Hi everyone, this is my first post.
I found the site when completing a survey for people with neurological conditions organised by MS Australia.
It asked what peer support I had which I did not have, so I thought I better look for one. I'm glad I did.
Prior to that I was investigating pain management which I guess most if not all people with an AVM have to deal with to some degree or other.
Since I have lived with my tangle of veins for almost 20 years I felt that I might be able to point Bonny in the right direction.
If, however, you already know the information I apologise but others may also find the links useful.
It is basically Australian but applicable all the same.
http://www.chronicpainaustralia.org/
RN Australia Talks - 17 February 2010 - Chronic Pain
All In The Mind - 30 September 2006 - It hurts: the elusive nature of pain
Listen online or download the audio
also
http://www.painsupport.org and there is a link to Pain Management clinics in your state.
It has useful information and a forum like this one.
I thoroughly recommend the book 'Manage Your Pain' by Dr. Michael Nicholas available from your local library, ABC shops or online from Amazon new or used from $2.96. Plenty of good info in there to start.
Also there is the ADAPT Pain Management program at the Royal North Shore Hospital Sydney upon which the 'Manage Your Pain Book' is based.
It is a two or three week course and helps you manage and get on with your life without the need for medications wherever possible.
Interstate attendees can stay nearby in inexpensive accommodation provided by the Cancer Council.
Someone else referred to Gabapentin (and its successor Lyrica) which did very little for me and just piled on the side effects of the other standard medications for the condition such as Baclofen, Clonazapam, Tizanidine as muscle relaxants and various combinations of anti-depressants for pain management.
I would suggest anyone try to minimise pain killers where possible or try them and get off them as soon as it is obvious that the benefits are outweighed by the inevitable side effects - usually cognitive impairment.
Bonny if you have got this far with the study don't give it away.
It will give you a reason to get up in the morning and there is nothing worse than regrets when looking back and saying I wish I had continued.
Pace yourself and do as much as you comfortably can each day.
If it takes a little longer so what!
Very important, as far as any of my medical suggestions are concerned -speak to a medical practicioner you really trust and can relate to.
I hope that helps.
Good Luck