Published on 12, July, 2020
It seems to me that many people I know who suffer from CFS/ME/Fibromyalgia/Lyme disease are also on the autistic spectrum.
On another thread it was mentioned that autistic exhaustion might present itself as CFS. And this is exactly what I have been told over and over - and it frustrates me no end.
I strongly feel that my burn-out was triggered after I was bitten by an infected tick (I have positive antibodies, to show this occurred - I was never treated with antibiotics, it is 7 years ago now). Since then I have had a lot of trouble with chronic fatigue, fibromyalgia, rashes and brain fog and all apparently stress related according to the doctors due to ASD).
What frustrates me no end is that I believe my story is far more complex than "just autistic exhaustion" on the one hand or 'Lyme disease in all its hype-glory" on the other.
My theory is that autistic people aren't just more sensitive with regard to their senses (hearing, seeing etc) but that our immune system is also a sense, which can be sensitive.
My psych agrees that chronic stress compromises the immune system. Chronic infections like Lyme also undermine the body.
I once read (but never saw it confirmed) that up to 90% of autistic people have irritable bowel syndrome. More and more research is showing links between bowels/intestines, immune system and brain and also low level chronic inflammation.
I'm curious to hear from you if you also are suffering from fatigue, muscle/joint/tendon aches and whether you believe it to be autistic exhaustion or something else. Have any of you also had the bad luck of being sucked on and spat into by an infected tick? Does it affect you?
Are any of you eating really healthily in order to combat chronic low level inflammation?
I do have more energy now I pace myself more - with few activities and constant choosing and also disappointing others and myself. It is ridiculous how much less energy I have than before (I'm ADHD/ASD). I'd love to hear some advice.
My diagnosis of CFS about 18-months ago never felt quite right to me as I didn't have all of the symptoms and those I did have, I seemed to experience differently from how they were described in most CFS literature.
I've since read that AS trumps lots of other previous (mis-) diagnoses and I feel that what I'm experiencing is 100% the type of exhaustion described by my more recent AS diagnosis.
For me it's the same story with Irritable bowel syndrome, I never did have all (or even enough) of the symptoms to qualify. I now associate the symptoms I do get with AS.
I don't think I eat "really healthily" but I am eating more healthily than I did when I was younger. I never buy meat from supermarkets for instance and rarely eat heavily processed foods such as ready meals but I do occasionally have pizza. I think healthy eating for me is a balance between genuinely good, pure food and quick things for the days when I just don't have the energy or inclination to prepare and cook it. The former is good for my body and the latter is good for my immediate wellbeing. That, for me, is enough of a healthy balance.
I do think that some doctors dismiss symptoms from AS patients and it can take a while to get to know your GP so that they understand you properly. I changed GP about a year ago because my previous one didn't listen to, or take seriously, anything I said!