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Exercise tolerance test… Scared of PEM.

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Dizzyrose, Feb 17, 2018.

  1. Dizzyrose

    Dizzyrose

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    I have just started investigations for POTS And during my ECG A slight abnormality showed up and I have received a letter saying I need an exercise tolerance test. Really don’t want to do this as I’ve just crawled my way back To the level I was last July. (Bad crash due to a 2 week holiday...stupid idea I realise now!)
    Has anybody else had experience of this test for cardiology? I’m planning to ring the hospital and find out as much as I can about duration etc but can’t until Monday.
     
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  2. Chris

    Chris Senior Member

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    I don't know what kind of test this will be--VO2 Max? but Jennie Spotila has a terrifying account of her response to a 2 day repeat test that you can find on her blog occupyme.org
     
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  3. i-lava-u

    i-lava-u Senior Member

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    @Dizzyrose is it an exercise stress test on a treadmill? i just did this in December 2017
     
  4. Sushi

    Sushi Moderation Resource Albuquerque

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    I have had a number of cardiac treadmill tests. They weren't really for exercise tolerance but to monitor heart function under the stress of exertion. They can also do a similar test chemically and get similar data. I was given the choice by my cardiologist and chose the treadmill as I didn't want to take medications that would speed up the heart.

    I agree that this test can precipitate a crash, so that is something to consider. I'd want to find out more about what the doctor is trying to learn from this test and how important it is diagnostically. When I've done this test I've taken a recovery bag with hot tea, carbs and electrolytes...you name it. You could also request IV saline if that has been beneficial for you in the past. I did crash for a few days but came out of it but we each respond differently. I'd want my doctor to realize that this test has risks for an ME/CFS patient.
     
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  5. mattie

    mattie

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    I declined that test. Too dangerous.
     
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  6. Dizzyrose

    Dizzyrose

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    Hi Chris,I think it will probably be an exercise treadmill. When I googled NHS exercise stress test that’s what came up.
     
  7. Dizzyrose

    Dizzyrose

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    I -lava-u how did you react to the test And did they try and push you to carry on when you thought you should stop? I want them to get the information that they need about my heart but not at the expense of my CFS. Dilemma!
     
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  8. Dizzyrose

    Dizzyrose

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    Sushi Thank you for your information. Good idea about the recovery bag. I definitely need to find out as much information as possible and also make him realise how serious the consequences could be. I’ve then got a big decision to make I think.
     
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  9. Dizzyrose

    Dizzyrose

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    Mattie Did you decline because of the severity of crash that could happen? Was Yours going to be on the treadmill?
     
  10. mattie

    mattie

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    No it would have been a bike test.
    I would not risk a huge crash or even a permanent decline. I already know I have ME, and while these test results may be interesting or even valuable they would not contribute to effective treatment.
     
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  11. Sushi

    Sushi Moderation Resource Albuquerque

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    This is what you need to discuss with your doctor. Do you know why they want to do the test? It would be unlikely that there is an overall policy--at least I'd hope that each patient would be considered individually. In my case, my Electrophysiologist knows quite a bit about ME/CFS and dysautonomia and instructs the tech administering the test not to push me at all but to let me set my boundaries. So the tech kept reminding me that I could get off at any time I felt that I needed to. I, of course, wanted them to get the data they needed so kept up a discussion with the tech so I'd know when they had enough. This worked well, though it is very hard to guess when you've passed your limits to the extent that you will have a significant crash.
     
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  12. i-lava-u

    i-lava-u Senior Member

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    so true. my test was on Dec 4th. went from activity level of 3-4 hours out of bed daily (on a good day) to 1-2 hours out of bed daily after this test.

    this test was wwaayyy too much for my body to handle. they told me to stay on the treadmill "as long as I could" not as long as I felt was safe for me.

    *i have POTS and i had a weird sudden spike in my heart rate one day while sweeping the floor (HR jumped to 198 on fitbit) and i almost passed out

    as a result, did a 3 week heart monitor and echo. cardio stated everything looked ok structurally w heart (he thinks possible SVT caused HR spike) but just to "be safe" i should have an exercise stress test .

    i told him how concerned i was about the test and fear of a bad crash afterwords. he stated that not to worry, it should only take a few days of feeling tired afterwards, then i would be fine. well, nearly 3 months later, i still have not recovered from this test.

    in my case, my ME/CFS has consistently gotten worse over the years, each time I have a "bad crash" my "new" baseline is always worse. only time will tell if this a permanent worsening from this test.

    from reading your "new member introductory post", it sounds like you are currently not doing well. I think you are teetering on a very fragile state where it would not take much to tip you into a very severe state

    I think you are being very wise by researching this first and asking a lot of questions so you can make the decision that is best for you :hug:
     
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  13. RYO

    RYO Senior Member

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    Maureen Hansen at Cornell has been studying PEM in ME/CFS patients. Researchers will opt for bicycle exercise challenge test vs treadmill in ME/CFS patients. I recently returned from phase II of NIH intramural study. My baseline state was moderate to severe. PEM started approximately 1 day after exercise for me. (Most people experience a "delayed" reaction) It has taken me approximately 3-4 weeks to recover. Earlier in my illness, IV fluids helped but it is less effective for me now. I have yet to find anything that consistently helps to alleviate PEM for me. I struggle with chronic neuropathic pain from ME/CFS. My pain levels always worsen with PEM. Epsom salt baths, heating pads, and tylenol usually helps. I try to avoid using stronger pain medication.

    I struggled with my decision to enroll for phase 2 of NIH study. I knew it would crush me but on the other hand I thought it was important for researchers to obtain specimens and data on someone that was moderate to severe.

    It is difficult to predict how any individual with ME/CFS will react to exercise challenge. I think one of the most important factors is how you have reacted to over exertion in the past. Good luck with your decision.
     
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  14. Dizzyrose

    Dizzyrose

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    Thank you so much for Telling me of your experience. I think you were very brave to take part in the study and I hope that you are back to the baseline that you were at before the study. Good luck.
     
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  15. Dizzyrose

    Dizzyrose

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    I have written to the cardiologist concerned via his secretary to express my concerns, asked him exactly what this test entails and telling him that I only want to do the test if it is vital and I would prefer him to find another way to find the results. I also attached a copy of the ME International consensus panel for medical practitioners and drew his attention to the pathophysiology section on post-exertional neuro immune exhaustion .
    Thank you for all your comments, you helped me to really think about it and gave me the courage to put forward my views about my body And not be railroaded into something like sheep! Reviews And otherthe peoples comments say that he is A good understanding cardiologist So we will see by his reply, if I get one!
     
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