Quick definition:
http://en.wikipedia.org/wiki/Exercise_intolerance
Yeah, I know, I know. Heard all the jokes. Choose option 7 if you must, and leave the other options free for serious responses. Please? I'm curious to see how many Aspies have the same issue. Note that I split the poll into two age groups. This is because you're more likely to get noticable symptoms as you age. I'd also like to split it by gender etc., but that would get ridiculous, fast.
My problem (as I thought) started just a few years back. Though I'd actually been increasingly fatigued for about 10 years previously, and was being repeatedly tested for a thyroid problem (my GP having no better ideas). Well, my Mum has severe hypothyroidism , and I was starting to get all the same symptoms (fatigue, cold intolerance, putting on weight) so it didn't really seem like that big a mystery. Neither was it very surprising that the NHS was missing it.
Then, about 5-6 years ago ago, I noticed that my calf muscles often trembled, just as if I was over-exerting them , whilst I was out walking. There seemed no chance I was really overexerting them , as I've always walked slowly, had slowed down even more, and I was really minimising on walking by this time.. I didn't really connect it these tremors with the fatigue, because...well, basically because I'm an idiot, I suppose
At some point in time, my Aspie habit of single-mindedly carrying on with a job until it was finished somehow got replaced by a habit of leaving everything half-done, and taking frequent breaks. I was surprised by this alteration in personality, but didn't think about it much, just vaguely surmised that I was getting ridiculously lazy.
I had a big escalation of food intolerances and various other issues concurrently, I should note. And the whole lot just gets worse and worse. But for this post I'm just concentrating on the exercise intolerance.
I should also mention , though, in this context, that I was getting so fatigued at times that I would sleep for up to 16 hours per day, and feel pretty woozy whilst awake. This occurred in episodes , lasting up to three days. Now, I was familiar with this, as it used to always happen following a gluten reaction. As I was now on a gluten-free diet, and I wasn't getting those reactions any more, I initially thought I was repeatedly coming down with a virus. As I often had aching muscles, and other fever-like symptoms at the same time, that was very plausible. But as it came to recur 4-5 times per month, every month, that started wearing a bit thin.
After a few months, I noticed that I now often stumbled whilst walking...even on a perfectly flat surface. On paying a bit of attention to my feet, I realised that sometimes one foot or other was failing to pick itself up, as expected, and dragging. This was causing the stumbling. I accused myself of extreme laziness, and tried willing myself to pick my freaking feet up.
It next transpired that these stumbling incidents, if I went on ignoring them, would be followed by such violent muscle spasms in my calves that I would sometimes lose my footing completely and fall to the ground. This was way beyond any symptoms my Mum was getting on account of her dead thyroid gland.
At this point, I figured I'd best raise the muscle issues with my GP. I got tested for all sorts of things, all negative, and was referred to a neurologist.
As luck would have it, I got an aggressive, arrogant neurologist who refused to believe in any of my symptoms. She gave me a brain scan, and a 1 hour EEG test just to prove to me there was nothing actually wrong with me (she made that much clear) and then told me it was all in my head Later, it transpired that she hadn't even looked at the results of the brain scan. Dunno about the EEG.
Not that the brain scan showed anything especially relevant, but it did show something totally unmissable...a rare pituitary lesion called a craniopharyngioma, which will eventually need to be operated on. But right now, they think it's too small to be causing any of my symptoms. I might quarrel with that (and one later neurologist actually did quarrel) but since a much better explanation has now emerged, I think they're probably right.
Shortly after that fiasco, I was informed by a friend that I was actually losing consciousness during some of these falling episodes (the two where he'd been present); and that it looked for all the world like an epileptic fit. Why the heck hadn't he told me? Well, it hadn't occurred to him that unconscious is unconscious. He thought that, somehow, I already knew.
Of course, I could barely look after myself by now, let alone work, but I had my benefits stopped on account of that neurologists opinion, and spent the next two years fighting that decision in court. That's one reason why I haven't been seen on any of the forums. Too depressed by all that. The most depressing thing of all was that the investigation of my illness had ground to a total halt, because “refer to neurology” had been the only idea that my GP had left. So it seemed like I was destined to die a highly uncomfortable death on the streets, before anyone acknowledged I was genuinely sick.
But back to the symptoms:
By now it's very clear to me that those muscle spasms are usually triggered by exercise. Not just walking, but any light exercise if too prolonged. On a good day, I can manage 30 minutes light housework, or similar, before needing to rest. On a bad day, I'll often get a tell-tale trembling in my jaw, the moment I get out of bed.
Also those episodes of hypersomnia can be, and frequently are triggered by exercise. But that's a sneaky one. It will usually start later in the day, or even the next day, after i've overdone it a bit. These past few months , it's been tediously predictable that I'll sleep and sleep, following any trip to the supermarket; even though I now get a lift both ways, use the trolley for support, and am otherwise as careful as can be not to tire myself. Beyond using a freaking wheelchair, I don't know how much more careful I can be.
Most of the rest of the time, I can avoid over-exertion by pacing myself. Which means, in effect, that I'm seldom very far from my sofa
. When I prepare a proper meal I do it in stages, because I'm slow and clumsy, besides needing frequent rests.
I don't even need to actually feel fatigued to trigger the belated backlash, so it's not very easy to guage my limits. Especially not as I'm, constantly needing to revise those limits.
I also get a lot of other , erratic, muscular symptoms such as cramps and tendonitis ; and a bunch of other neurological symptoms. Sometimes I wake from my sleep with every muscle in my body feeling sore. And I've actually pulled muscles in my sleep a few times (in my back, and my shoulder) I strongly suspect that I sometimes get seizures in my sleep. But nobody is ever there to observe this.
Anyways, that's my experience of exercise intolerance. As you probably gathered , I eventually got the NHS to take an interest again (with help from my sister , who took a video of my walking difficulties. That's what it took, to prove it wasn't in my head). And in the meantime, I heard about a link between Autism and Mitochondrial Disorders. On following that through, and reading and reading and reading, it became pretty obvious to me, that do have an underlying metabolic disorder. I've even got my latest neurologist to refer me for investigation.
There's an “extremely long” waiting list, however. Knowing the NHS, that probably means that I'll be dead before I reach the head of it. But I do intend to hang on, grimly.
That's why I put that poll up here, because of that link with Autism. The symptoms of MD can vary considerably betweeen affected individuals. It's not one disease, after all, but a growing number of similar diseases , currently numbering 1000 or so . Exercise intolerance is the most common symptom across that spectrum.
It needn't be this severe , ofc. I've been looking back over my life, in this light, and it's blindingly obvious that it's always affected me to some degree.
I can see now that this would be why, as a child, I would walk along excruciatingly slowly, stopping to stroke very cat, and peer at every puddle, and every tiny flower growing between the paving slabs. More tellingly, this would be why I had (alright, still have) frequent “absence seizures”, especially whilst walking along, so that I'd cross roads entirely unconsciously, with predictably dramatic consequences, Not that anybody realised. They thought I was simply “dreamy”. And when I figured it out for myself (during my teens) I kept quiet, because I didn't want to be given anti-seizure drugs. Besides, it seemed harmless enough .(though if I'd thought to join all the dots, and connect it with my notorious road-crossing episodes, I might have been forced to reconsider that)
Ironically, although I finally have been prescribed anti-seizure meds, and was finaslly willing to take them, I've had such severe adverse reactions to them that I've had to stop taking them altogether. I figure I'll survive a lot longer, and a whole lot more comfortably if they stop messing round with my body like that.
Also ironically, it's still in my medical notes that “epilepsy was investigated and ruled out” . This proves a bit of a problem at times (bureaucracy being bureaucracy). I've asked to have it re-investigated, but my neurologist said: it doesn't matter what's causing the seizures; it only matters to find the right drugs to control them. Huh. I think that translates to “The NHS just doesn't have the funds to be arsed that much”. However, I still rather dread that my next neurologist might be just like my first. And I think it's really unfair that I failed to qualify for a disabled person's travelcard, on account of not having epilepsy, nor any other condition that would qualify me.
Meh. The travelcard wouldn't be much use to me, because walking to the bus stop is too damned tiring. But it makes me wonder what else I might fail to qualify for.
If you want further info on fatigue, exercise intolerance and MD, the following article seems pretty concise and informative:
http://www.mitoaction.org/guide/fatigue-and-exercise-intoleranceIf you want more scholarly articles, I'm sure you can find them for yourselves. (been there, done that, buried all my references under heaps of digital garbage *sigh* )
-Walkie
Poll