Not sure if i'm too late here Andrea but thought i'd fill in your survey just in case it might help with your speech !


1. How long did it take to get a dx? how many docs?

It took me 4 months to get diagnosed which I guess is fairly lucky compared to how long most people have to wait. I was lucky to find an Orthopaedic Surgeon who knew what RSD was and recognised it however I saw about 30 different doctors before and during diagnosis and went to 4 different hospitals.

2. have you ever been denied treatment?

Because I am under 17, the UK's NHS (National Health Service) often denies treatment due to my age however I am lucky to now have a doctor who is supportive and fights really hard to get me any medications he thinks may help.

3. Been told its in your head/making it up... etc? by family, friends or doctors?

Oh yeah. Most of my family except my mum think that I am faking things which hurts soo bad! Even my own dad has accused me of making things up and has only been to the hospital twice in the last 3 years I have had RSD. I've lost friends because of my illness and even had to move schools and have home tuition because of it.

4. Been called a drug seeker/addict?

Not neccasarily however people have thought I was making things up (see above)

5. Not been believed at the ER?
-left the ER in more pain then when you arrived?

I haven't really been to the ER that many times since I have being diagnosed as my Pain Management Doctor usually gets me an emergency appt when things get really bad however before diagnosis I was told that there was obviously a problem but that it wasn't as bad as I thought and that I just had to learn to deal with it.


6. Felt you were alone at least once since getting the dx?

Oh yeah. Most of my friends and family have left me so it's really frustrating. I've been depressed lots of times because of it. I just wish people could understand half of what I and others with RSD go through then they'd be more understanding.