This has helped my PEM...

[Bansaw]

Last year I was doing regular aerobic exercise, 3 times a week, 10 minutes on the elliptical trainer.
THis was increasingly causing me to be dog tired the next day, and often gave me heart palpitaions, achy muscles etc, the common PEM symptoms.
Anyway, it got so bad that I decided," ok , I'll do no aerobic, not even walking and cut that out and do only light weights."

So thats what I did for 7 months or so. Cut all aerobic out.
Then after about 7 months I just felt like I needed to get my heart pumping a bit. Very hesitantly I did 5 mins elliptical with a good effect and no next-day crash. Slowly over the past 3 months I've up'ed this to 15 mins and felt good. No heart palps and no next day tiredness.
Now, I should say that muscle extertion has not been helped. If I work a new muscle group, PEM hurts for a few days, all the flu-like symptoms as before, but I am greatly encouraged by the aerobic. I walked home 35 mins uphill the other week and felt alright.
My doc though the muscle aches was due to ammonia. She gave me stuff to try, but I dont think its ammonia. Anyway...

Now, I did take a few things that I believe helped me.
I think I have narrowed it down to:
* Sublingual B12 Adeno, Sublingual Hydroxo
* Sublingual B2
* Soul water (saturated salt water).

The Soul water I think has helped me with minerals. My nails were quite speckled white, but now are the best looking they've been in years. And I have had poor absorbion. I just put a couple of teaspoons of celtic sea salt water in a bigger glass of water a couple of times a day.

Anyway, thought I'd share my experience. I'm taking it easy. I think light weights and stretching help too,a nd I want to do more of that.

 

[ryan31337]

Glad to hear things are looking up for you @Bansaw.

For what its worth I've had a similar response over the course of several long-term relapse/remissions over 20 years. I wasn't taking/avoiding anything during these periods so just assume it was a natural fluctuation. I could speculate at greater autonomic dysfunction holding me back during crashes but that's probably only one small part of it.

At times of best functioning it was mystifying that I could swim hard for 20 minutes (after a very gradual build-up over years) with minimal PEM but when I engaged other relatively untrained muscles i'd feel the full force of PEM, even at very very low workloads/intensity

 

[hamsterman]

Slowly over the past 3 months I've up'ed this to 15 mins and felt good. No heart palps and no next day tiredness.
Now, I should say that muscle extertion has not been helped. If I work a new muscle group, PEM hurts for a few days, all the flu-like symptoms as before, but I am greatly encouraged by the aerobic. I walked home 35 mins uphill the other week and felt alright.

I am going to eventually try and follow something similar.... once I feel confident enough that I can stop crashing on a weekly basis, I'll try to slowly work on muscle groups.

 

[Bansaw]

I am going to eventually try and follow something similar.... once I feel confident enough that I can stop crashing on a weekly basis, I'll try to slowly work on muscle groups.

I gave it something like 7 months of complete inaction to allow my body to "recover". Then at the end of 7 months, I did feel like my body was "missing" something, so I thought I'd very tentatively try 5 mins gentle aerobic.
That seemed to work. I've been adding a minute to my workout times every few weeks, but so far so good. The first inkling of even a minor crash and I'm backing off.
I regularly do medium weights on my chest and legs, and thats fine, but its doing weights with new muscle groups, or unworked muscle groups that really beings on the PEM big style. I don't know why that is.