Describe your PEM

Hi all,

There is a lot of discussion on PEM (PENE) lately, and I would like to see if there is a pattern and how different is from person to person.

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.

7

My PEM is mostly from mental exertion like when I work. I will begin to get very tired within a couple hours of starting at work and by the time I leave I am totally mentally drained and exhausted.
It was not this bad when I was first sick (2004) but has become worse in the past year.
When I get home from work I have to immediately lay down and am so tired my body can't settle down and rest. I really can't do anything much until the next morning and even then I am still recovering.

I can do almost anything physically and not experience this type of PEM. In fact I went on vacation last year for the first time in 4 years and was able to snorkel and hike without any after effects.

No matter how good I am feeling before I go into work I always feel terrible by the time I leave my 5 or 6 hour shift....I am seriously considering having to quit now after hanging on for all these years.

I could definately avoid the type of PEM I experience if I didn't have my job.....

lack of sleep can cause it for me or can be a cause of overdoing it, my brain feels like its sizzling in a frying pan basically, aches and pains, generally increase in symptoms. if i can get really good sleep (good medication i save for these times) ni can sometimes stop it, sometimes??? b12 injection also helps.

cheers!!!!

1) My PEM started at the beginning. But it is worse than ever now (disease is better). I used to be able to exercise 45min day now only 15min in segments of 5min (5min off) before I experience malaise.
2) Year 1-4 extreme FATIGUE to the point I couldn't move or talk. I recover in 2 to 6h. Flue like and Brain Fog increases, Latic Acid pain (lifting weight like pain), also brain noise, like a humming in head. Year 5, Now I think my PEM is burning in brain and spine.
3) Is constant but it has gotten better before when out of relapse. This time is unrelated to How I am improving.
4) PEM is worse as I relapse. This time not getting better even though i am doing better.
5)Not really.
6) Morning is worse, I can notice w HRM too, If I exercise later at night when My HR is lower, I get less PEM.
7

i think some people are in a state of constant pem too.

My PEM is totally brought on by mental exertion...it can include working...shopping...or social activities...

FWIW, daughter and I have both cleared most of that kind of mental and physical fatigue after mental exertion with Valcyte treatment. I suspect a neurological infection with HHV-6 was the culprit for most of the cognitive fatigueability. Could also be an HSV neurological infection, I suppose. The trick is to get enough of the antiviral through the brain-blood barrier to have an effect on neurological infections. Might be worth a try.

I used to get it just talking, having visitors, or going out to eat.

I rarely get it now. I am only tired if I didn't sleep, kind of normal. Thyroid, my long list of supplements, hormone balance and supplements to help my immune system all helped my CFS/PEM. Now just POTS really.

1) started later into the illness. I started improving 5 1/2 yrs into the illness and started exercising again. Without my knowing at the time it was the worst thing I could have done. My ME specialist advised/warned me that when I started to improve to do NOTHING. I did not take his advice unforntuneately. Now I have PENE.

2) problems with my equilibrium after overexerting mentally and physically. Nausea, heart racing, veritgo and can't stand upright. Muscle weakness/trembling. Need to stay lying down. Does NOT diminish with good sleep or rest.

3)Hmm, no.

3)Don't feel it coming on. I can run 35 mintues and do light weights on "good days", feel good while doing it and within the 16 hour mark I can feel it coming on.

4)No I only experience this when I go over my boundaries.

Not sure I can capture my PEM/PENE with these questions, but I'll try.

1) In hindsight, it's hard to say when my illness started, but there's a clear very sudden flu-like illness that began the majority on on-going symptoms, ie, my inability to function normally. That illness included strong flu-like muscle aches, easy fatigueability, and significant cognitive dysfunction. After that, I never fully recovered and I had frequent bouts of PEM/PENE.

2) In the first 4-5 years, PEM included lactic acid type burning muscle pain as well as the feeling of swollen joints. Substantial cognitive dysfunction was also prevalent during that time. I was trying to function normally since I had no idea what was wrong with me and I was taught not to "give in" to illness. :Retro rolleyes: Later, my PEM included more flu-like symptoms -- swollen lymph nodes, sore throat, etc -- in addition to muscle aches and cognitive dysfunction. I have a high pain threshold, so while I don't experience unbearable pain, the pain will prevent me from sleeping or wake me up at night.

3) This question is harder. I think the PEM came and went in the earlier days, so I had what I called "flares". As time went on, the "flare" condition became the new normal. It was at that point that I learned to pace based on AT and a HR monitor. Then I could avoid PEM/PENE most the time, but I couldn't do much in the way of mental or physical activity.

4) I don't really understand the difference between PEM/PENE and relapsing, but that might be because they go hand-in-hand for me. PEM/PENE comes with physical activity, mental activity, and viral infections. My improvements have come in how much I can normally do before PEM/PENE hits.

5) Not a clue, except that I know that most of the time if I do more than my usual activity, I'll have PEM/PENE. I avoid most PEM/PENE with pacing and HR monitoring. Viral infections still get me, though.

6) Mornings I can do more without consequence. By afternoon, I have very few energy resources left, so it's very easy for me to initiate a bout of PEM/PENE later in the day, especially if I don't nap (or rest supine -- no reading, working, or tv) for a couple of hours in the afternoon.

I was on Valcyte for a short period of time but had horrible side effects from the medication that I had to quit. I am now being treated for Bartonella though not sure I really have that....having a harder time working and worse PEM since starting on the antibiotics...not sure what to think.

No one seems to know what really is wrong with me...I seem to fit more into the CFIDS symptoms than Lyme because I do have PEM after mental exertion. Also poor sleep quality (unrefreshing).

1) When did your PEM started. At the same time of illness or later?
I don't know whether or not it was around the first times I crashed... I just saw it as the up and down flow of whatever was wrong with me and hadn't connected it with activity levels at that time. This time around, it was there from the start, but early on I was so ill that I was chronically overdoing it just by minimal activity, so was in a constant state of PEM. Took a long time to realize I could feel better if I did much less.

2) What does your PEM feels like.
I get the feeling that trying to think is literally ripping my brain apart from the inside out. There's extreme discomfort up my spine from mid-back, and all around my head. Not exactly "painful" in the conventional sense, but agonizing in a whole new way. Processing somebody talking to me feels like every word is going to fry my brain. This kind of sensation tends to happen without the delayed reaction, though, so I'm not sure whether it qualifies as PEM. It's the consequence if I try to "push through" once things are already difficult. It is awful.

I also get a different type of PEM from physical activities or stress. Feels like a really supremely terrible cold, except without the congestion. The glands in my neck swell up like mad, and I feel super crappy/ill. Super low energy, even compared to normal. Super weak - walking up one stair becomes a challenge. Not capable of even attempting mental activities. Can't do much of anything at all beyond lying there waiting for it to go away.

3) Is it constant or Comes and Goes, does it get better and worse.
Once it's there, it's there. I wish it would come and go. The super intense mental frying tends to fade away after while if I get somewhere dark and quiet and alone, though I seem to be more prone to it flaring up again for a while after. The "sick" feeling lasts usually for about a day or two badly and then gets slowly a little better over about a week or so.

4) What is the relationship of PEM w activity level. Is the PEM worse when relapsing?
It seems to be proportionate with my overall wellness level - so it cuts me down to 10% of my normal functioning of something, whatever that may be. So when I could barely function to start with, the PEM meant I could barely breathe and couldn't roll over on my own. Now I'm bed bound normally but can walk to the bathroom, etc. so the PEM puts me back closer to how things used to be.

5) Do you get any sign that PEM is coming and are you able to avoid?
From too much mental activity (conversation, tv, computer, figuring things out, etc.), I get an immediate "fuzzy", pressurized feeling along my spine from about mid back up, and all around my head. It's like a much lower grade version of the rip-my-brain-apart feeling. It's not painful exactly, but uncomfortable. Sort of the way that an itch you can't scratch or an arm you're lying on funny is uncomfortable and demands attention, but without being strictly "painful." Sort of feels like I'm being squished firmly on all sides with styrofoam, and like I really badly need to change position, but there's no better position to change to. My face also feels really "hot" - sort of like in my previous life if I had been exercising hard and then stopped suddenly and my face turned bright red, etc. Sometimes I also get really sweaty for no apparent reason. Soon after, I lose my ability to follow conversations, or focus on faces or anything else, or eventually even to register that somebody is talking (I tend to think the last parts are a protective attempt by my body to keep me from processing information, as that's what hurts). This is the sign that I'm pushing way too far with the mental stuff and am in dangerous territory. Often at the early stage if I stop everything right away I can avoid further problems. But my mental stamina will still be in the toilet for a long time after. I think this my "low battery" indicator. Need time to recharge. If I've pushed to the point that I'm losing my ability to follow conversation, it's likely it's already too late.

Often with physical exertion, I get no real warning at all. Sometimes I will feel weaker or light-headed at the time, but by then it's too late to avoid the PEM. Sometimes I have no idea it was so bad. It often doesn't feel like so much of a stretch at the time. I hate this, as it makes it SO much harder to avoid doing too much.

6) Is there a particular time of the day where you are more likely to experience PEM.
I don't think so, except in that I tend to have less energy left by evening or nighttime, so I'm more likely to run out then and be doing damage.

Often I have about a 19hr delay in getting hit with the PEM wave, give or take. Usually it seems to hit either on waking, or sometime in the afternoon.

This is a great thread and a really interesting/important one to have. I will come back to add my answers-can't do it now. Thank you, Cassandra

I have discovered that for me, at least, those symptoms are directly related to exceeding my anaerobic threshold. Now that I wear a hear monitor (again), I can avoid those symptoms by setting an alarm on my heart monitor to go off at or just below my AT. If it alarms I sit (or lay) down until my heart rate goes down 20-30 bpm.

If you haven't done exercise testing, you might want to try wearing an HR monitor and see if your heart rate is always above a certain level when you start sweating. If so, you can train yourself to stay below that level. Just a thought.

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

At the same time. ME started as an acute viral illness for me and PEM was apparent from the start. I had been well and exercising normally up to the day I became ill with the viral symptoms

2) What does your PEM feels like.

An increase in ME symptoms. For me that sore throats, glands, sore muscles and other flu type symptoms. My brain stops working and I am very physically weak

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

Once it starts it's constant

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

I've never had a remission so PEM for me has been consistent. If I am in a particularly bad patch then the PEM is more severe and long lasting

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

No, it's always with exercise. There is usually a delay in PEM kicking in so one cannot stop and avoid it

6) Is there a particular time of the day where you are more likely to experience PEM

Yes, activity at the times my cortisol is lowest (i.e. mornings) beings on noticable more severe and quicker PEM

I'm finding it hard to tease out PEM from the general feeling ill all the time or from a crash.

For me it tends to be like this

I feel ill all the time - sometimes i have a few days where i feel more able, occasionally i have a whole day or two where i think i am not sick and dont feel too bad.

If i do any physical activity for more than a certain amount of time (which is variable from day to day and activity to activity) - e.g walking, very light weeding, hoovering, making a bed or cooking, then i get a feeling like i am going to expire - everything becomes heavy and hurts - my brain seizes up and i cant think, speak etc, i start to get hot and sweaty and if i carry on ( i have a remarkable ability to push) then i will feel like i am literally going to die. At this point i start to shake and must lay down for a few hours to recover some function.
If i do the above too frequently i will start to go genearlly downhill and the feeling of about to die can be brought on by much less activity eg walking in the house or unpacking the dishwasher or talking to the kids. if i get to this state it will take a few weeks to recover.

I fi am in a better patch - sort of housebound rather than sofa/bed bound then i can start to increase my activity - if i then have some of those good days i can go for a longewr walk or do a few chores inj a day - then i can get delayed PEM that comes on approx 2 days later, which i then have to rest for a few days to recover from, back to my baseline which is frankly feeling s**t all the time.

I can really only avoid PEM if i do nothing but reat and eat and dress and shower and interact with my kids and husband. But even though it makes me feel better, after a short while of this i start to get agitated and restless and need to start DOING - then it all kicks off again.

All the best, Justy.

Feeling horrible or having what feels like a bad relapse early in treatment seems to be pretty common with Valcyte. I suspect an IRIS-type reaction, but I'm no medical specialist. From what I've heard, people who can survive that bad period do improve with Valcyte. In a perverse kind of way, having a bad early reaction can be a good sign that Valcyte will help in the longer term. Of course, it could also mean that Valcyte is just bad for you.

From what I've seen, people who are older, sicker, or have been sick longer seem to have a more difficult early stretch with Valcyte.

I can see that it might not be possible to get through the bad patch if you are still trying to work, even if you were willing to tolerate it from a physical perspective.

great discussion

PEM didnt happen for me until after the first 9mths-1 year of this illness. It started only AFTER the accute bad bouts of flu like ME I used to get .. I'd be in bed with what seemed to be a virus and with no after effects with each time it hit in that first year.
PEM only came in once my illness was in a permanent state and not an on and off illness no more.

If this question is asking how we crash.... in my case that it is impossible to know every time I crash, what form the crash will take. Its different all the time and there has been many different like stages my illness has gone throu. Sometimes I crash like virally (sore throat and feeling feverish and sometimes do get an actual fever. ..this crash is like my immune system has been knocked down some (P.E.N.E)..

other times I crash more neurologically..eg shaking, twitches, unequal pupils, hyperreflexia etc

while other times I can crash in like exhaustion state but that is nowdays that is far less common to me.

I'll share my most recent but short crash (Ive just spent the past 36 hrs in bed, not sleeping but just resting.. feeling completely fine but knowing if I got up I'd probably crash in some way again.. so resting to get ahead of being hit with symptoms and stop symptom(s) of some sort or another from happening.
(right now Im feeling amazing after 36hrs spent in bed, its left me less vulerable to my ME symptoms).

I havent had a crash like this for a while but anyway here's the last one from 2 days ago. It was day (day 2) of doing more then I normally do (the day after being taken shopping). This crash manifested in a period in which I DIDNT feel physically unwell (so I wouldnt call it malaise), DIDNT feel muscle or body tired (so I wouldnt call it exhaustion) but rather just SUDDENLY started to feel EXTREMELY sleepy, to the point tears were running down my face, constant yawning and starting to fall asleep in a chair while being talked too.

I went from a non sleepy state to this state in probably less then one minute period, it was like an instant hit thing

Thou Id only been at their place for less then 2 hrs, I had no choice..but to ask if I could go to sleep somewhere (as I'd got a lift with someone who was going there.. I couldnt ask to be taken home).. I just couldnt stay awake.. I then slept for about an hour on their couch and woke up after quick nap, completely fine again...lasted out the next hour feeling great, till the others were ready to leave and take me home (still felt great then once home, no symptoms)

That may of been a crash from doing shopping day before.. hard to say ..or maybe just chatting for a couple of hours that day did that (I mostly was just listening) but my whole ability of my body be handle activities would of been lower then it normally is due to going shopping day before.. thou that "NEED to go to sleep" kicked in suddenly and went away suddenly (once I'd slept an hour, it may of been less).

I guess that is a kind of PEM..thou its hard for me to call it PEM as it is so unlike the PEM I used to get and with no malaise. If I called that PEM.. I dont know it seems wrong to do as it isnt quite right. Im wondering what others would call what I described above.. that crash was more like I have some kind of sleeping disorder forcing me to have to sleep kick in..

As it WASNT exhaustion or worn out tiredess, getting up and walking around was helpful a little for this individual crash symptom but a sleep is the quick cure for it...

this is a symptom which for me also would of probably went away in a couple of hours even if I hadnt sleep and had managed to push myself throu that 2 hr bad patch. I know that from the past when I have managed to push throu THAT symptom. (That is one of a few symptoms Im safe to push throu it IF I can manage it, its often so intense its easier just to go straight to bed).

It all depends on the type of crash ive had at the time.

ME symptoms certainly get worst when relapsing... but the amount Ive relapsed dont necessarily thou mean more PEM.. it could just mean more of other ME symptoms eg I can crash in a complete kind of neuro way rather then exhaustion way.. eg constant tremors and seizure like activity, unconscious bouts. Neuro crashes are bad as they take me longer to recover from (2 weeks for improvement at times).

A crash to me may mean that the amount of the types of symptoms I get may have just quadrupooled which may or may not come in with tiredness or feeling exhaustion.

Yes I can avoid much of time most ME crashing. For example I know I wouldnt have ended up having to sleep while trying to visit someone a couple of days ago.. if I hadnt been shopping the day before.. it happened just under 24hrs of when I'd been taken shopping..4pm). Thou I felt completely fine when I was taken to visit them.. symptom took 2 hours of sitting, mostly listening before it suddenly hit.
It was COMPLETELY AVOIDABLE if I hadnt done more then I usually do for 2 days straight.

Im actually thinking more about that sleep incident the other day.. there was a warning sign that I was overdoing it before that hit.

I felt very cold, more cold then I should of been. I asked for them to get me a jumper which they did and I was still very cold with the jumper, I was unable to warm up and they didnt offer to get me a coat, just turned to me and said thou I was shivering.. "you cant still be cold" one of them was wearing a t-shirt and the baby was running around with no leggings on.

My other warning signs that my condition is about to change is feeling feverish or a fever or getting a sore throat.

umm .. probably later in the day.. my ME weaker (time Im more vulerable.. I dont mean like muscle weak) is probably between 3-9pm. Im better when first waken up (that is only once when fully awake..its like my energy does build up while asleep) and I have like a better period between 9pm-1am.

I think its all related to my screwed up circardian rythm which makes it more of an effort to be doing things between 2pm-9pm so hence more likely to lead to PEM if I push myself between those times.

A crash thou could happen ANYTIME if it is a post exerctional one... these can kick in for me anywhere from 13hrs to about 28 hours or longer after Ive done more then usual. The post excertional crash time, all depends on when Ive done the activity and how much I was able to do at the time (so based on the degree of the crash).

I still dont know exactly when Im going to crash but know its usually next day if Im going to crash eg day after shopping i know Im vulerable to getting some symptom or symptoms come in if I dont rest up.

Id like to see ME defined as post excertional "symptoms", rather defining which of the individual ME symptoms we are supposed to have worsening. Post exerctional crashes manifest is so many different ways.

soxfan.. I have no idea of your other symptoms but reading your post made me wonder if you could be one who just has something like POTS and not have ME .. seeing physical exercise is okay for you.

POTS patients can be better when moving around but if having to be "upright" all day as in at work.. even if you were sitting all day it could give one symptoms.. or maybe your line of work has more standing (you may not have been standing around so much when you were on holidays.

POTS may explain why you maybe could hike and snokel but may have issues at work and after that (as maybe your work activity involves more standing? or sitting upright and not moving much?. POTS can cause a lot of fatigue and other symptoms.

Some POTS patients could be easily misdiagnosed with ME.

just something you may want to consider... maybe its sitting which without moving much or standing at work which is screwing you up.