Once again, I have found a medication that helps my symptoms, but does so in a way that makes it impossible for me to seek outside employment.
My new pain pills are a godsend. Except that even backing them up to an hour or two before bedtime, they're still making me sleep till at least 9 AM. Since it takes a while to get my muscles moving in the morning, and it takes me quite a while to commute anywhere on the bus, that means that I could not possibly take a job that starts before 11 AM -- noon if I need to go somewhere other than downtown.
Most office jobs here start at 8 or 8:30, so if I'm not awake till 9, I couldn't even take a job across the street and get there on time.
I went through this with the experimental sleeping pills, too. Even if I took them at 5 PM, the disabling side effects lasted till noon. They put me to sleep within 15-20 minutes, so I couldn't have taken them earlier. BTDT with the first sleep aid I was given in 1988 -- I backed them up so far that I was taking them at work, which resulted in Vickey having to make sure I got off the bus at the right stop, and pointing me in the direction of home (fortunately, I only had to walk in a straight line to get there). Same thing with those, I was non-functional till noon even taking them at 4:45 PM.
Unfortunately, the Disability judge seems unable to process the notion that my doctor preaches with every RX: "all medication has side effects". He can't conceive of a medication that makes you worse. Just pop a pill and get back to work; don't make excuses that it's causing new problems.
But this is actually fairly common for CFS patients. CFS affects your metabolism, so medications that rely on being metabolized at a certain speed don't work properly. That results in unusual side effects. As a result, many CFS patients are unable to take any prescription medication, which leads to the erroneous conclusion that there can't be much wrong with them since they're not taking a boatload of prescriptions -- when I went for my first SSDI exam, some people had a grocery bag full of prescription bottles. I had one prescription (not even for CFS) and a bottle of vitamins; anything else caused me problems or simply didn't work at all.
This is yet another way that the experts are able to sort out true CFS from some of the lookalikes: weird reactions to medications are common in CFS but rare in the others. But to the average doctor (or judge) who is not familiar with CFS, the notion that you cannot take medication sounds too bizarre to be true.