I first developed RSD (reflex sympathetic dystrophy) as a preteen at age 13. Back then, no one knew how to treat it, only to diagnose. It was put in my medical file and never spoken of.
I have been living with this monster for almost 30 years. I was finally put on treatment a few years ago. Treatment can help with the pain and try to manage symptoms, but the disease itself keeps progressing. I’m in a chair and bedridden, and it affects every aspect of my life. My organs are affected, and there’s no prognosis for me. I’m being tube-fed due to gastroparesis. I have gone over medical records showing numerous doctors who put RSD in my file but never spoke of it.
I keep fighting and advocating for myself and others, hoping one day that there will be better treatment or even a cure. My neurologist told me I was lucky that at least I know what caused my RSD in the first place–a sports injury–when there are a lot of young girls who get RSD for no apparent reason.
I have a long list of associated conditions: RA, arthritis, asthma, dystonia, epilepsy, urinary incontinence needing a catheter, GERD, irritable bowel syndrome (IBS)… The list is longer than my medicine list. RSD affects the nerves in the body. It affects everything from the clothes I wear to the amount of sleep I’m able to get. I only can sleep a few hours at a time.
There is a treatment–ketamine–that has slowed the spread of RSD, but not all insurances will pay for this, as it is very expensive. My hope is to raise awareness so maybe one day they can find a treatment that all insurances will pay for to slow, if not stop, the spread of RSD.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.