u/AlteredCactus

from the start of my LC I’ve been struggling with something that i thought was fatigue, but never quite felt tired.

if i am upright for too long or walk for too much. i begin to feel a strain in my back and front ribs that compels me to lie down to relieve it. the more i ignore it the more it will likely become more malaise-y, burning, myalgia etc.

reclining usually provides immediate relief and much of the time it will rest tolerance somewhat.

in my case pots and orthostatic hypotension have been excluded.

i should add that i can get similar symptoms from cognitive effort and screens.

if i try any strenuous exercise I will very quickly feel unwell in a way that is hard to describe.

but i also wouldn’t say i feel fatigued. or maybe im wrong. this thing is driving me insane.

perhaps it’s just sympathetic over activation here upright or active?

I’m nearly 17 months into a post-viral / long COVID–type condition.

From the beginning of this thing i’ve lived in fear of sudden deterioration like “I played basketball for a season and then one day after a hike im bed bound” i’ve seen in reddit!

Timeline:

\- COVID in Aug 2024 → only mild burning sensations initially

\- Working more than usual from September onward.

\- In Nov had 2–3 viral infections

\- About a week later: sudden, intense malaise episode

\- From the next day: clearly reduced capacity (in hindsight likely orthostatic intolerance rather than simple fatigue)

\- Gradually worsened → worst point late Feb

\- Started improving again from early May

Have followed a pattern of maybe a couple of good weeks and then a month of “dip” with worse symptoms, and capacity reduced somewhat.

Symptoms

The first thing i noticed was my legs feeling less strong than usual and in a week i was getting this weird tension in the back with inner revving which mutated but my back had remained the main way of expressing ‘too much’.

i think i have always had orthostatic intolerance leading me to lie down to relieve symptoms rather than obvious fatigue.

I usually get quick feedback with physical activity and if i push through the back, myalgia, and a general hyperactivation, all
increase.

i’ve had all sorts of weird types of malaise.

A lot of the noise cleared over time, but my capacity has only marginally improved in 17 months.

I offer professional services through zoom for about 4 hours a day now as opposed to 2 at my worse and 6 before the illness.

At about November i started to lose some screen capacity with more sharp pains in back of pushing too far.

One more context piece:

I’ve been seeing Dr Paul Jenkins in london who says that in their experience (over 3 decades of CFS and now 2000 LC patients), 95 per cent of people eventually recover to something like 90–100% (i think he meant LC).

I’ve never fully known what to make of that, and honestly I’m surprised by how slow and non-linear my recovery has been given those kinds of expectations.

i recently had my longest dip (or pem?) of 9 weeks after a couple of quite good weeks.

Now:

i then had another two weeks during which i was very mindful of physical activity and focused my energy on work and then in the second friday i had a sudden exarcebation of symptoms which shocked me. this confirmed my terrible few of silent over exertion.

the next few days ive deteriorated and now feel in some ways back to symptom quality over a year ago. i’m still managing the same level of work but it’s been a week and it’s become a bit harder due to symptoms. i got a couple of days of uninterrupted fluey malaise which is rare for me as usually reclining eases symptoms at this stage. then after a week a switch was flipped and the bulk of the malaise and myalgia was relieved. i still haven’t recovered my orthostatic tolerance as i get my back symptoms with much less activity.

Main question:

\- is silent over exertion a thing?

\- Have people with similar trajectories slipped into cfs?

Hi all. Looking for perspectives from people with similar presentations on diagnosis and prognosis.

Background: I’m a 45-year-old male, 16 months into post-viral fatigue syndrome following COVID in August 2024, with the acute onset in December 2024 after several further viral hits. I’m under the care of an experienced specialist who has seen many LC patients and believes I’ll make a strong recovery. However, my experience of my condition and general distrust of doctors makes me quite cynical especially when he claims that 95 percent of patients in his practice make a complete or near complete recovery (although recently it has sounded like he is saying I will have to pace forever which is confusing).

My pattern: I’ve never been bedbound but have had significant functional reduction. My work involves regular professional contact online sessions and I’ve been managing 15-18 per week — my pre-illness baseline was 24-28. I have recurring “dips” lasting 3-9 weeks, the most recent being 9 weeks, separated by better periods of 2-3 weeks.
Dominant symptoms: Orthostatic intolerance — back bracing, leg heaviness, pulling sensation when upright. Malaise rather than fatigue as the dominant symptom. No brain fog apart from finding difficult to remember things in the moment.

The question I’m wrestling with: My symptoms consistently ease with reclining and worsen with upright time — same day, real-time postural responsiveness. This has been used to argue against ME/CFS PEM. But my dips last weeks and seem triggered by cumulative exertion load building silently rather than individual activity events. Could these prolonged dips be a form of PEM even though reclining provides same-day relief? Or does the postural responsiveness definitively point toward dysautonomia rather than ME/CFS?

On prognosis: My specialist is optimistic. But 16 months in with dips getting longer rather than shorter, and a recent significant deterioration after my highest ever professional contact week, I’m genuinely uncertain. Has anyone with a similar presentation — OI dominant, reclining relieves symptoms, long dips — recovered substantially? Or found their baseline gradually lowering over time?
Not looking for reassurance — looking for honest accounts from people who recognise this pattern.

Ready to post?​​​​​​​​​​​​​​​​