The Australian RSD/CRPS Support Group
"Fighting Pain Together"


We would love to hear from you with your comment, questions or experiences.

Thank you to everyone who has responded, my apologies for not answering you sooner, but as I am the only one running this site, and i too live with RSD/CRPS - well, you know how it is.
Thank you for contacting us. We appreciate all feedback and comments, and will get back to you as soon as possible
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Some of the comments we have received via email.

Hi Tracy, just found your site via a Pain Australia email and feel like I have had my prayers answered!! I knew I wasnt crazy and that this pain Ive been in constantly since March this year is not in my mind!!! Im due to have a carpel tunnel operation in 3 weeks time but if this is C/T then others I know who have it, must have a mild version - I have so far had 16 operations and Im no'whoose' with pain, but this is the most excrutiating pain I have ever experienced. I have had Bone Cancer in my left arm and now have lost use of this arm and my right arm has been over-compenating the left arm and now my right arm is numb, tingly, cant move and such severe pain. Im living on drugs but with no relief, feel like Im going crazy!! Can you please advise me the names of docs who can help here in Adelaide or where do I go for help? My Specialist just wants to operate for c/p but I KNOW ITS MORE THAN THIS....especially now after finding your site. I cant stop crying, yes - where are my 'so called friends'?? - and why cant I get the help I need. God bless you my Friend for finding your way into my computer tonight - I feel at least I have some hope now of answers. I would be so grateful Tracy if you could contact me when you can. My thanks Cathy Carter

Cahy, I am so sorry to read you are going through the same dramas that many of us have been through.  I have already sent you a name of a doctr in Adelaide who is very highly thought of in treating RSD/CRPS, and I hope he can help you. Please remember you are not alone with this anymore - you have us.  Have a look at our Facebook page Reflex Sympathetic Dystrophy - RSD to get in touch with others living with the same problems.  Always here for you Cathy.  Tracy P

Great to finally be in touch with others living with the pain my darling husband endures every minute of every day.
Would love to share experiences and ask questions as new things are happening all the time. One major thing at the moment is massive cramps in the foot or calf of the affected area after an operation on his ligaments in his right foot/ankle. Clueless people tell him to pull his toes back hard to ease the pain. You may as well stab his toes and foot with a blade.

I too suffer with cramps and spasms, as many with RSD/CRPS do.  I have found that trying to move around helps, if this is possible for your husband, but if not ad if they last for a long time the Valium is quite helpful.


Hi.
After what i would of called a shining on my shin at work. I devoloped a severe infection to the area, which in turn took awhile to get on top of. Finally i too was diagnosed with R.S.D. After enduring many horrific side effects to medications prescribed i am on my last one before the doctors ge t more invasive. I have been going through this for over six moths now, and feel a prisoner in my own home as i am not able to drive my car or go to work or anywhere comfortably without suffering the consequence later. I have been advised by my specialist that acupunture will worsen my R.S.D.
Does any one have any advise on what may help?

Hi Marcus
some people have found relief with acupuncture while others have found it made little or no difference. You are still in the management stage at 6 months, although it probably doesn't feel like it.  Has anyone suggested a nerve block or epidural to help give the pain a break - sometimes if these work the pain will come back quite subdued or you may even go into remission. Are you under the care of a Pain Management Team or a Pain Specialist?  Or is it just your GP helping you?  Also you mentioned medication but didn't say what, have you explored the patches available and the slow release medications? I would need to know more details before advising further.  Please feel free to get back to us.  Tracy P


My Daughter Alice who was diagnosed at 8 years of age with RSD and she is now 14. She has good days and bad but we have not had a good 6 months. I am glad there are now other people speaking out that its not good enough so few doctors know about the Condition in Australia. We are now finding Doctors and Physo's who want to help.
Hi Mark
so sorry to hear about your daughter and you are right the lack of understanding and knowledge just isn't good enough.  You mentioned you were looking for doctors, etc with an understanding of RSD/CRPS.  While we don't publish the lists we do have a few doctors in each state, so if you let me know which state you are, in Australia, I might be able to point you in the right direction.
Your friend in RSD/CRPS
Tracy P

Tracy

We Live on the Southside of Brisbane and we do have some good support at The Royal Children’s Hospital and see the Pain Busters {Queensland Paediatric Pain Centre} Dr Cooke who I understand also works out of one of the private hospitals. We also travel to a  Physiotherapist at Elanora on the Gold Coast who specialises in RSD cases.

Only a few weeks ago we had the  misfortune of her being taken to another hospital and the head of the paediatrics told her there was nothing wrong with her and it was all in her head.

We discharged ourselves and returned to our own doctor. I was amazed that none of the nursing staff or the Doctors knew what RSD was, what is wrong with these people. It’s not hard to look it up on Google.   

My concern is that the Kids Hospital won’t accept her as she gets older and until someone makes these doctors and nurses look and learn to help people with RSD everyone’s life is just so much harder as you know.

Just last week her school asked me to come and talk to her teachers about her RSD so they know how to help her and they said to me that they had no idea such a condition existed.

I see her dealing with the pain and getting on with life but I think it hurts her more when people tell her it all in her head and nothing wrong.

As a father I will never stop trying to help her and hopefully everyone else with RSD.

Regards

Mark

Mark it still amazes me, after dealing with this for over 20 years, the little amount of understanding that is out there in the medical community of RSD/CRPS.  And the damage that can be done by people continually telling a person that it is all in their head  is tremendous.  I can still remember, after nearly 20 years, a doctor telling me, when I asked if he believed me, telling me that he believed that I believed i was in pain.  In a roundabout fashion he was saying it was in my head, he just didn't have the guts to really admit he didn't know what the problem really was. The best thing you can do for your daughter is to let her know, as often as you can, that you believe in her, that you love her, and that you are on her side. Also, being in touch with other survivors, no matter what their age, is also a good thing.  This is support for you and your daughter.  We believe you guys, we know you are not making it up, why on earth would you, and we will do whatever we can to help you.

Your friend in RSD/CRPS

Tracy P