Hi Alynna,

Really sorry to hear about your mothers struggle with RSD!

I, like yourself, am a teenager however it is me with RSD. I'm approaching 16 years of age and have had it since I was 12 years old. It started in my left leg and has since spread to both arms and possibly my back though this hasn't been confirmed yet as I have other underlying back issues going on.

Like you and your mother, I worry about spreads. I think more so since I have had to deal with them myself. ALL of my spreads have occured from an injury so I try and avoid them as much as possible ... though as I am sure you are aware from your mother, with RSD that is often impossible!

One of the things my doctors told me to do when I have a spread or a flare is to keep moving my limbs as much as possible. It hurts a h*ll of a lot but in the long run does help. RSD is a 'Use it or lose it' syndrome. Tell your mum if she fears a spread coming on to keep moving as much as possible ... start exercising gradually and then building the exercises up when she feels able to.

I spent 13 months in a wheelchair after a nerve block caused me to lose all of my co-ordination. I had to go through 3 weeks of intense Physical Therapy. It was really, really hard and a LOT of hard work but I am now able to walk short distances and am really thankful for that! PT helps a lot of people with RSD so that might be something to look into for your mother.

Stress is a big thing too. I find that the more stressed I am, the more pain I am in and the more prone to flare up's I am. It's extremely hard not to be stressed when your dealing with something like this but tell your mother to limit her stress levels as much as possible. I have been going through a really bad depressive stage lately but speaking to a Psychologist has helped so that might be something to look into also.

Another thing I find with RSD is that 'For every day I play, I must set aside a day to pay'. That basically means that if I do something fun one day (go to the movies with friends etc), I have to spend a day paying for it the next day. I usually find if I do something fun, I will have a flare afterwards and can spend several days in bed! It's hard not to push yourself but with this disease, you really need to know your limits and not overdo things ... the same as not underdoing things!

I think it's really good that you show such an interest in your mums illness. I wish more people were like you, I have lost most of my friends because of RSD and not many family members understand what I am going through except my mother. If you'd ever like to talk to her send me a PM. She comes on often so i'm sure she'd be more than happy to talk to you from a carers aspect.

Take care and send your mum my love.

Alison