Chronic Fatigue?

Hi Billy,

Long before I new anything about Autism, I was like this. I remember having 1ltr bottles of Tesco's blue bolt (own brand red bull) in a bedside drawer just to help me get out of bed. I exercised, ate healthily, stopped drinking, got therapy for depression etc., but it would always come back.  I still get that way now, and I suspect it's in line with what Mariusz said, about the brain saying "NO". I've been tracking when it happens and it seems to be when I'm overwhelmed with things like meetings, talking to too many people I don't know, or performing/masking more than usual or for too long without a break.  I just try to remind myself to keep an eye on those situations, or t least realise that may be a factor.

I had this type of fatique and also thought that it is there to stay.

But I was really stressed out and once I lost reasons to be stressed, now I am back to "normal".

This sounds like something else - have you burned out at work? Are you stressing out, because you do not work? Is your relative sick or maybe something else is bothering your mind? I still get tired from crowds of people and talking, but compared to what I had couple of years ago, now I feel very good. Though, if I get tired - I just lie down and take a nap, but usually after I get stressed out. For examle - after visit to a dentist I would need to take a nap, as that is exhausting to me.

PS I changed a diet as well and went to meat only, as I felt unfullfilled hunger and no vegetables could satisfy that.

I'm also vegan. If you don't already, you should supplement B12. You can't really take too much, but it's easy to become deficient, especially if you don't eat many (or any) animal products.

I used to experience this kind of fatigue and it mostly went away when I started living alone, so I think it can be due to being overwhelmed by people/inputs to some extent.

Hi,

Like you, i struggle with fatigue on a big scale! It was put down to being a mum of 2 young children, only to find out that I also have Fibromyalgia. I believe that it is linked to autism. Unfortunately I have no tips or tricks to help, i am on my journey and will share when i find something.

Fully agree 100% - it could be something serious.

Before I went off gluten, just when it started to really impact my system, I couldn't sleep enough. I believe it was coupled with inflammation from sugars. I was found to have a yeast infection - in my blood. Really severe. 

So, my current diet due to allergies means no grains, no legumes or cruciferous veg and no artificial sweeteners, add very limited alcohol. I could never go vegan. Discovering eating for my blood type helped as well.

You first need to get your levels checked by the doctor. I can't stress this enough. Sometimes an underlying physical problem can make an exhausting situation worse. 

Myself I am used to pushing through so that when I've had fatigue I haven't realised because I am so used to feeling tired anyway. I'm learning to listen to my body. I think interoception difficulties and alexithymia can add to the problem. 

I know myself anxiety can make you exhausted. But so can physical things like low iron etc. Get yourself checked out first to rule anything out.

Also if you are vegan make sure you are getting enough b12 and that your body is retaining it. This is your intrinsic factor. I think b12 can only be got from animal products. I am veggie so take supplements. 

Have you had covid at all or any other viruses? These can also set off chronic fatigue. I think often in life, there isn't usually just one cause but a myriad of factors. 

P.S. like you I am teetotal (some 20 years now) and am careful with diet, being gluten free and having issues with inflammation to other things too. Bodily inflammation and connective tissue sensitivity seems to go hand in hand with autism, and it sometimes feels like even a disciplined diet is sustaining worse overall health than a poorer diet does in many people with none of these issues. 

Hi Billy. I really appreciate you creating this thread, which is to our mutual benefit perhaps as I can absolutely identify with much of that and am having the 'thank god it's not just me' reaction that I hope you will also experience when you read this. 

I'm 44 but since even my teenage years I've found that I burn out my batteries extremely fast, needing regular rest periods and naps to re-charge. Pre-diagnosis, I put it down to being at the fairly extreme end of the introversion scale, which remains true of course - just with more context. I work full-time Mon-Fri 9-5 - it's basically a desk job- and by the time I get home I'm pretty exhausted mentally and from the sensory inputs that are part of the ebb and flow of an offiice where the majority prefer things differently from how I'd ideally have them (no noisy cold fans going, or open windows, or harsh overhead lighting, etc.) and if I'm not ready to lie down and sleep, I know I will spark out immediately after my dinner. I could sleep on and off quite easily over the course of a weekday evening. While I do then drift past midnight before I go to bed, once I go over I go deep - and really need a good 6-7 hours.

On weekends or holidays, I could lie in for a long time- midday sometimes- though admittedly often having stayed up into the small hours. One thing I notice is that small amounts of housework or garden work can exhaust me to the point where I need to sleep for an hour afterwards - it descends like a curtain as soon as I sit down or lie down again. I usually feel lightly refreshed afterwards - to begin with- but it does mean that I have to audit my energy carefully and realistically. I would go for more walks and things if I wasn't mostly in an energy defecit the majority of the time.

At times in the past, I've felt guilty about it as I'm consious of how active other people are - doing umpteen things at the weekends, doing evening classes, giving their time to good causes etc. But there's no point in trying to be what I'm not - someone with surplus physical and mental energy to invest substantially in these things. I do still occasionally go out with a friend or two to a show, and have joined one or two support groups (eg. social anxiety) in the past that required semi-regular attendance - and I may volunteer in the future if I can find something that isn't unrealistically taxing.But otherwise, I have to accept that I'm designed for life in the slow, and sleepy, lane - an offset to the externally invisible but nonetheless continuous drain on my mind, body, and soul, that being well camoflaged necessitates me to be plugged into. 

I think it's helpful that you make the distinction between this shared issue and burnout, which feels like its own additional layer. I experienced something very like a shutdown/meltwon hybrid three Fridays ago and not only did my frantic brain seek escape, via exhaustion, into a very deep sleep as soon as I got home, but I had flu-like symptoms with it - shivering, fever, couldn't get enough heat into me. It's happened before when a day has been especially difficult due to triggers coinciding with other mental/physical demands. 

But the more regular, persistent, fatigue, is something in its own right. That thing that stops me from reading as much as I'd like, or making more efficient (though maybe by only an NT definition) use of my time. In some ways it's more of a friend than an enemy - if regular oblivion wasn't pretty much guaranteed, my anxiety would pull me under. As it is, I get mini-comas at very frequent intervals. A bodily-imposed imposed briefly restorative state of sorts. For which I am mostly grateful. 

Hi Billy,

Our page on fatigue may also be worth a read:

https://www.autism.org.uk/advice-and-guidance/topics/mental-health/autistic-fatigue

Best wishes,
Kevin Mod

You may be experienced a vitamin deficiency, Some people are unable to utilise certain vitamins and minerals and need to consume more of them as a result. I tried going vegan and was told to stop. Most Iron supplements are non Haem sources of Iron which you can only get from eating animals. 

Also despite eating a really balanced diet i have to take additional vitamins and minerals like B12. Riboflavin, Omega 3 & Vitamin D and it has helped with the chronic fatigue issues and reduced chronic daily migraines a lot too.

Have you taken any Antibiotics or gotten sick right before experiencing these symptoms ? because it can trigger chronic fatigue and no one knows how to recover from it. You just have to learn to manage it and yes it a pain.         

I honestly don't know if it's a problem from autism. I have the same problem. Currently, i take energy pills that help me not feel sleepy and provide mild motivation. Right now, I believe I need to exercise more and change my diet (I have a lot of intolerances). Was there any slight change when you changed your above methods? I'd be curious to know since I'll be trying these solutions next :)

Basically - You've pushed yourself to much for to long to meet social requirements and appear normal, and your brain has enough and whenever you begin to consider doing one of those things again it interjects ''NO !!!'' so you can't really plan anything in that area, you'll most likely lose interest in doing anything including your special interests, and lose lots of memory

recovery is slow and difficult but possible