Exercise(sorry I know this maybe a controversial subject)

[Viala]

This is where it all gets confusing especially to doctors, but it's what makes them excited about GET. They incorrectly assume that if someone gets better from exercises, then this approach will work for everyone.

They don't even know if the people who got better had ME/CFS in the first place. People are misdiagnosed on a daily basis even with more simple diseases. PEM descriptions are still only descriptions because everyone perceives their fatigue or pain differently, meaning someone's fatigue which looks like PEM may not be the same as ME/CFS PEM.

If someone gets better after exercising and can increase their limits, it can mean a few things:
1. This is not ME/CFS and never was
2. It is ME/CFS in a temporary remission phase, happens often especially in early stages
3. It is ME/CFS but leading to a permanent spontaneous remission, it's rare but possible
4. It is ME/CFS and someone is on a protocol that works and cures them

By definition exercises are NOT THE CURE for ME/CFS. If they cure someone, chances are it wasn't ME/CFS at all.

 

[Dysfunkion]

I walk every day but needing to actually use any strength drains me quickly especially if it's with a cognitive load to handle. Thinking too much or too much of a general cognitive load makes me a feel a lot worse than the daily physical load which isn't much more than a walk to the store/work and back. Maybe I might take a small walk later on a nice day if I feel like it. My physical symptoms that lead to me if bad enough not being able to walk far seem to come from my brain just not sending the correct signals to my body parts to do the things. I'll tend to just be able to sit and stare off into space with this vague, weepy, impending doom feeling when it gets there.

 

[Hufsamor]

Exercise is not a cure for me/cfs.
And one might want to redefine what exercise are.
I don’t make dinner. Ever. My husband makes dinner when he gets from work.
If I had to make dinner for a family every day, I wouldn’t be able to exercise.
I shower and wash my hair once a week. If I took a shower every day, I wouldn’t be able to exercise.
If I had kids, I for sure couldn’t exercise on top of that.
Instead of using my envelope of energy on those tasks, I’ve found ways to move my body and use different kind of muscles without getting sicker. (

A lot of me/ cfs people don’t have that privilege.
But many have, if they find the right way and the right amount.

As long as I don’t overdo, I have been able to more exercises now than I did a year ago. My me/cfs is not better, but some of my muscles are a bit stronger

 

[ilivewithcfs]

I think, it's very important to exercise to the point, that doesn't give you PEM. Even if it's waving your arms for 30 seconds. I am doing very mild strength exercises (tiny sit-ups, tiny push-ups) for about 1 minute, and I'm doing it twice a day. On some days instead of this mini-strength training, I just walk for about 5-7 minutes. GET only got me worse, but I'm sure, that some mild movement is helping me.

 

[LaurelW]

My ME specialist doctor has always told me that there's a big distinction between exercise that makes you breathe hard and gets your heart rate up too high and isometric-type exercises. When I say too high, it could be a maximum of 100 BPM or lower. She says the best exercise for ME patients is lying on the floor strengthening exercises. This works for me, but of course, one has to pace even doing that.

 

[Hufsamor]

@LaurelW
You are right. I forgot to mention the heart rate.
Very, very important to keep the heartrate down.
(I know a few me/cfs patients who are doing very, very short bursts of very high intensity, they claim the important thing is to stop before the lactate starts to accumulate. I haven’t had the courage to try that approach yet)

 

[wabi-sabi]

She says the best exercise for ME patients is lying on the floor strengthening exercises.

This is what I do (when I can).

 

[Viala]

(I know a few me/cfs patients who are doing very, very short bursts of very high intensity, they claim the important thing is to stop before the lactate starts to accumulate.

I think that's the core of exercise intolerance, lactate buildup and insufficient lactate clearance. The worse it works, the less tolerance to any activity. It literally feels like muscle soreness all over the body. Bicarbonates should help with that, baking soda or potassium bicarbonate even better.

 

[Wishful]

Bicarbonates should help with that,

I really don't see that being likely. If you swallow bicarbonate, it reacts with HCl in your stomach. The bicarbonate molecules don't magically move unreacted to lactic acid molecules in muscles to neutralize them. That reaction only works when you mix bicarbonate and lactic acid in a test tube, beaker, or whatever. That's the problem of trying to apply test tube chemistry to the body.