My main aim of this Blog is to increase awareness of Complex Regional Pain Syndrome (CRPS).
For those after posts on CRPS or pain management specifically, on the right hand side you will find the Categories. These are designed for ease of navigation for those here for more information on CRPS or the latest pain management news.
A Little Information on my Greatest Mission…….
My greatest mission and dream is to increase awareness using offline measures and by firstly starting a Local CRPS Support Group. I wish to adventure into a non profit organisation (depending on other people helping out) that will eventually see it providing the resources the RSDSA offers to not only patients and health care professionals, but also anyone who has to deal with CRPS patients, lawyers, government agencies (for example:Centrelink), Insurance companies etc.
If you live in Australia and especially NSW, and would like to help this become a reality please email me or leave a comment with your email address. Carer’s of those with CRPS are extremely welcome, and especially any health care professionals who wish to back this up coming project are invited to jump aboard to help make a difference.
I am also fighting for the same resources here on our shores as they do in the United States and the United Kingdom.
For example: First of its kind pediatric rehabilitation center offers hope to chronic pain sufferers
So Join the Journey…………..
Hey Mel,
I have just spent the last few hours browsing through your blogg reading about your struggle with this gripping condition “crps” which i am reluctant to say i share. I`m a 26 yr old male that is living in sydney nsw. I have had this condition in my right hand and wrist for a little more than a year and a half now while i think it is speading up my arm to my sholder. My injury happened a work when a fallen box struck it and has been the burden of my life so far. I am how ever trained in web development (which i was studying when the accident happened at the local tafe), if it helps at all??
i to would like to spread the word about this condition that we both share. The road i am to walk is going to be a long and painful one im sure, as you more than anyone else in my position would know what is to come. Are there any tips you can surggest to help deal with some of the symptoms ? lol im in high hopes that somthing works soon in my treatment to releave the pain,
Cheers
Ash
Hi Ashley,
Thank you for dropping by, and I really hope reading my blog has helped you.
Wow a web designer – awesome. First thing is first though, I would need to get registration as a non profit and so then I can raise funds and take donations to get things like a website done and many other things.
I would love a website with a conference room for meetings. For example, those with a microphone could speak (only one at a time) and there also be a chat box and all can listen pending they have speakers LOL. I can’t remember the name of the chat client I have used on someone elses site……. Severe pain and reduction in cognitive function seem to go hand in hand LOL.
Then there is my forum and blog to integrate, so LOL yes you would come in handy!
Take care
Mel xx
Hi Mel and Ash.
Will write more when I stop crying…….lol, there thats better!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
2 years and its back with avengence!!!
Cheers
Annette
Hi Annette,
Thanks for dropping by! Hope to hear more from you.
Take Care
Mel xx
Hi Mel,
Sorry it has taken so long to get back to you. Have gone through a really hard time.
I now have full body and I don’t like it and it is really hard to accept.
Do you have a contact address that i can chat private, i
am taking one day at a time at the moment and i am letting people know slowly.
Thankyou
Annette
Hi Annette,
I am sorry to hear your CRPS has come back and is now fully body. I went through what your going through right now. Trying to get your head around it and accepting the new harsh reality.
I had lots (and still do) trouble with people totally not understanding how my ankle could cause so much pain and now the pain is everywhere!
A great book for you, your family and close people to read is called “Living with RSDS” it is written by a patient and a Specialist. It explains very complicated things in laymens terms so normal people can really understand what we are going through. You can get it through the RSDSA org website or you can order it online at Dymocks and Angus & Robertson Bookstores (they usually have to order it in from the US). I have a link to the RSDSA website on the About CRPS page.
I have your email, I will email you my email addy shortly.
Take care
Mel xx