For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

Wednesday, March 23, 2011

Exercise Intolerance and Postural Orthostatic Tachycardia (POTS) or Chronic Fatigue Syndrome

If I had a nickel for every time someone with POTS, OI or CFS said "I can't exercise because it triggers severe fatigue" I would be a thousandaire by now!

Unfortunately, exercise intolerance appears to be a common condition associated with POTS and OI.  It even brings up the "chicken and egg" question for Chronic Fatigue patients with POTS: is it POTS with exercise intolerance or Chronic Fatigue Syndrome with POTS?

Conditions/circumstances which can exacerbate Exercise Intolerance:
  • In Stages II to IV any cardio exercises which get my heart rate up higher than 160 (even  >140 bpm can be a problem)  
  • Exercising standing up (treadmill, elyptical, walking)
  • Anaerobic exercises (strength training) 
  • Putting laundry away, walking to the other room if I have been laying prone on a bed or in a wheelchair.
Is Exercise Intolerance a result of a weak cardio vascular system?
It kinda looks that way!  As discussed previously in this blog, prolonged weightlessness in space can also cause POTS-like symptoms in otherwise healthy persons.  Dr. Levine and his team's work with NASA appears to have led them to develop the treatment protocol for POTS to address the similar symptoms associated with prolonged weightlessness, bedrest, POTS and OI.

According to Jack H. Wilmore, David L. Costill, W. Larry Kenney in their book "Physiology of Sports and Exercise":
In a microgravity environment, the reduction of loading leads to dramatic losses in muscle mass and strength, osteoporosis, and exercise intolerance at rates that mimic those seen in spinal cord-injured patients.
If a person has POTS, OI, Chronic Fatigue Syndrome they are at risk of exacerbating their symptoms through their own inactivity (reduction of loading?).  The evidence is clear that periods of prolonged inactivity or bed rest causes:
  • the heart muscle to shrink (yipper!!)
  • a reduction in blood volume
  • exercise intolerance
This is the "Catch 22":  If someone suffers from exercise intolerance upon exertion yet inactivity causes or makes exercise intolerance worse how do you break the cycle?
Speaking from experience it can be done but with effort.  I described my first experience with the POTS treatment protocol developed by Dr Levine and his team where, for the first month or so, I would have to rest for a few hours after each session and doing the exercises was really tough.  It took a month or two before I started seeing results.  I did not feel better right away.  But I did feel better, dramatically better by the third month.  I endured the fatigue, the exercise intolerance, in order to achieve long-term gain.

What is the effect of exercise on the heart and blood volume?
  • the heart muscle gets bigger (stronger)
  • blood volume is increased
I am not suggesting that POTS, OI or CFS is caused by inactivity or de-conditioning.  I am suggesting that de-conditioning or inactivity can make POTS, OI or CFS symptoms worse.


As a final thought, when embarking upon an exercise regime to treat the symptoms of POTS, OI or CFS please remember that there are exercise programs which have been found to be more effective than others.

10 comments:

  1. Hm. Very interesting post!
    Totally just speaking from my own experiences, here is my difficulty...

    The muscle(s) around my heart have actually enlarged (and I have not been exercising). When I last had my echo done (which was last year when I was at my worst) they said it is due to excess strain on the heart because it is working so hard.

    So my question is, I know exercise is good (even though my symptoms get VERY exacerbated) why would I want to make the muscles get even bigger when they said that mine were "too big".

    Ah, sorry - I kinda vented on your post. If anyone has any suggestions that would be great : )

    ♥Erin

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  2. Wow...that is totally fascinating! I guess the obvious question is why is your heart working so hard? Is it because your blood volume is low so it has to speed up to ensure the blood gets flowing around? I assume you have been diagnosed with just POTS or OI and have tried to rule out other conditions?

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  3. OK on the Mayo Clinic site it describes an enlarged heart as a symptom of some other conditiin and also lists hypertyroidism as something that could cause an enlarged heart. I hope you have found a good specialist that can assist you with devloping a treatment for it?

    Mayo Clinic info: http://www.mayoclinic.com/health/enlarged-heart/DS01129

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  4. Thanks for the info! I do have POTS & even standing up it can be around 145 : /

    Yeah I wasn't about to post all my stinky other problems I've had, but I have had hyperthyroid!

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  5. Hi, I am new to this blog and found this to be very interesting. I am planning an exercise regimen but I am wondering...how hard can I push myself? My heart rate goes up anywhere from 100bpm-150bpm just standing so I am wondering if it would be safe to push myself to the limit (heart rate of 170-200)?? I know cardio and strength training are the best for getting rid of this condition and am willing to do this but I am scared of getting my heart rate too high. However, if I need to do that for this condition to get better, I will. I hope that wasn't too confusing, lol. Thanks.

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  6. Hi Anonymous - if you have a positive diagnosis for POTS you can contact the Levine team regarding joining the study. If you qualify then you, with your doctor can undertake the controlled exercise program which has helped so many, such as myself, with their symptoms. You may also find the "Exercise" page on this blog helpful as well.
    Bes of Luck!!!

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  7. Hi I am interested in getting a rowing machine and wonder if you have any preferences. I definitely want one that displays heart rate since I also have pots and am doing it for my heart. I would love any suggestions.

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  8. Just dx w\pots 2 days ago. I am 29, marrired and have a 5 yr old. Gotta get my life back. Been struggling for awhile, thought I was nuts. Can you tell,me how to get in touch w dr. levine

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  9. the enlarged heart is likely due to the chronic tachycardia that is experienced with POTS. So, that takes away the "grinch syndrome" cause of POTS. Sounds more like autonomic dysfunction to me.

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    Replies
    1. I agree with the above post regarding autonomous dysfunction.

      BUT HEAR ME OUT PLEASE:

      Im saying this because ive been through years of crazy-ass stuff and I want to help you. so listen up people!..

      The fact remains that either our health systems are underfunded or we dont yet possess the intelligence necessary to understand what could be going on so to avoid heartache, the best thing we can all do is take it east, sleep, rest, do light cardio, or even weight training (slowly and then build up endurance)

      also focus on diet, diet is key, make sure you are getting omega 3,s magnesium, vitamid d, calcium b vits and vitamin a and E.

      those are essential trust me.

      Okay, lastly eat fruit and veg and try to eat as whole as you can (i.e. raw nuts/fruits) etc.

      obviously the american diet is rubbish and it doesnt help but with the right knowledge and some patience we can get through this slowly,

      Personally I am starting to recover, and in all honestly I didn't think it would ever happen. I wanted to kill myself.

      so please have faith, trust in what i say, (or just try it out for a few weeks if you dont believe me)

      and once you do then you will start to feel better!

      OH and sunshine, being positive, and chocolate will all help for sure.

      :)

      all the best.

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