But joy soon turned to despair when I realised that although I had a name for my condition, I still didn’t have effective treatment, and my life would never be the same. During my search for a diagnosis I had been told I had everything from cartilage problems, a knee-cap that had “slipped its rails”, lupus, psoriatic arthritis and that good old stand-by – “it’s nothing physical dear.”!! Meaning I was making it up!!! I was in constant pain, I had a knee that was freezing cold, very blotchy, “puffy”, and they had the nerve to say it looked normal, it was even suggested that I needed a sex life to ease my pain and problems.
Anyway, once I had a name I wanted to know more. I was told it was rare, and that I was possibly one of 4-6 sufferers in Australia. Well, I did quite a bit of research and couldn’t find anything based in Australia, so I looked overseas. This was when I found out that in Canada, America and The Netherlands, they not only had Support Groups but research as well! Then came the most staggering fact of all – there were 6 million Americans diagnosed with RSD/CRPS! So there was no way I was one of 4-6 in Australia. I collected more information, put a couple of notices in a State based newspaper, and a National magazine. Bingo, I had over 200 replies. The Australian RSD/CRPS Support Group – Fighting Pain Together was born!
We had a Membership of over 200, women and men, aged from early teens to over 70. They had their RSD/CRPS in various areas of the body, including arms, hands legs, feet, torso, face, scalp, and combinations thereof. Some had “mild” RSD/CRPS, while others had “extreme”. As well as those who joined the Support Group, over the years there were literally hundreds of people who contacted us. Sadly because of my pain and the depression that eventually overtook me when the pain medications stopped working I wasn’t able to continue on with the Support Group – however I wanted to be able to share my experience and information with others, so I produced a booklet that I sent out free of charge.It just seemed such a waste for me to 'sit' on the information when there were so many in need of help and support.
Well, a few years have now passed and I am able to cope better. And at the same time the number of enquiries I am getting each week is growing - there is obviously a need for a Support Group. So once again
The Australian RSD/CRPS Support Group is born.
This site is for general information only. I am not a Medical Professional but I do live with RSD/CRPS and so have a good understanding of the issues of this condition. Information here is to be used as a guide only and before trying any treatments you should consult with your GP and/or Specialist. The Australian RSD/CRPS Support Group accepts no responsibility for an individual’s choices after reading the following information.
PO Box 9
POINT PASS SA 5374
Email – [email protected]
Phone – 08 85 811 007
Mobile – 0401 794 884 (send text only with your number and I will call you back)
Reflex Sympathetic Dystrophy - RSD