majority or minority ME/CFS worsens only physical activity (not mental) (POLL)

[hapl808]

I feel 'lucky' because I only get them usually with PEM, so as long as I don't mentally or physically exert myself at all, no migraines. I've also tried every diet imaginable and there's minimal effects.

Unfortunately exertion for me includes any mental or physical activity. So difficult computer work, an enjoyable catch-up with a friend on the phone, a short visit from someone, cooking too much in the kitchen. Any of those things will lead to that next day PEM headache that might then turn into a full blown migraine.

I'm lucky and only get them 3-4 days weekly. Furthermore, I know people who have them every day. I haven't given up on trying to figure it out.

Sorry you get them that frequently. It's awful and kind of drains any possible enjoyment I could normally get from reading, watching TV, web stuff, etc.

 

[lenora]

Yes, @christiankatz.....We do get to the point of where we try to figure everything out. I did that with many things a long time ago. Of course others have only replaced them, but I do know that I want to spend less time at my doctors' offices...that's a certainty.

Sometimes I think it's our only social life, especially in these days of COVID and its many variants. I don't like wearing the masks (who does?) but will continue to do so for the forseeble future an way beyond that. I think everyone is weary, but as they say....life goes on. Yours, Lenora.

 

[MartinK]

Hey @WantedAlive I was thinking about IQ and I have an example from today when my parents had to get me to a doctor for a necessarily blood tests related to treatment with Spironolactone what I now try.

I have PEM from this trip = relatively large muscle pain and a feeling of increased inflammation in them, but I did lot of copywriting work in afternoon with PEM and I had to think a lot about words and marketing... looks like without problem - and so I usually have. There may be a small decline...maybe, but so mild that I can't evaluate it.

My ME/CFS started with flu-like - mild. But from day to day it was big exhaustion, inflammation feelings and inability to stand for long. The year it started for me was challenging - a lot of work, a lot of bike racing, two years before this I had EBV and Lyme, also food poisoning.
The last trigger was my birthday party, during which I held bike races and tried cocaine at a party in the evening (once in my life - I never used drugs).
Two days after the party, started my ME/CFS.

 

[andyguitar]

tried cocaine at a party in the evening (once in my life - I never used drugs).
Two days after the party, started my ME/CFS.

Have you told any of your Doctors about this, or tried to find out about how cocaine can effect people?

 

[nerd]

The last trigger was my birthday party, during which I held bike races and tried cocaine at a party in the evening (once in my life - I never used drugs).

Cocaine abuse can damage the heart muscle. Reminds me of this etiology theory. But just like with the Cannabinoid-induced ME cases, it might also be related to a metabolical mechanism.

 

[Rufous McKinney]

The last trigger was my birthday party, during which I held bike races and tried cocaine at a party in the evening (once in my life - I never used drugs).
Two days after the party, started my ME/CFS.

probably this is either just a bad coincidence, or the drug maybe made you a bit run down after, but its not very likely a brief exposure to that would be the "sole cause" of the ME. It was probably already happening....

don't be too hard on yourself....it doesn't really help, and often we are somewhat guessing- we get viruses, nobody diagnoses them, you really do wonder....

feel better!

 

[MartinK]

@andyguitar @nerd @Rufous McKinney it was only a very little dose, and no one or I attach much importance to it...I think it only gave me false energy that night = more final exhaustion next day and when it all adds up with my previous infections and a lot of physical exertion from cycling races, everything collapsed - and started my ME/CFS...this scenario makes sense to me.

This is why I try to compare other stories of those who also have only physical fatigue - whether a common denominator could be found