Post- Exertional Malaise PEM

Is anyone experiencing this?

 "Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. PEM can be mitigated by activity management (pacing)."

I have been trying to maintain an exercise schedule but have been experiencing some profound 'crashing' if i seem to do too much. I am trying to determine if this is PM or CHF (HFpEF)  induced. I understand that activity pacing within an energy window ir reccomended but that is easier said han done. Interested in your responses and suggestions.  


4 Comments

Post implant adjustment

by Theknotguy - 2021-08-08 21:32:26

I feel that we all experience some of the post-implant stress after receiving the pacemaker/ICD.  It depends upon the individual, what kind of heart disease, what kind of physical shape you're in, and what kind of emotional state.  

Overall if the person is more positive thinking I feel they can adjust better.  I volunteered at the hospital where I received my pacemaker.  I assisted one lady in and then out post ICD implant.  She was in a terrible mood coming in and wasn't any better on the way out.  Her attitude was - the world doesn't like me - and that thinking carried into everything she did. There wasn't anything I could do in the short time I saw her and I feel she probably didn't adjust very well to the ICD either.  

Post implant some people experience euphoria because they now have a better heartbeat, more oxygen to their system, and overall just feel better.  Some people feel better but because their heart disease has kept them un-exercised they still have  trouble because they want to do more but their physical shape doesn't help them.  

Then, of course, you have to heal from the trauma of the implant procedure and that takes time too.  There is the initial four to six weeks healing time and the healing from the pain of the procedure.  

There is the emotional side of having the pacemaker too.  We read on this forum where people have the unit implanted, then can't mentally deal with having a large foreign object inside their body.  There have been psychological studies that people can suffer depression post implant too.  So that's a factor too.  I was very lucky.  I was in a coma and woke up with the  pacemaker already implanted.  But since I'd spent over 35 years in computer repair, having a computer type device inside my body didn't bother me.  In fact, I think it helped me. 

Overall I feel the attitude is the most important thing.  If you feel it will help you I feel your adjustment will go better and your body will adjust more quickly.  
 

PEM

by simonsimon - 2021-08-08 23:29:33

Thanks for the shot in the arm. 

Chronic fatigue

by Gemita - 2021-08-09 02:52:14

Hello Simon,

I would agree wholeheartedly with the Theknotguy’s response.  Your body has gone through so much stress and emotion and has used up so much of your energy stores.  What it actually needs now is perhaps absolute rest to recover rather than trying to push through your symptoms with structured, pacing exercises.  Gentle daily walks are fine.  Perhaps attempt to start a puzzle to keep you mentally stimulated.  Something you can stop and start whenever you like and gently build up to keep you engaged.  I recently completed a puzzle, so difficult but it fully engaged my brain when I was under stress and couldn’t concentrate on much else.

I was diagnosed with ME/CFS many years ago following cancer treatment (thankfully successfully treated).  I initially thought and was convinced my cancer had returned.  I was helped with CBT (a talking therapy) which is used for many chronic and acute illnesses.  They taught me also to “pace” myself with daily activities for both the body and the mind.  I was given structured pacing exercises and told to listen to my body and not to do too much today and then to crash tomorrow and remain crashed for days to follow.

Your words “I have been trying to maintain an exercise schedule but have been experiencing some profound 'crashing' if i seem to do too much” says it all.  The emphasis is on your words “if I try to do too much”.  I suspect your exercise pacing is still not set at the right level for you and you have simply expended more energy than you have in store.  Your energy levels following implant and adjusting to your device  and “pacing”, fear for the future, emotions of having a heart condition will all sap your energy stores.  Is there any wonder that you feel the way you do, dear Simon?  My assessment of your situation is that “pacing yourself within an energy window” is the problem itself and the wrong approach.  You need to do less but maintain a consistent, regular lower level of activity daily.  Find the right level first by working with perhaps the help of a cardio physiotherapist and also combine this physical therapy with some mental therapy like CBT (cognitive behavioural therapy) to help you find the right approach and balance for you.

Finally I believe it is unhelpful to focus on the question “I am trying to determine if this is pacemaker or heart failure with a preserved ejection fraction (HFpEF) induced”.  Dear Simon, your concerns on this will only add to your total energy expended and will serve no useful purpose, so why do it?  You have the best treatment - your CRT - in place to help you with this condition now in any event.

I wish you well, but please listen to your body.  Rest rest rest with both your body and mind.  Be consistent and regular with your daily exercise and mental stimulation but find “the right level for you” first and then slowly build on this.

Million thanks

by simonsimon - 2021-08-09 22:43:35

Seems so simple and reassuring when you all say it, wonder why my doctors never told me this. Thanks, that is definitely  information I can use. 

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