progress.......I started physical therapy this week. This is a first for me and my left CRPS foot, I was nervous. There had been no one in our area that had any experience with CRPS. I could not drive, no one to drive me etc.

What with the leaning to the right for so long hurting my back and right hip, making the scoliosis worse, and then being told that I had osteoporosis, it was time to do something.

The good news is......he understood CRPS. I could tell right away he got it. What a relief and encouragement that was. He has only had a few patients with it, he is going slowly with the goal of helping me to put more weight on the CRPS foot to take the weight off of the right hip so I will be able to walk more and better eventually of course.

Back to doing the things I was doing, more focused, when sitting down the foot is on the floor more and more, and more and more in motion, a b c d e f g..... and doing the mirror therapy again. of course all of this is slow, steady, little at a time and gently. Wearing the shoe is still torture. I always was a barefoot girl.

I have a little self-confidence back, I had gotten so discouraged, had not been doing all the things I had been doing. My back is so weak. Now I do a little and then go lay down flat on my back, doing a better job of pacing myself.

Worked in the garden for 5 whole minutes hahaha better than 0 several 5s will add up to less hopelessness as the weeds are growing so fast. We have made it a lot smaller. Hubby even took the shovel for 5 minutes with me and dug up some grass. He does not want to encourage me to keep gardening, as he sees how much it hurts my back, so he does not help. When I understood it like that I was not so angry he would not help me. Of course he did a lot in 5 minutes with the shovel and then I was able to shake out the dirt. It is a catch 22 gardening helped my back stay strong until I was laid up with CRPS. I grew vegetables that got us through the winter, all the things we like to eat, and lots of flowers. Picking the strawberries this spring was torture. So sad to give so much of it up as it brought me such pleasure.

anyhooooo thanks for listening to me. Sending you an imaginary bouquet of black eyed susans. Take care my friends.

peace
zinnia

That is good news!

I had 8 months of worthless PT during which my upper legs went thinner than my calves (and they are thin). I had no treatment for my CRPS at the time, so that might have contributed to it. It's important to both treat CRPS medically *and* do PT. Not just one or the other.

Good luck to you!

Zinnia,

It is so good to hear that you are trying to move forward and start with PT. That feeling of hopelessness can be so discouraging at times. PT is one of the best tools to help us regain some of our function and eventually lessen some of the symptoms of CRPS. Just try to remember to pace yourself and not overdo things that may cause a bad flare. It may take some time, but I am sure that you will be back in the garden, among other enjoyable things, again soon enough. I know how much you enjoyed the gardening and just being out in what sounds like a beautiful yard.

Glad to hear that you are in PT and feel like you have a good therapist. I do the alphabet with my foot all the time without even thinking about it when I am sitting to keep it moving...lol...and many of the other seated exercises as well. It's just become a habit now where even if I can't do much walking I am doing these exercises all day long. It does help though...even the stuff that seems easy really does help. You may need to scale back the gardening...do more container stuff or just shrink it...but you probably won't have to give it up entirely. Our lives sometimes become a struggle between making things manageable for ourselves and also holding onto the things we enjoy. I've had a hard time getting into the garden much this past year...but I do what I can and let the rest go. Next year in the spring we're going to hire someone to mulch it all to hopefully help with the weeds. Hard to justify the cost...but bottom line is that if I can't do it someone has to. But I still maintain my 30 some flower pots on the deck and patio and that makes me feel good. We have a raised planter on the deck with strawberried and 2 pots on the patio with tomatoes. Would love to do more veggies...but that's about all I can manage these days.

Anyway...got off topic pretty fast there. Good luck with the therapy and keep us posted on how you are doing. Learning how to walk and move correctly again can be difficult...but it's worth it. Take care and hugs!

Zinnia,

Great news, Tky for sharing it and the lovely bouquet. Please try for Aqua PT, too. No shoes and the buoyancy of the water more quickly assists in rehabbing weakened muscles than "on land" PT. On Thursday, in addition to an hour of walking and stationary exercises, I did 50 squats in the pool. I still cannot walk up and down stairs normally, but I am getting there.

Thank you all for your encouragement and well wishes. I so appreciate all of you.
Good to hear of your progress BioBased. I will ask about water therapy. I have many questions to ask next time I see him. I had better start writing them down hahaha.
peace
zinnia

Yes of all things, water therapy has to hurt the least! It is also soothing when it's in warm water (well depending on what stage you're in, I guess).

My orthopedist at the time was angry at my PT for wrecking my legs. I had to start doing my own isometric exercises at home (with a locked knee, special exercises not to hurt the knee). They were non-invasive and easy enough to do by myself.

It was also better to spread the exercises out (because I was so late stage) over the entire day, instead of having half an hour of hard PT and then nothing.

Exercise is important, unfortunately it did almost nothing for me in the long run. Yes the muscle built back up to an extent, but the lack of mobility stayed. I guess I was just too far gone already.

I think I am the biggest example of "just" PT doing zero for the advancement of CRPS. You need actual medical treatment alongside with it. Both of them hand in hand should be a miracle team, if the CRPS is caught early - but it's always a good thing to try! Try your damned hardest!!!

I was dutifully going to PT before I was diagnosed. Even though I felt better immediately after it, my condition progressively worsened, until I could no longer walk. I had hip bursitis, foot drop, curling toes, color change, allodynia, damaged tendons, floppy ligaments, swelling and I was agonizingly cold-my feet were painful burning blocks of ice.

Being trapped on an aero bed in my den (plus living with agonizing stomach problems March 2015 )and at the same time learning I had a fairly large brain aneurysm was a game changer for me. I hope you won't be upset, but I thought since nobody was going to help me there was not much point in going on, so I refused to have brain surgery.

The CRPS diagnosis in May 2015 did not give me much hope since every doctor I saw offered me no effective treatment or much in the way of pain control. I started being dragged back to PT in a wheelchair with little improvement, that is until I started taking LDN, then things began to change for the better, but the biggest leap occurred when I was able to exercise in my friend's pool.

Based on my positive outcome I would encourage everyone with CRPS to try LDN, to get it whatever way possible and to go to Aqua Therapy. I feel grateful and blessed that the information I found on the internet enabled me to be walking on the 2 year anniversary of my accident.

The point of this post is that I agree with CRSPbe that you need medical treatment along with PT. For me that treatment was LDN.

I have been having medical treatment, all along, PCP podiatrist as it is RSD in my left foot and neurologist. Been on Gabapentin for over a year, ready to get off of that, gained a lot of weight, which only makes things worse, and brain fog all that leaning to the right made my scoliosis worse, so that is why I am going to PT to straighten up and fly right again hahaha.

I did ask about LDN they would not give it to me. Pharmacy said they could probably do it for me if I got the prescription. Did not get a good reaction from PCP. I will not go back to that PCP she was filling in for one that was on vacation. She did do the exrays and bone density test for my back and found the osteoporosis, and sent me to PT at my request, so got some good out of her hahaha.

I am so happy to hear of your progress BioBased. Wish I have a friend with a pool. So glad that you do.
:-)
peace
zinnia

Zinnia,

I was lucky to get in my friend's pool last summer. I was urged by my PT instructor to do this, believe me I never would have, if she did not insist I try. It was a major turning point for me, because I realized that I had nearly full mobility in the water. It gave me hope.

Aqua PT in a salt water pool is even better, because of the buoyancy. I have been going to Aqua PT 2x a week since May and I am so much better that it seems like a miracle.

Today I worked out in my friend's pool for the first time in a year, another resident who was there remembered me from last year. He stopped by to tell me that he could not believe the remarkable difference between this year and last year.

I gave up gabapentin, due to brain fog.

No one would give me LDN.