PEM for those who are, or were, mild sufferers, how would you describe it?

It's what inspired my thought, yes, but I think it could be a valuable discussion to have generally. Could you explain why you think asking about signs of OI might be useful?

 

It might be much more common than we think because mild OI is even harder to recognize as such than PEM. It also seems to be an important component of the ME/CFS phenotype. When the illness is mild and/or in the early stage, is OI already present or not?

 

I don’t tend to get sore throats or fluey feelings but if I have overdone it, I find that I am much much more sensitive to noise, light and smells. I feel physically exhausted and I can’t support myself easily with my core muscles. If I try to move about too much, my heart rate races. My temp control is unstable. And I can’t think straight at all - I don’t process what people say and I forget everything.

 

Not sure how to describe it but I was a mild sufferer in 2007 (I was even running cycling and so on) , with some very bad worsening in 2009, and it was only in 2016 when I first experienced PEM. Now I'm mostly bedbound / housebound.

 

When I was mild, and within the first 12mths of falling ill, I would get a reoccurence of the terrible sore throat that I had with the virus which I think triggered it all. Sore throat doesn't really do it justice, it was like tissue between my right ear and that side of my throat was bruised. After the first 12mths I don't think I got this anymore, but I was slowly improving and all my symptoms were reducing. Ultimately I think this is what threw me last year in the run up to Christmas and ended up with me overdoing it and ending up in the situation I'm in now.

The early warning I'd get when getting close to the threshold for triggering PEM was lightheadedness. I would just feel weak when in PEM, but don't recall getting any of the burning legs/arms that I get now or the breathlessness that I now get. All of this eased off over a couple of years, until it all went wrong in January.

What I'd give to turn back the clock 12mths!

 

To be honest, when I was mild I didn't really have PEM. I mean I could feel worse if I tired myself out but it didn't function like PEM.

It sort of went like this:

Autumn 2015 (that's northern hemisphere autumn) - fatigue started.
Early 2017 - fatigue worsens throughout first half of 2017.
By halfway through 2017, the disability level from my fatigue was 'moderate'.
Possibly some PEM-like experiences starting halfway through 2017.
November 2017 - I wrote "my experiences are starting to look more and more like ME" (I had a friend with ME and had done some reading about it to help me understand what she was dealing with).
By October 2017 I definitely got physical PEM.
At this point I still didn't think I got PEM from cognitive overexertion, but that might have been wishful thinking. In January 2018 I knew that I did.
I absolutely met ME criteria by early 2018.

So it was a bit of a weird journey and it does make me wonder whether I actually have ME or something else masquerading as it.

 

I personally think only severe patients should be in studies and those who have come out the other side of severe ME.

I was a staged ME with sudden onsets. I went from mild to severe to moderate/severe bouts.

I will list my symptoms that I experienced in my early years of ME that were six years before my severe onset below. Keeping in mind that I was still able to work during these years but with great difficulty especially as I neared severe ME.

- orthostatic disturbance (don't know what type), it would come and go.
- major change in brain function, unable to continue to study because I couldn't retain information to memory. Learning was very slow and whatever I did manage to retain I lost most of it by the next morning.
- increased emotional liability
- developed a drippy nose as if something was wrong with my immune system or like a person who is very run down.
- bouts of unusual exhaustion, nausea, headache
- in the years closest to my severe ME onset I began to experience severe bouts of PEM but did not understand what I was experiencing.

These are just a few things that I can remember at the moment. I will add more as I remember them.

 

At my mildest there was a larger discrepancy between "new normal" functioning and the PEM crashes. So when I was not in PEM I was able to do far more than I can do now but when the PEM struck I was far sicker with severe viral symptoms than I get today and for longer.

Over time (decades) my PEM has become less viral.

 

Good points here. I had trouble standing up for long for years before I started to develop clear signs of ME, while I was still very active and fit.

 

I didn't experience PEM for the first 7 years of illness. When my health improved and I started running again was when PEM set in.

 

Like a strong flu but without the respiratory aspects (so mild fevers, aches and pains, struggling to process anything ...anything you could experience with a weeklong bout of full-blown influenza), combined with a hangover (the classic portrayal with the sensitivities), and ‘stomach flu’. Sore joints (feel like I’ve injured them but don’t recall what I’ve done to them.

I do get milder PEM (than those “crashes”) which are the same but all the symptoms are milder and more ignorable, more possible to push through.

Often when it’s just coming on I get a sore back where the ribs are and aches and pains in that area all the way around. That’s been helpful in learning that I’ve gone too far and not beating myself up about not being strong enough to keep going but to stop so I can recover sooner.

Yes, when I started I had ‘the flu’ so often I was taking codral, almost 50% of the time (because running a business you don’t get to stop because that closes the doors - did have staff but they did get to rest when ill). Back then it was snotty too so I took it to keep up my energy but also to stop the messy parts of a cold.

I was recently asked by a doctor if I had a viral onset (we didn’t actually mention ME/CFS, we’re looking for something else) and I said no. But if just having a bad bout of influenza counts then it’s quite likely - I simply carried on until I physically couldn’t, then was so out of it I don’t remember, then back to soldiering on with drugs (I’ve been raised not to take drugs so that in itself is a sign of severity). But it wasn’t a single incident that I can point to because I was too busy to focus on it and then too out of it to remember.

I absolutely hate that I have to be responsible for being able to remember and describe my symptoms. It feels like a recurring exam in which I’m constantly failing. And worse, I suspect the effort that I do make is just putting me in the hypochondriac basket, or at least the: she wants to diagnose herself one. I don’t. And, since becoming ill, I always forget something important so I’m a really terrible witness.
The irony is that I’ve been good at delivering great concise comprehensive signs and symptoms for friends and family when they’re ill so doctors assume I’m good at it. Which makes me feel less credible when I am so inconsistent with my own reporting.

Here’s what I’m planning to send to my doctor because a recent report put my husband’s reporting of my PEM down as “lethargy”:
Starting 24hrs after any extra activity (like my recent outing) I feel like I do now: like I’ve just been up all night at a loud party with crashes and bangs that I’m too old for and I have a hangover. If I press on with what I want to do it gets worse, first as if the party and firecrackers are going on right now, then with chills and incoherence. It’s a lot like having a non-respiratory flu, so yeah tired but not exactly sleepy. More like aching all over, nauseous (not often to the point of throwing up), sensitive to light and sound, sweating at the slightest exertion (the sort of thing a day before I’ll do easily), sometimes headaches, usually the same sore knee (and recently my ring finger is also pretending I hurt it somehow and swelling up randomly overnight), frequent loose stools, loss of stamina (I get sort of weak when lifting boxes and things I’d normally have no trouble with) and when it’s just coming on the tight ribs and that part of the spine.
I’d say it might be largely dehydration but I do keep up the fluids.
I have learned to rest because it stops it getting worse and I recover sooner.

If anyone wants to help me get this down to a more credible statement I’d appreciate it (which is better, the thing I started this post with or this second version?). I’m so tired of being afraid that I might lose the help I do get by over-reporting.

 

Interesting. I have never experienced mild PEM. It's always severe when it hits and I can not push through. I have to full stop everything.

 

I wasn’t aware of ME (had no idea such a disease even existed) for the first 6 years or so after coming down with it, so I obviously didn’t know anything about concepts such as PEM etc. OI has been part of my PEM since the very beginning, but I obviously didn’t recognise it at the time.

I used to think that I was just having a sore throat unusually often, frequent head colds and weird DOMS (delayed onset muscle soreness) from exercising. I also used to have a “legs and muscles made of cement” kind of feeling at the very start of every practice/exercise session (unless there had been more than a week or so between the sessions).

I was often feeling very cold even in warm places, wearing much warmer clothes than others in the same environment, and I even had to put a space heater under my desk at work and wear fingerless mitts because my fingers would get so cold in the afternoons after a long day’s work. And I used to sit crosslegged in the chair at the office, because I felt that my thinking, concentration and creativity improved if I didn’t have my feet on the floor.

As it got worse I started getting IBS like symptoms too after overexertion. Also nausea and diarrhea, sometimes throwing up as well — sometimes with no delay but only like 5 minutes in when trying to exercise.

People would tell me I looked extremely pale after exercising. I would feel freezing cold, shivering and shaking.

At one point I did notice that I wasn’t getting any stronger. The progress I had been making previously in my physical practice stopped and reversed, even though I kept exercising. My muscles kept slowly getting weaker while my balance, coordination and my stamina/endurance worsened a lot quicker, and I got winded really easily. I would feel ill, lightheaded and utterly wrung out after practice instead of the usually feelings of being invigorated and full of feel-good hormones. Recovery was getting a lot worse too, would take days or more instead of feeling fine after having a shower and a snack.

My circadian rhythm/internal sleep clock started getting badly affected by overexertion too (similar to delayed sleep phase syndrome), which eventually made it impossible to get to work on time in the mornings.

I’ve always been having adrenaline surges with my PEM, which at the time made it very difficult for me to make the connection between over-exertion and its consequences. For example, I remember being baffled by (what I at the time believed was) intense DOMS “randomly” setting in 5 days after a physically active weekend workshop, or why I kept feeling worse (repeatedly ”getting the flu”, for example) when taking time off and resting instead of keeping active.

(I didn’t have much cognitive symptoms at the time. They came later.)

When I first read about PEM, I recognised it immediately.

 

Yes! Sorry, wow does that remind me ... I’m 6yrs in now from that time. And I too had no idea. The delay thing is really hard to get your head around until you consider that.

 

This is a much more recent experience. When pacing well. I’m proud of getting to that. But it takes a rather unsustainable level of rest.

[ETA: I might not recognise it as PEM except that a) like clock-work it has the same time-delay and b) I’m now well enough to notice it (as opposed to being a constant low grade background).

 

@Subtropical Island when you start feeling PEM coming on, can you stop the progression by resting? For me, no amount of rest can stop it when it starts, it has to take its course of 48-72 hrs.

 

No, it’s too late by then (the delay is usually 24hrs - although it can be cumulative so ..it can be like superimposed poisson waveforms).
But I can notice signs that I’m overdoing it at the time (which if I pay attention to them can reduce the PEM strength and duration (not making it worse) when it does come.
And when the PEM starts, if I rest then I don’t make it worse. I just have to wait for it to run it’s course. (NB If I press on (requires the sort of effort I used to use for survival situations) then it gets rapidly worse and lasts longer. But, if I crash it’s not really something you carry on through. It requires fury and adrenalin etc and still doesn’t give me much).
Come to think of it, I have managed to get up before the PEM fully ran its course (day 2-3) and respond to an emergency. I was compromised but able to function on things I’d drilled. Then I was ok for the rest of the day but after 24hrs from the start of the emergency I was back to bed for a double bout of PEM.

ETA: my PEM used to last a week but now it’s more often just 48-72hrs. It’s like a poisson curve in severity (peaks early and then is slow to completely go) so I had a time earlier on (when trying to exercise/activity my way out) when it became a low constant with worse times.

 

@Subtropical Island thanks for your explanation. Do you have autonomic issues?