Living with ME/CFS is... Living with tinnitus too
When I got ME/CFS, I got other complaints as well. For example, I got tinnitus. It started with a soft murmer in both ears, but after a while the murmer became louder and several other sounds joined in.
At the audiological center I got my tinnitus examined, so I know exactly where the murmer, the beeps and the hum are. At the accompanying information meeting I learned that tinnitus generally is only 5 dB above your hearing threshold. That means that tinnitus usually júst is audible, even though you may experience a lot of problems by it.
My tinnitus is above averagely loud: the murmer is 25 dB (about whisper level) and the beeps range from 10 dB to about 40 dB (almost speaking level). The hum is about 5 dB. Fortunately, I can ignore the tinnitus reasonably well, so I don't suffer much from it. Even though it is exhausting.
Tinnitus is acoustic phantom pain: the brain makes a sound to compensate for the existing hearing loss. I appear to have a very slight hearing loss, at a specific frequency. Apparently enough for my brain to produce their own sounds to compensate...
During the hearing test it became clear that I have a mild form of hyperacusis, or hypersensitivity, too. This means that sounds are more painful for me than for other people, because the pain threshold is lowered. Some people always get lucky! ;-)