Hi, first time using this forum and I'm looking forward to asking lots of questions and helping others if I can

I'm having trouble trying to walk again after coming out of hospital 4 months ago and wondered if anybody could give me some help please?

Here's my story:

I collapsed in my bathroom in February and was knocked out for 8 hours with my legs in a bent position. This meant that when my flatmate found me and called the 999, I already had a severe case of Compartment Syndrome. The surgeons had to cut into both of my legs to relieve the pressure and stop the dead muscle poisoning my kidneys. They then put me in a cast and about a month later I was diagnosed with CRPS. My surgeon said I should be able to walk again (before he knew I had CRPS) and everybody else says it'll just take time. I'm sick of being in a wheelchair though and everytime I try to use crutches the pressure on my feet is unbearable and I cannot for the life of me get my balance. Would any of the medication I'm on affect this?

I'm on 600mg pregabalin, 40mg OxyContin and 30mg oxynorm per day. I don't understand why I'm still not on my feet

First off...I am very very sorry to hear that you have CRPS and that you are currently confined to a wheelchair. Last year when my CRPS got worse and spread, I was in a wheelchair for a good six months of so. Crutches...well...they suck. I couldn't use them once my CRPS spread to my arms but I can tell you that when I was using them I hated them and other than keeping me from full weigth bearing they did nothing to help me...and definitely nothing long term.

BUT...I am now not only walking but back to work where I am on my feet for 9+ hours a day 5 days a week. I have to use a walker because my balance is still awful and the walker also helps me to walk for longer because it takes longer for the pain to get up to unbearable levels when I use the walker vs trying to walk without it.

There are two thing that I would recommend. The first is to work with your doctors to find a treatment (whether medications, TENS, ultrasound, hot baths with epsom salts, blocks, or a combination of things) to get your pain levels down. At least down enough that you can tolerate physical therapy.

The second thing is to do the physical therapy. If you cannot walk at all now I would suggest seeing if you can get an at home physical therapist who will come to your home. This was SO key to me getting back on my feet. It was slow but progress was consistent. It took major dedication on my part though to push through the pain and do my exercises EVERY SINGLE DAY. You start very small with sitting down exercises and standing at the sink for 5 seconds at a time (holding on for dear life...and always with supervision). Gradually you increase the difficulty and the amount of time you spend doing each thing. The key, I think, is to push yourself so that you make steady consistent progress but not so much that you have a set back.

Getting a good physical therapist and making sure that they understand CRPS is very important. CRPS isn't like many other conditions or acute injuries that many physical therapists treat and it needs to be handled differently. If you only have a limited number of visits then discuss spreading out sessions to once a week and once every 2 weeks once you can show that you WILL do the work on your own and continue to make progress (because you will, right?). This was big for me because I was only allowed 20 visits or something and I needed more time to make the progress I needed. So by stretching them out I got 6 months of physical therapy instead of 10 weeks...and I needed all of it to get myself to a point where I could take it from there.

But even when physical therapy was done...I didn't stop doing the physical therapy. I began to focus on my endurance and getting a more normal pace. I translated many of the exercises into real world activities and kept pushing (still pushing actually).

Things that helped me in terms of treatments (and everyone is different so not saying any of this will help you) were portable TENS unit that I could wear when I did the physical therapy, ultrasound, heat patches, hot baths with epsom salts, lidoderm patches, clonidine patches (helped with my dizziness and blurry vision that I was having), and then later tDCS (didn't start this until after I was done with physical therapy but have seen great improvements since). And the walker...that's been HUGE. I have a rolling walker with 4 wheels and a seat. I feel safe using it despite the balance issues and it allows me to carry things safely and always have a seat when I need it. I also have a much more normal gait than I ever did with crutches or a cane (and therefore am not messing up other parts of my body).

Sorry that was all sort of long. I can't give much advice about meds because I am not taking any other than the lidoderm patches and clonidine patches. My pain would probably be less if I did but bad experiences with meds and a fear of the long term affects of them on me (since I am only 28). Many people get great relief with the right combo of meds though so hopefully others can make some suggestions. When I did take meds and did get relief the combo I was taking was Lyrica, Tramadol, Meloxicam, and Doxepin. Narcotics never made even a slight dent in my pain.

Stay hopeful...you will walk again...it's just going to take getting to the right doctors and physical therapists and holding up your end. You can do it. Sorry this was so long but if you have any questions about any of my ramblings just let me know. Good luck and take care.

Welcome to the group. Sorry to hear of your difficulties. I have to agree with Catra. Physical therapy is one of the first steps, working closely with your dr.'s and your medication can be causing side effects. Definitley do not give up.

hello. I toss in my two cents. first Im sorry to here about your unfortunate turn of events that landed you here... If I may ask did you find out what caused the collapse to begin with because that could be an issue affecting present results. then. determination, and focus. your will is strength and it helps also with the pain. it sucks to say it as a lot of the times it feels impossible. We are here to support you and listen to you vent. We may not always know the answer but we know this beast intimately and we can share our stories with you and our experiences. I do believe you have it in you to walk again. you prove it by asking the question. I agree you should use PT. and aqua therapy I believe will be beneficial as salt water will support your weight a you get used to putting your feet under you again. remember this though. no miracle cure exists for this so it is time consuming and many times you will feel like you are losing, the only way to lose is to give up. speak with your doctors as candid as you can. hopefully you have doctors that will listen to you. Also make sure your family knows how you feel, and share your fears and your pain. it will help in regards to relations in your family. no confusion. and if they do not understand or you feel like you cannot describe it right. see if the would visit this site and follow what we share here. also keep in mind you have already pointed yourself in the right direction by coming here and becoming part of this grand family... best wishes. and many warm wishes your way.

My daughter's PT had her start walking on a hydro-treadmill (a treadmill in a tiny pool, basically). It was by no means easy, but it allowed her to begin using the muscles to walk again, but without having to put full weight on her leg. The water on her legs was very painful, and though she hated it, did serve to desensitize them.

The transition to walking without her crutches was extremely difficult and she by no means felt ready for it whent he PTs told her it was time, but she surprised herself and everyone else by getting off of them when she didn't think it was possible.

It seems that the main job of a PT in CRPS is to cheerily push people to do things that are agonizing and seem beyond their capabilities. I mention that so hopefully you will take heart when you don't think you can do more - you will probably end up surprising yourself at times too!

Good luck - I'm sorry you are dealing with this.

Lori

Thank you for making me feel so welcome! My family have been beyond supportive so I'm very lucky in that sense. I suppose I am not as focused as I could be, but progress has been so slow it gets me so down. My right leg seems to be okay, but my left leg (although I stretch it with a foot brace) does not seem to stretch enough to walk on. It's at such an angle that when I stand up I have to lean forward. Even when I try to stand straight and feel the muscle pull, it never seems to give. I also have foot drop on my left foot so all in all it's very frustrating. I've heard of various devices that can help with foot drop but with the CRPS I'm truly not even sure if I could wear it. I'm going to try Epsom salts tonight as you suggested. Nice to meet you painman

I'm doing 2 hours of physio a week with one hour at the hospital and the other with a private PT. At home I stretch my legs every night and try to walk with the crutches but don't normally last more than 5mins with the foot drop. What is a walker exactly? It sounds like I could use with one! I'm so happy you're back at work, what an inspiration!

Sounds like I need to ask my hospital PT for some HT and try to convince her that I'm ready for crutches (she doesn't think I am). She says the problems with stretching my legs are the real barrier. May I ask, how did your daughter get CRPS?

This is the walker that I purchased (this is the one for short people and it does come in other colors):

http://www.amazon.com/Nova-Zoom-Roll...2779588&sr=8-2

It's important that you discuss using one of these with a physical therapist/doctor before you try it because you need to be confident you can use the brakes and not go rolling away with it. I love that it has a seat because in the beginning I had to sit ALL the time...but always had a seat with me. Using an old fashioned walker and crutches really drained my energy and caused me to have an abnormal gait (and the crutches caused so much pain everywhere else). This walker also has a canvas basket under the seat which came in handy trying to carry things (almost impossible with crutches). I prefer the canvas basket because the metal ones need to be removed before folding it up (which I need to do to put it in my car).

This walker also has a way to lock the wheels so I would do some of my standing exercises right in front of the sofa (that way if I needed to fall back or it it was right there). It's amazing what a difference the walker made for me. Progress was still slow but I think went much better once I had it. You can start out putting very little weight on your left ankle (that's where mine started btw) but you still make normal walking motions and then gradually as you can tolerate it you can add more and more weight as you walk. But the key (for me) was the normal gait and walking patterns.

When did you first get this CRPS?? How many doctors did it take before one diagnosed it correctly??

Just one pain specialist about a month after I came out of surgery. Still trying to arrange my first nerve block though.. Everything has taken way too long I fear I've lost my chance of recovery,

I'm not computer savvy, still trying to understand how to post and retrieve what I've posted. I'm mainly email and a google search person, period.
My niece has the RSD, and I'm trying to understand it all. She's in so much pain, depressed, and I think of her as my daughter since I don't have children so it's heartbreaking to see her go thru this. She's 43 with a 13 yr old daughter. Trying to find out all medicines that people are taking to ease the pain, so I can relay this to my niece. Thank you for replying to my post!