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Learning new terms

Friday, May 24, 2019

I've been doing the reading recommended by the doc and have learned a new term: Post-exertional Malaise (PEM).

Post-exertional malaise (PEM) is the worsening of symptoms after even minor physical, mental or emotional exertion. The symptoms typically get worse 12 to 48 hours after the activity and can last for days or even weeks.

Yes, indeed! Something as simple as a conversation can set me back and the conversation could be welcomed and pleasant. Doesn't matter. The human interaction can simply require more energy than what's available to me.

PEM can be addressed by activity management, also called pacing. The goal of pacing is to learn to balance rest and activity to avoid PEM flare-ups, which can be caused by exertion that patients cannot tolerate. To do this, patients need to find their individual limits for mental and physical activity. Then they need to plan activity and rest to stay within these limits. Some patients and doctors refer to staying within these limits as staying within the “energy envelope.” The limits may be different for each patient. Keeping activity and symptom diaries may help patients find their personal limits, especially early on in the illness.

This is essentially what I have been doing. When it became evident that I could no longer manage working. I removed myself from work despite not knowing what was wrong with me. I simply knew that I did not have it in me and could not do what was required of me.

For some patients, even daily chores and activities such as cleaning, preparing a meal, or taking a shower can be difficult and may need to be broken down into shorter, less strenuous pieces. Rehabilitation specialists or exercise physiologists may help patients with adjusting to life with this condition. Patients who have learned to listen to their bodies might benefit from carefully increasing exercise to improve fitness and avoid deconditioning. However, exercise is not a cure.

Daily chores and activities have been very difficult and have had to be broken down into shorter, less strenuous pieces. And, quite frankly, many things simply are not getting done. I have intuitively done this based on feedback from the body. Thankfully, I do a fairly good job of listening and responding accordingly.

Patients need to avoid ‘push-and-crash’ cycles through carefully managing activity. “Push-and-crash” cycles are when someone is having a good day and tries to push to do more than they would normally attempt (do too much, crash, rest, start to feel a little better, do too much once again). This can then lead to a “crash” (worsening of symptoms). Finding ways to make activities easier may be helpful, like sitting while doing the laundry or showering, taking frequent breaks, and dividing large tasks into smaller steps.

Interestingly enough, I realize that I have been sitting while doing laundry. Did not used to do that; but, I am now. Purchasing a shower bench would be a good idea. Not because I cannot stand. I simply do not have the energy to stand for long and run the risk of getting faint and passing out. And, because of the diagnosis that came in March, I've been advised not to take baths which was my preference. So, it has been showers since March and taking a shower is taxing.

Any activity or exercise plan for people with the condition needs to be carefully designed with input from each patient. While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with this condition do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with this condition. However, it is important that patients undertake activities that they can tolerate, as described above.

It is so validating to see that standard exercise recommendations for healthy people (which I have ignored since incurring the non-traumatic pelvic fracture) can be harmful for patients like myself. Yeah. My body did not lead me astray. emoticon ILL ADVISED!!!

PEM is simply one of six (6) primary symptom classes that healthcare providers may seek to address. I am challenged in each of these 6 symptom classes. Some more so than others. But, challenged in all areas nonetheless.

Seems to me avoiding "push-and-crash" cycles is wise in any regard. It's just that those in situations such as mine can pay dearly for such energy expenditure miscalculations. And, a good night's rest is not going to cut it. The toll extracted is far greater!
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Member Comments About This Blog Post
    Thank you Jeanknee for posting this information. I am sorry u are going thru this .. My husband has something going on and I notice he is having most of the symptoms u have been writing about... he does need to pace himself and get adequate rest. i have noticed his rest isn't really rest .. and i didn't know where to get any information on helping him... dr hasn't answered me at all when i question the fatigue he has.

    again my thanks, Debbie
    15 days ago
    16 days ago
    This sounds complicated, but I hope you can adjust your life so it's easier for you - and more comfortable!
    24 days ago
    great to know
    25 days ago
  • BJAEGER307
    At least you have some idea on what's going on. It's been a long and hard road to go down for you. Chronic fatigue syndrome, not any easy thing to diagnose, although I must say you have given your physician plenty of symptoms and on a consistent basis. With all the ups and downs you have had I'm glad that there is something that you can put a name to and how to treat this. I am with SRWYLE with his questions. You definitely have some life decisions to make.

    I just wanted you to know we appreciate this peek into your life, as I know that this has been a puzzling quest for you. I hope all of our diagnoses for you gave you avenues to look down to figure out this puzzle. I give you kudos for your determination and tenacity on this health quest. Also making your health provider listen to you and constantly keeping on her to make her look further into what was happening to you.

    I know that everyone has an opinion on what to do and that can be challenging to read all the time. Thank you for being patient with all of us.

    Hope you and hubby have a wonderful weekend. On a lighter note, we have a Baltimore Oriole feeding at our feeder. Not all the time but we have seen him several times. Hubby is doing more research as to what he likes to feed on. Also we have put a bee pond in our flower beds. Never knew bees needed one. I am also looking for a bird bath. Hubby talked me out of one, as our backyard is not big, and I have to find an area to put it. I may forgo a veggie garden and put the bird bath there. Still awaiting hummingbirds. Bought flowers for them, plus have feeders. Would be great to see them this year.
    25 days ago
  • GABY1948
    Never heard of PEM but it makes sense and you are definitely passing along much knowledge to the rest of us. I just wish the knowledge didn't refer to YOU!

    25 days ago
    This info on pacing is very helpful; and your intuitive listening to your own body even more so.. Push and crash constitutes duress: not gentle and respectful self-care.
    25 days ago
  • PHOENIX1949
    25 days ago
    Were you experiencing any of these symptoms when you were working out with Kendall a while back? It seems like all of this is fairly new, but maybe you were having the symptoms and just not sharing them with us then. Will your doctor put you on permanent (or temporary) disability? What does this mean for your future - will you need to think about retirement? Sorry for all the questions, but my mind is reeling from this. It seems like a major change over the course of a couple years. It breaks my heart that you have to go through this and make huge changes in your life.

    Of course, I always send you hugs and good wishes - that this information leads you to a place of peace and ease.
    25 days ago
  • RAMONA1954
    I've never heard the term PEM. However, I am familiar with the principles of pacing. With my multiple health issues it is the story of my life. The exhaustion I feel can be overwhelming. On good days I try to be normal. I thank you for the info
    25 days ago
    I'm familiar with the term pacing. It has been one of the things I must do everyday, otherwise, I will get crushing pain and fatigue. I don't mean just being tired, I'm talking about mind numbing fatigue - the kind of fatigue where your legs barely hold you until you can lie flat on the bed. After any bout of exercise or exertion, it is necessary for me to lie down and rest my spine. When my muscles are warm and feel good, I want to keep going. But....though it feels good in the moment if I go too far with exercise, I will pay later for overdoing the activity!

    The term Post-exertion Malaise is a new one for me. I'll have to do some research on it since it piques my interest. You've given me a lot to think about. Thank you!
    25 days ago

    Comment edited on: 5/25/2019 8:18:47 AM
    Thank you for sharing. It's a term I hadn't heard before, although the concept of "pacing" is familiar on so many levels. I notice in the comments the mention of chronic fatigue, fibromyalgia, and lupus... many chronic issues require this kind of careful management. You have been so attuned to your body and its abilities you may have already been implementing the initial stages of self-care for whatever your particular condition is diagnosed to be.

    Thank you for sharing as you learn!
    25 days ago

    Comment edited on: 5/25/2019 7:32:45 AM
    I've never heard of PEM.
    25 days ago
    I have been recently reading about the energy envelope theory (in connection with lupus) and your experience and observations tie in with that too. Thank you for sharing your findings and expending energy to help others here on Spark! Hugs...
    25 days ago
    I've not heard of this but it sounds similar to Chronic fatigue syndrome in some ways (ME)
    You are so selfless putting this information out there for people to learn from.
    I hope and pray something can be done to alleviate the draining symptom Jeanne. emoticon
    25 days ago
    It's great that you are finally getting some answers.

    How wonderful that you are tuned in to your body enough that you intuitively did a lot of the right things.

    Keep up the good work!

    26 days ago
    Thank your Jeanne for sharing this info. (((HUGS))) emoticon
    26 days ago
    Thanks so much for sharing your journey with us.
    26 days ago
  • CGEM61
    Thank you for sharing this. The pace concept is interesting, it makes me think of people I know that get wiped out easily after visits, or outings. It makes sense for many of us to keep the pace.
    For you it's like the turtle and the hare, you want to be the turtle! emoticon
    Hugs to you and thank you sooo much for sharing, this gives me thoughts to ponder.
    26 days ago
    This is quite the journey you are on, my dear friend. Your generosity in sharing (once a teacher always a teacher), even though it must come with its own challenges, is appreciated. I understand this at an experiential level... much if my own recovery of health, and especially from my TBI, could be described in these terms and of course you're right, pushing through simply does not work... but it's a difficult concept to explain to people in general. It's good to know that your doctor is able to provide quality resources, and support as you figure out together what will be best in your situation. My money remains on you, and you in my prayers.
    26 days ago
    Thank you for sharing this information.
    26 days ago
    Oh my. Thank you for teaching us about this. I never heard the term. HUGS to you for sharing.
    26 days ago
    We all are learning with you! It seems to share some symptoms with fibromyalgia (which I have) but also big differences. Very interesting.
    26 days ago
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