Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Describe your PEM

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by lnester7, Apr 28, 2012.

  1. pamojja

    pamojja Senior Member

    1) Started after a period with lots of infections and the diagnosis of a PAD.
    2) Exhaustion, concentration difficulties and lower back pain.
    3) Predictably starts after 5 hours mental work, only ends after a full day of being able to do nothing. Physical activity, like walking for upto 2 hours (the furthest I get to), also starts it.
    4) Directly related.
    5) The 5 hrs activity limit. Just had to quit an part-time job where at times it exceeded this limit to avoid it in the future.
    6) Also whenever I'm not able to get at least 10 hours of sleep, and an additional 2 for slowly waking up.
  2. Mel9

    Mel9 Senior Member

    NSW Australia
    I thought Ishould chronicle my experience here in case it is useful for this discussion.

    After a full year of antibiotics I am starting to feel 'recovered'. Last week I told my husband that I was fully recovered and actually felt 'normal' again after so many years of illness.

    I should have 'touched wood'.I felt so good that I went for a 10 min walk ending with an exhausting hill. Because I felt so good I walked Fast. No thought of Pacing, (completely silly behaviour.)

    Next morning I still felt fine so yet again I did too much: made a cooked breakfast, cleaned the bathroom.

    I then had a hot shower after which I immediately collapsed with massive PEM. Symptoms: staggering gait so almost unable to walk, pain all over, tingling limbs, massive headache like a tight hat pressing on my brain, blurry double vision, extreme weakness and malaise as though I have the flu.

    This is the first PEM where I can see an association with showering (on top of the initial exertion). Still going strong for two days so far with complete bed rest.
    Art Vandelay likes this.
  3. AdAstraPerAspera


    1) When did your PEM start? At the same time of illness or later?

    My PEM was one of the first symptoms of my illness. Though mine developed as a gradual onset rather than a sudden decline in health, that and the symptoms of POTS were my first experiences of ill health.

    2) What does your PEM feels like.
    It feels like I'm existing inside mud - everything is slow, heavy and exhausting to do, whether it's thinking or moving. Sometimes I feel wired even though I'm beyond exhausted, I lose my motivation and just want to sleep. I also often feel 'down' and numb/sad.

    3) Is it constant or Comes and Goes, does it get better and worse.
    The frequency and severity of my PEM definitely comes and going, it usually worsens if I have eaten unhealthily, been sick or have pushed a lot past my energy limits, but other times it fluctuates for no discernible reason.

    4) What is the relationship of PEM w activity level. Is the PEM worse when relapsing?
    My PEM is directly related to how much activity I do. I can, say, get up early or go for a walk for a couple of days with relatively little effects, but if I try to maintain those changes the PEM stacks and becomes increasingly worse until I rest. It is definitely much worse when relapsing.

    5) Do you get any sign that PEM is coming and are you able to avoid?
    I often find if I am feeling highly stressed/overwhelmed/unable to cope, it is a sign I need to stop and rest. This doesn't usually prevent PEM, but does help to lessen it. Mostly I try to structure my lifestyle with rests in order to minimise it wherever possible.

    6) Is there a particular time of the day where you are more likely to experience PEM.
    I am more likely to experience it in the mornings, when I find I have to push much harder to get anything done.

    Hope that helps! :thumbsup:
    Jessie 107 likes this.
  4. jonB451


    Thanks everyone for sharing. It seems like we have to help ourselves and i think sharing of knowledge is the best chance we have. And those investigations need structure added to them as Inester7 has done with this thread. Thanks for that.

    1) When did your PEM start. At the same time of illness or later?
    Observations over the last four years of a condition diagnosed as CFS which sounds very similar to what a lot of you have descrbed here, have taught me that, for me at least, CFS/ME = Post Exertional Malaise.

    More precisely i would like to describe it as:

    i, A trigger of:
    Delayed Post Exertion Malaise
    . This bigger picture PEM is always triggered by a physical exertion (My envelope seems to be a 30 min slow walk when i'm at my very best) but it does not appear until days after.

    ii, which then leads to weeks of:
    increased sensitivity to Post Exertion Malaise. That exertion can be either physical or mental. The malaise is both physical and mental in specific ways and happens immediately on stopping exertion.

    2) What does your PEM feel like?

    I can relate to AdAstraPerAsper's metaphor of feeling like you're "existing inside mud". Thanks for that.

    So once triggered and when it is bad, it can feel like various parts of me (arms, head, feet...) are attached to the ground via bungy ropes, that gravity is pulling at me much more than it should. Despite loving to read, lifting a book can be too much effort. Turning to get comfortable practically requires a cost benefit decision based on the effort required. Scratching an itch is often not worth it. Even when lying down can feel like i need to "sink further in" (a scene from the film Trainspotting portrays this well, but that is someone on Heroin). I used to feel that sitting at a desk was like wearing a stone hat and trying to balance it. Much easier to just lie it on the desk and look at the computer screen sideways. "Yes, i slept fine thank you. No i'm not hungover and i didn't run a marthon yesterday. No i'm not depressed or sulking. No i don't have the flu or any other infection that any doctor has found yet."

    3) Is it constant or Comes and Goes? does it get better and worse?

    i, Delayed PEM Trigger:

    About 2 or 3 times a year i get well again for a few weeks at which point i then keep some probably misplaced faith in Graded Exercise Therapy and try to expand my 'energy envelope'. Just trying to go for an hour's walk triggers every time and i may take two months to recover back to pretty much well again ("well" except that i can't do exercise and still have to be careful to pace). Repeatedly triggering like this each time i feel better sounds like the definition of madness but the high of feeling normal finally and the confusion of the several days delay, fool me every time... so far. If i could accept never doing exercise again or never working full time with anyone else again then i could probably be relatively ok if i was careful. While i consider myself lucky in that compared to many people here, I don't consider either not exercising or not working full time as sustainable for me.

    ii, Increased sensitivity to PEM:

    After the trigger and that delay of between 24hours and up to a week, usually about 4 or 5 days, comes the crash to flu-like tiredness and constant vulnerability to PEM although not too bad to begin with. If i react quickly and ridiculously seriously enough then i may be able to keep this increased sensitivity to PEM to a couple of weeks and stop it getting worse which can be a viscious circle. If i don't do what feels like seriously over reacting by extreme pacing (what most others don't seem to appreciate, doctors and insurances and....) then that sensitivity to PEM can be a couple of months.

    4) What is the relationship of PEM w activity level. Is the PEM worse when relapsing?

    I interpret "relapse" as 'triggered' here.

    Before being triggered i can do daily chores with no problem. I am careful with more physical things like mowing the lawn and still try to pace myself with lots of rests despite having felt my endurance was one of my strengths before this, but no one other than those i live with would notice really. At this point i am living quite well but without the joy and sustainability of exercise that i miss so much or the security of earning. Having said in 1)i, above that the initial trigger of a relapse is always physical, I also try to keep social events to a max 2 hours to prevent triggering. I do not accept a consequent conclusion that this means it is psychological. Socialising has been shown to be one of the most demanding things humans do in terms of neurochemicals and other resources. I don't discount the power of the brain at all and I do think there are significant potential clues here but i do not conclude that this means it is either caused by psychological issues, imagined or even psychosomatic, although i do accept that psychological issues can have some of the similar symptoms.

    In the weeks and months after being triggered then 30 minutes to the supermarket needs at least a ten minute lie down afterwards but pottering at housework is usually ok if paced. I would class my fatigue as chronic, but mild relative to those who are bed ridden. I have not needed to spend the whole day in bed since i had to stop working 2 years ago. I stopped because i'd spent about 2 years in a constant cycle of collapsing on my desk (or the floor), spending evenings and weekends just resting for work (eg sacrificing relationships and any outside interests), and in the end even that was not enough, so i spent about half of every month off sick and the other half feeling awful and massively struggling at work to concentrate or even sit up.

    5) Do you get any sign that PEM is coming and are you able to avoid?

    While i've become expert in managing my own triggers and recovery, my belief in ever getting "back to being me" is repeatedly challenged when i can get back to feeling really good 2 or 3 times a year for a few weeks, and then decide, "Right, to make this sustainable i need to be able to walk slowly for an hour at least." (I used to be very active with lots of strength endurance over hours and days and loved it).

    I often then feel good even for another few days, sometimes i even get a high for about 24 hours or more before a crash. But during that high i can also get a feeling like an infection is impending. Where the nose and mouth meet inside often feels a bit like sandpaper during these days and i used to get swollen glands. Whether this is actually an infection or is just my immune system's standard learnt response i don't know. Perhaps the flu-like long recovery is immunopathology and cytokine die-off. Anyone know how long that typically lasts?

    Once the trigger is done i have not found a way to avoid the relapse in the days leading up to it. It's like once it is set in motion then there is nothing i can do except wait to see if it happens or not.

    6) Is there a particular time of the day where you are more likely to experience PEM.
    Usually worse as the day progresses except:
    - 9 out of 10 times awake exhausted in the morning, also when not yet triggered.
    - often have upswings at some point in the late afternoon and then late at night, often about when i would want to be going to bed.

    Managing Triggers and Recovery:
    As i've not contributed in the past i also wanted to add weight to those ways of avoiding triggers and speeding up recovery that i've found help me. I hope they help someone else, perhaps those with a similar pattern (or causes if we knew what they were).

    To recover asap AND STOP IT GETTING IN A VISCOUS CYCLE i need to:

    - feel like i'm over-reacting in response and take it ridiculously seriously, retreat and look afer myself
    - avoid all stress (unfortunately both distress and eustress as it seems to just be the pure stimulation that's a problem),
    - including dropping any work or study to max a couple of hours a day (unfortunately ive finally admitted that that includes any screen time),
    - meditating daily really helps i think (again, i don't think this is admitting that the causes are psychological. I am tired of specialists who put their pens down as soon as you hint at anything psychological).
    - sleeping regularly and preferably also a siesta, even if just a power nap (good ones can feel like a reboot),
    - fighting off potential infections with warm salt water gargles preferably with garlic, and
    - pulsing garlic as an antibiotic, prebiotic, antifungal, antiviral, antioxidant (did i miss anything?).
    - And partly cos my digestion seems to go awry once triggered, eating as many plant species in a week as possible to ensure as many of the right gut bacteria are well fed with prebiotic fibres.
    - If it's bad i might even start that with a full-on week of bone broth (chicken and beef), maximising the gelatin and even grinding down lots of the bone to help digestion. It tastes/smells like dog food but it's up their with garlic for its natural healing properties. I'm increasingly convinced that these would've been staples of the medieval witch.
    - massively prioritising and getting 'the things which can't wait' done by pottering. Kind of the opposite of "Work hard, play hard", just potter through and (try to) enjoy/appreciate everything as you do it.

    Avoiding triggers is pretty simply avoiding the exercise but i also found that giving up caffeine helped a lot. I try to do just a couple of minutes of gentle pilates like exercise a couple of times per week, just to stop myself falling apart phsycially.

    Apart from all this i'm sure some of you might agree that one of the hardest things to deal with is feeling that other people think you are just being lazy or that it is all in your head. I can usually get it together for 10 mins or half an hour to be with someone but then have to lie down after they have gone and they don't see that. This and the financial insecurity are the hardest things for me.

    Best wishes to you all. Enjoy what you have and hope for as much health and understanding as possible for everyone.
    Mel9 likes this.
  5. Wishful

    Wishful Senior Member

    I was thinking about PEM recently, due to the poll mentioned elsewhere regarding definiton of PEM. One symptoms I was wondering whether it was common was the lack of 'bounce in my step'. Some days I can walk with a normal stride, but with PEM my stride seems to lack that 'bounce'. I also seem to teeter from side to side, using my hips to help throw my legs forwards. One time when I had taken cumin to block PEM, I noticed that I was walking unusually (for ME-suffering me) briskly.

    So, have any others of you noticed reliable changes in your stride during PEM?
    Mel9 likes this.
  6. ChrisD

    ChrisD Senior Member

    East Sussex
    1) PEM started with CFS two years ago, but was manageable - more just delayed fatigue with some inflammatory symptoms. True PEM started one year ago with onset of ME.

    2) If I manage to do an activity such as a short walk, there is a similar progression that happens every time. I obviously start feeling heavy and 'lagging' then very particular muscles and joints weaken very quickly, this includes; Upper back, outer thigh/hip, knees and Jaw - all make cracking noises or crepitus. Then I start to feel wobbly and dizzy. When I sit down and try to rest after, my chest tightens and feels inflamed, my muscles fasciculate, some tremors occasionally. I feel utterly exhausted and then standing is only really an option to do the essential things like getting a glass of water. I will have continued muscular problems for the rest of the day, some pain - mostly weakness and crepitus (very disconcerting - the feeling that you are made of very old, dry blue tack). Of course then, Cortisol and adrenaline seem to flood my system and despite having a moment in the evening where I yawn a lot, it becomes very hard for the body to sleep. I should mention also that along with all symptoms the brain becomes hyperactive.

    Also this then adds to the snowball effect with the following days involving stiff muscles and big deep muscle 'clunks', it feels as though I am not calibrated properly and the tension in muscles is pulling my body into the wrong posture or form and this then effects coordination and orientation badly..

    3) It's constant and it will build up for around 2-3 hours after exertion to it's worst then starts to relent.

    4) PEM is genuinely quite consistent in its severity, no matter the activity level. But if I really over do it then it will be very bad.
    5) My sign is when the initial symptoms above ^^^ start to come on during exertion.
    6) I've noticed that even though I feel worse in the mornings (like most) that if I do exertion then, my PEM is less than if I wait til I feel ''good'' in the afternoon and then the PEM is worse.
    Last edited: Jan 24, 2018
    Mel9 likes this.

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