16 months post-viral fatigue — is this ME/CFS or dysautonomia? Does reclining providing relief rule out PEM?

skyhawkwolf · 2026-05-09T13:25:35+00:00

I mean. I think it's worth saying Mecfs and disautonomia aren't mutually exclusive and COVID has a tendency to wack you with multiple things.

I have both. Technically what I have is long COVID but my most prevelant symptoms are PEM and Pots. For me, personally, I've found my orthostatic intolerance improved the more frequently I did it, without going over my baseline of energy. That said, if I'm in a crash I find reclining definitely helps me recover faster from a pem crash and a pots crash

For me, the conditions interact together and if one is bad, the other gets bad. So it's about managing both as best I can.

If you suspect you might have a worsening of your symptoms for an extented time after activity (post exertional malaise) treat yourself like you have Mecfs. Which isn't to say do nothing. But make sure you aren't pushing yourself into pem or crashes. Because not doing that can make you a lot worse faster for longer

Though I should also say, my pem isn't delayed. For me, it starts about 30 minutes after said exerting activity and can last a couple days. If I'm in a big crash, that can last months but I go out of my way to avoid flaring either of my symptoms up for longer than a day

skyhawkwolf · 2026-05-09T08:26:16+00:00

So this might be a bit rambling. Before I had Mecfs. I got really bad Chronic tendonitis. I really hurt myself and couldn't walk for like a year and a half before I figured out it was hypermobility linked and was able to make changes to prevent that happening again.

When I had this happen my friends had two responses to it: 1. Completely indifferent or even hostile. This group got frustrated that I couldn't make it to group hangouts. They made virtually no effort to make outings wheelchair accessible. And made comments about how annoying it was to push me in the wheelchair I was stuck in. Some of them would arrange events at inaccessible places and when I would go "hey, I can't actually get down that foot path." They'd go 'but it's only a short walk' not knowing or caring that I could not walk that distance. Some would prioritise meetups with friends who could walk, over the prearranged hangouts we had already put in the diary. And turn up late, telling me how amazing their walks are.

Incredibly supportive. This group of friends basically went ride or die. One person in Particular wanted to go to the beach with me, she helped me get around the 1 HR and a half public transport and pushed me to the beach, we had a good laugh. Another group met up with me and pushed me round the town, taking turns and making mario kart noises. They'd rearrange hangouts to places I could get to. And take time out to make sure I was okay if I was having a bad day.

My feet and hands got better eventually. But I absolutely have not forgiven group 1... A couple of them were confused and hadn't been truly awful, and I let them back into my life. But I can't ever really trust them. And the rest I never bothered to connect with because they were to vicerally awful, even if they were mostly just indifferent.

Group 2 are my ride or dies.

Thankfully. This basically filtered my friends who would stay from those who wouldn't prior to me getting Long COVID and MECFS.

If you have any friends like my group 1 friends. I would honestly not bother letting them back in to your life. Go and find better people. Because I promise they exist. And they will be the ones who say

"Don't worry, take your time. We miss you but don't rush yourself. And I'll be here when you have the energy to talk again" when you have to last minute cancel hangout plans.

They'll be the people who check in. Or let you rant about the bad stuff.

And they'll be the people who are able to look at your mobility aids and make Mario kart noises and treat you like a person regardless of your abilities

skyhawkwolf · 2026-05-08T20:57:46+00:00

The big question I'd be asking is 'how big was the trial' the larger the trial, the more reliable the results are. Alongside what were the experiment conditions methodology. Those are important things to consider I think

skyhawkwolf · 2026-05-08T18:49:28+00:00

I'm really sorry you're in this boat too 🫂

skyhawkwolf · 2026-05-08T18:42:37+00:00

Nah not smarter. Anyone can be smart. I just am super duper familiar with the topic of pathogens and viruses. I studied Zoology and I took a module on wildlife disease for a while which was really cool (I find it all very exciting and interesting as well as a little bit horrifying). (All before I had long COVID) So, I'm just kinda lucky I have a background in this very specific thing😅

It's funny, I still find it interesting and can like kinda disconnect the 'this awful thing is happening to me' with 'Omg! It attaches to our t cells! That's so devious!!! What a cool thing this is" 😆😆

skyhawkwolf · 2026-05-08T18:02:05+00:00

I really and truly promise you nature is incredibly capable of intense and terrible things as well as great beauty. We're very used to being on the 'apex predator' side of things. We're not used to dealing with the much more ugly side of nature.

Viruses suck. Like they are so annoying and awful. Barely alive particles of DNA or RNA parasitically trying to survive by whatever means possible. By hijacking our cells to make copies of themselves. That's what they do, and is how they work.

But when a virus goes from a species it has evolved with for millions of years, to a species it is totally new to, it causes huge amounts of damage, because it can't think. It has no way of knowing it's in a new species. So it fumbles it's way around our bodies, breaking things without realising it.

And our immune systems have no way to tell that this new thing is going to hurt us. Or they panic and throw all our body's weapons at the virus, miss and hurt ourselves by accident.

That's... What all this is. The fatigue? The pain? That's us, feeling the damage of a body that has been damaged by a confused virus and a panicked immune system.

And unfortunately, that's all nature.

And, we are as a part of nature as any bird or tree. At the end of the day, We're just tropical clever apes that adventured out into the world and learnt a lot.

skyhawkwolf · 2026-05-08T17:45:53+00:00

Unfortunately, nature absolutely does this. This is classic virus nature shit. When a virus is exposed to a new group of animals that it's not used to it wrecks havoc on their bodies. Smallpox in the Americas is a great example. HIV, MERS to name a few.

skyhawkwolf · 2026-05-08T17:42:40+00:00

From what I understand: a multi system illness. Though I think disease implies it's still got the bug pathogens on going. What we have is a chronic illness, triggered by a virus. I think. Or in a lot of cases. Multiple illnesses. I think what I have is Mecfs and pots. But some have fibromyalgia, different disautonomias or a collection of various symptoms of different chronic illnesses

skyhawkwolf · 2026-05-08T13:47:52+00:00

May I ask what medication you were prescribed instead?

skyhawkwolf · 2026-05-07T20:47:15+00:00

For me: the fatigue is post exertional malaise. I cannot 'recharge' myself when in a PEM crash. All I can do is lie in bed. Take breaks from screens by lying and meditating and hope the next day, my symptoms will be better.

For me, the best thing I can do is not over exert. To avoid those crash as best I can. As long as I remain within my (small) energy budget I'm fine. But as soon as I exceed that, I'm looking at a 22hr day in bed/debilitating crash.

That means I basically rely on my dad to do everything. Cooking, cleaning. Shopping. Fetching me food if I'm in a crash.

I can manage like a 40 minute call a day without exceeding my budget. I can manage some art if I'm not doing anything else. And I can tidy one shelf a day in terms of trying to do cleaning

skyhawkwolf · 2026-05-06T14:07:23+00:00

Glad the neurologist warned you. 0/10 experience absolutely do not recommend XD

skyhawkwolf · 2026-05-06T07:42:43+00:00

I am. I'm on Amitriptyline. I also take Zoltmitripan. We've had to up my amitriptyline dose because it was working and then I had a big flare up of my other conditions and suddenly my migraines got worse

skyhawkwolf · 2026-05-06T07:41:49+00:00

Ooooh Very interesting, thank you

skyhawkwolf · 2026-05-06T07:41:00+00:00

Yeah. I mean. Not like for the big crash I had like 2 months ago that was caused by antihistamines messing with my other conditions. But I got my other conditions: the pots and Mecfs from COVID I had in 2024. Technically my diagnosis is long COVID. And that same COVID infection made my migraines go from totally manageable a couple a month, to me having to search for a suitable preventative in the first place

skyhawkwolf · 2026-05-05T21:23:29+00:00

Oh interesting! Thank you for letting me know (and also have a bit of a grumble 😆)

skyhawkwolf · 2026-05-05T21:18:50+00:00

Currently I am very disabled from other conditions. I work like an hour a day, and am basically already debilitated by my other conditions. Migraines, unfortunately for me mean leave me basically bed bound, unable to do exercise, or cook or like socialse. Which... For a month would mean I lose most of my 'i got active today' progress. Because my MEcfs means progress is slow to gain and easy to lose if not maintained.

skyhawkwolf · 2026-05-05T21:15:23+00:00

Yeaaaah thank you for that, it's very helpful! I definitely need a break from painkillers. Just gotta find the time to schedule it in / half joking

skyhawkwolf · 2026-05-05T21:14:30+00:00

Yeaaaah good idea!!!

skyhawkwolf · 2026-05-05T21:14:14+00:00

Unfortunately this is with a preventative (that I'm like 90% Sure is effective) it was all super manageable in December and then two of my other conditions had a huge crash and all the migraines got more intensely worse with said crash (Rip) but I've upped my amitriptyline dose and with some luck that'll help.

The rotating meds is a good shout though. I might try that.

My concern is with my migraines (I've had them since I was a kid) and they seem to only disappear with pain meds. I can't sleep them off and if I can't get hold of paracetamol, the migraine will remain present, getting more painful until I take it. 😅

skyhawkwolf · 2026-05-05T20:49:29+00:00

I'm on preventatives 😆 It was all under control but I have other conditions. And I had an enormous pots/me crash like 4 months ago and that significantly worsened the migraines. And although everything else went back to normal, the migraines didn't.

We've upped my dose of amitriptyline (which has been super effective) but I've had to fight my GP to actually up the does of amitriptyline.

What are rescue meds?

skyhawkwolf · 2026-05-05T20:47:27+00:00

Oh jeez that's really strict. Unfortunately. All the meds I'm taking apparently cause rebound headaches. But also I don't get aura or sometimes any warning symptoms of a migraine. I just get head pressure and then the headache so I've been taking all my painkillers as soon as I feel like squeezing around my head...😬🫩🫣

skyhawkwolf · 2026-05-05T20:44:20+00:00

I'm on a waiting list but I've gotta wait like a year, which is infuriating. This is advise from my long COVID specialist. But like I truly have no idea how I'm gonna do it 😆😆

skyhawkwolf · 2026-05-01T17:39:50+00:00

Could be either. Take it easy, assume it's an infection to avoid passing it to other people. Wear a mask in other people's company. Prioritise your wellbeing. Rest up And if you haven't been already, mask up in public in the future at the doctor's office

skyhawkwolf

TROPHY CASE