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Chronic Fatigue Syndrome

Barrack

I'm curious to know if anyone here has been diagnosed with CFS *Chronic Fatigue Syndrome*.

I was previously very active here quite a few months back but had been suffering from severe fatigue and felt generally unwell and rundown and it now turns out I've got CFS. I don't know if it's common in the autistic population but if you have experience of it I would be glad of any tips you have.

I'm struggling with this I can't deny it. I spend most of my time in bed, sometimes I get up for the first hour after waking up but I'm soon overcome by intense fatigue and can hardly stand after so bed is where I spend most of my days now. I'll usually have music playing so I don't expire from total boredom but this is my life now, I can no longer work or do the hobbies I used to enjoy.

It's frustrating just like my ASD is but at least with ASD I could function. This is robbing me of my life.

  • I'm not an expert, but I've heard that CFS can be really tough. You're not alone in this, and reaching out to CFS support groups might help.

  • Hello,

    I am diagnosed with CFS too. It’s taken years to figure out what works for me and what makes me worse, so as hard as it is, give yourself some time to try and figure it all out.

    I found that pacing really helped… doing some thing and then ensuring I had time to rest and recuperate afterwards, this also seems to match my autism quite well as after a lot of activities particularly if social I also need time to switch off to avoid being overwhelmed.

    Try and work out what helps you really relax, which is really difficult. So when you have the down time, you’re properly resting and recouperating. 

    Also have a think about whether any of the hobbies you have or any interests you have you can do from your bed or sofa… for example, I’ve got into building Lego recently, and do it whilst in bed laid out on trays in front of me, so my time where I need to be resting is also worthwhile as I felt I was getting really low from just needing to rest so much and not doing things I enjoyed. 

    happy to give other suggestions or help where I can, so let me know if any particular questions? 

    :)