u/Double_Isopod_5642

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Dear All,

3.5 year in, post covid.

The first 1.5 years i had no crash, just neuro symptoms (dizzyness, paresthesia)

I had then 5 major crashes in 2 years. They affect only my legs. I have 0 cognitive issue, 0 other symptom than leg weakness/ pain , no central fatigue, at least when not in crash (in crash i feel the général fatigue but just for a day or 2, plus some dizzyness, nausea).

I realise what people call pem or crashes may vary a lot between people.

The 2 first ones i was undiagnosed, the one after poorly advised by doctors, the 2 other ones i paced but crashed, i learnt it hard way.

So far they ALL follow one same pattern.

Not always easy to see warnings before the crash i précise. That makes it very tricky. I now carefully note every symptom every day.

Phase 1: i loose 90-95% of my capacities to walk / stand in couple of days.

Phase 2: during that Phase i cant expand.

If i try too early, what i did of some times to feel the waters., i have minor crashes that set me back. So basically i am stucked.

This phase last 6 weeks or more, the last one 2.5 monthes.

Phase 3: "fast"progressive expanding is possible for a short amount of time (say 2-3 weeks) and i can ramp up from where i was in crash to 2 to 3 time this amount (in steps).

Phase 4: i plateau and can then try to slowly pace me up with a given rate, trying to stay under symptoms of course.

So far, i ALWAYS crashed again on Phase 4 to about 50% of my previous baseline (before the last crash).

So yes,,i divided my baseline by 32.

(From very sportive to walk unilimited / sport limited to 15000 steps to 7000 to 4000 to... 600 steps today).

I am now in Crash5.Phase3 and hesitate when to switch to Phase 4.

I walk 700 steps/ day where i was walking 4000 4 monthes ago.

With an lower expanding rate, assuming my symptoms remains low of course.

Hoping that the curse of /2 will not apply this time and that everything runs well.

Do some people relate ?

Some seeem to crash for days only.

I wish i would.

Some who have fully recovered or improved a lot seem to have succeded to pace themselve up to normal in 6 monthes / a year or more ?

Do some others have this sad Trajectory like me ?

How to reverse ?

Thx in avance for your kind advices.

My dear friends,

I studied like lots of you intensively the research.

Myself scientist i naively thought i would heal.me out of this.

The more i understand, the more i am amazed by the complexity.

Biomarkers ? 6 years later still not existing except in research, where is the project leader if this ???

Phenotypes ? Same question.

I personnaly think i belong like many in the functionnal auto antibodies team.

Reprogramming our immune system seems quite a complex task no....?

Declining the last 2 years, bedbound for a month. Feeling blue.

Positives and négatives thouhts on possible cures welcome.

Hello

Some typically start very bad and it seems to.me many lf those manage to improve.

(Not everyone i know and i feel so sorry for those)

Some start very mild, my case, and worsen, very severe now after one first crash that changed everything.

For those, is that possible to reverse ?

Need hope, feel absolutely desperate.

Best whises to all of you..