Post-Exertional Malaise, Exercise, Ans Dysfunction And Immune Impact

[Chaos]

Given all the discussion that has gone on here about exercise and it's role in recovering (or not) from POTS etc, I thought this might be interesting. Although it's aimed at the ME/CFS population the article itself has a fairly large part about POTS included in it.

Just thought it was interesting that Dr. Klimas is describing her gene expression studies as showing that in her patients when they move into anerobic exercise, the ANS tanks first, frequently very quickly, and then pulls along the immune system with it. Seems to hold great possibilities for explaining post-exertional malaise and perhaps even some of the mitochondrial dysfunction some of us seem to have.

Might explain why some of us respond better to exercise than others do.

I have included the link to the full synopsis of her talk and then pulled out just a little part of it to include here. There is more info on the link with steps as to how to progress an exercise program in order to avoid this and perhaps get back to full function without having the major crashes that so many of seem to have when we try to keep "pushing thru".

http://www.cortjohnson.org/blog/2013/01/23/chronic-fatigue-syndrome-mecfs-deconditioning-exercise-and-recovery-the-klimas-cdc-talk/

"Getting to the Heart of Post Exertional Malaise (???)

Dr. Klimas noted that time sensitive gene expression studies have revealed the fascinating and possibly absolutely pivotal finding that during exercise the autonomic nervous system tanks first in ME/CFS and then it takes down the immune system. That ANS ‘tank point’ occurs when the body changes over from aerobic to anerobic metabolism, a switch that occurs all too early for many people with ME/CFS.

Dr. Klimas' research suggests that autonomic nervous system issues trigger immune dysfunction

The ANS/Immune system cascade in ME/CFS suggests that if you can stop the autonomic nervous system from blowing up you may be able stop the immune cascade with all the nasty inflammation that follows; ie you might be able to stop the post-exertional malaise that whacks patients after exercise.

The autonomic nervous system (ANS) is showing up in spades in ME/CFS research right now. A major component of the stress response, the autonomic nervous system controls our breath, blood flows, blood pressure, heart rate, gut motility and is an important immune regulator. Dr. Klimas asserted the ANS/immune system interface plays a major role in how you feel from day to day.

Dr. Klimas is currently using gene expression tests to see which genes turn on and off in her patients as they go through her exercise program. If she can pinpoint which genes start flaking out as ME/CFS patients exercise she may be able to grab this disease by the horns. We are, after all, possibly talking about getting at the heart of post-exertional malaise..

The promise of gene expression – real time data on the processes happening in the body – has never been fulfilled in ME/CFS but it sounds like researchers are getting closer. The problem has been poor consistency and miserable validation across studies but the gene expression field is a young one and much improvement has been made over time.

Given the ANS trigger it was no surprise to hear that Dr. Klimas, an immunologist by training, focuses on getting the autonomic nervous system back on track first."

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[Zap]

Excellent - more immensely valuable research that involves genetics. What I would like to know is what Dr. Klimas does to get the autonomic nervous system back on track.

This also makes me (and I'm sure a number of others, as well) feel quite validated when it comes to the age old exercise/deconditioning theory. I still think that the simpler answer that a number of us were in good shape, and some very well conditioned, should have discounted it long ago, but old habits (and theories) seem to die hard.

[Chaos]

If you click on the link to the article that I posted and then click on some of the links within the article itself, you will see that ironically one of the things that Dr. Klimas uses to get the ANS back on track is .....exercise!! BUT....it's nothing like the exercise we are use to thinking of- especially those of us who were really active and in good physical shape before we got sick. It's NOT the Dr. Levine school of exercise.

What she's found is that for a lot of her patients, they are shifting from being in aerobic to anaerobic capacity within a matter of 2-3 minutes in some cases. When they go into that anaerobic state (which could be doing something as minimal as emptying the dishwasher, or walking up a couple of stairs), that's what triggers the ANS to tank and then leads to the immune system following suit.

So, to put it very simply, she's telling her patients to NEVER get into that anaerobic situation whether it's when they are "exercising" or when they are doing ADLs like bathing/ dressing/ etc etc. So, she's having her patients basically living with a heart monitor on at all times (when out of bed) and making sure they always stay below their specified target HRs, and then progressing them very slowly with their "exercise" program. At her clinic she's determining their limits by VO2max testing but you can also use the 220 - your age x .65 to give you a ball park figure of a target you should stay below.

I'm sure that's not all she's doing to control the ANS as I've seen that she also prescribes meds etc that are appropriate to help, addresses sleep issues, etc etc.

[arizona girl]

Chaos, this is so interesting. I went and looked at the article/website. My max would be 98. Just standing up does puts a lot of us in that range. So how do you get around that. I am currently trying to get some exercise back in. Did physicial therapy and actually got worse. Looks like I had hypermobility issues that were undiagnosed and I was pulling my hip out doing the walking resistance exercises in the pool. This caused a huge knot in my hip and extremely spasmed hip flexors. With the mobility issues I shouldn't have been doing that type of resistance.

It is so frustrating, I used to be an athlete when I was younger, in spite of being ill. I certainly wasn't deconditioned then. It was during dance aeorbics I started collapsing, but I'd had near syncopes since childhood, inspite of being a very active child, who always had a hard time getting up in the mornings.

Her discussion on things being switched off, makes we wonder if that could also be related to mthfr. Mine is switched causing me to be homozygous and unable to process folic acid and any other meds/chem that follow that pathway. I'm not aware that mthfr can be corrected, treatment is to bypass the defect by supping the active form methylfolate.

hmmm, another thing to ponder, thanks for posting, it may help me get a better way to exercise.

[issie]

Hmmm, the link isn't pulling it up for me?????

Issie

[issie]

Yeah, just standing gets me above my highest hr. (with that formula). So, how do you do any thing - when the simple act of standing puts you way above where you should be?

Issie

[volo]

Just standing gets me above that recommended HR too.

I find this link very interesting, because it is close to what I did when I knew I had POTS but didn't have a diagnosis or treatment yet. I learned that my symptoms worsened when my HR went over 135 or so for any extended time, so I tried to do whatever activity I could below 125 bpm (which meant I sometimes hit 135, because my HR rises rapidly with any exertion, but I would only hit it briefly).

That meant I could do weight exercises on the floor, if I rested between sets. I could use a recumbent bike for about 10 minutes at a time by pedalling for 45 secs, resting for 30 secs or so, and repeating. I could walk for a minute at a time, or do a flight of stairs, then rest and repeat. I think it helped a bit, and it meant I wasn't bedridden the next day as I usually was when I did more and let my heart rate get higher.

Just a few days on meds, and so far it seems I can do more now. But, from my past experience, I am not going to take any big increments - just build up slowly on activity and see how it goes.

[Chaos]

Volo- I think it sounds like you are on the right track. From the videos I was watching of her "technique", they are advancing people EXTREMELY slowly. Like 2-3 weeks at a level of 2 minutes exercise/ 2 minutes of rest /2 minutes exercise/ 2 minutes of rest etc but trying to never exceed that HR limit. What she tells her patients is to have the HR monitor set with the alarm that will go off if you exceed that limit so you know and then you go sit or lie down until it goes down.

This is definitely not a "quick fix" solution. It's taking people months and months of very slow patient progress but it seems like people ARE getting fully back to functioning and doing quite well.

Personally the hardest part for me is changing my attitude away from "pushing thru" and "just gotta get it done" regardless of the toll it takes on my body to one of fully listening to what my body might be trying to tell me.

[Chaos]

Arizona Girl- Yes I have the same issue. Did you see the link I posted the other day in the other thread on Post exertional fatigue? In that article one of the women had a target of 80. So, I think it can be done but with extreme patience. I'm certainly not an expert, just trying to figure it out myself here too.

I do know that one of the things she has you do is get a sense of your average resting HR when you wake up in the morning. So for a week check it maybe 15 minutes after you wake up. Then always check it and if you notice that your resting HR is more than 8-10% higher than your normal, you shouldn't even attempt to exercise that day, because that's "going to be a bad day". That's how conservative they are with this exercise program.

[Chaos]

Issie- did you get the link to work? I can pm you a different one if not.....

[arizona girl]

Hey chaos,

I already know my resting heart rate avg. I always take my bp/hr before I get up. Right now my average is 120/76 hr/64. This is actually an improvement for me because I used to wake up hypo and brady in low 50's and occasional 49. Today I went from 62 to 106 without doing anything but walking to the kitchen.

That however has been happening much less frequently, since I've been trying my underlying causes. So, your not suppose to exercise on tachy days?

I've been doing wall isometric squats and those bed leg exercises someone just posted. To soon to tell anything yet.

[issie]

Issie- did you get the link to work? I can pm you a different one if not.....

No . . .it still won't. Hey, will you e-mail it to me? THANKS!

Issie

[Altruism]

Can you send it to me too, please? It says page not found.

Also, upon standng my HR is 120-130,so I think I know in advance my HR is above the target zone.

[Zap]

Yeah, I wasn't able to reach the link so I couldn't read more. That approach seems to make a lot more sense, logically. Otherwise, why could some have such heart rates with so little exertion. My higher heart rates tend to be just below the number in question, but that is generally not during more taxing activity either.

You also said the magic words - "just get it done, push through". That was my problem for years, juggling way more than I should have to boot. That is probably the hardest thing to accept any (greatly) reduced limits. If it would be for an end goal of re-adjusting things, then I could see the value, though.

[Chaos]

Sorry that the link isn't working. If you google Health Rising Cort Johnson you should find his new web site which has the full article on it. It also has links that will take you to further reading on her theories etc.

Az Girl- Yes, she clearly says if your resting HR is 8-10% above your normal resting HR you shouldn't even attempt to exercise that day.

I will pm some other links to those of you who asked for them.

[Katybug]

Ooooo...I hope Dr K is successful with this research! It would be wonderful to really exercise again.

[POTLUCK]

When I go to the link it says Health Rising but it says there is nothing available.

One question I have about the idea of switching from aerobic to anaerobic metabolism is that I am not sure one can assume this occurs at the same point relative to heart rate that it would in a normal person.

As an example if I run and my heart rate is going 20 points faster than my age calculated maximum heart rate for a normal person my age, well my VO2 max ( the oxygen I am taking in can not be greater than 100% )

I asked my Cardiologist about this and he scheduled me for a treadmill test to measure VO2 max and see.

Unfortunately it is this Wednesday and I have been sick with a virus/flu for 12 days now, so hopig I will be able to run. I need to run real hard and go a good 20 points over my calculated maximumum HR to make the test work.

I have wondered why I do not seem to make more progress in building up speed or increasing distance. ( It scares me that it might have something to do with this Mitochondrial ETC Complex 3 diagnosis - I have no idea if it does, but hope it is just the POTS slowing things down and it can be overcome. ) Maybe the test will tell when the switch occurs and I can slow down my pace to that heart rate.

[Chaos]

http://www.hhs.gov/advcomcfs/meetings/presentations/presentation_10132010_snell-stevens.pdf

http://phoenixrising.me/living-i-the-basics/treating-chronic-fatigue-syndrome-mecfs-exercise

Not sure why the original link isn't working but here are a couple others that describe the whole PEM phenomena and how it can be tested for. Pacific labs of the northwest I think was the one that came up with it first.

Potluck- The second link has several other links you can click on to get more specifics about the way Dr. Klimas recommends the exercise program be done. There are some videos that are very specific and pretty short you can watch. Her exercise physiologist Connie Sol (?) has said that if you are going to get a VO2 max test done somewhere where they aren't familiar with the technique that they use, to have them call her and she'll give them the details. I think it's a little different than how a lot of places do it.

The research has shown pretty consistently that ME/CFS patients will go into an anaerobic state MUCH more quickly and at a much lower "ceiling" than a normal sedentary person does.

I'm still trying to get the full transcript of Dr. Klimas' testimony to NIH a couple weeks ago where she was talking about her research showing that once her patients go into anaerobic state, they trigger ANS dysfunction which then pulls along the immune system dysfunction with it. Has anyone else found it yet?

[POTLUCK]

Chaos-thanks. I went for my VO2 max test today. It was ordered by the cardiologist who treats my POTS and done by his section of the hospital. He has cleared me to exercise at a HR that is 25 points over my calculated max with a stress echo. Yet they did not want me to run faster than my calculated max HR because they said what if something happened, we would have to get the cardiologist right away. I said what if something happened when I am running on a trail at home far from the hospital by myself. Thats OK? They assured me that was OK. Hello?? Anyways my VO2 was at 109% when my HR was just over 100%. So much for the deconditioning theory. I think the test was a waste of time. Will read your links soon.

[Batik]

I've been following this thread with interest. Whenever I've tried exercise regimes in the past, I've increased the amount of exercise I do all in one block, enjoyed myself for a few weeks, then hit a huge ME crash that would take a lot longer to recover from.

I'm now working on my exercise programme on the principle of not exercising for more than 1.5 min at a time, and checking that I don't go above the HR suggested for my age (111, since I'm 35). Could someone tell me more about this business of taking your HR first thing in the morning? I always take my temperature at 9am in the interests of tracking my hormonal cycles, and that would be a nice consistent time to take my HR. But right now I'm sleeping about 11-12 hours a night, for some reason, so it's nowhere near when I get up. When I do get up, I tend to have something get me out of bed before I have a chance to faff around taking my HR.

Interestingly, I've found that setting up my mini exercise bike on the floor sends my HR up into the 90s, due to all the bending down and so forth, but once I'm sitting back and pedalling (it's about the same as a recumbent bike, I think), my HR gradually drops again! Whereas the exercise involving the roller slidey thing on the floor will take my HR up to about 103, although it feels comfortable to do and I'm not continuing to the point of breathlessness. That new pulse oximeter is proving to be useful.

[Chaos]

Batik- I believe the idea is to take your HR within 5-10 minutes of when you wake up, although I have seen that people say the get up and move around for 15-30 minutes and then lie down again and get their resting HR at that point. I think the important thing is to be consistent and get a sense of what your "normal" range is so that you can tell when you're having a bad day vs a good day.

http://www.cfsknowledgecenter.com/index.php

This is a link to another site that has a lot of really helpful information on this particular technique. If you join the exercise group you can post questions and get specific answers to things like this. Dr. Nancy Klimas has her videos posted on this site so it has a lot of direct info from her there.

Good luck. Hope this allows you to see some slow continued progress without those nasty ME crashes in-between.

[kitt]

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[issie]

Kitt, my sister has CFS and OI. If you do the bullet points for CFS I have all but a few of them. She doesn't have the tachy issues, like I do. But, I don't pass out like she does. And she is always saying how tired she is. I don't have a lot of stamina - but, I wouldn't say I feel sooooo tired either - like she does. Her one boy that passes out - is more like his mom though and the one daughter is more like me. So, the autonomic issues can run in families and be very similar but not the same.

Issie

[Chaos]

Kitt- there are several of us on here who have both diagnoses. I posted this info as there have been a lot of people on here who have had success with exercise helping their POTS symptoms, but there have also been quite a few who haven't. Many have tried repeatedly to advance their exercise programs only to crash time after time and others report their experience with post-exertional malaise. Some, like me, happened to get a dysautonomia/POTS/NMH diagnosis first but thru this site and continued research/reading have gone on to get another diagnosis of Neuro Immune Disease. (The doctor I saw is also an ME/CFS specialist but refuses to call it CFS.)

There is so much overlap between the two conditions. I understand that not everyone who has POTS has CFS (neuro immune disease) but I believe Vanderbilt recently released a study showing that many, if not most of their study participants who had POTS (in that study at least) met the criteria for CFS as well. While this is NOT a CFS forum, there does seem to be enough overlap in symptoms and, as Issie pointed out, in family members who may have one or the other conditions, that it seems valid to be at least alerting people to the fact that some of this info may pertain to them....or help them in some way. If it doesn't apply to them, I trust they'll move on to something that does.

[comfortzone]

I fully encourage dabbling on any site you feel like dabbling on. I am too in full support of learning through books, videos and any other means available like medical libraries. I dislike policing of who should go on this site and when and who should go on that site and when. I understand that suffering is suffering and as much as people may like to compare and some even 'wear' their dx like a badge of courage to me it's 'all the same' - a human suffering is just that. So in this day and age whether you spend your money on insurance copays or entirely self-pay - whether you 'have' this or don't 'have' this the bottom line is you are responsible for your own health to the best of your ability through whatever means you find helpful. Feel free to 'clog' up any forum you like - if the info is helpful take it and run with it either to try new things or find a clinician who will delve deeper .... Many disease states and disorders do have overlapping symptoms - and not each symptom group will fit in perfectly to one or another... people are people period. Labels don't change that. There could well be a bigger picture or continuum that we haven't begun to look at yet. So if a common trio is EDS, OI and Chronic Fatigue issues or even ME - so be it! If another trio is EDS, OI, Mast Cell - so be it! It could be a mere observance that clinicians and people can speculate on, act on, etc....or it could be hitting the nail on the head for life changing treatment regimens. A disabling disease state shouldn't hopefully be in people's minds as carrying a hierarchy - like "we" are sicker than "they" so don't go messing around in our forum.... You never know how peoples coping mechanisms can be strengthened by reading and absorbing people that 'get' being disabled from living a prior healthy state...no matter what the cause. And if you do find you have POTS and that CFS/ME or neuroimmune disease fits through deeper inspection - thank God once again for the ability to research such possibilities to improve states of health. Often the sickest of the sick will find their way to support on the forums of the internet .... no longer does housebound necessarily mean total isolation....from cancer to ALS to dysautonomia and neuroimmune problems and fully beyond - if you have an issue learn what you can and run with it - you may achieve better health and in turn help others who really need it.