Hi my father is a doctor and I sent him a link to this blog asking if he knew what might be wrong, here's his response:
He has classical chronic fatigue syndrome, on the same continuum as fibromyalgia and 'ME'. The best term is 'syndrome of central sensitisation'. "Gulf war syndrome, yuppie flu etc are all part of the same spectrum. It is akin to phantom limb pain.
The problem lies in the brain, in the area of the brain that processes incoming sensory information before it presents it to consciousness, which is where we all live. Our brains have the capacity to turn up sensation in the short term to help us respond appropriately to a threat: for example people report that in a road traffic accident everything becomes vivid, and time slows down. This normally turns down after the threat passes. If the threat is severe enough, the memory may keep coming back in flashbacks and nightmares, and the person suffers anxiety and panic attacks. This is post-traumatic stress disorder.
Some people develop the syndrome of central sensitisation after a major stress (I had a superfit tree surgeon, a felled tree landed on him but not a branch hurt him, but afterwards he developed severe generalised pain , couldn't sleep and was exhausted. He never worked again).
The more common group are people who have major childhood threats, such as early bereavement, parental violence, bullying , sexual abuse etc. It seems their brains become hard-wired in adolescence to be in a permanent state of this hyper-vigilence. All they need is a 'second hit' later in life, some emotional or physical problem, and the whole process is triggered: central sensitisation ensues as a permanent problem. It's like a radio with the volume turned up too loud: there's nothing wrong with the signal or the radio, but the noise it makes is intolerable.
In fact, sophisticated research tools have demonstrated chemical, electrical, blood flow changes and on functional MRI in sufferer's brains. In fact, there are physical changes to the brain in PTSD, with atrophy of the hippocampus.
Listening to these unfortunate people is fascinating, because it is clear their suffering is so great and real, and it gives us insight into the variety of experiences that human beings endure. A character in The Tempest remarked how beautiful the island was - it is so sweetly perfumed and the waves breaking on the shore make such sweet music - whereas his companion said ' It stinks like a fen.'
Treatment is far from satisfactory, especially for protracted severe cases.
You know jhollingworth, nobody has put forward your analysis here or suggested (hushed voice - hypochondria - which could be related to what you describe). But, and please don't mod me down here, this person must a) be either _extremely_ unfortunate in not finding one competent person to perform a correct diagnosis in 18 years, b) have an extremely rare ailment or an ailment that is not so rare but is habitually not picked up on or c) mentally deluded in some way. I am not a medical expert, I completely sympathise and hope for a successful outcome.
IANAD, but this sounds spot on. Nearly every problem he describes is explained by a slight adjustment to the pain threshold. His throat irritates him. His limbs hurt. He is tired. He can't focus. These are all things we all feel all the time. He feels them more.
It is consistent with responding to anti-depressants for a short time - before the initial semi-euphoric effects wear off, and then going off them once the trough after that begins. It is not uncommon for there to be a peak and a trough before stabilizing on an anti-depressant.
I wonder if OP has ever stuck with one anti-depressant for very long. They are very effective against this type of pain, whether the OP is depressed or not.
He has classical chronic fatigue syndrome, on the same continuum as fibromyalgia and 'ME'. The best term is 'syndrome of central sensitisation'. "Gulf war syndrome, yuppie flu etc are all part of the same spectrum. It is akin to phantom limb pain.
The problem lies in the brain, in the area of the brain that processes incoming sensory information before it presents it to consciousness, which is where we all live. Our brains have the capacity to turn up sensation in the short term to help us respond appropriately to a threat: for example people report that in a road traffic accident everything becomes vivid, and time slows down. This normally turns down after the threat passes. If the threat is severe enough, the memory may keep coming back in flashbacks and nightmares, and the person suffers anxiety and panic attacks. This is post-traumatic stress disorder.
Some people develop the syndrome of central sensitisation after a major stress (I had a superfit tree surgeon, a felled tree landed on him but not a branch hurt him, but afterwards he developed severe generalised pain , couldn't sleep and was exhausted. He never worked again).
The more common group are people who have major childhood threats, such as early bereavement, parental violence, bullying , sexual abuse etc. It seems their brains become hard-wired in adolescence to be in a permanent state of this hyper-vigilence. All they need is a 'second hit' later in life, some emotional or physical problem, and the whole process is triggered: central sensitisation ensues as a permanent problem. It's like a radio with the volume turned up too loud: there's nothing wrong with the signal or the radio, but the noise it makes is intolerable.
In fact, sophisticated research tools have demonstrated chemical, electrical, blood flow changes and on functional MRI in sufferer's brains. In fact, there are physical changes to the brain in PTSD, with atrophy of the hippocampus.
Listening to these unfortunate people is fascinating, because it is clear their suffering is so great and real, and it gives us insight into the variety of experiences that human beings endure. A character in The Tempest remarked how beautiful the island was - it is so sweetly perfumed and the waves breaking on the shore make such sweet music - whereas his companion said ' It stinks like a fen.'
Treatment is far from satisfactory, especially for protracted severe cases.