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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@Matty Food elimination is really difficult. We never know at the outset whether it will work. And our pleasure and reliance on chosen diets are very primal. My life changed dramatically after 3 days gluten/dairy-free. At the minimum, I suggest you try eliminating these for a period, see if it helps. I've now been on GAPS 3.5 years. After 6 months I started looking at other things, supplementing minerals, detox, methylation. The diet was the foundation. I've only been able to add back some foods recently.

My weight has been creeping up since I've added nuts and seeds into my narrow diet. I've just decided to begin the 5/2 diet. It's not exactly fasting on the 2 days/week, but limiting to 4-500 calories. Appears to work for weight loss for many. http://thefastdiet.co.uk/
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
So I just gave up and just let my body/mind do it's thing.
This is the best solution I have found, unless you have to engage in work or study or other scheduled activity.

Hallucination from lack of sleep is normal, though I think its more that dreaming can occur even while awake, and you can get microsleeps .... suddenly falling asleep for a few seconds on a regular basis. It make using machinery or doing anything potentially hazardous very dangerous.

Its uncommon to see severe sleep wake-issues in new patients. However I have observed after about the three year mark (there is that number again i.e. the findings that our biochemistry changes at three years) these issues become more common. In much longer term patients they can be severe and most patients have some form of circadian problem.

Its possible at lower severity to force yourself into a schedule. I did this at university. However I suddenly had my mild OI become severe OI at this time, and I was passing out as often as every minute if I was walking up stairs. Its also possible to control it to some extent with sleep meds, though these may need to be cycled/rotated to prevent you getting used to them.

There are lots of ways to cope or manage with this illness. I hope you find some of them here. There is no proven cure (yet, keep watching the Rituximab trial) but many treatments can make major improvement.

The best hope for recovery, without treatment, is in the first five years. You are still in that window. Another good hope is your issues are due to other things, many of which are treatable.