I am just under the 2 yr. mark from when I injured myself and my whole crps type 1 disorder started. I am starting to experience my first big loss with this disease.

I am rapidly losing the ability to be able to walk for any distance without significant pain and spasms. (I'm on lots of medications for crps, spasms & pain.) My balance is also starting to go and I've had a few near falls. This is truly upsetting for me. I enjoy my walks and my hobbies that involve walking so I need to figure out what my next step is to try to hang onto these for as long as I can.

I don't feel that a walker will help because my legs hurt too much. And I don't feel like a wheelchair will help because my arms and upper back hurt & are weak. Crutches are out for the same reasons. I'm not equipped to have an electric wheelchair in my van- couldn't imagine having to get it in and out of the trunk.

I'm considering the type of walker with 4 wheels that one can sit on and just push oneself along with his/her feet. I don't know the name of this or if it's even intended for this use.

Any input/suggestions from anyone who has gone this route would be appreciated.

Hi, I agree losses are very difficult to deal with. I'm so sorry you are having such difficulty with your legs and walking. I really don't have any experience or knowledge with any type of assistance.
I was just wondering if it is at all possible for you to gain any sort of strength thru PT or possible warm water therapy? I realize that this may not be possible-just looking for an alternative. I know it must be devasting at the thought of losing your mobility and enjoyment of walking. I hope others here might know types of assistance. Keep posting and let us know how you are doing. loretta

Thank you Loretta. I've been doing PT including warm water therapy. Lots of meds and one series of Ketamine. I've been reading and it appears that much of what I'm experiencing is explained by dystonia. I've had trouble reaching for items, weakness in trying to lift what should be easy, and progressive weakness despite my efforts to remain active. But thank you for your supportive words.

Although I felt more than a little ridiculous trying it out, I recently borrowed my mom's extra walker to help me on a planned trip. I went to Washington DC with my 2 teenaged sons. I knew there would be A LOT of walking and standing around. I just can't do that for long periods. Mom'a walker was a godsend.....it literally saved our trip. I wanted to have a seat available where ever and whenever I needed one. Being able to leave my pocketbook, the camera bag, and our snacks and coats on the rollator was an unexpected bonus and really saved my neck.

The 4 wheeled versions are called rollators. Mom and I are BIG girls, so we got a bariatric rollator like this one http://www.overstock.com/Health-Beau...130203051332:s

Medicare covers the cost of a walker if you have a doctor's order.

Does sound like dystonia issues. I have been looking into the "rollator" myself, but holding out as long as I can-You know the dependency issues!!!

I have a rollator (4-wheeled walker with a seat) and it has given my life back. You cannot imagine what a difference it makes just having that little bit of support. So much less weight bearing on you legs (I have RSD in my left ankle and my whole upper body between waist and neck). I was at the point where I could not stand or walk at all and had to rely on others to push me around in a transport chair. That was AWFUL. It took a long time to get on my feet again but now with my walker I am a free bird. I sit when I need to, kneel on the walker either when I need to use my hands or just take the weight completely off my bad leg (wheels locked of course), or even sit and scoot as you described when I need to. It also helps me carry things (the bag under the seat is a real godsend).

I got mine on amazon.com and it cost about $100-$150...but it's a GOOD one with bigger wheels (better for uneven ground) and it's made for people my height.

When I started my physical therapy I had a "regular" walker with two wheels in the front and then you drag it. This was very difficult and took a lot of energy to use. The 4-wheeled walker is smooth and it allows you to walk with a normal gait...which for me was key to making sure I didn't make the rest of my body worse with an abnormal way of walking.

Life is different using the walker but it really has given me back the freedom. It takes a while to sort of "relearn" how to do things with the walker...but who cares HOW you do something so long as you CAN do it, right?

Another good thing about the walker is that if you go out of the house, people tend to give you more space. With RSD...this is a very good thing especially if you go out to places where there are lots of people. I can even go to the grocery store. I get one of those carrying baskets and put it on the seat of my walker. Once it's filled that's my limit...but it still is better than nothing and gives me a great sense of independence. Sort of sad that something like going to the grocery store gives me so much joy...but when you've spent a year sitting on the couch not able to move hardly at all...you take joy in the little wins.

I'm now back to working full time with the walker and it feels great. The pain is still bad...but mentally I've never been happier or healthier now that I have taken so much of my life back. The walker and the physical therapy are the two biggest pieces of that puzzle for me. It will take time to really get the hang of things, lots of practice around the house, but it is worth the effort.

Also wanted to mention that I am 29...27 when I started using the walker.

I forgot that you were that young Catra. Now I feel silly to say that I was embarrassed to use one at ae 47.

The thing is, now that I tried one.....and have it here at my disposal, I won't hesitate to use it again, if the occassion warrents it. any of you are dealing with lower extremity RSD. Mine is in my neck/upper back (TOS area) and goes down my L arm. For me, it's not that my legs don't work (most of the time, then there's another dx and another story).....it's that just standing, the weight of my L arm pulls on my neck and increases my pain. When I need to sit, I NEED to sit. I don't forsee needing to take the rollator to church....there are seats there. If I go to a mall to shop.....heck ya that thing is coming with me !

Reluctant,

I "get" not wanting to look or feel like a "broken" person. The thing is, we ARE broken....or at least parts of us are. Consider that a walker or rollator may be able to help you maintain a level of activity that you want to.....or possibly even increase it.

While on my vacation with my sons, they teased me about the rollator on the journey down to Wash DC. I went out without it the next day. TOTALLY overdid things and had to miss going to the National Zoo with them. The day after that "wasted a day in bed due to severe pain on my vacation" day, I tried out the rollator. It made life much easier being able to sit when I needed to and not having to carry all the bags. My kids (teen boys) made fun of me. The next day, it came to a decision.....I knew I couldn't do what we scheduled without it, so was I going to sit in the hotel room by myself or take the rollator so I could manage all the walking and touring. I took the rollator and got out and had fun.

I can relate. RSD has got me to the point that I am using a wheelchair. Sometimes when the pain is doable a quade cane.
This monster we're stuck with is quite hard to deal with for sure!!!!_

Welcome jcody, Glad you found the forum. How long have you had RSD? I've had this since '96 and now full body. Have found great comfort and support here. So much experience and sharing of coping skills, shared information etc. I'm sure you will find the same support. Take care, loretta

My best suggestion is to do or use any item that makes you most comfortable. I have had very limited mobility for 20 months crps in lower leg and foot and have to use a wheelchair for almost all activities outside of my house. I also had to learn to ask for and to accept help, sometimes from complete strangers. I had one of those lovely plain jane wheelchairs, but when I accepted that I will likely always have some dependency on tthe chair I purchased an ergonomic chair from Karma, love it, super comfortable, and oh yea it is bright red. Obviously I can't hide the fact I am in a wheelchair nor would I want to hide it, so now you can't miss me coming. Wishing you the best and I am sure you will find what works best for you.