FM Friends, How Do You Handle Post-Exertional Malaise?

FM Friends, How Do You Handle Post-Exertional Malaise?

Through the Fog
You might be asking yourself what on earth is post-exertional malaise (PEM), and what does it have to do with fibromyalgia? Not everyone experiences this, but for those of us who do, it’s debilitating.

The medical definition of malaise, according to Merriam-Webster, is defined as “an indefinite feeling of debility or lack of health often indicative of or accompanying the onset of an illness.”

“Post-exertional means” occurring after exercise or any other type of exertion.

Like all other symptoms we deal with in fibromyalgia, this also can vary in intensity and severity. Maybe you worked out too long at the gym, or did too much walking on a trip. Maybe you did too much on a day that you felt better, like cleaning your home. For me and many others, it hits when I’ve walked around a store for 20-30 minutes, or when I take a shower. It takes me several hours, and sometimes days, to feel like myself again.

PEM is not just physical, it also can be mental. If you have a job that requires a lot of thinking or reading for a long period of time, it can become mentally exhausting. I seem to have issues with both. Of course, if I’m physically exhausted, then I also will be at a disadvantage mentally and emotionally.

PEM causes a massive energy crash. It’s like hitting a wall and there’s no mistaking it when it happens. We are talking about extreme exhaustion, and a potential increase in pain and other symptoms. It is most severe in those of us who not only have FM, but also chronic fatigue. Suffering with this is one reason I get so frustrated with people who tell me I should exercise more.

Recently, I was at a major department store for well over an hour, walking to the women’s department on the opposite side of the huge store, and then searching for the right dress to wear to my son’s wedding next month. I knew I was in trouble when I started limping while leaving the store. I then went straight to the hairdresser for a trim. I was no good for the rest of that day, and for several days after due to PEM. What should have been a fun morning turned into a few horrible days with my FM.

Do you struggle with post-exertional malaise? How has it impacted your life?

***

Note:Β Fibromyalgia News TodayΒ is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those ofΒ Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining toΒ fibromyalgia.

68 comments

  1. Julie Shenk says:

    Sadly, we are two peas in a pod with this. I am able and capable of exercise and outings and feel well and part of life. But then the pin hole in my gas tank leaks out all the energy and I become weak, nauseated, experiencing dizziness and can have more pain. It’s baffling indeed. I deal with both physical and mental fatigue after the fact like you. One time a neurologist told me mental fatigue is just as bad as physical. I believe it. I do try to pace but I need to live someway and somehow. My life is about experimenting and hoping.

    • Joyce Rayner says:

      I laughed,not because it was funny. But today I felt great.And walked in and out of stores 2 plus hours.Shortly after I was limping and wondering what happened ?? Then I remembered the Rheu.that I see warned me about “overdoing” There are days when I pay the piper…Now I am in the process of determining what is worth the price to pay the day after.
      I do enjoy your post…Thank you so much for what you do.

    • Vickie says:

      I can so relate to this! I just found this site this morning and I feel better already knowing that I am not alone. I hate PEM (new word for me) but I know the feeling all too well. I can pace myself on days off but at work I have no choice.

  2. Kristin Warry says:

    I tend to think of it like a hangover! I use up a bit extra energy because Im enjoying myself, knowing tomorrow I will pay. But the payback is worth it for as active a life as possible. When I am on holiday, we try to alternate busy days with quiet days. I also know that I can chill beforehand to give me maximum energy for the holiday, and I make sure I only have therapeutic appointments for the week after. Its about deciding who and what is worth the “hangover” 😁

    • Elizabeth Stern says:

      Yes! I agree Kristin and Robin! On those rare, exciting days when I feel like my FM is well-managed and I’m capable of being really productive, I’ve experimented and learned (over a long period of time) when the benefits of overdoing it outweigh the consequences. I had always thought of this as something to consider in terms of physically overdoing it, but about a week ago, my supervisor said to me: “just go home. Why do something when you feel awful and it’ll take forever, when you could get it done more efficiently and do a better job of it when you’re feeling better?” This had never occurred to me, and was definitely a major eye-opening moment.

  3. Kathy Haskew says:

    Wow! PEM, what is so unfortunate is that NONE of the physicians I have ever seen have mentioned this condition, but I have been told so much that I need to exercise. Going to the store for a couple hours does this every time and I had been limping. At times my hips feel like they are scraping bone to bone. They have done xrays and said it was mild arthritis – nothing mild about it when it happens. A day spent with my grandson will do this, as well as vacuuming the house. I use to be able to garden 8-9 hours for a couple days – now maybe 4 hours and then rest for 2 days.

    • Elizabeth Stern says:

      I completely empathize, Kathy. I was in the same position for a long period of time. Interestingly, my psychiatrist was the one who first brought up PEM as something affecting me. This was before I received my FM diagnosis, and perhaps it is something that all people should take into account. While other people may have higher thresholds for physical and mental output, we all need to be careful about going over our individual boundaries. Good luck, Kathy, and I hope you find a more therapeutic solution to the nagging from doctors about physical activity (trust me, I hate it, too!).

  4. Denise Bault says:

    I suffer from it if I “over do.” That’s why it’s important to listen to our bodies. That’s how I feel about outings too. I actually tell folks to give me a couple day’s notice if we’re going to do something, just so I can store up the energy. And of course, those days I usually over do it and pay for it the next two days. But I always feel better after swimming. In fact, I MADE myself go today. Actually felt horrible before that and thought about staying in bed. Am happy I went. I feel so much better, even if I’m just floating in the water or talking to a friend I haven’t seen in a while.

    • Elizabeth Stern says:

      I completely agree, Denise! I also want to highlight the significance of how difficult it can be to listen to our own bodies. For me, up until I began to suffer from Fibromyalgia, I was so used to telling my body what to do, like when to eat, sleep, take a break (or no breaks at all), etc. — not the other way around. When I had to “relearn my body” after my FM diagnosis, I had a much bigger task: learning all of it from the very beginning, for the first time ever.

  5. Tami Abramson says:

    I was diagnosed with FM just two years ago, but reading your columns I now understand that I have had it for a long long time. This PEM just happened again this week. I have been keeping an activist journal (my therapist’s suggestion) to try and help me learn to pace myself.
    Pacing is difficult. When I feel good I want to do all year things I can’t do anymore. But just doing a few dishes or a couple of loads of laundry and I am back in bed. It is both frustrating and depressing.

  6. Hmmm.Thank you for explaining this condition!! More Letters to add to fibro.I hit the wall more times than I care to remember!! I am a slooow leaner.Just don’t want to give in to this illness!!! Makes me so angry grrr.The art of pacing myself is the opposite of how I roll.I will be 69 in August,and most days I feel 89. sucks!! How anyone can believe that we choose this way of life is beyond me.Most knew us before our illness struck.So we just decided,one day,to no longer participate in life.REALLY? Thanks for letting me rant.Its just so difficult!!Blessings to you and yours

  7. Tom says:

    Why don’t Men have FM or PEM? Why is it only women? What test or tests shows that someone has FM or PEM? I appreciate someone not feeling themself, being overly tired, run down or even over exercising, and becoming a slave to lacticacid pain. However, I am struggling with FM or PEM as a disease. I apologize if I sound uncaring, trust me I am not. I am concerned that we are making excuses to check out of life while we call it something else for embarrassment reasons.

    • Robin Dix says:

      Tom, thanks for your honesty. Although way more women than men get fibro, men absolutely do get it. It’s more than feeling tired or run down. It’s widespread pain affecting the entire body and can increase or decrease in severity. It’s fatigue that can never be remedied by sleep. If you had it you would know. It’s not something anyone would ever want. It’s been classified as a disease

      • Tom Carter says:

        Thanks Robin. I appreciate your response. I am searching for answer in my own way as I watch my wife suffer. This is what the Dr.’s call it. I do not understand it because it is NOT a thing…instead, it is a something and there is no way to measure it. I know she is not crazy nor the Dr.’s but I may be…Hahaha. Anyway, thanks for the response. There are needs the families need more than the patients sometimes.

        Tom

      • Tarik says:

        Robin is absolutely correct. The ratio of women to men that get this illness is very high, be we are not spared.
        I have had this for many years, as far back as when it was called Myafacial Pain Syndrome. (Now, you can have both! Woo-hoo!)
        Anyway, finding men with this problem is harder than finding the ladies. Finding a good support system for the afflicted and their spouses is so very helpful in cutting down guilt. Personally, Jesus gets me through a lot of times as I do not have a mate to help me. Family is learning, friends are too. But, people are people.. Do your best and your wife will make it through.

    • Sara says:

      Tom think of it like berast cancer. The majority of breast cancer patients are women but it can also happen in men. As to the testing to prove it, it’s still being studied but the medical community is finding more and more differences in the body ofthose with FM/CFS. There are differences in our vitamin deficiencies, something called substance P, hormonal differences, etc. Just because the medical community hasn’t figured it out doesn’t mean it’s not real. Remember they haven’t cured cancer yet either .. LOL. My husband is a pharmacist and when I was diagnosed 12 years ago he didn’t believe it either, but after 12 years of watching me suffer and the decline in my abilities he gets it now and has no doubt. There are lots of non-believers and I’m not picking on you, I wish I could help you understand. I also wish I could go back to work, keep my house as clean as I used to and enjoy living with passion. I was raised poor and on a farm, we were taught to work for what we get, it was drilled into us and probably in our genetics too and I have been ashamed and guilty for many years for what I couldn’t do. I continued trying to be me and the harder I tried the more I paid physically, eventually it ran my system down to the point it was giving me other health issues. When I learned to say no and learned when to stop I started living a better quality of life. I still overdo sometimes like others but usually it’s only for special occasions or out of necessity now. Blessings to you and your family!

      • Tom Carter says:

        Thanks Sara. I really appreciate your response. I have a great wife that has been diagnosed years ago, yet no Dr. can confirm or deny. It is treat the symptoms. That seems to be counter productive. I just love her so much I hate to see her suffer…but I am here for her the rest of her life. I am searching for a better way of life for her if it exists. Thanks again, your response mattered to me.

        Tom

    • Dave says:

      In response to Tom.

      I personally guarantee that men can have Fibro and PEM.

      I am one of them.

      Some days, the duvet wins and I cannot physically get out of bed.

      Other days, I just about manage to perform some basic tasks. However, even having a shower can be exhausting.

      At the grand old age of 49, I have to use a wheelchair and mobility scooter. My wonderful wife has become my carer.

      This was not part of my retirement plans.

      • Tom Carter says:

        Thanks for the message Dave. Heads up, brighter days are ahead. I believe where there is “Life, there is hope.” I do not understand this disease whether I believe it is one or not. My wife is suffering and I would love for her to have relief someway, somehow so she can enjoy the plans she made for our retirement. Hang in there, we will to. Thanks Dave.

        TOm

  8. PAMELA BERGMANN-KNEBEL says:

    I also suffer from this and when shopping I have a limit of two stores. I start limping and know I have to quit. Because I do pace myself I am able to avoid most PEM. Good thing I really don’t like to shop but its hard when my daughter wants to go shopping and hit all these stores!!

  9. Allison says:

    Wow! I totally have PEM… lol everyone says…its so difficult to pace yourself especially whn FM robs you blind!I absolutely hate FM, its taken away so much from life, including my career

  10. Jennifer Van Pelt says:

    As a fitness instructor, PEM is a HUGE struggle for me. Prior to a fibromyalgia and Hashimoto’s thyroiditis diagnosis, I was teaching 10 classes a week (kickboxing, cycling, weight lifting) and feeling great. Now, I get a PEM reaction after senior fitness and gentle yoga classes. However, I’m still very capable of doing a hard workout–reining in my enthusiasm and exertion level during the workout is hard for me. While laying on a heating pad and being unable to sit up after a workout, I think, “Why did I do that??” For those of us who previously were very active and athletic, PEM is so hard to deal with and compensate for!

    • Em says:

      I hear you Jennifer. I even had to cease w/ Tai Chi. Thankful I am ambulatory and can still drive short distances.

      • Jennifer Van Pelt says:

        So sorry Em. I’ve recently gotten into tai chi/qigong and it’s wonderful. Have you tried doing it while seated? The breathing exercises alone are beneficial too. Amazon Prime has some seated tai chi/qigong videos available, I think.

  11. Nancy A. says:

    I’ve had CFS and fibromyalgia for over 30 years. The only shopping I do in stores anymore is my once-a-week trip to the supermarket. I do that early in the morning when the store isn’t crowded. I need a nap afterwards but I do that anyway each afternoon. I’ve been on disability (SSD) for 8 years now and haven’t worked for 11 years. I used to work in a hospital as a medical secretary and transcriptionist. I sat at a desk most of the day, so that’s how I was able to work all those years. I do most of my shopping online now. My supermarket even does home delivery, so I did that on a few occasions when I wasn’t able to make it to the store. I’ve learned to pace myself on my good days so I don’t have bad flare-ups very often. I’m 63 now and my fibromyalgia has gotten worse over the years (menopause didn’t help). It’s really a struggle but I take it one day at a time.

    • Em says:

      Same here as far as getting worse as the years go by-hit the big 65 last year. I keep thinking I can go full speed and fail to get it through my thick head that this type of pushing has consequences.
      Blessings and peace to all of we fibro fighters.

  12. Christine Creekpaum says:

    I just moved from Calif to Ohio April 1. My daughter did most of the driving until the last day. I was a beautiful, peaceful trip. I have spent most of the time since then in bed resting. All the FM pain seems to want to locate in my low back so can hardly stand. I try to get up at least every other day for at least 4 hours and am slowly gaining my strength back. This too shall pass

      • Christine Creekpaum says:

        since 2007 I was first care-giver for my mother for a year, 2008 for my aunt and horse (mom died 2007 and my aunt and horse in 2008. Then I became care-giver for my best friend of 55 years. Hers was the hardest as she required 24 hr care along with her horse, 6 dogs and a feral cat. All the while have FM since 1988. I had to push so very hard everyday that when she passed I ended up in bed for a month;then 5 months later made the drive cross country to make my move. Spent another month in bed and am now in “do something for an hour or two then lie down for 1/2 hour. Now my daugher has been diagnosed with cancer again (she was diagnosed with uretetal papiloma carcinoma in Aug right after my friend died July 1. I came and stayed a month with her to help to help then had to go home and pack. Now my daughter has bladder cancer so here I go again. I so hope I can find the strenght again==don’t know if I do, it has been the hardest thing I have ever faced being caregiver when I need help myself.

  13. Wendy Berger says:

    This is such a relief as each day I find I can do less. Can no longer shop even 10 minutes without crashing. But keep getting frustrated by all the articles about pacing and exercise of any sort . I love exercise and have even tried simple arm or leg exercises and still crash later. Is there any way to stop decline.

  14. Rowena says:

    I suffer from PEM too. I realise now that I’ve had fibromyalgia for many years befote being diagnosed. I could never understand how my friends never felt the same as me after a shopping trip for example. I could hardly manage to last the day and the pain and exhaustion I suffered I put down to maybe me being unfit. I’ve tried to work, had many different jobs but just ended up going to work, coming home beyond exhausted and going straight to bed. I push myself over and beyond the limit of my capabilities to try and keep up and function like a “normal” human being, but alas as I’ve got older so this illness has progressed leading me to give up trying to work and being cared for by my partner who now totally understands this terrible debilitating illness. I do all I can to lead a normal life, I look ok but inside my body is screaming out in pain and exhaustion which stops me from enjoying our time together. I can’t walk that far anymore but I push myself to do it only to suffer the next day from whatever I did the the previous day and the day before that. I can never recover from my previous days activities so they just stack up until I just collapse and have to give in and spend a day doing totally nothing, but even then I am never fully recover. So the vicious circle goes on day after day. It is such a neverending struggle and at times I wonder if I can actually go on. I want my old life back but sadly I don’t think that will ever happen.

    • Susan olson says:

      It sounds to me by the severity of your symptoms that you have ME/CFS. That is what I have totally house bound bed ridden 7 years now. I’m sorry I feel like I’m hooked up to an I V of poisoniazid 24/7. If I try to do even the simplest of things even talking to much, gives me severe Pem. Like you its perpetual every action is like painting on layers of horrible sicknes,

  15. Cindy Ray-Chalker says:

    I have this so Bad! One of my worst problems with my fibro. Can’t do anything longer then a half hour and I’m stuck in bed for a couple days. Frustrating because I want to do more and I just Can’t!

  16. May says:

    O! M! G! THANK YOU FOR THIS ARTICLE ! !
    I have often though my tiredness was due to lack of sleep at night, this article has given me a little more understanding of this nasty disease. I will be taking a copy to my next doctors apt. My doc. has asked me to bring any info I get on FM. because she doesn’t know much on the condition but sees how it affects her patients. My Dr. knew me before my FM. She knew me as a vibrant woman that helped others and was very energetic. Now I’m the one that needs help!
    I thank God for my family and friends that understand and to the rest I just say “I hope you never have to experience this.”

  17. Merf says:

    Oh my! This article was just what I needed. I have been beating myself up for not being able to ‘push through’ the utter wipe out feeling I have for hours or days after a moderate or strenuous activity or day. For instance I spend two hours at yard work then I can’t even manage to make dinner that evening nor do much of anything at all the next day( or two). I almost have been dreading my good days because they enjoyment of getting things done is tainted by the realization the next day(s) would likely be awful. I really thought it was me being flawed/lazy/wimpy and the guilt for thathas been awful as the pain and exhaustion.
    I cannot tell you how much this article has relieved my mind. To be fair my husband as well has kept saying to me: ‘it isn’t you, it’s the fibromyalgia’ …. I don’t know how much worse I’d be without his endless support and encouragement.

  18. Michelle Kuczynski says:

    I went London for weekend. Started crashing even before got theatre but pushed myself to go Kew gardens next day. Now in bed in agony

  19. Peggy Strickland says:

    I am so glad I ran across this article! I have had Fibromyalgia for over 40 years and have experienced PEM for most of that time. While I always chalked it up to the FM I never really knew what it was before. It’s just nice to hear it has a name. I am now 61 years old and on disability. I have had to learn to pace myself much more than I ever wanted to. It is hard though to get those around me to understand why I can’t do certain things or join in all the activities that they participate in. Articles like this may help them understand. Thank you for sharing.

  20. Christy Tennant says:

    I have been diagnosed with Fibromyalgia for over a year now, although dealing with the symptoms much longer. When this started happening to me daily at work I had no idea what it was. It was very scary, especially when it happened on my drive home. It felt like all my blood had suddenly drained from my body and I couldn’t breath and no longer hold my body up. Sometimes I couldn’t even keep my eyes open. I told my pain Dr about it and he had no idea what it was. I finally had to retire from being a Hairstylist for 26 years due to my dibilitating symptoms. Now that I get more rest it doesn’t happen as much, but if I don’t pace myself or overdo it, it happens all of a sudden wherever I am at the moment. After doing tons of research I finally found out what I was and was glad to find out that there was actually a term for what I was dealing with! It helps to know what it is so I can try to prevent it from happening so often and to know what I need to do when it happens. Thank you for this article. It really helps get the info out there so we can help each other survive this disease!!

    • Tim Bossie says:

      Pacing is so important! Thank you for sharing your experience with us Christy! We wish you all the best as you stay strong and fight against this disease.

  21. Karen Stanley says:

    I struggle with PEM daily, though I didnt know there was a name for it either. I find that I can expend energy in short bursts through the day, but if I try any sustained effort, I’m going to suffer for it. I can usually go about 15-20 minutes before I need to take a 5-10 minute break. I can keep this up for a few hours before I’m all done in for the day. Lately I’ve spent some long hours traveling to see new grandchildren, and I was dealing with extreme drowsiness as well. It was like my body was shutting me down for my own good, and I ended up sleeping for almost 24 hours. It has been frustrating in the extreme!

  22. Christine Creekpaum says:

    turns out her treatment will not make her sick and has very light side effects. I think we, with my grandson along will take a trip to the great Smokey Mountains. My son-in-law has to work and he is a great help all the time he is home. He watches out over all of us.’
    The medication is delivered thru catheter once a week for 6 weeks and only targets the tumors. Really great news.

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