RSD in an injury from domestic violence, luckily I left the situation just disabled, (he got sent down for manslaughter about a year later!) I've been so determined to beat this & not 'let him win', that I've fought it every step. I think the signs were showing when I came off the ketamin but I didn't see them. It's such a long time since I got RSD I don't really remember what it was like when it first started.

I'm glad I found this site, I think the advice I'm gonna get from here is going to be very helpful

[catra121]

I'm so sorry that you've had to go through so many trials in your life. You are probably right about the ketamine...that probably held off the spread for a long time. You are very lucky to have your daighter and her fiance...it is such a gift to be supported by the people in your life. Sometimes I think some physical therapists just don't get it...RSD and its symptoms take more work than just things to "play with". I had a few like that and they got me no where. I ended up with a marvelous one last year who helped me conquer my functional problems. I think she would have been great anyway but it probably didn't hurt that she knew who I was...my brother was on her husband's little league baseball team AGES ago...when he was like 10 and I was 11. That personal connection probably didn't hurt...though as I said I think she's just one of the good ones anyway

Glad you found your way here and I hope that you are able to find the help you need.

[daniella]

Have you tried pool therapy or pool walking?
I am sorry for all you have and continue to face. You sound like a very strong women and positive which I think helps in recovery.

[cinders999]

Originally Posted by daniella

Have you tried pool therapy or pool walking?
I am sorry for all you have and continue to face. You sound like a very strong women and positive which I think helps in recovery.

No I haven't tried pool walking yet, I'm terrified of swimming pools. I have managed to get into the building, (that was a great achievement) I'm hoping that I'll be able to get in the pool soon though, just taking it in little steps. I'm going to try just going up to the observation room in a couple of weeks. Someone told me it'd be good to do hence my trying to get there. Has it helped you? What do you do when you get in the pool?

[daniella]

Originally Posted by cinders999

No I haven't tried pool walking yet, I'm terrified of swimming pools. I have managed to get into the building, (that was a great achievement) I'm hoping that I'll be able to get in the pool soon though, just taking it in little steps. I'm going to try just going up to the observation room in a couple of weeks. Someone told me it'd be good to do hence my trying to get there. Has it helped you? What do you do when you get in the pool?

Well I only tried pool therapy once at Cleveland Clinic at the very start of this condition. I was in a pain program there but my pain was too high so I could not finish. I am thinking of trying it again pool therapy but for way less time and much slower. Make sure the water is pool therapy temp too. If I were to go back I would do pool walking at first so not actually swimming.
I am sorry you are fearful of the pool but like you said small steps. Is there someone that can go with you? For me I would only do a therapy one like I said because of water temp and also other people I fear getting knocked or the waves they make. I think in any new movement or pt type thing for rsd starting slow and working to more is better.

[catra121]

Just wanted to add that I have done pool therapy (back in the beginning about 6 months after the RSD started). Walking, standing, and any other weight bearing exercises are much easier in the pool and can allow you to do more and get that function back. It's a good transition if you can do it. Back then I was doing the outpatient physical therapy 3 days a week and we started out with 2 in the pool and 1 day out of the pool, then 1 at the pool and 2 out, and then all of them out. Swimming was surprisingly the MOST painful thing I did in the pool and was the only thing that I was unable to do of all the exercises. Did not expect that and neither did the therapist because I pushed through the pain for everything else.