Describe your PEM

[soxfan]

taniaaust1- I do stand at work as I work in a pharmacy...I am on my feet 6-7 hours with 15 or 30 minute break. I am going to read up on POTS since I have never had a doctor even mention this to me so I have no idea what it really is.

Like I said in my post I do not have problems with any type of physical activity including exercising...cleaning...gardening...etc.

Now I am very curious about this POTS....If indeed this is my problem is there anything that can be done for it? I have no problems at work with concentration or remembering but when I start to get tired then I start to sweat and my skin gets really red. That is when I know I have already overdone it. I will have episodes of major sweats almost like I am suddenly on fire.

Thank you for this suggestion because I think you could be on to something....

 

[taniaaust1]

taniaaust1- I do stand at work as I work in a pharmacy...I am on my feet 6-7 hours with 15 or 30 minute break. I am going to read up on POTS since I have never had a doctor even mention this to me so I have no idea what it really is.

Like I said in my post I do not have problems with any type of physical activity including exercising...cleaning...gardening...etc.

Now I am very curious about this POTS....If indeed this is my problem is there anything that can be done for it? I have no problems at work with concentration or remembering but when I start to get tired then I start to sweat and my skin gets really red. That is when I know I have already overdone it. I will have episodes of major sweats almost like I am suddenly on fire.

Thank you for this suggestion because I think you could be on to something....

POTS can cause sweating.. its an autonomic malfunction. I thou with the POTS usually sweat while standing. But yeah do look into it, it can easily be ruled in as your issue or out.. just with some orthostatic heart rate testing if you have a home monitor you can borrow or if you can take your own pulse (just have someone with you when doing standing still testing as it can cause a pass out!!).

It would be horrid to miss your diagnoses so do have it ruled out as it sounds closer to some of what you said then ME. The good thing is if you do have it.. yeah there are things which can be done so your body is put into less of a stress state when standing. POTS is often treatable eg medical support stockings to help keep blood up in the brain along with other things eg meds.

(in POTS its the head which is being deprived of some of its blood during standing, which can cause the brain affects and tiredness.. the blood is pooling elsewhere often unnoticed in body eg abdomen/legs when standing).

POTS can also cause skin flushing. It is a little strange thou that you arent getting the symptoms when standing but rather after standing. (but i can be affected by it for a few hours after standing at times.

If you want to test yourself for POTS.. take your heart rate after laying for 20 mins.. then stand up and take it.. while standing very still... remain standing very still and take it at the 5min and 10min mark.... and see if POTS shows up.

POTS is diagnosed by an increase of the heart rate of over 30 beats per minute when standing in comparison to the laying reading (OR a heart rate of 120 or over when standing). For many (or most?) it often shows up in the first 10 mins.

(better still if another can take your heart rate for you so you arent moving at all once standing... moving may stop the POTS from showing up)

You may have to do this test on several different days as it dont always show up if someone has it. (be aware if one has been sculling water to try to stay hydrated, it may not show either). http://www.dinet.org/

POTS commonly "can" cause issues when exercising but not necessarily so... standing is probably one of the worst triggers of it.

 

[justy]

I forgot to mention that my PEM can be brough on by mental exertion too, not just physical, although it takes more computer time etc to make me feel worse than it does doing physical things.

 

[taniaaust1]

I forgot to mention that my PEM can be brough on by mental exertion too, not just physical, although it takes more computer time etc to make me feel worse than it does doing physical things.

same here. I forgot to mention that too. If I stay on computer all day.. I end up unwell.

 

[soxfan]

Thanks for all those tips...I am really surprised that POTS has never been mentioned to me. I tell my doctor all the time what happens to me when I work...I probably do have it but I also feel that I have CFS as well because I have some of the common symptoms of CFS like PEM...unrefreshing sleep and poor response to stress among others.

If there is something I can do to help my symptoms while I am working maybe I won't feel as horrible afterwards...I am definately going to talk to the doctor about this. I will check my heart rate also. I have a pulse and oxygen meter I can put on my finger..would that work? I also have a blood pressure cuff I could use. We sell heart rate monitors in the pharmacy which look like a watch so maybe I should try that too.

I do sweat when I am standing up..It seems as though when I start to get really tired at work then I start to sweat as well. My skin gets really red especially my arms and face. I drink alot of water (smartwater and propel) when I work to keep hydrated.

I actually went into Boston and saw a specialist in CFS and he never mentioned POTS either!

 

[Desdinova]

1. Within a year to nine months of my coming down sick in Dec 2006

2. My fatigue increases (intensifies), My brain which always feels hot will increase in intensity. Disorientation problems: Reflexes and Reaction times slowdown and become off/out of sync (almost feels like your drunk). At least some or usually all of my other everyday problems (Pain etc.) will intensify/increase.

3. Comes on quickly Typically lasts one to three days (Typically but not always.) Slowly tapers off.

4. N/A

5. I often (not always) get wired lightheaded sensation then it comes on quickly.

6. Nope

 

[SickOfSickness]

1) When did your PEM started. At the same time of illness or later?
I think it was at the time of illness. I don't know for certain because I was young.

2) What does your PEM feels like.
It depends on what kind of exertion I did and how much. I try not to push myself much anymore, but even small things can cause PEM. Feels like I did 10x what I actually did, and it feels like the recovery is taking 4x as long as it should (even if I had done 10x). Muscles feeling weak and sore, generally tired and I sleep more and still don't feel like it was enough, brain fog, and worse mood unless I am very careful to lower my stress and add good things.

3) Is it constant or Comes and Goes, does it get better and worse.
Mostly constant. Yes it can get a little better or worse.

4) What is the relationship of PEM w activity level. Is the PEM worse when relapsing?
Even if I do the the bare minimum activities, I would have some level of PEM. If I add small activities, I notice an increase in PEM for every activity. I don't tend to get relapses (by my definition) unless I pushed myself hard for days, which I don't do, or if there is a reason like I have the flu on top of usual difficulties. PEM is worse if I had the flu or had pushed for days. To me the relapse is just a big increase in the base level of PEM.

5) Do you get any sign that PEM is coming and are you able to avoid?
It's guaranteed to be there if I did something hours before, or the previous day. Not avoidable. Certain self-care like supplements might help lessen the PEM experience but that is only a crutch, it is not erasing PEM IMO.

6) Is there a particular time of the day where you are more likely to experience PEM.
Later in the day is more likely because activities done in the morning could add to it, as well as activities in the afternoon and evening. But it can be present from waking time, if the exertion was the previous day or 2 days before.

 

[Seven7]

To all,

I have a significant reduction of malaise, not sure if is equillibrant+ imunovir or Pacing. But one thing I can say is that now, I can distinguish symptoms by themselves because they do not all happen at the same time now nor as intense. If you ask me what PEM is today, I would of swear that I start feeling Brain and Spine inflammation. If I push all the other stuff that goes w it follow.

But If I have to describe what it is that first feeling I get, is like blood not flowing to brain, then is gets that balloon and noise feeling. Then the burning and also in spine burning.

So My uneducated just by observation guess, is that at being upright lack of oxygen to brain or inflammation reaction is what causes PEM for me. The rest is just a reaction of the main issue.


7

 

[Sparrow]

If you ask me what PEM is today, I would of swear that I start feeling Brain and Spine inflammation. If I push all the other stuff that goes w it follow.

7

I am struck by how extremely similar many of us seem to be describing this sensation (brain fire, brain frying, fuzzy feeling along spine and into head, burning along spine and into head, etc.)! Feels like this must definitely be a key part of the illness. I wonder if doctors/researchers have noted this before. I guess somebody must have, right? Is that what they mean by "headaches of a new variety"?? I never would have put together that this is what they were talking about. In fact, when asked if I have headaches, I've said "no" in the past. ...Though I have terrible discomfort from my "brainfire". This is not in any way similar to a headache for me. Involves the head and spine, but definitely a whole other thing (and the spine involvement is consistent). I would be willing to bet a lot of general practitioners wouldn't recognize "headache" either if a patent came to them describing a fuzzy sensation down their spine and into their head.

 

[Seven7]

when I went to cfs specialist I answer no to the headaches question too. I get throbbing, like heartbeats sensation, burning and PRESSURE A LOT. Used to get ice picket like 3 seconds pain but that is gone. Is more like inflammation and burning.

Is like when your feet fall sleep and you stand up on it and blood is coming back to it. Is the closest I can describe it to another known feeling.

 

[ukxmrv]

I found some old notes that i had written about PEM a while back

1. Day 1 - Straight after exercise, weakness, wobbliness, loss of co-ordination (falling over), increase in brain symptoms (i.e. forgetfulness), face very pale

Day 1 - That evening, headache (unusual for me), flushed face, insomnia, pain in muscles is setting in, feeling of imflammation through body, sensation like a bad hangover setting in. unable to bathe/shower or cook dinner

3. Day 2 - The morning after, sensation of severe hangover, headache, stomach felt full after a small breakfast so stomach function has deteriroated, muscle and spinal and all over pain, stiffness, arms felt "dead" after sleeping, pins and needles

4. Day 2 - Evening, sore throat starting now. Nose is blocked and stuffy. Feels like a sinus infection is starting. Stomach full, bloated and not moving. Very weak , still unable to bathe or cook dinner

5. Day 3 - The next day, full force has hit now. Sore throat, glands, all over body pain, spine feels like it is burning, weak, shakey, brain dead. All of the above.

 

[taniaaust1]

Sparrow and Inester. I dont view those things as a headache either.

I think our specialists need to be extremely careful of the questions they ask us. Maybe asking if we get any issues with discomfort involving our heads would supply them with better answers to all what is going on then just asking if we get headches.

Is like when your feet fall sleep and you stand up on it and blood is coming back to it.

I used to get that all throu one side, the left side of my head, like that whole half of my brain (pins and needles and numbness).

In my case it seemed to do with something in my neck as turning my neck suddenly could bring it on.

 

[Sparrow]

Used to get ice picket like 3 seconds pain but that is gone. Is more like inflammation and burning.

I used to get the ice pick stabbing in my head too. CRAZY bad for a few seconds originating from a very precise area, and then gone. Sometimes it would stab again a little while later. Seemed to go in phases where that happened more often and phases where it didn't happen at all. I don't recall it being directly connected to activity either, but wasn't on the lookout for that kind of thing then.

 

[pine108kell]

It would make me feel ill just trying to answer all seven of these questions properly. I just wanted to add that the worst PEM/PENE symptom I have is PENE related. Mental activity, simple things like talking, reading or doing what I am right now can really make me feel ill.

PENE can spring up in just a few minutes of thinking during some periods or sometimes I can read a few hours with few symptoms. These activities make me physically ill--weak legs, achy back, extreme fatigue, headache, aggitation, overstimulated feeling. I can recover in a fairly short period (minutes to hours) if I have not done too much and close eyes and rest; prolonged activity over days causes long crash.

I also have PEM and extreme physical fatigue, but many times it is less damaging for me to walk a mile than engage in conversation or other mental activities. The hard part is making people understand this since it is so weird.

 

[soxfan]

I have much worse PEM with mental activities than with physical activities...and yes it is very hard for people to understand this. I can even exercise (walk at a pretty good pace) with no consequences. If I go out with a friend for lunch and engage socially then I will have to come home and rest for hours. Mental exertion has always been a huge problem....I can even just go on the computer for 5 minutes and start to feel sick...

 

[DaiWelsh]

Good thread, thanks.

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

As far as I remember it *was* pretty much the start of the illness, but that is with hindsight, I think it took me a while to realise the pattern, as it was so alien to have viral type symptoms (or mental symptoms) in response to over-exertion and particularly to get it a day or more later.

2) What does your PEM feels like.

My "typical" (in so far as anything with this condition is ever predictable) profile after a period of significant exertion is:

Day zero (day of exertion): to feel "normally" tired straight afterwards (I believe this is getting a little worse over time but that part only may actually be deconditioning). Note that if I totally overdo it I do get extreme symptoms at the time, but I am talking about exertion beyond my "long-term envelope" but stopping before reaching "short-term envelope".

Day one (day after exertion): to feel more physically exhausted with some flu-like symptoms and some neurological symptoms

Day two: to feel worst physically, muscle pains, flu-like symptoms, also neuro symptoms will be kicking in severely now

Day three: the physical side is fading but neurological side is severe

Gradual fade from that over anything from 1 to 3 further days

I have probably made it sound more exact than it really is, but I am quite concious of the neurological aspects as I work from home as a programmer and I know from quantifiable changes in output how well my brain is working (or not).

Neuro symptoms include intense pressure on my skull and back of neck/top of spine, heavy head, inability to focus on mental tasks, poor choice selection, inability to make choices at all, clumsiness (frequently break crockery), irritability and "thinking through treacle".

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

Varies by amount I have done on preceding days. If I maintain very low activity for several days it will fade, but only until I next exert myself.

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

Fairly direct relationship: high level of activity leads to bad PEM over several days (as above). Sustained low activity will allow it to gradually fade. I think it is probably worse when relapsing but more in the sense that you start from lower level so dip further, not like it has ever been less than pronounced, with possible exception of a month or two remission last year.

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

I get "wired" and wobbly if I do too much but by the time I get those symptoms I am doomed to days of payback. I generally try to stop before I reach that point (what I call my short term envelope), but that means basing it on gut feeling as there is no clear sign I have reached my "long term envelope" i.e. the level that will cause me payback over following days. I think some people refer to 80% rule, so I don't get signs to warn me when I hit 80% and should stop, only when I hit 100% and it is too late

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

I generally feel worst in the morning and mid-afternoon. I can get brief spells of ok in morning and afternoon depending on severity. I generally have a very bad patch around 5-7pm. I almost always feel considerably better in the evening/night (after about 8pm) and I am often tempted to switch my work day to then, but while my symptoms fade I am still "normally" tired by that time. All the above can change if I get up early and have to do something physical first thing, that can shift my whole day around in unpredictable ways.

I am not sure I am describing the same PEM as you btw, I am generally referring to "delayed" PEM, where I suffer over 2-4 days for high activity level on one day. The more immediate reaction to excess activity I try to avoid and besides find less of an issue (purely because of the relative duration). When I do push myself right out of my envelope the immediate symptoms will generally be those a "normal" person would get after exercise but grossly out of proportion - 10 minutes playing cricket with my son in the garden being approx equal to a marathon carrying a rhinosaurus (sp?)

Additional symptoms (not consistent) - facial flushing (this is ironically the only thing my wife can usually spot), bowel issues (every which kind), occasional sharp headaches, muscle aches not in muscles I have used, cranial pressure (back of neck is consistent but other parts of head from front to back are variable).

 

[Marco]

This is a great thread.

These are some of the best, most accurate descriptions I've yet heard of how physical and mental lack of endurance affects us.

I really do wish this could be sent to all the so called experts in 'fatigue'

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

Aside from a few minor symptoms I first new I was ill when I collapsed during physical training. That was the end of my tolerance to aerobic exercise but PEM following minor physical or mental activity didn't come until many years later.

What does your PEM feels like?

I need to first distinguish between the everyday effects of physical or mental activity and a 'crash'. I'm usually more capable in the mornings but as the day goes on the feeling of lightheadedness and inflammation in my head increases and by lunchtime I need to sleep or at least be off my feet for a few hours. My head/brain feels increasingly hot/inflamed/pressured and simultaneously light (no similar feelings in the spine). My eyes also feels similarly hot and inflammed.

Any physical or mental activity accelerates this growing feeling of malaise as the day goes on and this can leave my capacities much reduced for some hours or longer.

If I do overdo things by getting into the aerobic zone or even having a 20 minute phone conversation with my sister then I risk a 'crash' which is what I consider PEM. In addition to the above, I find my vision becomes blurred, I become uncoordinated, I develop a limp in my right leg only and a splayed stance and then it feels as If I'm just completely drained of all energy. I then can't stand, walk, think, comprehend, talk or process any information at all and sleep is all I can do.

At no stage does it feel like muscle fatigue per se although the joint and muscle pains are increased. To me, it feels as if my brain is no longer communicating with my body to the extent that I suddenly need to struggle to think how to walk. Strangely, I'm usually a fairly socially anxious person but during these crashes I become completely oblivious to what's going on around me.

The after effects are basically just a severe exacerbation of all the symptoms for however long it takes to get back to my baseline.

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

The daily deterioration in function is a constant but full crashes are periodic, depend on my level of physical of mental activity but the tipping point is impossible to predict.

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

I actually don't recognise the relapsing/remitting description. In my case there have been a series of distinct step changes where my baseline level of functioning/severity of symptoms have deteriorated markedly without any substantial remission afterwards.

Following each or these 'step changes' my proneness to PEM has increased.

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

'Getting aerobic' is guaranteed to lead to PEM. As above, the increased inflammation/lightheadedness and vision problems is a sure sign that a crash is likely but again the 'tipping point' is completely unpredictable. I can go from fully mobile to completely immobile in the space of a minute.

Hot weather predictably makes me much more prone to PEM.

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

My energy level is better in the morning but declines as the day goes on and is relative to any activity. So PEM is more likely later in the day as energy levels drop and the feeling of inflammation and malaise increases but a crash can happen at any time depending on the activities that day or what I'd been doing in previous days.

 

[Mel9]

I have much worse PEM with mental activities than with physical activities...and yes it is very hard for people to understand this. I can even exercise (walk at a pretty good pace) with no consequences. If I go out with a friend for lunch and engage socially then I will have to come home and rest for hours. Mental exertion has always been a huge problem....I can even just go on the computer for 5 minutes and start to feel sick...

I am the opposite I think
I can work on my computer but walking 1km can make me collapse with severe pem next day

 

[Seven7]

I wonder if it has to do with were the infection is. I have hh6 so my worst was mental, Now doing much better and not much PEM if any at all in the last month. Too earl to tell what is going on.

 

[soxfan]

They never could actually tell me that any HHV6 or EBV was activated. All my tests showed that they were past infections...I think maybe it is just where the virus hit the worse. I don't have many of the symptoms most have but the mental exhaustion with little effort is just the worse....it will put me down for hours afterwards and sometimes into the next day.