I don't have the flu

[alias_sqbr]

Oh yes: saw the doctor today, she agreed that chronic fatigue syndrome is the most plausible explanation for how I've been feeling for the past eight (!) years or so. Didn't offer any solutions beyond "don't overtire yourself" and "have you tried meditation" but never mind. At least I can be a bit more confident in my diagnosis than "I read up about it on the internet and it sounds right" (I did have another doctor suggest it, but his reasons were pretty spurious and debunked by a brief google)

Turns out the tests my usual doctor did (today was me seeing the results) were mostly for different types of influenza virus. Today's doctor was politely incredulous: even I know that the flu makes you intensely sick for a short period, not intermittently sick for a long one. Other than having immunities for every respiratory virus ever(*) I am apparently in 100% perfect health, yay me :/ (that's what they said after my coma, too, with embarrassed looks on their faces)

(*)Well, ok, I got a bit lost during her synopsis, but I got the impression I've had quite a few. Which certainly fits with my experience... Also I don't have nasty things like Ross Rover virus, which is nice to know.

Comments

[lauredhel.livejournal.com]

Nod, nod. I'm sorry to hear about the diagnosis (but paradoxically somewhat happy for you, in a way, if it does go a small way to helping you face and deal with it).

Your doctor's suggestions aren't that far off the mark, unfortunately, so long as everything else treatable has been excluded. "Don't overtire yourself" is way, way more complex than it sounds :) Pacing is one of the really key aspects of self-management, but you've probably figured that out already. That, and not succumbing to the Guilt/Shame/I'm-Useless Monster.

thankyou

[alias_sqbr]

Oh, I know. Especially since my energy levels go up and down unpredictably, and if I rest too much (whatever "too much" happens to be that day) I have trouble sleeping.

not succumbing to the Guilt/Shame/I'm-Useless Monster

And thus, we blog :)

[stephbg.livejournal.com]

This all sounds very familiar. I even had an HIV test back in the 90s I think. That was a straw-grabber.

[alias_sqbr]

Hey, at least it was negative :) But yes, every time I get tests I have this weird state of "I don't want to have any of these nasty illnesses, but on the other hand it would be nice to have any diagnosis"

[emma-in-oz.livejournal.com]

try talking to bardiegrub who suffered through it and as reovered

hugs on the diagnosis

[alias_sqbr]

Thankyou. Though, um...who's bardiegrub? She's one of the "people who pop up on the ljs of everyone I know so I probably know them in real life" who I haven't figured out yet.

[emma-in-oz.livejournal.com]

Sandy - She'll be at femmecon

[alias_sqbr]

Ah, cool. Thanks.

[lilysea.livejournal.com]

Hmm, interesting.

I would find that quite frustrating "Grrr, Aaargh, Just Fix It Now!"

[alias_sqbr]

Oh, trust me, it's frustrating. But I've been having this my whole life (the fatigue is "new", the being constantly sick is not, though the severity varies) so I've kind of gotten used to it, what's annoying is when I talk to a new doctor and they decide it can all be fixed by something random like nasal spray or green tea.

[lilysea.livejournal.com]

Yeah, every time I tell my counsellor I'm tired she's all "Well, just exercise, then!"

[mandragora2003.livejournal.com]

...Thus reminding me of a joke.

How many physiotherapists does it take to change a lightbulb?

They don't throw out the dead bulb at all; they give it exercises, and know that it will be working better the next time they see it. (apologies to any physios who might read this; the doctor-version was even worse)


Don't worry sqbr; chronic fatigue is one of those diagnoses that we don't understand, can't treat, but *can* manage. And, as mentioned above, will often go away if given a bit of time. Lots more to say, but tends towards the boring doctor ramble.

[alias_sqbr]

I am always open to your doctory ramble, from one doctor to another :)

[mandragora2003.livejournal.com]

PS; I love your icon, lilysea!

[alias_sqbr]

Ahaha, yes, I've had the "The solution to you not having the energy to leave the house is more exercise" suggestion on a number of occasions :/

[seaya.livejournal.com]

Did they check your ANA and other auto-immune indicators?

Also, you may want to look into some alternative medicine on this one.

[alias_sqbr]

Hmm. I think so. Something immunity related, anyway. I mean to try to find a more specialied CF dr and get them to methodically test for everything that's left after checking my records.

I was discussing it with a very alternative medicine-y friend last night (though he was a bit smug about my prospects, I think if it was that easy it wouldn't be a chronic illness. But he's smug about everything) and have been meaning to ask the fine folk at cfids_me what if anything they've found effective.

[seaya.livejournal.com]

Well, alternative medicine can also be about pain management. I didn't really think you could get rid of it. But managing it better and relaxing could be good.

[alias_sqbr]

Oh, yes, I didn't mean to be down on alternative medicine in general, he just annoyed me enough with his general annoyingness that it spilled over into my reply :)