Questionnaire for RSD sufferer

1.How long have you had RSD? 7 years in Jan (at age 16)
2.What was the initial cause? Possible fracture to my right wrist then spread full body within 6 months and is now internal also developed dystonia
3.What treatments/medications have you tried? How effective have they been?
Stellate ganglion blocks, lumbar blocks, bier blocks, various opiods, narcotics, anti-seizure, anti-depressants, duragesic patches, muscle relaxers, oral ketamine, physical therapy. Alternative therapies, osteopathy etc. Lumbar block made RSD spread from right leg to left. No relief from blocks. No relief from pemidronate infusions. Limited relief from meds apart from at huge doses.
4.What are your symptoms? Constant burning like you’re on fire inside your body, deep aching, stabbing, crushing, throbbing, exploding, stabbing pains… muscle spasms that get so bad in my body that its like they’re having seizures, contractures of all my joints e.g. ankles and feet are twisted, arms wrapped round body, hands in fists, neck twisted to side, trunk twisted to left, hips rotated inwards, right leg locked over left leg, jaw locked, hypersensitivity, color changes, easily bruise, temperature changes, swelling, loss of muscle severe insomnia- I can go like 4 days with out sleeping cause of the pain. Difficulty swallowing/ eating/ problems with sight/ dizziness/ fits/ blackouts/ high pulse/ breathing problems, speech problems, cognitive issues e.g. memory, migraines, intolerance to cold, loud noises, vibration etc exhaustion
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.)
Tried acupuncture, holistic med, biofeedback, laser light therapy, crystal therapy, osteopathy, massage, hot stone, EMG, TENS …. None of them worked
6.What makes it worse/better? Heat/wet heat, staying as still as physically possible, avoiding crowds, loud noises, bumps/ vibrations/ bright lights. the right medication helps a little. Mothers bullying and lots of desense helped me wear trousers/ long sleeves again. Touching, over using, stress, changes in the weather, anything from clothing to a breeze can increase the pain. tiredness.
7.How does RSD affect your daily and social life?
I am in a wheelchair, totally unable to do anything for myself from feed myself to go to the toilet on my own or dress myself or control my wheelchair. I have to be hoisted and rely on people for everything. I am at uni and though it's a HUGE Struggle with the pain I'm managing with the help of a 24 hour carer and VERY supportive friends and my boyfriend. Some days I just can'tbe moved or touched from pain and will scream if I am but I try and be as normal as possible. I try and go out when I'm well enough and try to have fun with my friends.. they are totally amazing and understand if we have to do stuff with me lying in bed instead of going out clubbing etc. It means I can't remember stuff and struggle to control my own life. I have fits and regular blackouts which means I always have to be with someone else beucase I have stopped breathing when fitting before.
8. Are you experiencing any emotional/psychological effects? If so please explain.
yes... just feeling a burden, sometimes feeling that I would be better off dead and just wishing I could escape from the pain... eugh.. it just sucks... and sometimes I just get so low
9.Does RSD affect your ability to work?
I'm 100% disabled but I am in my third year of a Psychology degree and I'm hoping to be able to get a job at the end of that as I want to work.
10.Have you been told by others its all in your head? If so by who?
My dad. I don't want to talk about it.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)
Apart from the ketamine coma no.
12 What tests were run to find diagnosis?
x-rays, mri, thermography, physical exam, nerve conducting test, sympathetic block