Asperger's and Adrenal Fatigue/CFS

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Hi everyone.

I was wondering if there are any other Aspies who suffer from Adrenal Fatigue or Chronic Fatigue Syndrome (CFS)? Having spent 27 years trying to be "normal", I've literally worn myself out, and have only just realised it's probably due to AS and tendencies such as getting upset over "nothing", pursuing my interests to the exclusion of all else (y'know boring things like eating and sleeping), and the intensity of fear and anxiety that we all feel coupled with that cursed memory that won't let us forget them in a hurry... as well as all kinds of food, drug and environmental hypersensitivities.

So yeah, my adrenals are shot due to a lack of sympathy, support, guidance or diagnosis during my school-life and my many misunderstandings with medical professionals since. Consequently, I'm stuck with a brain that won't switch off and a body that, most days, can't get out of bed.

Please tell me I'm not the only one?

Hi,

I have a diagnosis of ME/CFS although I was recovering from PTSD at the time.

The CFS is better now that I'm over the worst of PTSD, but it certainly isn't gone.

It's interesting you mention adrenal issues.

I do have issues with regulating adrenaline (which isn't quite the same as an actual gland thing, I appreciate) in that I either get 'hyper' in a very 'fight or flight' way and am prescribed benzos for this. The symptoms cause severe anxiety, palpitations, tachycardia and racing thoughts and the benzos are the only thing that help, and even with those I've had to go to Accident and Emergency recently because the tachycardia was so persistent.

And then other times it's as though there is nothing left. Like I used all my 'energy' for the week in one go and there's no 'juice' left.

I also find that there is a link with my hypoglycemia and managed to find some clinical studies on this too. I'm seeing a digestive specialist tomorrow so I'll mention it to him (might not be relevant, but won't hurt to mention it) and am due to see my neurologist soon, so if I do find out anything interesting or helpful I'll let you know.

google gluten intolerance, this may be the cause of it.

reclaim your life and help your AS.

I get so little done these days. I don't know the cause.

Hi girl7000,

I completely get where you're coming from, although I don't take any meds for my symptoms. I'm very 'fight or flight' most of the time now, and even things like a knock at the door or the phone ringing make my heart race, legs go weak etc. I also understand about the 'no juice left', and these days end up with an empty tank from doing very little.

I was sorry to hear about your PTSD - maybe aspies are more susceptible to this? I do hope the appointments with your specialists go well. It would be interesting to hear what they think.

VJ.

Been there, done that thanks. Have had an intolerance test (116 food items) and eliminated *loads* of stuff from my diet which improved my digestive symptoms to a degree but fatigue, if anything, is worse than ever. It was the nutritionist who ran the cortisol tests and found the adrenal fatigue.

I just had a blood test for cortisol this morning. You have to get up early

Yes I have always had fatigue. I believe it is sensory plus adrenaline (but not necessarily abnormal levels). My very earliest memories I complained fatigue. When I was a kid I was not good at understanding what was going on in my body, so I incorrectly described it as joint problems.

Ironically I am very fit and do martial arts twice a week but it doesn't stop the fatigue.

Coping strategies: Scolding hot showers. I always sleep with contorted limbs, or with my limbs under myself so they cut off my circulation, thus producing endorphins. These are very temporary, and need to be maintained.

As for fight or flight. I have done a lot of work on this. Certainly my conscious mind no longer responds every time because it is like crying wolf. But he physical effects take it toll on me because it all the time.

Last edited by 0_equals_true on 26 Aug 2009, 5:32 am, edited 2 times in total.

One of the main problems I’ve have had with fatigue is getting doctors to take me seriously. Especially being a man. I basically decided it wasn't worth the hassle. My current GP is good, I am ok about asking for solutions, but not interested in contesting it. All I'm interested in is the mechanics and physiology. She agrees with me that sensory is probably the major factor involved.

The only reason I pursuing it now is I need clarity now, and any distractions compound my executive dysfunction.

I have been on GFCF for 2 years. I hasn't stopped the fatigue. It has helped me become healthier over all.

I'm dx'ed with CFS. I mostly have the low blood pressure problems and cognitive dysfunction.

I do think/feel like I 'broke' some part of the stress-regulating-system of my body/brain. It started during a time when I was intensely trying to 'normalize' myself. The stress was insane, but I kept trying to be tough about it until I couldn't function, cognitively or physically (took about 10 years). 30 point IQ loss, and couldn't stand up for more than 20 minutes without tunnel vision and passing out. And of course a lot of disbelief from doctors, until I argued them into doing the right tests, which got undeniable results (sheesh).

I've been on disability about 5 years now, and am in a lucky situation where I can really relax and more or less withdraw from the world. That's seemed to make a big difference in getting some actual recovery, but it's slow. OTOH, it's not making me broke like all the doctors' 'cures' did. I haven't felt at peace like lately for about 30 years.

About the food intolerances -- ditto there. I have reactions to a lot of things, but have them mostly sorted out now. Not a cure, but defintely helpful.

No, doctors will jerk anybody about, given the opportunity. I've come to the conclusion that if you're over 16 and under 40, no relationship and no kids, then you don't stand a chance in the NHS. It's like, "The only person who is suffering is you, so what does it matter? You're not even in pain." And there's no definitive blood test to rank you on some sort of Tiredness Chart.

After telling my GP for like 9 years about how tired I am all the time, I came across a private company who do cortisol testing through a lab in Oxford. Staggered into my GP's (I'm barely able to walk these days) and handed her the nice little graph and she looked totally panic-stricken. 'bout time. Doctors respond to numbers better than anything you could ever say. The fact that you're sitting there in front of them, clothed and speaking, suggests you're not that bad so they can ignore whatever you claim to be wrong. Likewise, when you're so ill that you're bedridden and you don't see them for months, they assume it's because you took their advice and you're feeling much better and getting on with life, and they were right all along.

If you're young, it's lose-lose because they really don't give a monkey's about quality of life in this country.

It's not a real / recognized medical condition it's more of an alternative health woo.

as much as the described symptoms than not at all.

Hi everyone! An all too common story. Doctors can't be bothered acknowledging the reality of ME/CFS....too much like hard work....to really research it I mean. As they like to believe they are experts on health they are eager to dismiss us as malingers, liers,etc.
I did have a good doctor who referred me to an Endocrinologist who did very basic tests that revealed zilch. However, he said maybe I should visit a sleep clinic .... which I did.... results; no REM sleep= no restorative sleep +restless legs. Prescribed ropinerole which has helped a bit.
Found another doctor who was brave enough to prescribe DHEA..... helped substantially for some years.
NOW: BIGGEST RELAPSE EVER. FOR LONGEST TIME.

Awaiting results from tests on Adrenal, thyroid and mitochondrial dysfunction.

Where there is hope there is life!

Have had heaps of NEW SITUATIONS Recently.....moved from Melbourne (OZ) to a rural life in North-East Victoria. Difficult starting from scratch with NT people, energy draining that I reckon brought on the relapse.
Am very drained and on looking back into family history there are too many coincidences.My bedridden grandmother.....supposedly from rheumatoid arthrisis ( true but I feel not the only thing) seems to have lived a life not unlike my own. One of her children, would nowadays be described as Aspergers Savant, also developed R. Arthritis to a severe degree. My father yet another story...... died at 62 and worn out from life. Adrenal Fatigue?! Relatives with other autoimmune diseases....sarcoidosis, and Aspergers.

Am a recluse now.... told others that it is due to relapse but they don't get it.Think I'm rude or weird. The latter Yes! Am not up to coming out about Aspieism. So remain misunderstood, and JUDGED.
Wonder if there are any Aspie GPs in OZ?! Preferably with ME/CFS also!! !!

I've got adrenal failure. Y'know, the stuff that puts you in bed for 8 months with your hair falling out and weight falling off you and leaves people wondering what the blazing eff happened to the bouncy energetic person they USED to know, until you get diagnosed by going into shock by either puking or having a routine blood test. Or puking on the way into shock from a routine blood test. Thank Darwin for endocrinologists on call.

Prednisone for life, yo. At least for my life. Won't go anywhere without it.

Honest to goodness broken adrenals are nothing like the internet descriptions of 'adrenal fatigue'. I don't wish broken adrenals on ANYONE.

You're not the only one. That diagnosis is part of the mix of stuff that my disability was awarded for.

My mum has CFS/ME, (last 15 yrs if not a bit more). It still infuriates her that people don't think it's real, or hijack it to peddle snake oil "cures".

Her short term memory is shot, she can no longer read a map, temperature regulation gone, immune system virtually non existant (she has had pnuemonia resulting from catching a COLD), whole host of neuropathies. It was so severe it was suspected as MS at one point, and like a real life episode of House, no end of other things had to be ruled out before they gave up and called it ME. Problem is, she was an orthopedic nurse and then a senior physiotherapist, she has no patience for her condition, and described the ME support group as full of "Munchausens, amateur poetry and self pity"

I think the irritability is part of it, I'm sure she used to be more tolerant.