- CASE FILE
My sister and I have had crippling fatigue since we were 15. Now, 20 years later, we're almost bedbound. No treatments work. Few doctors.
ABOUT THIS CASE FILE
We were diagnosed with atypical narcolepsy in our teens and given ritalin and provigil. This never worked. We've never feel rested, always feel like we have the flu, and suffer with misophonia (painful reaction to everyday sounds). We have overall body pain, and absolutely no energy. In the last two years (we're both near 40) we've been increasingly unable to function normally. I no longer work, live with my parents, and they handle all of my daily needs and expenses. My sister is more functional, but increasingly is getting worse and less functional. In our twenties and early thirties we both lived exciting, unusual lives, despite our fatigue. She was in a rock band for 7 years, started her own business, and taught Kundalini yoga. I lived in Italy in an Arts monastery, putting on musical events in the city, created a dance troupe in San Francisco, and worked as an editor of the Bay Guardian newspaper in San Francisco. Gradually, however, we have lost more and more of our lives ---and now I am bedbound, rarely leaving the house, and have no social life. My fear is that my sister is on that same path. I have seen 27 doctors, including two CFS specialists, and have had minimal treatment....and no long term success with what I've tried. Seeing the 'best specialists' (there are only 25 in the country) can cost thousands since few of them take insurance. It is overwhelming to read all of the CFS/fatigue blogs, and see how everyone is trying to diagnose and treat themselves, because no one really knows how to help us, and we couldn't afford to see them if they did. We think specialists would be interested in our case since we are sisters, have the same symptoms, same disease progression, and probably have similar genetic abnormalities. As we get worse, we both fight hopelessness, especially since we've lived full, creative, fulfilling lives in the past. Severe fatigue is misunderstood and many doctors are dismissive and unhelpful. So, we are turning to you for help.