Hello and Welcome back to the forum!! It's great to have you here again!!

I have filled the questionare in - I hope it is OK, if any changes need to be made, please let me know.

Questionnaire for RSD sufferer


1. How long have you had RSD? I have been suffering from RSD since the 20th March 2007 so about 20 months now.

2. What was the initial cause? The initial cause was an ankle sprain. I fell down some stairs and sprained my left ankle.


3. What treatments/medications have you tried? How effective have they been? What medications haven't I tried??!! So far I have been on Tramadol, Lyrica, Baclofen, Diazepam, Kenadrin, Morphine, Gabapentin, Amitriptyline, Paracetamol, Ibuprofen and many more!! Non of those medications worked and some made me worse. I am now on Ketamine and whilst it is scary knowing that I am on such a strong drug, it does take my pain down from an 8 and a half out of 10 on the pain scale to about a 5 and a half.

4. What are your symptoms? My Pain Management Doctor said that I was the only case of RSD that he had seen that was text-book, meaning that I have nearly all of the symptoms of RSD. The main symptoms I have are the burning pain, allodynia (hypersenstivity to touch), muscle spasms, hair and nail changes, swelling, colour and temperature changes, lesions etc.

5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.) I haven't tried any alternative medicine yet has my PM said it probably wouldn't work in my case but we have looked into HBOT.


6. What makes it worse/better?
Grrr, the only thing that makes my pain somewhat better is the Ketamine.

The things that make my pain worse are:
Change in temperatures
Anyone touching my leg
Simple things like wearing shoes and socks
Needles (if anyone puts a needle into one of my RSD limbs, I have severe complications)
Stress and so much more!!

7.How does RSD affect your daily and social life? So much of my life has changed since developing RSD. I used to be a really independant teenager but I now have to rely on my mum to do almost everything for me. I have lost most of my friends because they just don't understand and have had to start at a new school center to try and make things easier. I am now unable to do most of the things I used to do such has have fun at the amusement park etc.

8. Are you experiencing any emotional/psychological effects? If so please explain. Yes!! I think RSD makes everyone emotional. The main emotional factor in my life is caused by friends and family not understanding what RSD is. They seem to think that RSD doesn't exist and would rather pretend that it wasn't happening, rather than face the truth.

9. Does RSD affect your ability to work? I don't work but do go to School (I am in 9th grade) and RSD certainly does affect my ability to go to school and learn. I have only been to school 24 full days since March 2007. If I can manage to go to school, I often find that I have trouble concentrating and/or remembering things which is very frustrating.

10. Have you been told by others its all in your head? If so by who? Before I was initially diagnosed with RSD, I had an Orthopaedic Doctor tell me that all of my problems were psychiactric even though I had many visible symptoms. That caused a lot of problems in our family has my mum didn't know what to believe. It was only when I was diagnosed with RSD, that my mum started realising just exactly what it was and how bad it was. I still have family members to this day telling me that my problems are psychiatric or that I just need to "Grin and bear it and get on with life". It makes me so angry and frustrated.

11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc. We live in the UK (England) so we have the NHS system. Many doctors aren't really willing to prescribe medications although I haven't had too many problems has my doctor knows that the pain and symptoms are real. The only treatment I have been denied is Botox but that was for my own good has my PM felt it could cause more harm than good. The main problem we have over here is when I am in a flare and have to go to A&E (ER) for treatment, the doctors there don't know anything about RSD so aren't willing to try and treat it.


12. What tests were run to find diagnosis? The tests that were run to find the diagnosis were, x-rays (I must have had about an hundred of those!!), MRI scan, Blood Tests and an ultrasound. I didn't have that many tests compared to some people with RSD but that was because my PM Doctor suspected RSD and just did the tests to rule out everything else.


Name: Alison
Age: 13
Location: England, UK