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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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Thanks a lot !
@BrightCandle @Woof! She likes to know what you did to get from severe to moderate
Rest ?
meds?
If others have an answer, please do tell
The thing that has helped me the most is treating gut dysbiosis with a low carb diet. If I start eating 150-200 gms of carbs a day, within 2 weeks, I'm spending most of my days in bed again.
I think they have and are making a big difference. I often hesitate to mention this because they can cause anywhere from mild to severe die-off symptoms from the bacteria dying.
So I don't think it's the best place for most people to start treating dysbiosis and leaky gut.
Could you explain this sentence to me, don't quite understand
When meditating try just staying in the various senses instead of having a predetermined point of focus like e.g the breath. This requires less mental energy so it can be done longer than the usual way of doing it. If she has some negative thoughts that demand her attention then try doing some CBT to get some distance.I would say the latter
Literally she said "I can't stop thinking and this causes PEM"
She tries mindfulness (app) , but you can't do this all day
The thing that has helped me the most is treating gut dysbiosis with a low carb diet.
I had this too, now its just when I have PEM. You cant think straight, you cant even pray. Head is spinning while body in severe PEM/ PENE - mode and then suddenly adrenaline kicks in and makes everything even worse.I would say the latter
Literally she said "I can't stop thinking and this causes PEM"
She tries mindfulness (app) , but you can't do this all day
Literally she said "I can't stop thinking and this causes PEM"
ooh, I do this too! One of the few things that sort of makes me sleep.Personally, I watch lots of ASMR videos on YouTube, which help when I can't stop thinking.
1) I can't read books
Thanks guys, she is very severe now so tasks switching of any kind will be a problem I'm afraid
will suggest the "mindless yt", though she will probably say this is not possible
@BrightCandle if I somehow gave the impresission that I don't believe her, this is not the case
It is strangely comforting for me to learn that you can still "recover" from a severe crash after 10 months. She crashed first week of November
Another thing that's starting to worry me.
If you're lying there day in day out, without all but necessary movement. She won't develop any other probems because her muscles will weaken over time?
I'm not sure that I'd consider life worth living
The most important thing is that she stops crashing and that hopefully this one will „flat out“ in a few months.
fingers crossed it gets better asap.