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

And mine—everything he says. I somehow managed to work through 38 years of ME, though there were three or four lengthy periods off sick. There just seemed to be no practical alternative, until additional illnesses made it impossible to continue.

 

And me for the first... 8 years or so... Simply having known about this would have changed everything, I kept fighting it, always pushing. Spot on.

 

My experience was different. I was unable to 'push'. I started to sway from side to side when I returned to work after recovering from PVFS (9 months later), it only took 3 weeks to relapse into a worsen state.

I wonder why some were able to push through for years while it was full-stop for others. I'm not even sure anymore if resting for some of us at the beginning makes us better off in the long run?

 

So would you have described yourself as mild then?

 

I don't know what 'mild' means? I'm disabled mostly from autonomic impairment (cognitively and physically) and get PEM when I go over my limit. I can't stand or walk for very long during the day mostly, but I do feel improved in the evenings if I don't overdo during the day. I also get viral reactivations with myalgias and other symptoms, but they're not permanent except when I took immune modulators in 2001 and relapsed.

Every relapse makes us worse and reduces our baseline.

 

Well, a dictionary definition of it is "not violent, severe, or extreme", https://dictionary.cambridge.org/dictionary/english/mild

In relation to ME. the new NICE guideline offers this description of mild ME which, broadly, is in line with most other descriptions of mild ME.

"People with mild ME/CFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week."

In the opening post of this thread I asked,

"I [when still suffering from mild ME] would not have recognised these descriptions [of PEM that are in the CCC and ICC criteria] as describing why I would need to take occasional days off from work to recover from what, at the time, I best described as a heavy 24-hour cold.

Now not all studies will want to recruit mild patients, so it won't be an issue all the time, but for those studies that do it could be useful to look at alternative ways to describe PEM.

So, as the title says, if you are, or have been, mild, how would you describe your episodes of PEM?"

So the intention of this thread is to discuss how mildly affected patients described their PEM when they were still mild, and in my opinion, from what you describe, it wouldn't seem that you were mildly affected.

 

Mostly severity, I guess, but it also comes down to type of work and level of autonomy.

If I'd worked in a job where I had to be on my feet all day, such as nursing, I'd have lasted months at best. Same goes for work demanding a consistently high level of cognitive challenge and flexibility, like teaching. Oh, and pretty much any job where I couldn't largely control how I managed my workload over the day, e.g. saving routine tasks for when I was struggling to function, and doing the most difficult stuff when at my best. I also worked below my potential, and tended to stay in jobs for long enough to streamline the work.

I doubt I could call to mind or describe every strategy I employed over the years, because I'm probably not even fully aware of them all. My ME was undiagnosed for the first 23 years and my autism and dyscalculia for 35 years, and living with both demanded a lot of problem-solving ability. (Especially as I was responsible for managing sizeable budgets but struggle with primary school arithmetic!)

 

I see. I've always been severe when in PEM, even when my illness was/is considered 'mild' or I felt 'recovered' during the early years?

 

Not true for me; my ME symptoms are less severe now I'm in my 60s, retired, and pacing, than they were when I was 17, working, and not pacing. I've had some nasty relapses but always recovered eventually.

My walking ability is poorer, but it's largely due to muscle loss in my lower legs caused by a hereditary condition, which didn't really start affecting me until my 40s.

 

What did you relapse from?

 

Well, I don't put words into Kitty's mouth but no, she doesn't say anything about her onset. She's saying that she was mildly affected but overdid things for a long time, and she believes that is what caused her worsening.

 

I would say, without understanding why, already living with less energy than the majority of people.

Being able to keep up with the general pace (at school then at work) for only a short time, " fatigue " arriving quite quickly and requiring a recovery time already longer than normal.

I constantly wondered how others could accomplish so many tasks in a day while I always felt like I was falling behind, although I instantly tended to hide it because being a little underperforming in our society, this is not very well seen (I am referring here to quantity, not to quality).

Even if it was a source of a lot of frustration for me, I realized very early that I was made like that, and so I “adapted,” out of necessity developing strategies to help myself and making choices accordingly. In retrospect, it was already a certain "handicap" which sometimes contributed to negative impacts on my journey.

In short, I spent 25-30 years of my life like this, before definitely "falling" with ME.

 

For me, resting at the beginning actually started making my ME worse, so after four months my doctor decided that wasn't the best advice that she gave me and advised that I stop resting.

 

@TigerLilea

If by worse you mean less energy or stiff/sore/tired muscles from resting too much then I can understand. Our bodies are made to move, I need to move around, but not everyone with M.E is capable/able and physicians need to understand this. It's a matter of finding the right balance for our own individual situation w/o worsening.

 

For me the inactivity was slowing me down mentally. I couldn't think and wasn't as mentally sharp as I normally was.

 

My personal experience of resting more, once I was able to, was that I did experience a period of feeling worse before I then started to feel better (than I did previously, I did not feel well). My interpretation is that during the time when I wasn't resting to the level I needed to, I was 'ignoring' or 'shutting off' those signals that were my body trying to tell me to rest and that once I did start to rest more I then 'noticed' or experienced those feelings fully. It was only after I established a sustainable baseline and kept to it that those signals subsided dramatically.

Of course I was fortunate enough to be able to do that, many people won't due to their personal circumstances.

 

In my case, I've become so exhausted that I would get nauseated and feel like I could vomit. I just feel horrible all over. My body would hurt and I would literally be 'drop dead exhausted' so to speak...like, I would be mentally 'aware' but my body, physically, would be so tired that it would just collapse.