More than pain and fatigue - how much more personal symptoms outside criteria are shared experience.
There are so many aspects of life with the illness that don’t make it into the official guidelines, largely because symptoms can vary from patient to patient. At the Health Rising forums, Cort Johnson is asking ME/CFS and Fibromyalgia sufferers to describe their personal symptoms.
A monster list of Fibro symptoms chronicfatigue.about.com/od... full but but not exhaustive list that I could add some more if sure which condition was responsible for them.
Sharing symptoms has value a reduction of isolation broaden the discussion with suggestions how each can be lived with.
Example - brain on fire a dark room with essential oils damps the flames.
Recognising an item described in charades asks questions of personal experience we can only say what it is like within the understanding of those we describe for.
Suffering from a burning sensation within the muscles fellow suffers can chime with what I say for those not familiar with a symptom similar sensations are described.
Questioning who we describe for amongst ourselves or greater understanding from society a description of the sky for deep sea fish.
Going beyond diagnostic criteria is a simple act with some criteria so vague.
Some I realized were off the radar so to speak when others are important.
It helps to hear how others describe their symptoms. I used to think of one of the most difficult of my symptoms as like being encased in steel, with no room to move and very tight. I described this to someone else and he said that he thought that might be like what he calls pressure all over his body. I realised that was a better way to describe it, and indeed the same thing I was feeling. That was a few years ago, before I got involved with various forums and read a lot more about this illness. It helped me because I realised that I wasn't imagining these symptoms.
Link to Audio, video, powerpoint and transcript of Dr Alastair Miller's lecture on ME/CFS on May 5th