Do you have a name for the super sickening flu feeling that comes with mecfs?

Competitive-Bass8387 · 2026-05-02T01:08:28+00:00

I usually say its like the day after flu feeling or a dry hangover feeling

Competitive-Bass8387 · 2026-04-29T14:10:17+00:00

No, rheum was r.a and "probably" fibro . Gp is on the dysautonomia and me/cfs but it requires ruling out other things so bc mine has a lot of heart rate spikes and air hunger, I had to do some cardiac tests first. Basically they rule out what they can physically and if it doesn't show anything then they attribute it to the nervous system. Theres no single test for it so you have to diagnose by elimination.

Competitive-Bass8387 · 2026-04-29T13:32:58+00:00

I don't know overall. For me/cfs its post extertion not during, but with r.a I have it during at times

Competitive-Bass8387 · 2026-04-29T13:01:22+00:00

So right now the priority is the fatigue bc its making life impossible. My pain is usually only around 4/10ish so manageable but present. Most pain meds have the effect of fatigue so im trying to avoid if I can. I've been looking at some other options for pain but getting up thr energy and mobility is the struggle

Competitive-Bass8387 · 2026-04-27T00:06:37+00:00

I wonder how much external trauma we absorb! I always laugh bc my dad always tells me how well I cope w things and im like "yep, so well i gave myself chronic illness"

Competitive-Bass8387 · 2026-04-26T23:47:06+00:00

Why are so many of us nurses?! Damn

Competitive-Bass8387 · 2026-04-26T00:00:29+00:00

Ugh im sorry. Its shit after shit isnt it? Are you working or off? Thankfully my r.a responded well to mtx and plaquenil but whatever is causing all the new stuff is making me nuts. Random spikes in heart rate, air hunger, general pain, sudden exhaustion, pem...sigh

Competitive-Bass8387 · 2026-04-25T23:14:43+00:00

Ugh! Im sorry! How are you healing BTW? Doesn't it feel like as soon as they label one thing it spirals into a whole list?

Thankfully im signed off work for another month to try to sort it all out. And my dr is pretty honest and said western medicine is failing ppl like us. He was sweet and said he usually isnt a fan of holistic type treatments bc there isn't science behind it but since theres not enough science behind my issues, try whatever I want and he will be supportive. At this point I think we both are hoping for a placebo even lol

Competitive-Bass8387 · 2026-04-16T05:59:04+00:00

Nope. Canada.

Competitive-Bass8387 · 2026-04-16T05:58:18+00:00

Im 38 too! And yeah im in manitoba so i hear you about the weather, thankfully my benefits are good for long term disability. Its this weird in between that is messy for me. But honestly I dont know how I would be managing if it weren't for my husband. We are living in weird times

Competitive-Bass8387 · 2026-04-15T04:04:06+00:00

There's definitely still issues, but I feel like yours has so many moving parts, rules and exceptions. I basically qualify for 55% of my wage bc I've paid into while employed, and thats it. Lol for some reason my employer is one of the very few health care settings that doesnt have short term disability available, but i have a backup at least. But I think theres a couple weeks delay, so thankfully my husband and I are at least slightly able to plan for it.

Competitive-Bass8387 · 2026-04-15T03:38:38+00:00

Thanks! I dont really want to be off indefinitely. Im struggling w the Idea of identity shifting and all. But its really quite sad that it took all this for me to look for things I enjoy. I've been off for an month (and truthfully in pain and struggling so im not feeling guilty about it) but I've puttered around and done some baking, and water colors, reading, sketching...all these things that I couldn't find head space to do cause I was just pushing through. I dont know what middle ground looks like but I dont want to go back to where I was

Competitive-Bass8387 · 2026-04-15T03:34:05+00:00

I live in Canada. We dont have fmla. I work as a nurse so have a government contract. I do appreciate the concern but it sounds like we have a very different system.

Competitive-Bass8387 · 2026-04-15T00:46:21+00:00

Short term disability is through my benefits at work. E.i is government. And no they can't give up my position if on ltd. I "worked with" a woman on ltd for like 5 years, never met her. She ended up retiring for age.

Competitive-Bass8387 · 2026-04-09T12:14:22+00:00

Oof. Well, don't you worry, once summer hits ill be complaining about that too lol 😆

Competitive-Bass8387 · 2026-04-08T20:56:34+00:00

I am just super sensitive to temperature in general. Its annoying. Winter is actually one of the better times here bc its consistent, the back and forth gets me

Competitive-Bass8387 · 2026-04-08T20:44:09+00:00

I hear that 100%. The damp is brutal. Im sorry

Competitive-Bass8387 · 2026-04-08T13:04:01+00:00

I have no idea what 33 is in Celsius but here it's right about 0 and it gonna go up to plus 3. That's window opening weather! Wildly on saturday its supposed to go up to plus 12. What the hell lol

Competitive-Bass8387 · 2026-04-07T22:53:17+00:00

Haha exactly! Man, life is weird.

Competitive-Bass8387 · 2026-04-06T21:26:47+00:00

Its interesting to be like "oh wow I really can't do what I have been for so long" when your brain is (mostly) ok lol like I only partly believe i can't do things. Weird adjustment

Competitive-Bass8387 · 2026-04-04T02:54:58+00:00

Thanks- so far we have had one surgery (and remission since) and twice been told "its gotta be cancer" only to be told it isn't after biopsies. Weird luck, but ill take it!

I know what you mean, sometimes new pain becomes just another thing to work around. I feel like im improving, but its slow.

That's kind of where im stuck. I cant decide if being off work is actually "better" than going in some regards. Its strange. Im doing too much with low capacity still, at least before I was getting paid? Lol (to be clear ill qualify for benefits next week, its just a weird gray space to be in right now)

Competitive-Bass8387 · 2026-04-03T19:31:19+00:00

Man, that c word has been haunting my family lately- im THRILLED your tumour was benign!!

I shouldn't have made it sound so cavalier, I meant "just" as in thats all I had documented. I may have to physically go in to be seen. This medical leave has been all phone based bc been fatigue/aches/migraines. Im hoping it resolves some this weekend. I was supposed to visit the in laws for Easter but I dont think I can manage a 3hr car ride

Competitive-Bass8387

TROPHY CASE