Realising Counselling And Exercise Is Not Helping CFS

[Tarmander]

@Tarmander Interested in your comments about potassium chloride helping - mind sharing doses you've used, and maybe a little on the rationale?

If you read my log, you can get a better idea of where I came from...but basically over exercise burn out led to a collapse for years and years. A lot of Peat stuff helped me, but I was always slightly waterlogged/swollen, had insomnia if I walked too much, gained a bunch of weight. Then I started taking Betaine HCL after noticing high Co2 on a blood test. Chlorides brought that Co2 down. So I started taking a little potassium chloride in pill form and felt slightly better. After reading some more, I decided to try a heavy dose one day and took something like 5g mixed up in water/juice. I felt completely catatonic the whole day, but noticed that I could easily walk and still sleep. So started taking a mix of potassium chloride, magnesium chloride, calcium chloride, and sodium chloride. Just this last week I hiked Havasupai Canyon in Arizona, which is a ten mile hike in and ten miles out with a 35 pound pack. I took those four electrolytes the whole time, and while it was tough, I was able to keep going and make it through. Now that is too much hiking by far, but the fact that I could do it was pretty amazing.

I am still trying to figure out the proper blend, but it is way more potassium then the other three

 

[allblues]

@Tarmander Cool, thanks!

 

[energyandstruct]

I respect what you're saying but I didn't say at any point that forcing exercise is the cure for chronic fatigue.

I see lots of people that fear exercise, but at SOME point in your chronic fatigue recovery your body is going to tell you to move.

If you're too headfucked by exercise fear at that point then you may not be able to progress towards complete health.

I doubt that this psychological fear of exercise is a huge stumbling block in anybody's CFS recovery. Often it's the opposite--we're supposed to pace, but a lot of us started out as ambitious, high energy people before getting sick and have trouble resting as much as we should. Pacing is like rationing, and I'm used to spending my energy freely.
When I first got sick from lyme, which triggered all of this, I did lots of exercising thinking it would help, because I didn't really believe it was possible for exercise to be bad. This probably made things immeasurably worse.

Lots of bodybuilders get CFS. Lots of type-A, high energy people get it. The illness is not about deconditioning, deconditioning is secondary.

 

[Constatine]

These will both help. When I was unable to exercise, light walks were helpful as well as getting rid of EMF, spending time in nature, and a host of other things. However it still does not address the root issue of why your body cannot clear the lactic acid. High amounts of Potassium Chloride and other Chlorides is what finally made exercise start to be fruitful for me.

Have you tried Earthing specifically, like walking barefoot on a beach or just on the grass? Grounding the bed via a copper cable connected to the Earth has helped me with sleep and energy. If anyone tries this they should keep the copper cable away from any strong EMF signals such as a power outlet in the wall. Have you associated your CFS with any gut problems? D-lactic acid (which is harder to clear) has been associated with CFS symptoms in at least one study: https://www.researchgate.net/public...ria_in_Patients_with_Chronic_Fatigue_Syndrome.

 

[Tarmander]

Have you tried Earthing specifically, like walking barefoot on a beach or just on the grass? Grounding the bed via a copper cable connected to the Earth has helped me with sleep and energy. If anyone tries this they should keep the copper cable away from any strong EMF signals such as a power outlet in the wall. Have you associated your CFS with any gut problems? D-lactic acid (which is harder to clear) has been associated with CFS symptoms in at least one study: https://www.researchgate.net/public...ria_in_Patients_with_Chronic_Fatigue_Syndrome.

Yes I have done earthing before, but never connected a wire to where I sleep.

 

[Collden]

In some patients maybe but there has been a study done showing that CFS patients exercise thresholds are very low. So like a brisk walk for a normal persons metabolism would be laying down still for a CFS person. So if they increase there activity even a bit, it pushes them into the danger zone of very high lactic acid build up and very high heart rate etc.

Maffetone training seems to be a solution then, ie monitoring your heart rate during exertion and making sure it stays below around 180 - age, and not increasing the intensity of your workouts over time more than that your heart rate stays in this range. I'm guessing that the reason graded exercise therapy has not been very effective for CFS in general is because it does not consistently emphasize heart rate monitoring to make sure people stay in their true aerobic zone.

Is there any data about the background of people who develop CFS, if they are athletic or sedentary to a greater or lesser extent than the general population?

 

[Terma]

I don't remember a specific study about the general population, but it has included very active athletes.

By and large short bursts of resistance exercise appear to be the best, but not anywhere curative (and I have no idea what Maffetone is), and I could say that applies to most people, really.

It's confounded by the comorbidity with POTS (orthostatic intolerance) for which some conditioning is certainly beneficial.

 

[Collden]

Anecdoctally most I know who developed CFS were into high intensity exercise such as HIIT.

Maffetone training is what I described, exercise with heart rate monitoring to make sure you dont go above 180-age, it is a rough estimate of how intensively one can exercise while remaining in aerobic metabolism.

Even most healthy people who get into this type of training have to slow down to a walking pace in the beginning to remain in this range, so I can only imagine that people with CFS would have to go very, very slow in the beginning.

 

[Terma]

I don't have any data on this, but I think the ones who come down with ME/CFS from overextertion like athletes might be the least likely to benefit.

Those with an "autoimmune" origin should be more likely to suffer from POTS and therefore benefit more from conditioning.

Of course you have a whole other subset of people who are misdiagnosed with other things such as depression for whom some conditioning will help e.g. if only from neurogenesis and circadian rhythm fixing if nothing else.

This post consists of only musings.

 

[Amazoniac]

If you read my log, you can get a better idea of where I came from...but basically over exercise burn out led to a collapse for years and years. A lot of Peat stuff helped me, but I was always slightly waterlogged/swollen, had insomnia if I walked too much, gained a bunch of weight. Then I started taking Betaine HCL after noticing high Co2 on a blood test. Chlorides brought that Co2 down. So I started taking a little potassium chloride in pill form and felt slightly better. After reading some more, I decided to try a heavy dose one day and took something like 5g mixed up in water/juice. I felt completely catatonic the whole day, but noticed that I could easily walk and still sleep. So started taking a mix of potassium chloride, magnesium chloride, calcium chloride, and sodium chloride. Just this last week I hiked Havasupai Canyon in Arizona, which is a ten mile hike in and ten miles out with a 35 pound pack. I took those four electrolytes the whole time, and while it was tough, I was able to keep going and make it through. Now that is too much hiking by far, but the fact that I could do it was pretty amazing.

I am still trying to figure out the proper blend, but it is way more potassium then the other three

Have you tried the acetate forms? Not that chloride isn't helping you, but the correction should be from the repletion of catias. And if this applies, perhaps it's worth having part as acetate and the other part as chlorid.

 

[Tarmander]

Have you tried the acetate forms? Not that chloride isn't helping you, but the correction should be from the repletion of catias. And if this applies, perhaps it's worth having part as acetate and the other part as chlorid.

catias? No haven't tried that form.

 

[Blossom]

Wow, I couldn't have exercised when I had CFS if my life had depended on it. I could barely stay out of bed for 20 minutes at a time at my worst. Just putting one foot in front of the other to walk was as close to exercise as I got and that took all my strength!

I tried counseling but it was unfortunately useless probably because I didn't have a mental health problem. I think CFS is something you have to live through yourself before you really get it. I'm sure there are compassionate people out there but I mostly experienced an attitude from others that I was just depressed or lazy!

 

[Blossom]

Just this last week I hiked Havasupai Canyon in Arizona,

That's fabulous!

 

[sunraiser]

I doubt that this psychological fear of exercise is a huge stumbling block in anybody's CFS recovery. Often it's the opposite--we're supposed to pace, but a lot of us started out as ambitious, high energy people before getting sick and have trouble resting as much as we should. Pacing is like rationing, and I'm used to spending my energy freely.
When I first got sick from lyme, which triggered all of this, I did lots of exercising thinking it would help, because I didn't really believe it was possible for exercise to be bad. This probably made things immeasurably worse.

Lots of bodybuilders get CFS. Lots of type-A, high energy people get it. The illness is not about deconditioning, deconditioning is secondary.

I understand - I completely crashed my metabolism through gym. Body building is not healthy exercise.

In my opinion the goal in CFS or any metabolic deficiency should be to find a suitable non restrictive diet and circadian rhythm including morning light access to give energy to move. Whether it's yoga, jogging, skipping, anything, then finding your way to that place is the best possible detox method.

It's easier said than done of course. The internet is a minefield of fear mongering and coping mechanisms listed as success stories so it's not easy.

I also understand your specific situation is not about exercise at your current point, but I wanted to write this to provide a balanced perspective and share my own experience.

 

[Herbie]

Wow, I couldn't have exercised when I had CFS if my life had depended on it. I could barely stay out of bed for 20 minutes at a time at my worst. Just putting one foot in front of the other to walk was as close to exercise as I got and that took all my strength!

I tried counseling but it was unfortunately useless probably because I didn't have a mental health problem. I think CFS is something you have to live through yourself before you really get it. I'm sure there are compassionate people out there but I mostly experienced an attitude from others that I was just depressed or lazy!

Thanks Blossom.

 

[Herbie]

I watched a film, Alphie 1966 with Michael Caine, he got stressed and the doctor sent him to a senatarium because she said he needed rest and he recovered fine.

That seemed to be part of the culture back then, to rest when stressed and run down, do less, take care but today it’s this do more once your done doing more do more and when that fails do more, shame on you for not doing more.

 

[energyandstruct]

I watched a film, Alphie 1966 with Michael Caine, he got stressed and the doctor sent him to a senatarium because she said he needed rest and he recovered fine.

That seemed to be part of the culture back then, to rest when stressed and run down, do less, take care but today it’s this do more once your done doing more do more and when that fails do more, shame on you for not doing more.

Yeah it's odd, I think with a disease that is unknown we would do better in Victorian England at least if upper class, than in modern day, because the standard treatment for illness used to be bedrest etc

I think it has to do with Protestant ideology in America and how much we fetishize work

 

[energyandstruct]

Maffetone training seems to be a solution then, ie monitoring your heart rate during exertion and making sure it stays below around 180 - age, and not increasing the intensity of your workouts over time more than that your heart rate stays in this range. I'm guessing that the reason graded exercise therapy has not been very effective for CFS in general is because it does not consistently emphasize heart rate monitoring to make sure people stay in their true aerobic zone.

Is there any data about the background of people who develop CFS, if they are athletic or sedentary to a greater or lesser extent than the general population?

I think some people with CFS do do this, but many don't ever get to someone who's specialized in this and tbh I think just for the most part intuitively knowing ur limits works similarly, I'm good at estimating my heart rate

 

[energyandstruct]

I think some people with CFS do do this, but many don't ever get to someone who's specialized in this and tbh I think just for the most part intuitively knowing ur limits works similarly, I'm good at estimating my heart rate

If anything I tend to have the problem of not resting enough rather than being too inactive

 

[Collden]

Wow, I couldn't have exercised when I had CFS if my life had depended on it. I could barely stay out of bed for 20 minutes at a time at my worst. Just putting one foot in front of the other to walk was as close to exercise as I got and that took all my strength!

I tried counseling but it was unfortunately useless probably because I didn't have a mental health problem. I think CFS is something you have to live through yourself before you really get it. I'm sure there are compassionate people out there but I mostly experienced an attitude from others that I was just depressed or lazy!

Just curious, what do you think caused CFS in your case, and how did you recover from it?