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I've been following improved regimes since the start of February 2003, with various adjustments to aid the management of the illness. They are not a cure, but have had interesting results - I am now able to maintain (low) activity levels, which earlier had become impossible.

It's all about manangement, of which we've all heard much, but introduces the strange concept that the pain is not necessarily associated with the activity.

I've used it in association with prescription pain management and an attempt to improve sleep - I feel sleep is the key to improvements.

  • Pregabalin
    (previously Gabapentin, and prior to April 06, Carbamazipine at night)
    Taken to reduce pain and promote sleep without the fatiguing effects of sleeping tablets. While the three times day dose increases fatigue markedly, it makes the pain more remote, and hence has improved stamina on the better days.

  • Hypnotic Sleep CD
    Helps to get ready for sleep, and provide a distraction from the pain.

  • Co-dydramol
    Taken reguarly through out the day to reduce the pain and queasiness.

  • Dihydrocodeine
    Added in 2 times a day since 2013 after the Co-dydromol to boost the pain relief, and often at night to allow sleep.

  • Sleep Apnoea Treatment
    In 2013 tests at home showed borderline Sleep Apnoea, but trialling the treatment, while hard to go to sleep, found it helps the brain fog during the day, though not the fatgiue.

  • Regular gentle physical activity
    To maintain an baseline of activity no matter what. This currently involves a 15min yoga routine and a walk - no matter what. Bare in mind that this is not a lot, and is kept well below "normal".

This regular activity was proposed by considering the illness in a new light - that the pain and tiredness is not an indication of fitness. That is, that some activity is possible even though pain already exists, and that there is a baseline of activity possible which doesn't make things worse.

One way of considering this is that the illness causes the body to be "over sensitive", so that pain is felt where normally it would not, though activity above the (low) baseline still causes fatigue.

One thing to point out is that this is physical activity. Mental activty seems to be a separate issue - the increased physical activity does not effect the baseline of mental activity, one way or the other.

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