Aspergers and chronic fatigue syndrome
I've been suffering from fatigue since i was 14. I hate it, I have so many things I want to do but no energy to do them.
I often wonder whether its just a mental fatigue or physical fatigue.
BUT, when I went to an aspie retreat a while back it was so great not having to worry about being judged and I wasnt tired once the whole time I was there so there has to be something to it.
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To be nobody but yourself in a world which is doing its best, night and day, to make you like everybody else means to fight the hardest battle which any human being can fight; and never stop fighting. ~e.e. cummings, 1955
I often wonder whether its just a mental fatigue or physical fatigue.
BUT, when I went to an aspie retreat a while back it was so great not having to worry about being judged and I wasnt tired once the whole time I was there so there has to be something to it.
I'd be willing to say then it almost likely is because of high levels of mental stress that is causing the fatigue. Stress can cause fatigue, and since you say you didn't experience it around other people just like you at the retreat, where you could be yourself, that is most likely what it is then.
Researchers did find last year that Aspergers is linked to low cortisol levels: Aspergers Syndrome Tied to Low Cortisol Levels. I have chronic fatigue caused by adrenal insufficiency and have to take Hydrocortisone, Fludrocortisone and DHEA to get through the day. I am very prone to viruses and have a weak immune system. I have an underactive thyroid. My son who has Autism is also very susceptable to viruses.
I wonder how many others here have low cortisol? Another very interesting Wrong Planet thread: AS Connected to Low Cortisol Levels.
Venus
I wonder how many others here have low cortisol? Another very interesting Wrong Planet thread: AS Connected to Low Cortisol Levels.
Venus
Well, my fatigue must be something else. I pretty much never get sick. That is interesting though, that the study links the two together.
I have CFS dx. It's been about 15 years IIRC.
I defintely agree about stress. Especially long-term stress. I remember hearing that FM (and maybe CFS also?) could be set off by PTSD -- which is partly a prolonged, out-of-control stress reaction. I had a doctor once who even thought that was CFS was; a dysregulated/broken stress response system.
I think one interesting idea is that CFS may be a bunch of different things lumped together by vague diagnostic criteria (not that it's necessarily possible to do better at this point). I've had a dozen doctors accept the dx fine, even though I've never had any flu-like symptoms (save muscle soreness). And I have a level of cognitive dysfunction that seems much worse in comparison to level of physical/energy impairment that other people w/CFS I've seen. It seems more like a mild dysautonomia (low BP, digestive system seems to move really slowly, temperature regulation is flakey, etc.) and some cognitive stuff, in my case.
Had a Cortrosyn stimulation test a long time ago, and despite fatigue and hypotension it came up normal three times in a row.
I'm rambling a bit OT here, but I was reading last night about parkinsonism (have an uncle with Parkinson's). Basically involves low dopamine and frontal lobe dysfunction (AFAI understand; maybe someone else knows this stuff better).
Anyway, some of the effects of parkinsonism: mask-like face, trouble switching attention/multitasking, slow processing/thinking, executive dysfunction, trouble speaking, fatigue, slow movements. There's a lot more, of course, like the tremors. But there seems like there's a lot of weird overlap there. I suppose that is just because the both affect the frontal part of the brain? Anyway, that just seemed interesting.
I think one interesting idea is that CFS may be a bunch of different things lumped together by vague diagnostic criteria (not that it's necessarily possible to do better at this point)...
I have recently been wondering if there could be some correlation between CFS and AS. For instance, a lot of people here on WP talk about becoming exhausted after trying to carry on a conversation or being in a social situation. For me it's always been more exhausting to talk to people than to do light physical tasks. I also wonder if the stress of dealing with AS is not some kind of contributing factor that has worn me down over the years.
I agree very much with these two comments.
I googled CFS and Aspergers and this thread came up. I can't believe I missed it in April when it was posted. I have been thinking about this because I was diagnosed with CFS over 10 years ago and about 5 years ago I heard about a therapy that made a friend of a friend "better". So I thought, what's to lose, I may as well give it a go.
This therapy involved keeping a diary where I had to write out how I felt in a situation. i.e. “I was at college and I felt unhappy because I was left to do a task on my own and my assigned partner went home early which also made me feel angry with him because he left me to do the work by myself and it was like he didn’t care about doing well on the project.”
I did not understand that I was meant to write things out in this way. I wrote: “I was at college, I had a sore head.” My therapist thought this was funny because I had interperated “how I feel” to mean physical symptoms not how I feel, as in emotionally. That is when I realised that I don’t understand and find it difficult to deal with emotions. My therapist helped me a lot. She said that I was ill because my body was sending me signals (the pain in my head for example) because it wanted me to act on how I felt and deal with the situation at hand. Like I should have said to my college partner that I was not happy he was going home early and leaving me to do all the work. However, I was not dealing with situations and just making myself more and more ill. It was like I was putting all of my emotions in a big pot and ignoring them and the pot had got to the point where it was overflowing and I couldn’t put anything else in it.
But now I have learned more about AS I think that is possibly my underlying diagnosis. I still don’t deal with stress well. I still don’t really understand emotions, what other people are feeling and how it relates to what is going on around me or how that impacts on me. My natural defence mechanism is just to let everything wash over me and not react because I simply don’t know how to react. I think that this has had a detremental affect on my health.
I had a meltdown the other night. I went to a dance. I was terrfied because I don’t like new things. I didn’t know who was going to be there. I don’t like meeting new people. I have a crush on the person who invited me. I was stressed because I didn’t know how I was meant to behave around him. I really like him and I have lost others in the past because I don’t send out the right signals. I know that at some point he will give up because I am not reacting in the right way and that added to the stress of the evening. I really didn’t enjoy myself while I was there and went home and cried myself to sleep. I was then ill for the next few days. I had pains down my arms that I used to call symptoms of CFS. I had a headache and I have had trouble sleeping. I know that the dance was the trigger to my being ill this week.
I think some CFS sufferers may have been misdiagnosed and these are results of AS. But I am not a doctor and I may very well be wrong. This has just been the process I have gone through in my own life.
I wonder how many others here have low cortisol? Another very interesting Wrong Planet thread: AS Connected to Low Cortisol Levels.
Venus
I have low cortisol levels too. I read that thread at one time.
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After a time, you may find that having is not so pleasing a thing, after all, as wanting. It is not logical, but it is often true.
--Spock
well I had CFS and FM for most of my 20s including multiple chemical sensitivities etc...the usual gamut of symptoms I guess. Now basic CFS gone but realised recently I have always had qualities that equal aspergers / high functioning ASD.
I Have also had PTSD due to childhood abuse trauma. I believe that I was traumatised by the abuse as a child that triggered or created groundwork for the CFS; it subsided in correlation to processing of that trauma.
My aspergers tendencies however I think are more inherent than any of it (ie biological). Perhaps the AS/ASD neurology is a great breeding ground for CFS as a response to trauma...Autism etc seems to have a sensitive response system (physical and other responses).
I was immunised as a child and asthmatic (seriously) since 4 yo. The onset of Asthma was sudden and extreme.
The onset of CFS was after I disclosed abuse and it was denied by my family.
I believe my adrenals were exhausted by my life experiences and that contributed to CFS.
My friend with CFS was also V high IQ, high achiever and I suspect Aspy/ASD now I think back. An assault by a gang seems to have triggered the CFS.
Been dxed with chronic fatigue and FMS , and ME & even Lyme . host of dxes.Bedridden , massive antibiotics for years
Got some relief, was amazing.Then stress in huge doses was applied to me , mostly mental. Gound a old MD whom was not very convinced about current diagnostic method ..i had nothing to lose..so I used my repeated deep dives on how and what vitamins and herbs to apply to me . Just as I was crashing back being bedridden. made a great recovery .
but have bouts occassionally
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Diagnosed hfa
Loves velcro,
I wonder how many others here have low cortisol? Another very interesting Wrong Planet thread: AS Connected to Low Cortisol Levels.
Venus
Well...am hating to make a contrasting statement to this post ...because this post majes sense ..!
BUT....my blood levels of cortisol , were off the charts for a big portion of my life , judging by repeated testing of my blood regularily .Over , more than a period of trn years. And seems that was directly associated to my PTSD levels,accirding to 2 psycholosts and at least two psychiatrists . So one naturopath told of possible adrenal fatigue.
Have been dxed by osteopaths and MDs and psyche docs. Had a barrel of symptoms .
But current older MD ..using better concepts of healing , With heavey leanings towards more Naturopathic concepts.
Have more full days with heavey leaning towards my dietary concerns ..And prper supplementations.
More Traditional methods of AMA based medicine has been
geared to want to keep me sick, it has seemed to me .. basically give AMA following MDs a good rebular income.for themselves . Much healthy choices of medicine has appeared to be discounted, even recommended agsinst . Up to and beyond peoples dying from their methods ......disclaimer: IMHO
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Diagnosed hfa
Loves velcro,
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