Hi Ali

I got RSD when I was 16 and I was treated mainly by adult consultants. You really get a much better standard of care as a child - I promise you! I have been messed around so much by consultants who believed I was too young to be this ill with RSD.

You live in the UK don't you. Why don't you see if you could be referred to the Bath PMP? it has a long experience of working with young people with RSD. Also Bristol Childrens hospital has some experience, as does Cardiff and a couple of other hospitals. There is also a consultant up in Scotland (whose name I have currently forgotten) who is also considered a specialist in paediatric RSD, oh and Great Ormond street also has a rehab program for children with RSD which is often quite succesful. Could you ask your consultant or the physio to contact one of their physios to talk about your treatment??

Love

Frogga xxxxx

Alison

I use a walker. Since full bodies RSD I have real bad balances now. I cant stand alont. I have fallan done stairs and broke rite foot, fallan in strreat, outta bed wen I get up and stuff like that. Do not feal badd and let yo docta know that it is really real! Hang TOUGH!

Chin Up! Mark

A walker is only something that has helped me out somewhat with this problem (I would still fall occasionally, and I had to hang on for dear life), and muscle relaxants have helped me out the most (my balance problems were caused by severe tremors; I also deal with my legs giving out on me).

HTH!

Dear Ali and Allsion's mom,

I couldn't help but notice your post and wanted to say to hang in there and don't give up. I, too, experienced this where my left leg would either give out or move in a way that was unexpected. (My rsd began in the left). I never did get an answer as to what was causing that specifically. But it is real. It did get better over time. It puzzled my therapists and docs but they didn't doubt it. It saddens me to see that there are still medical people or physiotherapists that can doubt this.

I am aware of the reluctance by some to give wheelchair assistance too but the thing is that quality of life matters too. For me it was liberating to be able to use a motorized scooter for those times when an outing meant long distances of walking. (it meant i could actually GO out) Especially on the days when the bad leg was particularly weak. Shuffling around on one's bottom may work but it does take a lot of energy to do and doesn't work in a mall lol....half the battle with this rsd monster is how one is treated. IT's so counter-productive when a pt voices doubt. Encouragement is the way to go.

On a hopeful note, my own situation became better over time. My left leg gives out rarely now. I remember deliberately standing with mnore weight on the bad leg when I was in a situation that was "secure" for example, when standing and brushing teeeth when i knew i could hang on to the counter with one hand and if i did fall it would be onto a soft rug and not too hard lol. I had some thought i might strengthen my leg that way. Even did leg lifts while in bed to strengthen the muscles. (lifting the leg about 10 inches up in sets of 10 then up to 30 as you get better, with the ankle extended, then with the toes pointing up etc) you probably can get some exercises off the net for leg lifts....

I also had a relaxation visualization tape that I listened to every day. It helped with the tension in the body.

More importantly don't give up. Whatever mobility you do have keep working on that.

best of luck and stay strong.

carousel ( Ina)

I should have remembered that one, Frogga... lol! I still do go around on my bottom some. At times that is all you can do because of fear of falling down stairs, onto the floor and off of things. It helps, but please don't forget to weight bear at least a little bit!! That is very important!

I'm posting something I wrote about on my blog last month which might shed a light on the reason for balance problems. I personally have balance issues and walk into things all the time. I think it has to also do with spacial awareness.

"BBC News has a current report on two teams, from University College London, UK, and the Swiss Federal Institute of Technology in Lausanne, who have been able to induce out of body experiences using virtual reality technology. They believe there is a neurological explanation involving the brain circuits that process sight and touch.

Using a camera and goggles researchers were able to induce a feeling that the virtual body was their own body.

This is much the same as when I do mirror visual feedback. My brain interprets the single limb and it's mirror image as a whole body.

When the camera was switched off and the volunteers were asked to stand where they thought they were during the experiment, the volunteers stood where they perceived the virtual body to be.

With chronic pain such as CRPS/RSD it is known that there is an altered body schema and the neurotag is smudged. This basically means that the brain hasn't a clear focused image of the body and where it hurts. The pain spreads out just as if you rubbed a black dot and made it smudgy so pain, instead of being focused on one spot has spread out and is hard to explain. I wonder if the this sense of being where the virtual body was imaged as in this experiment, could help explain why many people with CRPS/RSD have problems with spacial awareness and bump into things.

"Dr Henrik Ehrsson found volunteers had a physiological response - increased skin sweating - when they felt their virtual self was being threatened - appearing to be hit with a hammer."

If you can induce an autonomic nervous system response such as sweating from a threat to the virtual body it helps me understand why my body is calmed by seeing my mirrored limb without threat or pain. This idea of seeing the whole body or the body as a whole clarifies for me the need, when doing mirror therapy to see the both sides of the body (left and right) as if viewing a whole body. This differs from thinking of just seeing the mirror image of a good side.

At present the Interfaces group in Manchester in the UK are doing research on using virtual reality technology to relieve chronic pain. They already have succeeded in reliving Phantom Limb pain and are now working on CRPS/RSD.

jeisea
http://www.crps-rsd-a-better-life.blogspot.com