Post Exertional Malaise - is this what it is?

[JoanDublin]

Even after two years of dealing with this I'm still trying to figure things out. I was wondering what were your experiences of PEM? My young lad recently had a few days in a row when he felt like he had a little bit more energy. On 23rd June he walked to the hairdressers and back (40 minutes) and then went to his friends house (10 mins walk) and kicked a football around for a while. He hadnt done hardly any exercise for a few months previous to that because his energy levels were so low.

Anyway, the following day he was in terrible pain especially the balls of his feet but I thought his muscles were probably just reacting to lack of previous exercise, etc. However its been 11 days now and all his other symptoms have got worse again. Massive fatigue, gastro problems, muscle pain, headaches, nosebleeds. Does this sound like PEM to you? Could that level of activity that he had on the 23rd June cause this crash? If so, would it last this long? He hasn't been able to leave the house since - mostly hibernating in his bedroom.

Thanks for any insights and guidance

 

[daisybell]

That sounds possible to me...

 

[minkeygirl]

I agree, it sounds like he did way too much. I know you think it wasn't much but it can be. The rule is do 50% of what you think you can do, and that may be too much in some cases. I get wiped out for days talking on the phone.

There is no time frame as to how long a "crash" can be. That's the wonderfulness of this F'ing disease. Every day is different every hour is different.

All you can do is wait it out and while he's waiting. don't do anything that causes exertion. Hibernation is really all that can help.

 

[Sushi]

Yes, @JoanDublin, that is perfectly possible from what we know about PEM.

Note:

terrible pain especially the balls of his feet

this is one of the classic symptoms of Lyme and certain of its co-infections. Of course it is not diagnostic in itself, but it might be worthwhile to pursue some testing. (Sorry, I forget if you have already done this!)

Sushi

 

[JoanDublin]

Yes, @JoanDublin, that is perfectly possible from what we know about PEM.

Note: this is one of the classic symptoms of Lyme and certain of its co-infections. Of course it is not diagnostic in itself, but it might be worthwhile to pursue some testing. (Sorry, I forget if you have already done this!)

Sushi

They don't test for Lyme here in Ireland. I know, I know....madness. I'm building up a case for a series of blood tests and other tests that I know haven't been carried out and am going to try and get them done.

 

[SOC]

Here is the definition of PEM (called PENE in the ICC) from Myalgic encephalomyelitis: International Consensus Criteria. It sounds like your son's experience fits it quite well. Notice that under 1. it says that exertion "may be minimal such as activities of daily living or simple mental tasks". Walking for 40 minutes, then 10 minutes more followed by kicking a football around is far more than minimal exertion.

I have a couple of teenage students who probably have ME. They get PEM from much less than what your son did. They only kicked a ball around during a visit with cousins. They're still unable to function well enough to do any schooling more than a month later. I've had PEM last for months.

A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
Operational notes:For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level.Mild(an approximate 50% reduction in pre-illness activity level),moderate(mostly housebound),severe(mostly bedridden) orvery severe(totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects.Recovery time: e.g. Regardless of a patient’s recovery time from reading for ½ hour, it will take much longer to recover from grocery shopping for ½ hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately.Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person.

 

[JoanDublin]

Here is the definition of PEM (called PENE in the ICC) from Myalgic encephalomyelitis: International Consensus Criteria. It sounds like your son's experience fits it quite well. Notice that under 1. it says that exertion "may be minimal such as activities of daily living or simple mental tasks". Walking for 40 minutes, then 10 minutes more followed by kicking a football around is far more than minimal exertion.

I have a couple of teenage students who probably have ME. They get PEM from much less than what your son did. They only kicked a ball around during a visit with cousins. They're still unable to function well enough to do any schooling more than a month later. I've had PEM last for months.

Thanks @SOC
Looking at that it does seem like it's fairly classic PEM alright. I know that he overdid it that day. He knew it himself but it's really hard trying to rein him in when he gets even the smallest bit of energy. Mostly he is taking advice and resting in order to recover but now and again I guess the frustration gets too much. Two years is a long time for a youngster and he is so fed up with it. Like everyone else, it's a complete 360 turn on his pre ME life which was full of activities like swimming, scuba diving, football, table tennis, gym membership and hill walking...not to mention just the general playing around outside that youngsters like to do.

The other thing that seems to have worsened over the past 12 days now is his sleep rhythm. He has profound sleep reversal usually not falling asleep til about 5am or 6am every morning but over the last week it's more likely to be 7am or 8am before he is able to sleep.

Thanks for your help and thank you to everyone who contributes here. I don't post too often but I read and follow as much as I can so that I can better inform myself.

 

[xchocoholic]

Has he seen a doctor when he's like this ? Some labs will only be positive when symptoms are present. It might make him feel better emotionally too to know a doctor is evaluating his symptoms.

Imho, 11 days is a long time for pem. Ever since eliminating my food intolerances my pem lasts 2-3 days. Infections, mostly utis for me, last until I get smart enough to treat them.

Fwiw, hopefully he's getting social time with his peers. Even having friends over to play video games or watch movies would work.

Tc ... x

 

[heapsreal]

I wonder if pem lasting no more then a few days is a loss of energy be it atp/creatine/ribose etc and being unable to replace that through either regenerating hormones or mitochondrial issues, but with a few days rest these things are replenished to a certain degree.

long bouts of pem or better called a crash is some type of reactivation of an infection and can be a longer term issue like a mono.

If one is pushed hard enough then pem can lead to a crash with an infection reactivation. Sometimes the reactivation crash can just happen without over doing things.

This is just a theory I'm basing off my experiences??

 

[JoanDublin]

Has he seen a doctor when he's like this ? Some labs will only be positive when symptoms are present. It might make him feel better emotionally too to know a doctor is evaluating his symptoms.

Imho, 11 days is a long time for pem. Ever since eliminating my food intolerances my pem lasts 2-3 days. Infections, mostly utis for me, last until I get smart enough to treat them.

Fwiw, hopefully he's getting social time with his peers. Even having friends over to play video games or watch movies would work.

Tc ... x

No, he hasn't seen a doctor this time but he has seen his GP when he is at his worst and they have never even suggested doing any labs. They just don't seem to operate like that here in Ireland He is also fed up with me bringing him to the docs mostly because he knows he comes out with very little in the way of treatment or ideas to make him feel better.

He doesn't want to see his peers because he is embarrassed about being sick and doesn't want to have to keep making excuses why he can't do this or that. Along with that he is severely affected with his bowels since the onset of this illness and spends a lot of time in the toilet in pain. He does home enemas himself in order to keep the situation under control and avoid as many as possible hospital admissions. He does have 'online' friends that he enjoys gaming with but who don't know anything of his personal circumstances. I think it helps to make him feel a bit normal. That recent trip with his best friend to play football was the first time he has seen him in months so it was a significant development. Just a shame he is paying such a high price for it now though

I'm hoping to get him to see KDM in Belgium. At least that's the plan at the minute. I have to consider things like money though and weigh up the benefits of testing against possibly not being able to follow through on treatment. I'm also compiling a list of tests that I would like him to have and try and negotiate with his GP to arrange them. It's all a bit of a battle, especially when they look at you kind of blankly!

 

[xchocoholic]

Sorry to hear his doctors aren't ordering labs for him. In the US based on my experience pediatricians take kids complaints seriously.


My experience with pem is the same as heaps. I can push for awhile but eventually start getting uti symptoms. If I ever get smart, I'll start drinking 8-16 oz of cranberry juice and garlic, etc daily. Lol.

Do you know any parents of children who have health issues who could help out ? Hopefully he would see that he doesn't need to be embarrassed. Or get used to it. Childhood is full of embarrassing moments.

For digestion issues, I'd look at food intolerances and digestive enzymes. Enzymedica explains enzymes but it's on the web. If his problem is constipation magnesium citrate is easier than enemas. I take Natural Calm daily for this.

Hope he feels better soon. Tc .. x

 

[xchocoholic]

I wonder if pem lasting no more then a few days is a loss of energy be it atp/creatine/ribose etc and being unable to replace that through either regenerating hormones or mitochondrial issues, but with a few days rest these things are replenished to a certain degree.

long bouts of pem or better called a crash is some type of reactivation of an infection and can be a longer term issue like a mono.

If one is pushed hard enough then pem can lead to a crash with an infection reactivation. Sometimes the reactivation crash can just happen without over doing things.

This is just a theory I'm basing off my experiences??

This is my experience too. Tx. X

 

[Valentijn]

It sounds like a pretty bad crash

Has he gotten any good advice on pacing yet?

 

[JoanDublin]

It sounds like a pretty bad crash

Has he gotten any good advice on pacing yet?

Yep he does understand pacing and to be honest he does it pretty well. He doesnt have much choice really because he has little energy to do anything. This was the first day where he felt he really wanted to do something 'normal'. I didnt even know he was going to go out because I was in work that day. It wasnt til I got home that I found out how much he had done and he looked wrecked. He could barely walk for three days.

He had been consistently bad since he crashed late January - never managing to get back to school since then for even one day. Before that he had about three weeks where he felt ok and, while he took things easy at that time, he still crashed. It might have been precipitated by something he picked up in school in January as he is very susceptible to viruses?

The previous time I remember him suffering from PEM was in March when he spent about 20 mins just playing outside with my two yr old grandson. Nothing much - just a bit of horsing around and pretending to chase the little fella etc. He spent about six day after that mostly in bed with about three very bad days where he could hardly wake up, felt sick, couldnt eat etc.

His sleep reversal is worse as well. He didnt get to sleep til 8.30am this morning and has only now woken up (5.00pm in the afternoon) but is still tired and sore and feels like he wants to vomit.

It just feels like he can literally do nothing,because there will be severe consequences

 

[leela]

Have you ruled out mitochondrial disease? While this sounds a lot like PEM, it also seems quite mito-related. Of course ME does involve the mitochondria; but if he has clear mito disorder, you might have other treatment options? Sort of the same gray area as ME, but a bit more specific anyway.

 

[Seven7]

@JoanDublin
Do poor man tilt table test on him (yourself). There can be sooo much help if you can treat the OI.

My go to out of crash:
1) Pedyalite or any electrolyte, you have to load + water +salt. Monitor Blood pressure and Heart rate, They sell those finger oximeters in pharmacy and have HR (heart rate) in them. Have to hydrate until HR goes normal (for him)
2) My go to now is COQ10 I take it normally I take extra 400mg to get out of crash now. Please consult on this. Some people use others mitochondria supplements, so whatever he is on for Mito you can increase temporarly for a few days.

The hydration and load is CFS / OI doctor recommended and applies to basically everybody.

The mito cocktail: I am no doctor this is based on my personal experience.

 

[JoanDublin]

Have you ruled out mitochondrial disease? While this sounds a lot like PEM, it also seems quite mito-related. Of course ME does involve the mitochondria; but if he has clear mito disorder, you might have other treatment options? Sort of the same gray area as ME, but a bit more specific anyway.

The only tests he had here were ones that confirmed EBV almost two years ago and another that confirmed his thyroid was ok. He attends a general consultant as there isn't a paediatric specialist here in Ireland, at least not that I know of. The hospital have always concentrated on his bowel issue but don't make the links between the bowel problem and the onset of his 'post viral illness' which is what they call it. He was referred to a psychiatrist in the hospital for his fatigue symptoms and they wanted to put him on Prozac so I took him out of that setting.

He has developed severe nosebleeds and he has been referred to another specialist for that. He has developed tinnitus and hearing problems and he has another referral for that. He was also referred to a gastro specialist in another hospital for the bowels. No one is joining the pieces so I will have to do it.

What tests would he need to to check out mitrochondrial disease do you know?

 

[leela]

@JoanDublin, unfortunately it's another one of those things that's tough to clearly diagnose, and few do.
Here is a resource page:
http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934633

Another local-ish resource you might want to peruse if you haven't already:
http://www.drmyhill.co.uk/

 

[leela]

dr m explains some things:

 

[Gingergrrl]

@JoanDublin I am so sorry to hear about your son and PEM is still a concept that I am trying to adjust my life around. On a rare day that I have more energy, it is so hard not to overdo it b/c I want to get things done. I am in that situation now b/c I overdid it the last few days but I had to pack up my stuff to move back home and am trying to prepare 3-4 years of medical records for my trip up north to see an ME/CFS specialist. But today I have severe muscle pain as if my entire body has been hit by a truck! In 2006 I was in a huge car accident in which my car flipped upside down (I was totally healthy at the time otherwise) and I have worse muscle pain today than after the accident! So, I guess that is all part of PEM?