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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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SOC

Senior Member
Messages
7,849
Yesterday I started an experiment. I overdid. I way overdid. Over the AT and kept going overdid.

No, I haven't suddenly lost my mind (I think). It became time to test if I still have PENE. I'm now 9 months past clearing my 5 identified chronic infections. I'm approaching adequate treatment of my low blood volume and POTS. And I have the summer off to recover if I crash.

I don't feel sick anymore. I'm not cognitively recovered, but I'm much, much better in that area. I can walk across a room without going over my AT. In fact, with my current dose of calcium channel blocker to control HR, I can do a lot more before going over my AT, although nowhere near what a healthy person can do. I'm not sure that my pre-POTS-treatment AT is even meaningful after meds to control HR. :confused:

So, with all my treatments -- for sleep, pain, hypothyroid, etc -- I don't feel bad anymore. I still have some cognitive dysfunction and exercise intolerance, and maybe PENE. I don't know about the PENE because I have been extremely careful to stay below my AT since I began antiviral treatment 2.5 (?) years ago.

The question now is -- are my physical limitations still PENE-related or am I now simply deconditioned? Yes, I could be deconditioned. I've been largely housebound and unable to exercise without going over my AT for years. I wasn't deconditioned when I became ill, but I certainly could be now.

Hence, the experiment. Now I'm counting. For me, PENE can hit up to 4 days after the over-exertion, so I'm not claiming to have dodged PENE until Friday. Today I have muscle aches, not the ME kind and ibuprofen handles it. I'm not exhausted or mentally fogged. The only thing unusual is that I'm craving bread. :confused:

So, if I don't have PENE, do I not have ME anymore? ;)
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Forgive my ignorance, but what is an AT?

AT = anaerobic threshold. Its the point at which burning oxygen for fuel starts being replaced by a less efficient energy mechanism that causes a buildup of lactic acid. Its one of the chief findings in VO2max tests for ME patients, and in repeat VO2max tests they can actually measure the energy crash by doing a second reading on the day after the first. This then becomes an objective finding - we are not fatigued as such, there is a major crash in energy production. It may be diagnostic of ME but we don't know that yet for sure.
 

NilaJones

Senior Member
Messages
647
AT = anaerobic threshold. Its the point at which burning oxygen for fuel starts being replaced by a less efficient energy mechanism that causes a buildup of lactic acid. Its one of the chief findings in VO2max tests for ME patients, and in repeat VO2max tests they can actually measure the energy crash by doing a second reading on the day after the first. This then becomes an objective finding - we are not fatigued as such, there is a major crash in energy production. It may be diagnostic of ME but we don't know that yet for sure.

Thank you! That was very helpful, and I had no idea about VO2max testing.
 

heapsreal

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10,089
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crossed your AT would probably be when u are out of breath and unable to talk?? but i think in many of us who would have to have some deconditioning would be either a pulse above 100-120, or 60% of maximum HR. A fit person can stay in their aerobic threshold at 80% of maximum HR.

Maximum HR use to be calculated by taking your age away from 220 so a 40 y/o max HR is 180??
 

heapsreal

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Interesting subject SOC. Im in the process of wondering how much i can do too. Post valcyte i am handling work well and also able to exercise. i also have everything tuned up such as hormones etc and using creatine in my protein drinks which can also help with energy and exercise recovery.

I have been doing weight training as i find it easier to control how much i am doing etc. Currently im using reasonable types of weights but keep my repetitions low in the 1-5 reps depending on the exercise. Im also making sure i dont get too much out of breath, so rest well between exercises.

In the past any aerobic type exercise would put me in a bad state as it would elevate my HR for prolonged period of time, weight training i can work around this.

I have played tennis a couple of times with no issues and done a long walk for hour and a quater with no pay back. I do find that i probably do have mild pem/pene so plug in rest days after doing exercise etc as sometimes i may feel just a little sluggish. But not sure if it too isnt deconditioning to a certain point and i probably am being cautious.

I am looking at doing some regular aerobic cardio stuff soon and test the boundaries. Scary stuff trying to avoid any type of relapse. its good to see there are a few of us at this stage??
 

SOC

Senior Member
Messages
7,849
crossed your AT would probably be when u are out of breath and unable to talk?? but i think in many of us who would have to have some deconditioning would be either a pulse above 100-120, or 60% of maximum HR. A fit person can stay in their aerobic threshold at 80% of maximum HR.

Maximum HR use to be calculated by taking your age away from 220 so a 40 y/o max HR is 180??


That calculation would result in a max HR and therefore AT that is too high for the vast majority of us. Unfortunately, we're all different, so there's no good way to know what your particular AT is other than that you can be almost certain it's less than that of a healthy person.
 

Seven7

Seven
Messages
3,444
Location
USA
SOC so funny you brought that up!!! I noticed the same, I feel so much better but I still have exercise intolerance and PENE and here is the bad news wait for it...

I have been exercising for a while now on and off. And I am pretty sure is not deconditioning because the guy in the video said that 2 weeks even go long ways. I have been all along, I would stop exercising but in the worse of days I walked at least 10min (more than my healthy friends do!!!). I wear a pedometer and just work requires me to walk 3,000 steps a day, Today for example I reached 5,000 steps.

So you would think that if it was deconditioning I would have it gone by now right??? I was just gonna request the Patient Representative to bring this questions as a case study and see what is the consensus out there. Would be nice for others to join (unfortunately I think the primary cause of CFS is still there).
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
How do you know when you've crossed the AT?

Heart rate goes up a lot, or you start to pant, or you feel muscle burn. There is no way to be precise though without a VO2max test, these are only approximations. These signs are for healthy people too, I am not sure how accurate they are in ME patients. For example the heart rate with POTS if you are standing goes up anyway, so its not a really good measure if you have POTS and are exercising in an upright position.
 

heapsreal

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Messages
10,089
Location
australia (brisbane)
That calculation would result in a max HR and therefore AT that is too high for the vast majority of us. Unfortunately, we're all different, so there's no good way to know what your particular AT is other than that you can be almost certain it's less than that of a healthy person.

I will give an example but im working off memory here. a sedentary 40 y/o has a max hr of 180 which worked out by taking age away from 220, so 220-40=180. AT for sedentary people use to be 60% of max HR, so the 40y/o AT heart rate 108 which is 60% of max HR. Your right we are a different breed and there is deconditioning to deal with once in a recovered situation.

After a quick google to try and recall info on this, 60% of max hr is the lower end of work intensity to get a training effect?? I learnt all this many years ago but sure 60% of max HR is sedentary level to be within there aerobic threshold, fitter people can stay within their threshold at much higher levels like 75-85% of max HR before there energy system switches over to anaerobic energy systems. anaerobic energy system is a less effective way to make atp/energy and has a much shorter duration before fatigue sets in as fatiguing chemicals like lactic acid kick in that reduce the muscles ability to contract. Repeated effort as in next day exercise use to depend on how well one hydrated and replenished glycogen/ATP/Ribose. Creatine supps can help prolong our efforts when in an anaerobic state as creatine combines with waste products of energy and recycle ADP to ATP. This also can help with recovery after activity.

Sorry for the rant but this info was flowing from my recall so i let it go while i could still remember. I think its accurate. But these % were always said to be a guide for people without any health issues??
 

SOC

Senior Member
Messages
7,849
This may help explain what you're trying to say, heapsreal
http://en.wikipedia.org/wiki/File:Exercise_zones.png

Note that these levels are NOT appropriate for people with ME. Our AT occurs at a significantly lower HR than this chart shows and it could be damaging to expect your body to perform like a healthy person's.

The first time my AT was tested, I could go over it just by walking across the room at a normal speed. I was not panting, sweating, or anything noticeable. With a HR monitor I could see my HR climbing rapidly, of course, but there were no other clues.

About 7 years later, after methylation treatment, Valcyte, thyroid replacement, and lots of supps I felt a lot better, but still had energy problems. I could do more (although still not much). Exercise testing at that point showed that my AT had changed by.... absolutely nothing. I could do a bit more before going over my AT, but my AT was exactly the same as it was 7 years before.

Pacific Fatigue Labs (Drs Snell and ???) or Dr Sol (at Dr Klimas') may have provided guidance for how to estimate AT for ME patients who don't have access to exercise testing.
 

SOC

Senior Member
Messages
7,849
SOC so funny you brought that up!!! I noticed the same, I feel so much better but I still have exercise intolerance and PENE and here is the bad news wait for it...

I have been exercising for a while now on and off. And I am pretty sure is not deconditioning because the guy in the video said that 2 weeks even go long ways. I have been all along, I would stop exercising but in the worse of days I walked at least 10min (more than my healthy friends do!!!). I wear a pedometer and just work requires me to walk 3,000 steps a day, Today for example I reached 5,000 steps.

So you would think that if it was deconditioning I would have it gone by now right??? I was just gonna request the Patient Representative to bring this questions as a case study and see what is the consensus out there. Would be nice for others to join (unfortunately I think the primary cause of CFS is still there).


That's what I was afraid of -- that even with POTS treatment I'm still going to have exercise intolerance and PENE. It wouldn't be unexpected, of course.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
This may help explain what you're trying to say, heapsreal
http://en.wikipedia.org/wiki/File:Exercise_zones.png

Note that these levels are NOT appropriate for people with ME. Our AT occurs at a significantly lower HR than this chart shows and it could be damaging to expect your body to perform like a healthy person's.

The first time my AT was tested, I could go over it just by walking across the room at a normal speed. I was not panting, sweating, or anything noticeable. With a HR monitor I could see my HR climbing rapidly, of course, but there were no other clues.

About 7 years later, after methylation treatment, Valcyte, thyroid replacement, and lots of supps I felt a lot better, but still had energy problems. I could do more (although still not much). Exercise testing at that point showed that my AT had changed by.... absolutely nothing. I could do a bit more before going over my AT, but my AT was exactly the same as it was 7 years before.

Pacific Fatigue Labs (Drs Snell and ???) or Dr Sol (at Dr Klimas') may have provided guidance for how to estimate AT for ME patients who don't have access to exercise testing.

yes that charts about right.
i remember the rough guide use to be if u were unable to talk then it was anaerobic, but again different for us.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I would think that as long as you still have cognitive dysfunction, you still have ME. The brain is an energy hog and could be the last organ to respond as you recover.
 

SOC

Senior Member
Messages
7,849
I would think that as long as you still have cognitive dysfunction, you still have ME. The brain is an energy hog and could be the last organ to respond as you recover.

Good point. I wondered if cognitive dysfunction could be a permanent problem resulting from infections, but when I realized that it varies inversely with the amount of physical work I do, I decided that it's probably more an energy issue.

There's also the whole issue of: if I can function "normally" but am still taking meds for symptoms, do I still have ME? I say yes, but I don't know what the official position is (as if there is one).

Day 2 post-overdoing
I woke up today feeling fine, although I woke up a couple of hours later than usual. No ME pain, no fatigue or exhaustion, no flu-like symptoms.

By the end of yesterday, even though I did little physically that day, I noticed some cognitive issues -- losing words and other verbal problems. Today I don't notice that, but I haven't had anyone to talk to since I've been awake, so it's not much of a test (unless you're a psychology/psychiatry researcher).

So far, so good.