I'm going on a mission! wish me luck

[herpesbaby]

@notmyself where are you from and how long you've been sick?

 

[ljimbo423]

Hello @notmyself -

I recommend that you really, really baby yourself for a few days to recover from the run. The run is done now and it can't be undone. Hopefully you will learn what you need to know from it and move forward with that information.

I went on a 13 mile hike one day in the middle of summer and only suffered a couple of days of PEM from it. I don't recommend doing things like that, but it didn't do me any harm.

I wish you all the best in moving forward and becoming healthier.

Jim

 

[herpesbaby]

I'm sorry but whats the difference between PEM and being super sore after crazy workout?

 

[notmyself]

Hello @notmyself -

I recommend that you really, really baby yourself for a few days to recover from the run. The run is done now and it can't be undone. Hopefully you will learn what you need to know from it and move forward with that information.

I went on a 13 mile hike one day in the middle of summer and only suffered a couple of days of PEM from it. I don't recommend doing things like that, but it didn't do me any harm.

I wish you all the best in moving forward and becoming healthier.

Jim

hi,that's nice to hear..i assume you are a mild case aswell

 

[notmyself]

@notmyself where are you from and how long you've been sick?

hi,Romania ..around 9 months

 

[Cheesus]

I'm sorry but whats the difference between PEM and being super sore after crazy workout?

Being super sore is a healthy response. It is just what happens when you have lactic acid buildup and your muscles are repairing damage. It is a good feeling.

PEM is like dying then being put in a microwave to be reheated.

 

[notmyself]

I'm sorry but whats the difference between PEM

probably pem is feeling like dying..while a crazy workout is not..i never have a major pem, so i don t know exactly hot it feels...but i should get one after today..

 

[ljimbo423]

hi,that's nice to hear..i assume you are a mild case aswell

I was mild to moderate at the time I did that hike, just a little bit healthier than I am now. You are clearly in better physical shape than I was!

Jim

 

[IThinkImTurningJapanese]

i never have a major pem, so i don t know exactly hot it feels...but i should get one after today..

Sleep.

 

[notmyself]

I was mild to moderate at the time I did that hike, just a little bit healthier than I am now. You are clearly in better physical shape than I was!

Jim

I hope you return to better health.During that time do you think you would been able to hold a job?

 

[notmyself]

Sleep.

i would love to but heart beat way to fast to be able to fall asleep..

 

[ljimbo423]

I hope you return to better health.During that time do you think you would been able to hold a job?

Thanks, I'm working on getting healthier and making slow but steady progress. After all, it was the tortoise that won the race not the hare.

I couldn't hold more than a part time job, only working 30 minutes a night.

Jim

 

[Valentijn]

I'm sorry but whats the difference between PEM and being super sore after crazy workout?

After exercise there's Delayed-Onset Muscle Soreness (DOMS). It hits about the same time as PEM, but it will only affect the muscles which were over-used, and muscle soreness will pretty much be the only thing happening. Additionally, muscle soreness from DOMS will only occur when those muscles are being used again, and not at rest.

PEM often features pain, but it will be body-wide, affecting parts of the body which were not used and even when at rest. Cognitive dysfunction is pretty common as well, and maybe ataxia, orthostatic intolerance, muscle twitches, painful lymph nodes, and sensitivity to light and sound. Heart rate will often be raised, or will easily rise during PEM and be difficult to get it to go down again.

My experience is that DOMS is a "good" pain ... it feels nice and stretchy. PEM just sucks all around, like a nasty flu.

 

[JaimeS]

If i can run 20 km( ridicoulous psychotic hope) especially today on what seems to be pem for me, i will consider myself just insane

Nonononono!

but probably she is in a better situation than me

What on earth makes you say so?

Hang out on the boards and read about other people's experiences a little more. We all feel a little sorry for ourselves, sometimes: it's totally natural when you're suffering! But don't automatically compare others' health favorably to your own. I can guarantee you you're not the sickest person here, or even close, if you managed to run as long as you did. I certainly couldn't have.

The fact that you're surprised about how bad PEM can get shows me that you have not yet experienced the really bad side to this disease.

I'm sorry but whats the difference between PEM and being super sore after crazy workout?

Whoooa. A lot.

Post-exertional malaise.

Worsening symptoms include chronic fatigue, flu-like symptoms, brain fog (cognitive dysfunction), unrefreshing sleep, chronic pain, orthostatic intolerance, neurally mediated hypotension, POTS and more.

This is not muscle aches.

PEM is like dying then being put in a microwave to be reheated.

Vivid. Accurate.

Also read here: Does anyone else feel like PEM = dying?

@notmyself -- accurate to say this was self-harm: not helping yourself, not helping you prove anything, given that running a 20-k is hard for a healthy human. Please be more careful with yourself, hang out around the support forums to see how other people are coping with this incredibly difficult illness. It sounds like you have not found coping mechanisms that benefit you, yet.

Rather than seeing how sick you can make yourself, invert it and see if you can find out what helps and makes you feel better. Please put your focus there.

 

[notmyself]

Hang out on the boards and read about other people's experiences a little more. We all feel a little sorry for ourselves, sometimes: it's totally natural when you're suffering! But don't automatically compare others' health favorably to your own. I can guarantee you you're not the sickest person here, or even close, if you managed to run as long as you did. I certainly couldn't have.

The fact that you're surprised about how bad PEM can get shows me that you have not yet experienced the really bad side to this disease.

i never say i am the sickest, i know others are much worse..After a few days i will not exactly where i stand..
if i don't get very sick after this exortion,i am probably able to work a easy job si i will start to do something about it..or maybe a miracle happen and i will not feel anything except the sore muscle..doubt that tho'

 

[Snowdrop]

I'm sorry but whats the difference between PEM and being super sore after crazy workout?

PEM isn't about being sore like after a hard workout. Far from it. See here: http://me-pedia.org/wiki/Post-exertional_malaise

 

[Wonko]

You should also be aware PEM is unpredictable, sometimes it doesn't occur after "extreme" provocation (such as when I moved 13 years ago, the next week I was fine, in fact a little better than normal), sometimes it hits when you've only slightly exceeded your capabilities, and sometimes it hits hard for no obvious reason.

Sometimes it just hits and stops me in my tracks, having a good day so decide to do something minor, did the first part of it, felt fine, planning to carry on, and then I don't, I can't organise myself to move for several hours, PEM can shut down your brain, it's not just feeling like crap and being in pain.

 

[notmyself]

You should also be aware PEM is unpredictable, sometimes it doesn't occur after "extreme" provocation (such as when I moved 13 years ago, the next week I was fine, in fact a little better than normal), sometimes it hits when you've only slightly exceeded your capabilities, and sometimes it hits hard for no obvious reason.

Sometimes it just hits and stops me in my tracks, having a good day so decide to do something minor, did the first part of it, felt fine, planning to carry on, and then I don't, I can't organise myself to move for several hours, PEM can shut down your brain, it's not just feeling like crap and being in pain.

sorry..but i trully belive extreme provocation will cause pem..even the definition stays that..

 

[Wonko]

sorry..but i trully belive extreme provocation will cause pem..even the definition stays that..

Believe me, I am aware of what the definitions say. All I can say is everything I do, well more or less everything, I do in the knowledge that I will have to pay for it, and I plan accordingly. But every now and then it seems that there is no cost, it's very rare, the last time when there was no doubt I should have been flattened for at least several days, possibly longer, was when I moved, afterwards instead of being PEM'd I was actually not just more capable than I expected, I was more capable in the couple of days after than I had been in the couple of days before.

You should note that this doesn't mean I was suddenly well, able to live like someone without M.E., my baseline is fairly low, but I was less "sick" than I had been, for a few days, and then normality returned and I was not.

How this relates to you is unknown ATM, the danger with PEM isn't that you have to pay a price, it's never knowing how severe that price is going to be, or how long it's going to last for, so pushing yourself unreasonably for no gain is always a bad idea - and the more you go above your "safe" limits, the more likely it is you will knock something far enough out of whack it can't rebalance.

 

[KME]

@notmyself, I see this is not the first time that you have tested yourself with intensive exercise. You described doing the same here: http://forums.phoenixrising.me/index.php?threads/final-conclusions.50037/ Your conclusion at that time was that you do not have CFS.


Then you posted another thread describing your improvements, including extensive intensive exercise: http://forums.phoenixrising.me/index.php?threads/back-after-few-months.53066/


I understand that it is very difficult when you are unwell and you don’t know exactly what’s happening, who to trust or what to believe. But please bear in mind that this is a community of people with ME/CFS who are, generally, made very sick by exercise at much lower levels than you describe, and who have lost too many to suicide. So when you post about a “suicide mission” by “exercise”, a lot of people get very concerned about you. Since you have done intensive exercise, including at least one 5k and one 10k race in the past three months, as per your post here http://forums.phoenixrising.me/index.php?threads/back-after-few-months.53066/, characterising your experiment today as a suicide mission was dramatic.


People on here are very understanding when people are not sure if they have ME/CFS or not, and I see from this thread that you’ve had some good advice already about how to distinguish between anxiety and ME/CFS http://forums.phoenixrising.me/inde...hem-its-not-all-in-my-head.49984/#post-824558 People with ME/CFS are also very keen to help others not make the mistakes they made or that they’ve seen others make with exercise.


If there is any chance that you have ME/CFS, it is extremely unwise to keep conducting these dramatic experiments. The risk is far too high. I think it would be helpful to flag very clearly that you do not know whether you have ME/CFS or not at the beginning of a post like this. I hope your health improves.