Hi there - its Alison here,
Ive recently being having problems with my balance. When I am walking my bad left leg shoots out in front of me without me having any control of it.
I have just been to see my Physiotherapist who basically said that the balance problems put on and that I am doing it to get out of walking. I would love to get back to school and see my friends and have a walk round a shopping centre, so why would I put myself through this?
My Physiotherapist tried me with a Gutter Frame but I was still falling back and the frame was also 4 inches too small for me!!!

I was just wondering whether this is a Side Affect of RSD or whether my Motor Nerves are affected with RSD as well- please get back with your opinion
Many thanks
Alison

hi Alison,
Iam having trouble also with my balance. I seem to be falling alot. My legs just seem to go out and down I go. I have to use crutches now and even with them I have a problem. I fell again the other day. There is no way i could go for a walk. Iam so bruised and hurting much more now from the falls.
I don't know if it has to do with RSD but I was never like this before.
Take care.

Sue K.

Hi Ali,

I also have balance problems. I don't have it to the extent that you do because to date I don't have active RSD in my legs. But, I haveto say, I just sortof fall over. It's like my brain (or inner ear) gets confused and stops providing balance for a second. Many times with many symptoms I'm not sure what's RSD and what's the medications.

I hope you're doing ok. I follow your and your mom's posts often. How did the flight go?

Please know that there are others out there that are thinking of you and pulling for some pain relief.

Hi Dealingwithtos,
Thanks for replying it looks like we are going to have to talk to my Consultant abbout my balance problem. We have not gone on holiday yet, we go mid September for 3 days.
I will write back shortly
Many thanks
Alison
-x-

please bump message up to top

I also have a balance problem but I do not fall. Its just when I start to walk sometimes I will start straight and immediately my body will tilt to one side and I will start walking sideways and I have to catch myself. I hate it

Many thanks for all your replies
I will pass on the information to my Physiotherapist if thats OK
My Children's Hospital is quite a small unit who have dealt with about 20 young people with RSD in the past 4 years
I think a lot of the reasons why they don't believe that I have lost my balance are that they simply haven't seen anyone with the same problem before !!!!
If I was an adult the actual number of people the Consultant treats would be greater (wider age range etc etc etc) and I'm sure that they would have come accross something similar
Unfortunately until I am 16 I have to stay under the treatment of the Children's Hospital so any evidence that I can give that a certain problem is "normal" in RSD will help get them to take me seriously and stop them trying to force me to use equipment I do not have confidence in or which still leaves me liable to a fall if I use it unaided
Thanks for everything again

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

Hi all
Alison mum here
The balance problems have not improved - in fact it is now becomming harder to walk Alison, especially when she is tired in the mornings
The gutter frame wasn't a sucess - it won't run easily accross a mixture of carpeted, tiled and wooded floors in the house and doesn't provide the independance that was intended by its use
We were at the hospital yesterday and it took two physios and an OT to get Alison to stand and bear weight through her good leg for the briefest of moments
I showed them how I lift, walk and handle her and keep her mobile but was told I shouldn't be doing that any more as it will cause problems for both of us
Their answers to mobility problems around the house - shuffle on her bottom !!! With an RSD leg banging the floor no less !! No-one suggested any other way around and told me we would have to wait years for an electric wheelchair (which coincidentally our Local Authority OT is trying to organise)
It is no wonder Alison is tense dealing with people who believe shuffling around the house on your bottom is dignified - and even if she did do this not one of them could explain how we would get her back up into a chair when she no longer has the strength to support her body weight through her good leg
If anyone has any ideas on mobility for people with RSD in both arma dn leg or for ways to release the tension I would be most grateful
Andrea