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Help & Links |
Below you will find a wealth of suggestions and sites relating to CRPS, I hope you find them helpful.
Some of the most FAQ I receive are about my Spinal Cord Stimulator and my Ketamine infusions -all this information is documented in detail in My Story. My Blog entries chart my current up and downs, my regular Ketamine infusions and the lived pain experience in general. You can now sign up to receive new BLOG post notifications by subscribing to my newsletter which you will find in my BLOG.
It's Your Life
Don't let CRPS ruin your life, you do have a choice and life despite CRPS is still worth hanging onto tightly, sometimes you need help to do this. Take ownership of your pain, join the forum on the my chronic pain team website and/or on the Chronic Pain Australia site.
New Support Website
There is a new website launched in 2016 that connects people with chronic pain worldwide and offers a forum and support network. You can search for others with CRPS and it will even pin point anyone living in your vicinity.
https://www.mychronicpainteam.com/
Doctors
Part of taking ownership of your CRPS is being proactive in finding the right help. Many patients suffer added stress through the lack of a diagnosis and appropriate treatments. It is worth searching for a GP or pain management specialist experienced in treating CRPS and neuropathic pain. Research, ask questions before you make an appointment and if you feel you are not being offered the appropriate support and treatment options keep searching. The same advice applies to psychologists, find one who is knowledgeable about CRPS or who is willing to research some of the basic facts about it. If you do not feel like they are helping and you leave the session feeling frustrated and misunderstood, keep looking.
Some Site Suggestions:
http://www.chronicpainaustralia.org.au/ - Chronic Pain Australia. Contains a forum, information & resources for chronic pain sufferers and carers . A site dedicated to reducing the social and other barriers to living with chronic pain.
https://www.mychronicpainteam.com/ new site -2016 that connects people with chronic pain worldwide and offers a forum and support network.
http://rsds.org/ - An international website about CRPS (RSD) offering support, education and hope.
CRPS Australia Network on Facebook
www.betterhealth,vic.gov.au -More information on CRPS.
www.rsdcanada.org - A Canadian website.
www.painaustralia.org.au - Information and help for chronic pain sufferers and carers.. An organisation working to prevent and manage chronic pain; information on the National Pain Strategy.
www.painmanagement.org.au - AMPA. information and practical support for people living with persistent (chronic) pain and their families.
http://www.colortheworldorange.com/#ctwo colour the world orange campaign
www.bodyinmind.org-An up to date Australian site specifically about pain.
www.crpsconsortium.org.
The International Research Consortium for Complex (IRC) is composed of dedicated researchers from over 50 labs around the world and promotes research directed to relieving the pain, disability, and cure of CRPS/RSD patients. If you have any questions about the IRC please visit the website www.crpsconsortium.org or contact Amy Kirsling, Executive Director at akirsling@crpsconsortium.org.
Other Sites of Interest:
www.rosemaryeagle.com - My art site
http://www.pudendalnerve.com.au -Soula is an artist living with a chronic pain condition
Book Suggestions:
The Pain Book - Finding Hope When It Hurts By Phillip Siddall, Rebecca McCabe, Robin Murray (As told to)
I strongly recommend this book.
'it is informative, practical and clear, it will have a transforming effect on those who live with chronic pain.' Prf Bruce Robinson.
Explain Pain - By David Butler & Lorimer Moseley, available from your local library or buy online . This book is more about the physiology and neuroscience of pain and is quite a heavy read but if you want to understand as much as you can about chronic pain it is worth borrowing from the library before you buy as it is not cheap!
Photo courtesy of Clarita -http://www.morguefile.com
Some of the most FAQ I receive are about my Spinal Cord Stimulator and my Ketamine infusions -all this information is documented in detail in My Story. My Blog entries chart my current up and downs, my regular Ketamine infusions and the lived pain experience in general. You can now sign up to receive new BLOG post notifications by subscribing to my newsletter which you will find in my BLOG.
It's Your Life
Don't let CRPS ruin your life, you do have a choice and life despite CRPS is still worth hanging onto tightly, sometimes you need help to do this. Take ownership of your pain, join the forum on the my chronic pain team website and/or on the Chronic Pain Australia site.
New Support Website
There is a new website launched in 2016 that connects people with chronic pain worldwide and offers a forum and support network. You can search for others with CRPS and it will even pin point anyone living in your vicinity.
https://www.mychronicpainteam.com/
Doctors
Part of taking ownership of your CRPS is being proactive in finding the right help. Many patients suffer added stress through the lack of a diagnosis and appropriate treatments. It is worth searching for a GP or pain management specialist experienced in treating CRPS and neuropathic pain. Research, ask questions before you make an appointment and if you feel you are not being offered the appropriate support and treatment options keep searching. The same advice applies to psychologists, find one who is knowledgeable about CRPS or who is willing to research some of the basic facts about it. If you do not feel like they are helping and you leave the session feeling frustrated and misunderstood, keep looking.
Some Site Suggestions:
http://www.chronicpainaustralia.org.au/ - Chronic Pain Australia. Contains a forum, information & resources for chronic pain sufferers and carers . A site dedicated to reducing the social and other barriers to living with chronic pain.
https://www.mychronicpainteam.com/ new site -2016 that connects people with chronic pain worldwide and offers a forum and support network.
http://rsds.org/ - An international website about CRPS (RSD) offering support, education and hope.
CRPS Australia Network on Facebook
www.betterhealth,vic.gov.au -More information on CRPS.
www.rsdcanada.org - A Canadian website.
www.painaustralia.org.au - Information and help for chronic pain sufferers and carers.. An organisation working to prevent and manage chronic pain; information on the National Pain Strategy.
www.painmanagement.org.au - AMPA. information and practical support for people living with persistent (chronic) pain and their families.
http://www.colortheworldorange.com/#ctwo colour the world orange campaign
www.bodyinmind.org-An up to date Australian site specifically about pain.
www.crpsconsortium.org.
The International Research Consortium for Complex (IRC) is composed of dedicated researchers from over 50 labs around the world and promotes research directed to relieving the pain, disability, and cure of CRPS/RSD patients. If you have any questions about the IRC please visit the website www.crpsconsortium.org or contact Amy Kirsling, Executive Director at akirsling@crpsconsortium.org.
Other Sites of Interest:
www.rosemaryeagle.com - My art site
http://www.pudendalnerve.com.au -Soula is an artist living with a chronic pain condition
Book Suggestions:
The Pain Book - Finding Hope When It Hurts By Phillip Siddall, Rebecca McCabe, Robin Murray (As told to)
I strongly recommend this book.
'it is informative, practical and clear, it will have a transforming effect on those who live with chronic pain.' Prf Bruce Robinson.
Explain Pain - By David Butler & Lorimer Moseley, available from your local library or buy online . This book is more about the physiology and neuroscience of pain and is quite a heavy read but if you want to understand as much as you can about chronic pain it is worth borrowing from the library before you buy as it is not cheap!
Photo courtesy of Clarita -http://www.morguefile.com
