I suffer from a neuropathy around 40% of UK Rheumatologists agree exists, 30% say is psychosomatic and does not exist and the remainder who say it probably does not exist, as the current evidence is vague, but offer treatment anyway - in case they are sued.
The condition is called 'fibromyalgia'. One way to think about it is a non agressive form of MS with muscle weakening, fatigue, muscle pain, stomach cramps, migraine like headaches and days when pressure points around your body are so sensitive to pressure and pain; to lie on your side, in bed, requires putting a pillow between your knees and another between your arm and your head.
Last night I had a beezer of a flare up. It caught me by surprise because I have not had an attack like it for around ten years. At 0340 this morning I woke up and felt as if my skin was burning. The sort of burning you feel after being scalded or badly sunburnt. Being scientific by training I checked the surface temperature of my skin, it was quite normal, but physiologically all my senses were saying get in a cold shower now. I took some pain killers, an extra dose of endorphin promoters and waited out the 30 minutes until the pills worked and the attack subsided. I set up my pillows and duvet to reduce pressure point contact as I have been shown and went back to bed. Clearly I made that all up, if you are in the psychosomatic group of thinkers, and all I needed to do is give myself a firm talking to.
Being a scientist and medically trained I checked, this morning, to see if there was a known physiogical cause for this unpleasant but not life threatening episode and found there is. Research being carried out in the US on fibromyalgia has just demonstrated a physiological mechanism for this 'burning all over, sensation. It appears in us suffers an important chemical feedback loop between the body's pressure sensors just under the skin, the nerve fibres that serve them and the nerve fibre insulators (Schwann Cells) does not work. The initial research is showing a critical chemical messenger from the Schwann cell which is supposed to 'damp down' the response to the pressure sensor at the spinal column nerve root / ganglion not only does not work but causes a hieghtened response instead. Once the high level of this rogue chemical messenger is achieved in the spinal fluid then the body's whole sensory system goes rogue, hence last night's attack, and why artificially raising the levels of endorphins (the body's natural pain killers) in the spinal fluid stops it.
Will this new evidence change the attitude of the Rheumatology Department in Dumfries Royal Infirmary to myself and other suffers? I very much doubt it and, personally, having yet another attempt at reasoned scientific debate with a consultant (and his team) who do not want to listen is just not worth raising chemical stressor levels in my body and bringing on another episode of fibromyalgia - my body is good enough at that, as it is.
The condition is called 'fibromyalgia'. One way to think about it is a non agressive form of MS with muscle weakening, fatigue, muscle pain, stomach cramps, migraine like headaches and days when pressure points around your body are so sensitive to pressure and pain; to lie on your side, in bed, requires putting a pillow between your knees and another between your arm and your head.
Last night I had a beezer of a flare up. It caught me by surprise because I have not had an attack like it for around ten years. At 0340 this morning I woke up and felt as if my skin was burning. The sort of burning you feel after being scalded or badly sunburnt. Being scientific by training I checked the surface temperature of my skin, it was quite normal, but physiologically all my senses were saying get in a cold shower now. I took some pain killers, an extra dose of endorphin promoters and waited out the 30 minutes until the pills worked and the attack subsided. I set up my pillows and duvet to reduce pressure point contact as I have been shown and went back to bed. Clearly I made that all up, if you are in the psychosomatic group of thinkers, and all I needed to do is give myself a firm talking to.
Being a scientist and medically trained I checked, this morning, to see if there was a known physiogical cause for this unpleasant but not life threatening episode and found there is. Research being carried out in the US on fibromyalgia has just demonstrated a physiological mechanism for this 'burning all over, sensation. It appears in us suffers an important chemical feedback loop between the body's pressure sensors just under the skin, the nerve fibres that serve them and the nerve fibre insulators (Schwann Cells) does not work. The initial research is showing a critical chemical messenger from the Schwann cell which is supposed to 'damp down' the response to the pressure sensor at the spinal column nerve root / ganglion not only does not work but causes a hieghtened response instead. Once the high level of this rogue chemical messenger is achieved in the spinal fluid then the body's whole sensory system goes rogue, hence last night's attack, and why artificially raising the levels of endorphins (the body's natural pain killers) in the spinal fluid stops it.
Will this new evidence change the attitude of the Rheumatology Department in Dumfries Royal Infirmary to myself and other suffers? I very much doubt it and, personally, having yet another attempt at reasoned scientific debate with a consultant (and his team) who do not want to listen is just not worth raising chemical stressor levels in my body and bringing on another episode of fibromyalgia - my body is good enough at that, as it is.
I too attend the very same clinic and get the same response. I also have Lupus but it's not real Lupus - their word's not mine as it is SCLE. I have had to retire due to this non existent illness. I'm 38
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