My mysterious ME/CFS symptoms

Throwing these ME/CFS symptoms and oddities out there, wondering if you've faced them too or may like to hazard a guess - or share a hot take opinion - re what's going on.

In no particular order… Please note this isn’t about my core physiological symptoms, more about my lived experience.

Why do I feel (a bit) better later in the day?

I wake feeling rough as hell, but - on a good day - this slowly lifts through the day. I go from a 2/10 (but not bed bound) energy score to a lofty 3/10 or 3.5/10. Is this common? Is it the supplements helping, the body replenishing itself, or what’s likely at play?

Why do I faint easily?

My body doesn’t deal with physical challenges well, often going into a faint even if I’m not especially stressed about the event/challenge. Began when I was approx 10 years old - being bitten by my hamster and fainting after seeing the blood. I tend to faint or almost do when seeing my own blood, even if I’m not traumatised. The faints have continued into adulthood - when having Electrical Muscle Stimulation on shin splints (while laying done, when I had a stomach bug (sitting at cinema), even during talking therapy (sitting)!

Why is my energy crash (PEM) 48 hours after the event, not sooner?

Rarely, it’s sometimes 36 hours, but usually 48. I get the impression most people’s PEM arrives nearer 24 hours. I’m ‘moderate’ (housebound), with leaky mitochondria membranes, gradual onset, suspect lingering viral load on top of unaddressed burnout. Any thoughts re what influences this?

Please note: I no longer exercise (haven’t for many years) and I avoid going beyond my capacity threshold. I’m more talking about the false flag improvement that exercise seemed to give me in the ‘mild ME’ years, before I understood pacing, PEM and recovery.

And why do I feel much better for being active, before the inevitable energy crash (PEM)?

This was such a double edge sword for me! For years I thought I just had to train/exercise/move more - but of course I just went further downhill. Obvious once you understand PEM! What causes this initial uplift - is it the adrenaline, the lymphatic system clearing, the seretonine from type II fun being released, or something else?

Why is my body odour weird?

Sure, showering every three-fives days isn’t great, but even on shower and deodorant days my BO smells pungent, sour. Normal, for ME/CFS? Worth looking into with GP?

Why does my libido suddenly (very briefly) return?

Seems related to blood flow - suddenly my whole body feels more alive, warmer, more vital and sex (or something approximating it) becomes an attractive and viable proposition - rather than something that seems an imposition that I feel self conscious about. I’d rather have no sex than unsatisfying sex. This usual?

Why does my head (brain) feel under pressure, especially if I bend down?

Or if I turn my head to the side, up or down. It feels under pressure, as if inflamed, yet my MRI results suggested no inflammation. What could be at play here? Possibly Craniocervical instability I wonder, as I fit some of the cause/risk factors… Apparently NHS in UK does not recognise or treat this (anecdotal)!

Why does my vision flicker?

Sometimes on waking, if really crashed, but it’s more noticeable when I have regular PEM the light is very low late in the evening, often just before bed.

Why are my gums receding?

I’m 46, but my gums seems much older. Not sore or inflamed, no obvious sign of disease but they’re definitely receding. At such a pace that my teeth have dark stains, the tide marks of where the gum used to be. Possibly linked to mouth breathing for so many years.

Why do I have tinnitus when PEM’d?

Super high pitched, quite smooth and creamy, gently soaring. It’s been around for 10+ years, most noticeable when have PEM.

Why am I now sensitive to heat and cold?

Heat sensitivity being worse of course - as there’s no escaping it. My bedding and bedroom have to be at an exact temperature and for it to remain stable through the night or sleep really suffers. If I have an infra red sauna it takes about 90 mins to cool down, even sitting in my pants in the cool and having had a tepid shower.

Why do I get a headache when I move my head a little quickly?

Or step off a step a bit abruptly. If I throw a toy for the dog a bit hard. If I look/down up too quickly. It orbs at the crown of my head quite acutely, then sits there as a headache. I also feel a little nauseous and often quickly become brain-fatigued, sometimes necessitating sleep which is very unlike me. Can last a few hours, sigh. This can’t be normal?

Why does food get stuck in my throat?

Possibly unrelated, but pieces of food - just crumb sized pieces - annoying get stuck at the top of my throat, which I have to cough/hawk away. It makes the idea of eating in public a bit embarrassing, and it’s certainly a disgusting sound meanwhile. Is this just me??

Why does coffee give me mouth ulcers?

And why do I get a mouth ulcer any time I bit my lip - which happens way more when stressed or crashed/PEM?

Why does green or black tea give me a headache when I have PEM?

Yet coffee doesn’t - so it’s not the caffeine. I’m fine with nitrates. I don’t get the headache during times when my PEM isn’t so apparent.

Why do I (sometimes) see stars when I sneeze?

Fades away after a few moments, but it can’t be healthy!

Why did the Aciclovir anti virals work for three weeks only?

Three glorious weeks. It was like I shedded a layer of skin and the ‘real’ me was just beneath - I became semi functional again, I could enjoy my work, enjoy a film without it being an effort. Did any latent viruses adapt? I have suspected long-EBV (Epstein Barr, aka Glandular Fever) and long-HSV (Herpes Simplex). A health practitioner has suggested I don’t take the same amount of Aciclovir daily, but pulse the dosage and with breaks between.

Why am I so quick to frustration, anger?

Honestly, I’d be embarrassed to see a video of me having a hissy fit over some inane thing that’s unnecessarily impeding my progress. It’s usually around an injustice, and especially common is a failure in a digital workflow/UX/logic that sets me off. A sure sign I’m in or going into PEM. It’s not pretty; I’m really exasperated and angry, a raw incredulous frustration at yet another needless challenge for the camel’s back. It soon passes and then I feel shame, guilt, embarrassment. I have to apologise to my partner, and the trembling dog. The cat of course does not give a shit! But all the same, I do not like being this way and I know it’s pummelling my nervous system and elevating stress. I never used to be like this.

Why does sound become shrill in my ears when going into PEM (but not once crashed)?

My hearing is fine for days/weeks (even if my brain can’t really be bothered with trying to enjoy music, my CD’s can lay un-listened to for years), then suddenly any sound agitates the inside of my ears. It’s not painful, it doesn’t ache or sting, but it’s hyper-sensitive and uncomfortable, as if the nerve equivalent of nails on a blackboard. It’s worse if I’m at all dehydrated, sleep deprived or not breathing well, but these usually goes hand in hand with PEM. I’m so lucky that this isn’t happening to me full-time as does for people with severe and very severe me. It’s only when going into PEM/crash, not once I’m in it, unless it’s a really bad one.

Why does using a computer or phone cause RSI-like pain?

For 20 odd years I’ve had computer-based jobs, often quite intense keyboard usage across long working days. About 10 years into this I developed pain in my forearms, wrists and hands. Feels like the fascia, tendons and muscles are overworked, inflamed. Yet no damage showed up on a MRI. Diagnosed as a form of RSI, but that was just throwing a label at it, rather than being proven. Cutting out wheat and dairy, even alcohol, made no difference. The only things that help are to absolutely minimise computer usage and rolfing (deep fascia massage).

Why does a half glass of wine give me a hangover before I’ve finished it?

I love a rich red wine or a tasty beer or cider, but they do not love me. A few gulps in and I’m feeling extra groggy, mildly poisoned. It’s like I skip the tipsy phase and go straight to the hangover.

Why are my symptoms a little improved when exiting a mild bug?

Once I’m through the worst of a mild bug - one that’s not laid me out (which is rare) - I actually feel an improvement in my ME symptoms. Energy, capacity and cognition are all a little improved, which lasts a few days. As if my immune system has been woken and things are less dysfunctional. I’ve felt this way even after each of the four Covid exposures!

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Please ‘wade in’ (politely!) in the comments - your hot takes are welcomed, encouraged even!

Thanks.