The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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PEM/PENE differences

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Sundancer, Apr 24, 2018.

  1. Sundancer

    Sundancer Senior Member

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    Now that I'm doing somewhat better, it becomes more clear to me what sort of symptoms result from different forms of overexerting.

    2 weeks ago I had a notary here at my home ( pricey business...), I had asked beforehand for not wearing perfume/aftershave because I'm chemically sensitive and those smells make my brain shut down. The lady was understanding, said she knew of more people who suffered from that and promised to arrange it...well...not. the lady herself was clean, but the guy was smelly...so brain shut down. Plus besides the business of signing something I had questions of how to arrange things when I become incapable ( again) to attend to financial things and defending my right to stay at home and die quietly in my own bed. I had asked for time for this and had some questions on a piece of paper. The notary was unhelpful, looking at his watch and dismissive... so I was angry afterwards plus the smell...
    next day i went out with a friend to a shop to buy some plants. Thus we had planned beforehand, she drove the car, did the carrying and paying in the shop. So all I had to do was choose what i wanted. ( I've got nice flowers in my backyard now, I wanna repeat that :tulip::tulip::tulip::D

    The day after I got my typical PENE with sore throat and swollen glands ( it was not very bad though, I've had it much worse) took about the normal 6 to 7 days.

    Then some days later I physically overexerted, I lifted something much too heavy for me. Result was being unable to fall asleep ( I've struggled with falling asleep for years, since I take b12 that has returned to sort of normal) it was a real baddie, after two hours of laying awake I went back to livingroom and tea. and with an extra pill I went back to bed another two hours later. But no PENE

    Hmm...I think pure cognitive overexrtion does not lead to pene, it does lead to enormous fatigue
    conclusion: emotional ( angry) overexertion plus too much sensory input ( the aftershave-smell and the shopping) has lead to PENE.
    pure physical overexertion leads to not falling asleep.

    anybody recognizes this??

    during the last years the not falling asleep was the worst, the sore throat and swollen lymph have gradually got less worse until it became err well, not rare, but not often either. ( I'm very careful not to overload myself, I think the way to better life-quality leads through not overdoing) plus I'm real scared to get severe again
     
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  2. jpcv

    jpcv Senior Member

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    What´s PENE?
    Glad to know you´re doing better
     
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  3. Sundancer

    Sundancer Senior Member

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    PENE is another way to say PEM,
    means Post Exertional Neuro-immune Exhaustion.
    I prefer the term over PEM (Post Exertional Malaise) because it grasps better what happens to the body
     
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  4. ChrisD

    ChrisD Senior Member

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    I thought that PEM and PENE were the same thing, and that they were the differentiation from chronic fatigue or malaise which would just be a perpetual tiredness. PEM/PENE being a full on autoimmune type assault on the body in wake of exertion.
     
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  5. soxfan

    soxfan Senior Member

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    @Sundancer ..I only get PEM/PENE when I have over exerted mentally. Some examples are lunch with friends....shopping too long....socializing even for a short time...being with my granddaughter....anything where I have been mentally engaged . It can happen after only a short period of time or longer.

    The one thing I have found that helps me tremendously is taking a quarter Klonopin before the activity. I usually only take it when I am going to be socializing or with my granddaughter as those really do me in.

    I will still come home and crash into bed but my body doesn’t feel as bad and the next day I will still be extremely drained and exhausted. Klonopin will lessen it during the activity.

    I am able to physically exert with minor consequences but the mental overload is a real horror show for me and extremely uncomfortable. I try to keep my lunch dates to only 2 friends and quiet restaurants.

    I can no longer go to a movie theater or anyplace noisy...I feel like I will just die..and my brain explode.

    I also have problems falling asleep on the days when I have over taxed myself mentally...it make my body feel like it is over wired and adrenaline coursing through it trying to recover...
     
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  6. Sundancer

    Sundancer Senior Member

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    yes, that's right. The abbreviations point to the same thing. I prefer the term PENE because it says better what it is.
    not malaise (sigh.....) but immune-reaction, sore throat and swollen glands is immune-reaction, and malaise is not what it feels like. It feels like exhaustion.

    I'm still not clear about the difference between CFS and ME..we'll wait what the scientists find out the next ten years. there are all sorts of diagnostic criteria, but PENE is the hallmark of ME. I think that is sort of clear.
     
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  7. Sundancer

    Sundancer Senior Member

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    thanks @soxfan , so that is the same pattern as I seem to have ( I mean, I wonder whether I would have gotten PENE if I had lifted that heavy thing twice...but will not try it...:p)

    PENE after mental overload ( probably both the talking plus emotions + the sensory overload)

    Problems falling asleep after physical exertion. ( but also sleeping-problems with PENE)

    the adrenaline thing seems to have left me more or less...I mean, I was lying awake, but body was totally relaxed. hmm...probably the ton of relaxing supplements I take before bed overriding the stress-reaction.

    hmm, I don't do medicines, only supplements. Klonopin is a benzo eh...I could try what happens when I take a little bit of natural GABA next time I venture out.

    I hadn't been out of the house for something like 3 years.... and was so happy with it, wanna repeat that.


    I hope others chime in on what sort of setbacks they get after either physical exertion or mental/sensory overload.
    I find I'm intrigued.
     
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  8. ljimbo423

    ljimbo423 Senior Member

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    I was getting flu-like flares every 2-3 weeks a few months ago. The flu-like flares are not my usual PEM or PENE. My PEM always hits me 48 hours after I over do it and always lasts 24 hours.

    The flu-like flares would come on anywhere from the day of exertion to 4-5 days later and usually last 4-5 days. What I find really fascinating is that high dose coq10 has completely stopped my flu-like flares!! :thumbsup::)

    I went from getting them every 2-3 weeks, to none in the last 3 months taking 4-600 mg a day of coq10! So it seems that my dysfunctional mitochondria are causing my flu-like flares.

    I think the coq10, because it directly feeds oxidative phosphorylation and the creation of ATP in mitochondria, has stopped the flu-like flares.

    It seems like mitochondrial dysfunction has a big impact on the immune system, somehow, causing my flu-like flares.

    Jim
     
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  9. Wishful

    Wishful Senior Member

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    Maybe the two aren't the same. Physical exertion that causes muscle damage triggers my PEM 24 hrs later, and I would describe it as malaise. Cognitive exertion (such as socializing) triggers more of the mental lethargy and muscle aches, and it can start within a few hours of the exertion, and last for days. Also, for me cumin blocks the physically-induced PEM, but not the congnitive-induced symptoms. While the two effects have symptoms in common, I do consider them different. Giving them different names would be useful.

    @ljimbo423 I had a flu-like flare a week or two ago. I wondered if I'd contracted a virus, but I suppose it's just another ME thing.
     
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  10. ljimbo423

    ljimbo423 Senior Member

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    I had been getting flu-like flares for years and thought I was constantly catching colds or flus. Then I started to realize that reducing my intake of supplements that were killing off bacteria in my gut and causing higher levels of oxidative stress, would reduce my flu-like symptoms to 1-2 days instead of 4-5 days.

    It's then I realized they were me/cfs flares and not colds or flus. The high dose of coq10, I now take, completely stopping the flu-like flares, has just made it much clearer, that they are me/cfs flares and not colds or flus.

    Jim
     
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  11. hamsterman

    hamsterman Senior Member

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    I think using a journal helps a lot for these kinds of things. Certain things can be good PEM indicators. For me, its swollen Lymph Nodes, Severe forearm Achiness, fatigue... severe brainfog, and aversion to anything external. And yes, it does feel like a flu at times... but a flu with severe anxiety to stimulus.

    For me, PEM seems to be roughly the same amount of time, whether its from mental/social exertion or physical exertion. It usually lasts 2-3 days. My last several PEM's have all been mental/social triggered.... the last one was a combination of huge stress... and a small amount of physical exertion.

    A big issue for me, is I still get what others sometimes call.. 'Rolling PEM'. It's not really PEM, its more like brain-fog, fatigue, and headaches... and it has its peaks and valleys. But a lot of it seems to be related to sleep issues. And it's tricky... because it sometimes doesn't show up right after a bad night's sleep... sometimes it takes a couple days to show up.... its definitely cumulative. But now I can always distinguish it from PEM... since it doesnt effect my Lymph nodes, or cause muscle pain... it's mostly just severe headaches and brain-fog.
     
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  12. soxfan

    soxfan Senior Member

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    @Sundancer ...I don’t like taking Benzos at all...but if I didn’t take it at times when I know my brain is going to be taxed mentally I would suffer even more than I already do.

    Luckily I don’t need it when I am physically active as that doesn’t affect me ...I feel very lucky in that aspect. I have pretty bad sensory overload which causes me a lot of problems too...

    I wouldn’t call my PEM malaise but more of a brain exhaustion...my body itself doesn’t feel tired...just my head and I get terrible fatigue behind my eyes. Combining that with total unrefreshing sleep some days I am a mess.

    Does anyone else get extra teary during PEM/PENE? I find I have lots of crying spells during these times...maybe it’s because I feel so awful.
     
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  13. ljimbo423

    ljimbo423 Senior Member

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    I think this might be one reason the coq10 is helping me so much-

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4282817/#S2title

    I think the coq10 I'm taking is improving mitochondrial function, therefore slowing the viscous cycle mentioned above. By improving mito. function, the coq10 is slowing the production of pro-inflammatory cytokines, helping to break the cycle and stopping my flu-like symptoms.

    Jim
     
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  14. Wishful

    Wishful Senior Member

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    For me the aches are primarily in the front thigh muscles. My guess is that there's some spacial relationship between the neurons that say 'there's pain here' and some cells responding abnormally to ME. Maybe those cells are leaking something that affects the neurons, causing them to fire in the way that says 'pain'.
     
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  15. Dechi

    Dechi Senior Member

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    Read Dr Byron Hyde’s work (Nightingale foundation). if you want to know his view of it. To him, CFS is a non-diagnosis, it’s a melting pot of any disease not medically recognized or diagnosed. CFS is basically health care having stopped trying to diagnose what you have. Anyone having a CFS diagnosis must refute it until their illness is found, because there could be a cure for whatever illness is found.

    Whereas ME is a disease close to polyo, which affects the brain instead of the spinal cord. Contrary to polio, ME very rarely causes paralysis, but it causes neurological problems due to injury to the brain. Primary ME is caused by enteroviral infection. ME is not treatable.

    www.nightingale.ca
     
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  16. Sundancer

    Sundancer Senior Member

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    thanks all, this is mighty interesting, :hug::thumbsup:

    I'll respond later though.
    I've a visitor this midday and need some preemptive rest :rolleyes:
     
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  17. hamsterman

    hamsterman Senior Member

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    For those of you who are Harry Potter fans... for me, its a feeling like I'm under the spell of the Dementors. Pretty much every positive, or euphoric feeling is non-existent... and there is only suffering.

    I agree that PEM is more of mental torture in general. Sure, we have less energy... but that's the last thing from our mind when we are in a crash. Its basically an all-out assault on our mind... any external signals or stimulations to our brain cause pain, and sleep is the only release. The last PEM I had, I couldn't wait to sleep, and dream. I noticed that when I was dreaming... the PEM was gone... and the second I woke up... it was right there waiting for me.

    As far as Benzos... I have pretty much sworn off those... but I realize that there are some people who just cant sleep without them. But in general, they are terrible for continued use... and should be an absolute last resort.
     
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  18. soxfan

    soxfan Senior Member

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    @hamsterman ...I only use Klonopin to lessen the assault on my mind during social ...family...shopping . For me it helps with sensory overload tremendously. It doesn’t do anything to lessen PEM but it truly has helped me in many situations. I would never get through a holiday get together without it.

    Again I only take as needed and it’s a small amount 1/2 milligram...but it does the trick.
    I know they aren’t good but it gives me the ability to have some sort of social life at times when I can manage it. As long as my doctor will give me it...I will use as she understands the reasons why.
     
  19. Sancar

    Sancar Sick of being sick ~ and so is my walking buddy

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    Hi & hey ljimbo423~ What a great ‘key to find’ that high dose coq10 does that much to help your mito creation!
    ? What form/brand do you take or find helpful? I would appreciate knowing! :redface: I take Qunol 100mg for cardio benefits. I don’t see any ME relief? 4,600mg is a ‘Whopper’! No side effects I take it?

    Again so glad it is “working” for you! :thumbsup: Thanks~
     
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  20. hamsterman

    hamsterman Senior Member

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    For specific one-off situations.. then there is very little harm with benzos.... In fact... I can see how it can be used to effectively stop PEM if you take it right before a situation that could cause a severe 'fight or flight' response.

    What I meant was regular daily benzo use should be a last resort... especially for sleep. I think every possible alternative needs to be explored first. I've seen people with very severe ME... bedridden and isolated... but after years of dedication to trying different methods... eventually learn how to conquer their insomnia. I'm still trying to conquer it myself.
     
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