My experience with exercise testing -- the advantages and disadvantages

[SOC]

I wrote all this is a post on another thread, but decided it was a bit OT, so here it is an a new thread instead for those who want to know what it's like. Hopefully others will add their experiences, positive and negative, to help patients make the decision about whether (and how) they want to do it.

I've done exercise testing twice now. Once about 4 months after my diagnosis (3 years after the sudden onset viral illness that was my trigger). At that time I was still trying to behave "normally" and going through push-crash cycles.

The second time was 4.5 years later (about 1.5 years ago) after Valcyte and Valtrex treatment. I felt hugely better, but was still extremely limited physically and was using my previously determined AT to manage my activity. I was hoping my AT would be higher so that I could do more without exceeding it (and thereby inducing a crash). It wasn't any higher. Not a bit. Exactly the same.

What follows is my assessment of the value of exercise testing to patients.

I think that activity management based on AT may improve outcome in some current treatment modalities. Some, if not all, current medications (including supplements) may not be as effective if the patient continues to stress the system. Or perhaps the body can't heal even if, for example, a pathogen has been eliminated. Appropriate rest while minimizing deconditioning with excessive rest is advised in all serious illnesses. The issue is what is appropriate rest for us. My guess is that it is a LOT more rest than most of us are getting.

I had made what I felt was a huge reduction in my activity -- maybe 50% -- when I got ill. After AT testing I realized I had to go down to about 10-15% of my previous activity level to stay below my AT. It was only then that I (mostly) stopped having crashes and getting slowly worse. Eliminating most of the crashes (I can still crash from an infection) was a big benefit to me. My baseline was getting a little bit worse after each crash. After limiting my activity according to my AT, and thereby severely reducing the number of crashes, I stopped getting worse, and maybe started getting a tiny bit better.

With various treatments I've been able to increase that 10-15% to somewhere about 60-70% and heading upwards rapidly. However, during some treatments (Valcyte in particular) and infections/vaccinations, I've had to back down a bit in my activity level to stay below my AT. I wouldn't have known this if I didn't have my AT info to work with.

This could be just me, of course. I tend to be a data-driven person, and not the best at understanding my body -- and my body's not the best at communicating with me, either. A high pain threshold and a remarkable physiological capability to cope with adverse conditions, while great for a Navy SEAL in a crisis, is not the best for judging general health in the long-term. So having data to work with -- don't go over this number even if you feel capable of continuing -- makes it possible for me to manage my activity correctly. I suspect a lot of us do more than we should be doing, though, not just me.

I see a current place for exercise testing in ME/CFS treatment. I think Dr Sol's choice to test to AT rather than max capability is the wiser choice for routine use. I think most (not all) of us could do her test and gain highly useful information without serious adverse consequences.

The first time I did exercise testing, I was tested to max. I got off the bike wheezing, near vomiting, and ready to pass out. I crashed several days later. Big PENE attack. Not fun. But ultimately useful enough I was willing to do it again 5 years later at Dr Rey's office to see if my AT had changed after aggressive antiviral treatment (It hadn't).

The second test (Dr Sol's) was really, really easy -- sitting on a bike and waving my legs around. I can hardly even call it pedaling. There was no resistance (that I could feel). This went on a few minutes (less than 10, I believe) until I reached my AT, when we quit. ( Ummmm..... yeah, I actually threw up afterwards, but it wasn't the test, it was food poisoning -- my husband had it, too. Don't eat in Mexican restaurants near the airport in Miami. ) No wheezing, no crash, easy peasy -- and at that point I was still in a wheelchair for any distance over 30-50 ft [10-20 m for you sensible metric users].

Unfortunately, I didn't get any new information from the second test. Neither doc said so outright, but my impression is that they didn't/don't expect my abnormally low AT to change, even as I get better. I don't believe there is any research on that topic, though. What has changed for me is that I can now do more without exceeding my AT.

 

[Purple]

Unfortunately, I didn't get any new information from the second test. Neither doc said so outright, but my impression is that they didn't/don't expect my abnormally low AT to change, even as I get better. I don't believe there is any research on that topic, though. What has changed for me is that I can now do more without exceeding my AT.

Sorry your AT didn't improve. However, I do find this fascinating - and wonder more than ever what the biological mechanisms behind this are. Anyone knows any inquiring minds with funds at their disposal to research this? I suspect understanding this aspect of ME/CFS would solve a big puzzle.

 

[rosie26]

Interesting read SOC thanks, will need to read a couple more times to get my head around the exercise tests though.

Regarding rest and how much, I found my body told me, well it pushed me down if I didn't lay down. And you are right I don't think we probably rest as much as we should. I wouldn't worry to much about deconditioning, most of us ME sufferers push ourselves far to much in sickness, I guess we probably condition ourselves more than we should by overdoing it

 

[Seven7]

SOC so funny I am going to check my AT too again, I am seriously more active so I am curious too. Will update you.

 

[SOC]

Sorry your AT didn't improve. However, I do find this fascinating - and wonder more than ever what the biological mechanisms behind this are. Anyone knows any inquiring minds with funds at their disposal to research this? I suspect understanding this aspect of ME/CFS would solve a big puzzle.

My understanding, and I'm certainly no expert on this, is that our aerobic metabolism is severely impaired. Our low level anaerobic metabolism (ATP/CP) is intact, as is our high level anaerobic metabolism (anaerobic glycolysis).

From Wikipedia http://en.wikipedia.org/wiki/Anaerobic_exercise

Activities such as walking, long slow runs, rowing, and cycling require a great deal of oxygen to generate the energy needed for prolonged exercise (i.e., aerobic energy expenditure). In sports which require repeated short bursts of exercise however, the anaerobic system enables muscles to recover for the next burst.

The AT is the point where anaerobic glycolysis kicks in (at ~80% of max HR on above chart for healthy people). It's very inefficient, but useful in limited amounts and situations, like sprinting. Most people don't use anaerobic metabolism for daily activities (notice it's labeled hardcore training in the above table). We do. For some (many?, most?) of us, sitting upright in a chair uses all the aerobic capacity we have. Anything else, like walking across the room, requires us to use anaerobic metabolism (like a healthy person doing hardcore training).

Since we can't use aerobic glycolysis effectively, we go quickly from ATP/CP anaerobic metabolism (which only lasts a couple of minutes) into anaerobic glycolysis very quickly.

Most people (healthy and ill) operate the majority of their daily lives using efficient aerobic metabolism. We can't. It doesn't work well. So we end up mostly using highly inefficient anaerobic glycolysis (being over our AT), which is not good for our bodies. It produces toxins that our bodies can clear in small amounts, but not in the large amounts produced when it's the main form of energy metabolism the body is using.

That's the theory, anyway, as I understand it. The exercise physiologists studying ME/CFS are trying to figure this out. I don't think anyone knows why we would have impaired aerobic metabolism. Damage to mitochondria, perhaps? Something autonomic? What caused the damage -- infection? injury? genetic? Lots of questions, still, and not many answers.

 

[OverTheHills]

Hi SOC
Very interesting info, thanks.
I have varying levels of ability/disability (particularly in the UK I have a very strong seasonal relapse/remit pattern). I always assumed my AT would be varying, but now I see that it could be my capability below my AT that changes and perhaps I have unwittingly put myself into a relapse/prolonged crash when I do activities above AT even though I feel much better. Activities like hillier walks even if they aren't long.

I can't get to Miami to see Dr Sol, but there is a place here in Wellington NZ where one can get VO2max, lactate testing etc done. Perhaps I can get similar tests done there and start heart rate monitoring to keep my activity below AT. I am keen to avoid VO2max test.

Anyone know what I should I ask for at the lab?- just testing to identify my heart rate at AT??

Thanks
OTH

 

[SOC]

Anyone know what I should I ask for at the lab?- just testing to identify my heart rate at AT??

Yes, that's what I would ask for. They may think you're a bit of a kook, wanting to stop at your AT rather than "giving it your full effort". You might have some luck reading some exercise physiology research about ME/CFS from Staci Stevens or Dr Snell. I don't know if Dr Sol has published anything. If you can select a relevant paper and highlight bits about how long it takes ME/CFS patients to reach AT and what AT's researchers have seen, it might help your tester.



Good luck!

 

[Ruthie24]

@SOC-thanks for posting. Interesting reading your experiences. When I tested with Staci recently she said she has had people improve their AT with exercise. Curious if you have been exercising with that intention over the past years or if it was more the meds/supplements you were looking at as possibly improving AT?

I'm with you in thinking that the exercise testing was very helpful. If nothing else, since I was diagnosed with POTS first, it's given me something to take back to my POTS docs and say "this is why it hasn't been working for the past two years to keep trying to push 45-60 minutes of vigorous aerobic exercise everyday". I'm a fan of exercise, I like exercise, I WANT to exercise but when I keep ending up in bed and unable to do anything else afterwards for days/weeks/months, something is seriously WRONG!

And like you, my overall trend has been downward which was very discouraging so I am very hopeful that having this new tool will help me reverse that trend. The testing gave me the evidence I needed that what my body was telling me for the last 4 years was right, despite the fact that it doesn't make ANY sense from what I know medically or from a physical rehab/conditioning perspective. I still need to work on listening to both my body and my HR monitor when they're telling me that I'm doing too much though. That's another subject.

 

[SOC]

@SOC-thanks for posting. Interesting reading your experiences. When I tested with Staci recently she said she has had people improve their AT with exercise. Curious if you have been exercising with that intention over the past years or if it was more the meds/supplements you were looking at as possibly improving AT?

I have not been able to exercise other than some basic flat-on-the-back abdominal strengthening. Now that I'm able to do much more without reaching my AT, I've increased activity with light house- and yardwork. As soon as I feel like I'm managing all my activities of daily living well I'll add in some walking and light strength (not aerobic) exercise.

I seem to remember Dr Sol saying that she works on exercises to increase the low-end anaerobic capability so that patients can do more without going over their AT, not that it was increasing AT -- but I could be remembering incorrectly. I wonder what kind of exercise Staci Stevens is suggesting to increase AT. Do you know if the patients who increased AT were in the severe, moderate, or mild category?

I'm with you in thinking that the exercise testing was very helpful. If nothing else, since I was diagnosed with POTS first, it's given me something to take back to my POTS docs and say "this is why it hasn't been working for the past two years to keep trying to push 45-60 minutes of vigorous aerobic exercise everyday". I'm a fan of exercise, I like exercise, I WANT to exercise but when I keep ending up in bed and unable to do anything else afterwards for days/weeks/months, something is seriously WRONG!

Yep, it's a pretty clear indicator to people who understand such stuff that we've got a serious problem with exercise. If having the data stops most of the "get exercise" nagging, it can be a big stress reducer.

And like you, my overall trend has been downward which was very discouraging so I am very hopeful that having this new tool will help me reverse that trend. The testing gave me the evidence I needed that what my body was telling me for the last 4 years was right, despite the fact that it doesn't make ANY sense from what I know medically or from a physical rehab/conditioning perspective.

Helps having that hard data, doesn't it? I didn't even begin to rest enough (although I was really trying) until I had that AT number and a continuous HR monitor that yelled at me when I was doing too much -- which was every waking hour, as it turned out.

I still need to work on listening to both my body and my HR monitor when they're telling me that I'm doing too much though. That's another subject.

Got any kids around? My family and students delighted in scolding me when my HR monitor alarm went off. If I was tempted to ignore it, they scolded me into submission. Eventually, it finally got through my stubborn head that I was having fewer crashes and not getting worse anymore when I religiously stayed under my AT. Then I was a little more cooperative.

Oh yeah, extra little hint here:
At first I tried living just under my AT -- staying active but keeping just barely below my AT all the time. That didn't work. The total daily exertion was still too high. For me, getting near my AT had to be reserved for difficult things like climbing stairs or washing my hair or walking from the house to the garage. For normal activities I needed to stay well below my AT -- which is what healthy people do, after all. They don't spend their whole day at a sprint, either.

That reminds me of one of my few satisfying GP moments with this illness. I was trying to explain to my athletics-oriented GP how I was using my HR monitor to manage my activity and was already doing as much as I reasonably could and a nice long walk every day was out of the question. He asked me if I sure I was exercising enough -- was I sure I was doing as much as I could while still staying under my AT. In a rare flash of absence of brain fog, I asked him, "Do you? Are you near your AT right now? Do you spend your entire day in the Cardio/Endurance exercise zone? Then why should I? By HR-based exercise standards, I work harder than you do every single day." I pulled out the Exercise Zones chart (in my post above) and pointed out, "I'm in the Cardio/Endurance Zone walking across a room. A shower is well into the Hardcore Training or Maximum Effort range. I'm in the Fitness Zone just sitting here. Where are you on this chart right this minute? Are YOU working hard enough while still staying below your AT?" That shut him up good and quick. Not surprisingly, he fired me as a patient shortly after that, saying he didn't have the knowledge to effectively manage my case. No shit, Sherlock.

 

[Sasha]

This is all really interesting. I wish Connie or Staci would come up with an instruction sheet for how to test for this AT and then, for patients, how to deal with it.

I worked out (using that formula) what my AT was back in February and tried to stay under it for a couple of weeks, basically housebounding myself (I live up two flights of stairs and there's a slight incline between my apartment and the shops - easily enough to put me over my AT. I thought I would go nuts with cage fever, plus my stamina actually decreased in that time and I was feeling physically worse and worse. I think there's a lot of complexity (or possibly just my confusion!) involved in applying this. I had to abandon it.

 

[OverTheHills]

Boy that last bit made me laugh SOC. You have cheered up my morning.Thanks for sharing!
OTH

 

[rosie26]

Yes, don't you just love it ! ha ha

 

[SOC]

This is all really interesting. I wish Connie or Staci would come up with an instruction sheet for how to test for this AT and then, for patients, how to deal with it.

I worked out (using that formula) what my AT was back in February and tried to stay under it for a couple of weeks, basically housebounding myself (I live up two flights of stairs and there's a slight incline between my apartment and the shops - easily enough to put me over my AT. I thought I would go nuts with cage fever, plus my stamina actually decreased in that time and I was feeling physically worse and worse. I think there's a lot of complexity (or possibly just my confusion!) involved in applying this. I had to abandon it.

Which formula did you use? The one for healthy people can be way, way too high for us. I've heard of another formula running around which is supposed to be a better guess for people with ME/CFS, but I don't know if it's any good -- or what it is, for that matter. As you say, there's a lot of complexity and not much info, yet.

It would be nice if Connie or Staci put out an instruction sheet or the like. Perhaps if I get motivated enough I'll try to read and watch everything they've produced and see if there is such a thing out there.

 

[Sasha]

Which formula did you use? The one for healthy people can be way, way too high for us. I've heard of another formula running around which is supposed to be a better guess for people with ME/CFS, but I don't know if it's any good -- or what it is, for that matter. As you say, there's a lot of complexity and not much info, yet.

It would be nice if Connie or Staci put out an instruction sheet or the like. Perhaps if I get motivated enough I'll try to read and watch everything they've produced and see if there is such a thing out there.

Hi SOC - I used the one that Connie uses for PWME and my AT came out at something like 100, I think. Like you, I thought I was OK if I was at 99!

I ended up walking outside extremely slowly if I went at all and after a couple of weeks I felt a real drop in what I could do - I felt like I was deconditioning. I was trying at the same time to build up the kind of below-AT exercising that she suggested but it didn't seem to compensate.

 

[SOC]

Hi SOC - I used the one that Connie uses for PWME and my AT came out at something like 100, I think. Like you, I thought I was OK if I was at 99!

I ended up walking outside extremely slowly if I went at all and after a couple of weeks I felt a real drop in what I could do - I felt like I was deconditioning. I was trying at the same time to build up the kind of below-AT exercising that she suggested but it didn't seem to compensate.

Just goes to show that what works for some of us doesn't work for others. The last thing any of us want is to unnecessarily reduce functionality.

My wild guess would be that your actual AT is not as low as the formula calculates, so staying that far below your true AT all the time may indeed be causing deconditioning. Perhaps your AT is normal, which would be good news. Have you tried using the AT as calculated for healthy people your age? Maybe you only get PEM if you go over that....?

My AT is low, but not as extremely low as some people with ME/CFS. Mine is stuck right at 124 bpm, which as I get older isn't considered as bad since AT normally drops with age. All I have to do is wait, I guess. By the time I get to 65yo, my AT will be normal again.

For me, the worst part of the problem was I could go from my resting HR to over my AT in less than a minute. Doesn't give you much time to do anything. None of this messing around in the middle ranges for me. We don't do none of that moderation stuff in this here body -- from 85 bpm sitting to 105 bpm standing to 125 bpm walking across the room. Get that heart pumpin', girl! Okay, it doesn't work like that anymore, thank goodness. Now I have to work harder to get up to my AT -- say, carry 15-20 lbs up a flight of stairs. Makes life a whole lot easier.

 

[Sasha]

Just goes to show that what works for some of us doesn't work for others. The last thing any of us want is to unnecessarily reduce functionality.

My wild guess would be that your actual AT is not as low as the formula calculates, so staying that far below your true AT all the time may indeed be causing deconditioning. Perhaps your AT is normal, which would be good news. Have you tried using the AT as calculated for healthy people your age? Maybe you only get PEM if you go over that....?

My AT is low, but not as extremely low as some people with ME/CFS. Mine is stuck right at 124 bpm, which as I get older isn't considered as bad since AT normally drops with age. All I have to do is wait, I guess. By the time I get to 65yo, my AT will be normal again.

For me, the worst part of the problem was I could go from my resting HR to over my AT in less than a minute. Doesn't give you much time to do anything. None of this messing around in the middle ranges for me. We don't do none of that moderation stuff in this here body -- from 85 bpm sitting to 105 bpm standing to 125 bpm walking across the room. Get that heart pumpin', girl! Okay, it doesn't work like that anymore, thank goodness. Now I have to work harder to get up to my AT -- say, carry 15-20 lbs up a flight of stairs. Makes life a whole lot easier.

That's a good suggestion that maybe my AT isn't as low as calculated. If Connie had written up her testing protocol and if I could be sure that an NHS bod would actually follow it, I'd try to get it measured but I think it more likely that they'd just ignore anything an -- oh horror! -- non-NHS person said and flat out kill me on some exercise bike so all I can do is guess it. Cort mentioned on one of his posts that you could tell your AT by when you could no longer comfortably hold a conversation with someone. I'd forgotten about that - people used to say that that was how you could tell you were still in the aerobic zone. I've noticed lately that I do get slightly out of breath once I've left my flat and I'm a little way up the slope to the shops so maybe I should be noting when that kicks in and measuring my HR.

Like you, I was hugely surprised at how quickly my HR went up doing trivial stuff.

Thanks, SOC, that was a really useful post - it's got me thinking...

 

[SOC]

That's a good suggestion that maybe my AT isn't as low as calculated. If Connie had written up her testing protocol and if I could be sure that an NHS bod would actually follow it, I'd try to get it measured but I think it more likely that they'd just ignore anything an -- oh horror! -- non-NHS person said and flat out kill me on some exercise bike so all I can do is guess it. Cort mentioned on one of his posts that you could tell your AT by when you could no longer comfortably hold a conversation with someone. I'd forgotten about that - people used to say that that was how you could tell you were still in the aerobic zone. I've noticed lately that I do get slightly out of breath once I've left my flat and I'm a little way up the slope to the shops so maybe I should be noting when that kicks in and measuring my HR.

Like you, I was hugely surprised at how quickly my HR went up doing trivial stuff.

Thanks, SOC, that was a really useful post - it's got me thinking...

That's a good idea -- checking your HR when you get slightly out of breath on your walk. You can compare it to the normal AT for a healthy person and maybe make a better guess at your AT. I don't blame you for not wanting to risk some know-it-nothing killing you on an exercise bike. I've done the exercise test twice so I know what's supposed to happen, but I still don't trust my local medical people to do it. They think they know everything, but they know nothing about ME/CFS... a bad combination for the patient.

The HR going up quickly can be a low blood volume/cardiac problem.....it was for me, anyway. Florinef + electrolyte fluid loading and HR control med (verapamil in my case) made a big difference there.

 

[waiting]

Which formula did you use? The one for healthy people can be way, way too high for us. I've heard of another formula running around which is supposed to be a better guess for people with ME/CFS, but I don't know if it's any good -- or what it is, for that matter. As you say, there's a lot of complexity and not much info, yet.

It would be nice if Connie or Staci put out an instruction sheet or the like. Perhaps if I get motivated enough I'll try to read and watch everything they've produced and see if there is such a thing out there.

The only way to measure the HR at AT accurately is with a CPET. And patients with ME/CFS must do Workwell Foundation's 2-day test protocol for accurate results because the HR at AT can drop significantly from Day 1 to Day 2 (so, you use your Day 2 results for your HR at AT number).

However, Jennie Spotila (jspotila) wrote a comprehensive article for CAA, "The E-Word", describing how to calculate an approximate AT -- if you don't undergo the CPET. She interviewed Staci Stevens, Dr. Chris Snell and Dr. Todd Davenport (all Workwell Foundation, formerly Pacific Fatigue Lab) for the article. Jennie writes: "Stevens suggests using the Borg scale13 to measure an individual’s Rating of Perceived Exertion (RPE). "

As you can see from the quote above, in her endnotes, Jennie included a link to the Borg Rating of Perceived Exertion scale. Jennie writes: "Patients should not exceed RPE of 13 to 15, corresponding to the exertion feeling “somewhat hard.” So, you are probably at or above your AT if you rate your perceived exertion, during an activity, between 13 and 15.

Hope this helps.

 

[Sparrow]

Jennie writes: "Patients should not exceed RPE of 13 to 15, corresponding to the exertion feeling “somewhat hard.”

I was told the same thing by the ME/CFS specialist exercise physiologist who works with me. Any activity I do should be easier than "somewhat hard". It's helped.

 

[ahimsa]

"I'm in the Fitness Zone just sitting here."

SOC, I have not read all the posts in detail yet (just skimming so far) but that response to your doctor, especially the line I quoted above, just made my day! Good for you!