Describe your PEM

[pamojja]

Hi all,

1) When did your PEM started. At the same time of illness or later?
2) What does your PEM feels like.
3) Is it constant or Comes and Goes, does it get better and worse.
4) What is the relationship of PEM w activity level. Is the PEM worse when relapsing?
5) Do you get any sign that PEM is coming and are you able to avoid?
6) Is there a particular time of the day where you are more likely to experience PEM.

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.

 

[Mel9]

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.

 

[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!

 

[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.

 

[Wishful]

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?

 

[ChrisD]

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.

 

[Sushi]

A "not politically correct" report on my progress with PEM.

I say "not politically correct" because of our really negative experience with graded exercise, but... Dr. Nancy Klimas has a very specific and gentle model of improving muscle tone through specific types and ways of using exercise and I decided to try it. I had a heart valve problem this past year which resulted in me being more or less bed/couch bound for most of this last year. I didn't really consider what this was doing to my already poor level of physical conditioning, because I didn't think I had a choice other than sitting, lying or reclining. Well, I had the valve fixed and then discovered, "Oh no, I've lost a huge amount of muscle tone!"

My cardiologist suggested cardiac rehab but I had grave doubts thinking that I would fall into the hands of the graded exercise bunch. She assured me that the place she would refer me to would listen to me and make a program that worked for me as an ME/CFS patient. My decision to try it went something like this: if my muscles are totally out of shape, it is going to use more energy to do the tasks of daily life than it would if I weren't so out of shape. Using too much energy leads leads to PEM, so I'll try to improve my muscle tone, use less energy for the same tasks and hopefully raise my PEM threshold.

On day one at rehab, I had a thorough evaluation by a doctor, a paramedic, a nurse and someone trained in exercise physiology. They designed a tentative program. I tried it and it was too much. Rethink. Eliminated all upright machines, go to the lowest settings, exercise (say on a recumbent bike) for 3 or 4 minutes, rest for 5 minutes, do another round. Come twice a week (Mon and Friday) instead of the usual 3 times per week. See what happens. Well, to my surprise, no PEM!

That was about 2 months ago. While they are surprised at how slow my progress is, they do not try to push me to do more but instead let me make that decision and support the progress I have made. Result: I have been able to add about 6 minutes more of aerobic exercise and increase my reps on a leg press machine from 8 to 14. Do I "feel" better? Not really, but I am able to do much more in the realm of tasks of life without getting PEM at all or only getting a little bit that I can notice but doesn't really interfere with things.

I still need to pace very religiously but whereas before I could only go out maybe once a week, I can now go out (going out is only doctors, food...necessities) even on the day after a rehab session. I am just posting this as something to consider as I have learned how easy it is to lose muscle mass and how hard it is to regain it. Looking back, I see that I could have done some bed exercises and used things like hand weights and avoided some of the problems I encountered from being so very inactive. If only more doctors were as knowledgeable and helpful as my cardiologist!

 

[jonB451]

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.

I no longer believe that CFS/ME = Post Exertional Malaise, but PEM has been the defining symptom of CFS for me. I think it has been the main underlying feedback loop or viscious cycle that kept me stuck. This seems best explained by the mitochondrial issue of a broken Krebs' Cycle. My ATP levels were described as, "post marthon level, which would normally take about 6 weeks to recover from." This fit my experience of what i think has been called a "relapse" in this thread.

 

[Wolfcub]

1) When did your PEM started. At the same time of illness or later?
2) What does your PEM feels like.
3) Is it constant or Comes and Goes, does it get better and worse.
4) What is the relationship of PEM w activity level. Is the PEM worse when relapsing?
5) Do you get any sign that PEM is coming and are you able to avoid?
6) Is there a particular time of the day where you are more likely to experience PEM.

1) I am really unsure when PEM started. Or has it all been PEM from the beginning? It's hard for me to tell, but I suddenly went from being super fit and active to unwell and all I knew was doing anything much was wiping me out -not in a normal tiredness way but in a really creepy way (thought I had a terminal ilness.)
I have always walked, miles each day...sometimes 2, sometimes 10. So when this started. it didn't seem to be a case of having pushed my body too hard all at once. I had walked 10 miles 2 days, and 6 miles the previous day before I became suddenly ill. But that was not an unusual thing for me.
But I do remember that on that walk I was drenched in sweat. Soaked. I had to change every item of clothing and shower again when I got home. That was unusual. And when I got home I was unnaturally, ravenously hungry -much more than normal after exertion. Those were the only two odd things that happened. 2 days later I became unwell.

I didn't know anything about ME/CFS, and had never heard of PEM until 6-7 months into the illness.
So I more or less kept going doing my usual things. Some days I would get "rest breaks" from symptoms....sometimes for hours, or for a day or two, but it didn't appear to be related to exercise. However, I couldn't even think of doing my normal exercise. I took gentle 1/2 mile walks instead, because I felt so rough.

Sometimes I don't get PEM when I do things. Even moderately strenuous things. Yet sometimes I can clearly trace what I've done with feeling worse say -a day or usually a couple of days later. So -with myself -I still don't understand it. I can go for a 4 mile walk sometimes and NOT get PEM! Other times, I get it from cleaning the kitchen floor! Or mental strain and hard focus.

2) It feels like coming down with flu except I don't get sore throat, swollen glands or respiratory symptoms. Just like the hours one is definitely "coming down with flu" but the full symptoms haven't started yet.
Except in my case those feelings continue for days, sometimes a week or more.

I get a shaky "malaise" feeling...loss of normal appetite (alternatively sometimes ravenous insatiable hunger (for savoury "real" food rather than sweet things)...feel feverish (yet never any fever!) Feel a bit "drunk"....some adrenalin-type reactions after eating...irregular heartbeat and missing beats....exhaustion when doing any task....wanting to take more deep breaths....some nausea at times....occasional "stroke-like" effects in my legs (though they usually pass in minutes, though they scare me witless when they happen)....emotional lability (tearful only.)....over sensitivity to coffee and alcohol....random nerve pains in different parts of body which go away usually in a few hours.....focus and concentration difficult....sometimes forget passwords, names, etc. Inability to focus on anything heart-felt that I hold dear.....extremely low body temperature suddenly, and cold hands and feet.....eyes watering extremely when outside even if it's not too cold (I now have to take loo paper everywhere for my eyes!) Waterproof mascara is more useful than it ever was before!
And in the bathroom department....I am never literally constipated or literally have diarrhea, but sometimes there are some slight disturbances outside my "norm".

3) It comes and goes. I can have periods where I feel almost normal. At first I felt that for very short periods (an hour or two at a time....graduating to a day or two later on) But now, it is possible for me to feel okay-ish for sometimes a week, two weeks? Maybe longer at times. Sadly when that happens I fall for it every time "Hey, I think I'm better!!"
Those improvements cannot be traced to any changes I have made, in supplements, diet, exercise or rest, or any positive changes in my life, or to emotional pleasant events. The improvements, so far, appear to be completely random. (as are the crashes for the most part.)
The only pattern I have (I think) noticed is seasonal. When it's the absolute middle of winter, or the middle of summer, I get a good remission usually. The worst times seem to occur just as the seasons are first beginning to change.....first traces of Spring coming, or Autumn, etc. If it snows I can feel okay! If it thaws, I can feel worse.

4) Yes the PEM is more obvious to me when I am relapsing. An easy walk will wipe me out. Washing a few clothes will make me shake all over.

5)Yes....I think so. If I am walking up a slight incline (not even a "hill" !) and I am out of breath from that, then I view that as a sign I need to seriously lie down. The "fluey" feeling is also a sign. Like I'm coming down with a bug, but never actually am. Also if I wake up in the morning after a good 8 hour sleep, and just want to go back to sleep, that's another warning. Being too hungry or feeling vaguely nauseous suddenly is a warning. An extremely low body temperature after I get up a.m. is another sign. Not being able to tolerate a warm bath....another one. An over-reaction to my fairly weak morning coffee. Feeling way too drunk after a couple of teaspoons of brandy or half a small bottle of mild beer.....etc.

6)After getting up in the morning. Also in the afternoons. Better usually in the evenings from warmth and rest and food....though not always.

 

[Wishful]

I seem to have a new description for my PEM (at the last the physically-induced form): it's cured!

I've been taking cumin (Cuminum cyminum) every three days for about two years. It was very effective at blocking physically-induced PEM, or treating the PEM it if I'd forgotten to take it on time. Last spring&summer I did lots of physical exertion (reroofing, with lots of ladder climbing), without suffering PEM. Recently I forgot to take my dose, and decided to see how my PEM was without it. It's been 3 weeks without cumin, and despite physical activities that should have triggered PEM, I remain PEM-less. Maybe it will return someday, but for now I seem to be cured of at least that annoying part of ME.

Thank you cumin! I love you!

I hope the rest of you can find something that works for you. It's not my fault that cumin isn't working for you. There weren't any mystic gestures or animal sacrifices that I forgot to mention needed to be done when taking it. If it's a genetic twist unique to me, it's not my fault.

Take heart in knowing that PEM does seem to be curable. Somehow. With lots of luck.

 

[Rufous McKinney]

I get a shaky "malaise" feeling

This entire paragraph is incredibly familiar..

I get ALSO the very sore throat...when ever I actually talk. So it doesn't happen if I'm silent. I should live alone.

The daily- cycle here- of symptoms...is a type of permanent PEM..then there is the exacerbated version.

So I am- PEM from a 1.5 hour video chat in which I'm just trying to smile, and wave and speak occassionally-

abruptly: I had to end the call.

then mistake vacumed, due to mortification.. as somebody is coming over .

Then four hours the next day (oops) somebody is here helping me: thats PEM on PEM. So today is four layers of PEM.

My mom had this Betty Crocker cookbook, with a large illustration of Baked Alaska. Its a great symbol for how we frequently feel.

This type of thing:

 

[Wolfcub]

Oh gosh....
I see the metaphor....layer upon layer of PEM baked on the outside to look solid enough,
But @Rufous McKinney when I don't feel trembling and nauseous, my normal greedy streak kicks in.
...that baked alaska just looks incredibly tempting. I could just eat some right now

 

[Rufous McKinney]

But @Rufous McKinney when I don't feel trembling and nauseous, my normal greedy streak kicks in.
...that baked alaska just looks incredibly tempting. I could just eat some right now

But it involves merange! (mispelled, most likely) (gosh spelling these days). So I NEVER had Baked Alaska.

Not once. I think I was- somewhere where there actually was one.

When I could eat pie, I want the whipped creme!

 

[Wolfcub]

Thank you cumin! I love you!

That is something I now think I will try.
But I heed this warning:

It's not my fault that cumin isn't working for you. There weren't any mystic gestures or animal sacrifices that I forgot to mention needed to be done when taking it. If it's a genetic twist unique to me, it's not my fault.

I am happy to try many natural remedies (drugs generally make me feel like I'm going to die) Cumin sounds reasonable, and worth a shot for me anyway.

Do you add it to food? I recall I never liked the taste of it much, could bear it when there was a little bit added to curry powder. But I have taken some nasty tasting herbal remedies in my time so that might be workable with good will and determination.
And how much of it do you take @Wishful ?

 

[Rufous McKinney]

..that baked alaska just looks incredibly tempting. I could just eat some right now

My mom at times was a great cook...and in fact we BOTH produced some of the famous stunning desserts which now are: entirey forbidden.

Sponge cakes and nut rolls, fruitcakes with bourbon. (heh, spelled that!); cream puffs....I loved to make. Lemon merange (ugh) pie...

Realize i was the child who would make these things but never ate them. There would be some reason why- I would be refusing- ALL that.

How long has Miss Finneky been at this now?

 

[Rufous McKinney]

Cumin sounds reasonable, and worth a shot for me anyway.

Maybe it could be obtained in capsules? And maybe one won't burp afterwards?

 

[Wishful]

Do you add it to food?

You can, but I just took it straight. I don't like the taste, but I don't find it awful. Since it seems to work on my brain, sublingulal absorption makes sense, so I'd hold the ground cumin in my mouth for at least several minutes. I got used to the taste after a while. Given how much it improved my quality of life (I could enjoy hiking and biking without PEM!), the taste was a small price to pay.

How much? A level tsp of ground cumin seemed optimum for me. Half a level tsp seemed to be less effective at blocking. More extends the duration of the blocking only slightly (three full tsps lasted 6 days; half a tsp lasted 3 days). See: https://forums.phoenixrising.me/threads/possible-pem-blocker.56232/ for all the gritty details.

A quick check showed cumin in capsules, but that's black cumin (unrelated). If you really can't stand the taste, even when washed down with something, you could buy empty capsules and fill them yourself.

One tricky bit: the world grows cumin in many different regions, and the cuminaldehyde content varies quite a bit. Several no-name ground cumins and bulk bin cumin seed all worked for me. Gourmet varieties might come from a low-cuminaldehyde region, so don't assume that more expensive = more effective.

If it does work for anyone else, please let me know.

 

[Wolfcub]

Thank you very much for the tips @Wishful Much appreciated.
Yes I can endure the taste for a positive effect ! I might even mix it with honey.
I haven't done much cooking with cumin in the past so no experience of buying it....from where...knowing the best kind etc.I might just start with a small jar of regular stuff from the health food shop.

 

[Rufous McKinney]

This brand looks good: i just avoid Amazon...find thru other means...

https://www.amazon.com/DR-Capsules-SHIPPING-Natural-Supplement/dp/6040338504

I"m considering- seeing if I can take capsules...

 

[Wishful]

I found this: "
Cumin
Cumin seeds yield 2.3–4.8% volatile oil. The oil is yellow amber liquid that tends to darken on ageing. The characteristic odour of cumin is mainly due to the aldehydes present in the seeds namely, cuminaldehyde, p-menth-3-en-7-al and p-menth-1,3-dien-7-al. (Agrawal 2001). Indian cumin oil is reported to be lower in cuminaldehyde content. Turkish cumin seed oil was reported to have cuminaldehyde (19.2%), p-mentha-1,3-dien-7-al (4.2–12.2%), p-mentha-1,4-dien-7-al (24–48%), γ-terpinene (7.0–14.1%), p-cymene (9.1–12.0%) and β-pinene (2.9–8.9%) as major constituents (Baser et al. 1992). Shaath and Azzo (1993) reported 25.01% cuminaldehyde in the cumin seed oil of Egyptian origin (Table 11.12). Pande and Goswami (2000) identified 12 constituents contributing to 86.4% of the oil of which the chief components were cuminaldehyde (32.6%), p-cymene (14.7%), p-mentha-1,4-dien-7-al (13.5%) and β-pinene (12.7%)."

I came across another list (can't find it now), with some locales producing cumin low in cuminaldehyde. All I can say is that the cheap stuff worked for me. I suppose you can ask the seller where the seeds originated.