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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Post-exertional malaise or not?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by A.B., Jun 1, 2013.

  1. soxfan

    soxfan Senior Member

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    I have PEM but it is only brought on by mental exertion which can include working or socializing beyond my limits. When I work the PEM begins when I get in my car and start driving home. It will last until the next morning. I honestly have never had delayed PEM..mine has always been immediately after the activity but can last 24 hours or sometimes longer...and I feel horrible during that recovery time...
     
  2. Forbin

    Forbin Forbin

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    I think the term “acute flu-like symptoms” can be deceptive. People might see that and think it means upper-respiratory symptoms, like coughing, sneezing, congestion and high temperature. My understanding of PEM is that it is more akin to an acute sensation of immune system activation, as if you are fighting off a viral infection. It might produce headache, sore throat or body aches, but it’s mainly just an overwhelming sensation that you are weakened and exhausted because your body is fighting something off. This sensation is difficult to boil down to one word, so it’s been inadequately termed “malaise.”

    In 2009, Alan Light et al published an article in the Journal of Pain titled:

    “Moderate exercise increases expression for sensory, adrenergic and immune genes in
    chronic fatigue syndrome patients, but not in normal subjects”

    which showed that “increases [in gene expression] were also seen in the CFS subgroup with comorbid FMS and were highly correlated with symptoms of physical fatigue, mental fatigue and pain.”

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2757484/pdf/nihms125894.pdf

    Looking at the charts from the research, you can see that the increased expression of these sensory, adrenergic and immune genes begins within 30 minutes of exercise and then peaks around 24 hours later.

    [​IMG]
     
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  3. xchocoholic

    xchocoholic Senior Member

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    HI sox,

    I would consider this mental exhaustion not PEM. I get mental exhaustion too but recover if I rest a bit. Closing my eyes and laying down for even 20 minutes can usually eliminate this. I have to eat every 2 or 3 hours so that's a given too.

    Since realizing that I have constant Orthostatic Intolerance (OI) and that laying down helps, I can't remember the last time I was upright all day. If you have OI, have you tried laying down or at least putting your feet up throughout the day to see if that helps this symptom ?

    FWIW, I've been experimenting recently with taking DEX4, a glucose tablet. It's still bringing my brain back to life everytime I start to fade. KOW ... I need two tablets at a time. I have a thread here on neuroglycopenia that explains this.

    tc ... x
     
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  4. ukxmrv

    ukxmrv Senior Member

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    In the first 10+ years of ME (acute viral onset) exercise would bring back the sore throat, glands etc for me. As the days would go on the tonsillitis (pus in throat) would return and the high temperatures.

    As the decades went on the high temperatures stopped and the PEM changed as well. There would be 5 or so years of less viral symptoms and more exhaustion, pain, brainfog, low body temperature, fainting, sinus infections, spots before eyes, clumsiness, sleep cycle changes as an example. Then it would go back to viral, then change again.
     
  5. Allyson

    Allyson *****

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    Hi AB - great thread thanks

    I have just been wondering about the deifintion of this myself
    I wil post on it nest time iget PEM n order to be acurate and i am a bit foggy ATM
    but i note my PEM seems to start suddenly and often about 4-6 pm the day AFTER the exercise session.

    A related thread i started was on defining the different types of "Fatigue " - of which PEM is kind of one i guess but i did not extend it to cover PEM

    that thread is here for anyone interested or in giving feedback
    http://forums.phoenixrising.me/index.php?threads/fatigue-or-not-fatigue-that-is-the-question.23219/
     
  6. Allyson

    Allyson *****

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    Yes i always have to lie down in a craxh and find lying down a lot helps me stay well too.

    on that last bit - when i am badly crashed i driink lots of coconut water but if that still does not work - I drink half a can of the V brand enerygy drink - tastes vile and very sweet but it always works so i wonder if that is linked to the neuroglycopenia xchoc.

    Not sure igf the brand is international but it is carbonated with caffeine guarana and - i am guessing - LOTS of sugar.

    A
     
  7. Allyson

    Allyson *****

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    Intereting thanks tristen and i agre"malaise "does not cut it.

    And the symptoms of a crash and PEM seem to overlap
    i will look at mine soon

    One thing is for certain - i can predict PEM and cause it - so if i want to study it tomorrow (or the day after) i just need and exercise session tonight and it will always follow at some stage.

    I am wondering if the crash symtoms due to OI are the same or different to PEM and would be interested to see a study where someone stays recumbant (and well hydrated and cool) for 2 weeks, say, but does hard exercise like weights while recumbant- and then is the PEM the same as PEM resulting from upright exercise, say. Ie that might eliminate the OI crash symptoms (if they are separate) and just leave us with the muscle implications.

    There is an exercise physiologist at Victoria University in Australia doing exercise testing that includes people with ME/cfs but i do not have his details to hand.




    A
     
  8. Ember

    Ember Senior Member

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    “The hallmark symptom of Chronic Fatigue Syndrome is exercise intolerance. So studying it and understanding it and the consequences of post-exertional malaise is essential to understanding what's going on in the illness.”
     
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  9. Allyson

    Allyson *****

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    as a side note i take baking soda when i gt reflus and tht is really good for that - and before bed to stop reflux waking me up at night.

    I had read astudy that siad that lactic acid build-up was now thougth NOT to be the cause of muscle pain in normaol people after exercise but that it was due to multiple micro muscle tears - when they repair they build slightly bigger
    - which is why muscle bulks up after exercise.

    But since i read about it - maybe year ago - i have seen not further mention of it -wa s a report ona apbuication ina scientific journal form memory.




    Z
     
  10. Allyson

    Allyson *****

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    comments on the utube clip -
    Ow but stress test - that would hurt! Plus i can exercise with no problem - i could do 8 mins on a bike and i think my test would be fine - but the next day I would not even be able to DO the test (without lots of caffeine beforehand).

    Yes i did exercise then collapsed towards the start of my illness.
    I did a 1 km bike ride to the park to go for a run ; got off the bike and collapsed - not a faint - no loss of consiousness, like a muscle collapse - I hit the ground from standing.

    The reason grocery shopping puts the heart rate up though is due to static standing - POTS, not the anount ofe exercise. In a supermarket you are walking slowly and stopping frequentlynad then queuing at the end - i would trather ride a bike thatn stand in a queue any day. Slow walking is also not good for PWME for the same reason.

    Glad we are "intereeting science" now though at least. Thanks Ember.

    Ally
     
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  11. Allyson

    Allyson *****

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    I think it would aslo be interezting to study PEM after exercise and PEM after something like static standing - and comparing the two lots of resilts

    - but i would not want to be inthe static standig group - that is the think i dread most - would rather lift weght or ride a bike .



    A
     
  12. soxfan

    soxfan Senior Member

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    Hey Allyson- I wanted to mention the other symptoms I have after working etc...Of course I am extremely mentally tired...my insides feel like they are shaking....and that I also have adrenaline coursing through me. I do know that I have a huge problem that has anything to do with using my brain intensely for long periods of time which can also include shopping...driving distances...talking on the phone (which I try to avoid).
    I still had never had any answers from the doctors as to why this happens as in the early years of my illness this was not an issue.
    The mental exhaustion if really severe will become a physical exhaustion as well. Laying or resting does not relieve this but will make me feel better enough to be able to get dinner on the table. It does not relieve it at all and in fact sometimes makes me feel worse if I rest too long.
    I don't have OI as I have been tested or any of the other problems with that....I have no clue! I am down to working 1-2 days a week because how I feel afterwards is torture...
     
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  13. xchocoholic

    xchocoholic Senior Member

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    I remember reading somewhere ? that many PWCs have a heart condition. Was that Cheney ? I was dx with mitral valve prolapse (mvp) in 1992 at the Mayo Clinic but later around 2000, I was told that I have a left bundle branch block (lbbb). My EKG is always abnormal. Whether I had a LBBB instead of mvp in 1992 is unknown. My cardiologist said that LBBBs are commonly dx as mvps. I'm not allowed to do the normal stress test because my EKG goes nuts.

    This was only found because I was taken to the ER with severe chest pain. (From indigestion thankfully). But I was thoroughly evaluated when I was there.

    I'd forgotten about this when I wrote that I could exercise freely because I've completely adjusted to living within my limits. As long as I give my heart a chance to "normalize" I can do what I want. This means not riding a recumbent bike at a breakneck pace either. I can ride one slowly.

    My problem is totally physical tho not something related to "CFS". My heart can't keep up because it's out of sync to begin with.

    FWIW, I've found that I have a lot of real documentable physical problems that were missed because I was diagnosed CFS. What a waste ... tc ... x
     
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  14. xchocoholic

    xchocoholic Senior Member

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    Crashing isn't the same as having orthostatic intolerance all the time. Are you familiar with the tilt table test for orthostatic intolerance ? If not, I started a thread here called DIY PMTTT so you can do you own. Be sure to read the posts past my initial post tho because I can only intelligently :lol: describe my OH and POTS. NMH is discussed further down.

    Your drink has gurana which is actually a strong source of caffeine so there's no telling if you have neuroglycopenia. I'm reacting to the dextrose tablets totally different than I do to anything else. All I can say, is that these make my brain function again without any side effects. :D

    tc ... x
     
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  15. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Once I noticed that TLR4s are increased PWO, this study became fascinating.
     
  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    When I was an undergraduate, I learned from veterinary students on my dorm floor that the ATP cycle that provides energy to the muscles also provides energy to the brain. They said that a person who is studying diligently is using as much energy as a person who is power walking or jogging. Ultimately, energy is energy and when it is gone it is gone.
     
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  17. Allyson

    Allyson *****

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    Hi

    I have read alot about TTT an wil never have one as i don tno think they tell you anything useful and make you crash majorly
    MY OI was diagnosed by symptoms, history and correct blood prsessure measurements tht showed a drop of 20 mmHG when i stood up

    ( you need to rest firs quietly and calmy in a darkened room for 15 min - no talking
    thenk measure BP every 2 mins for 10 mins lying then satnd and measure same again standing with a chair back in frontt of you for support - els you panic and get more adrenilaine out

    so my machie alarmed twice before it gae a readigof a 20 mm systolic drop - then buy the next reading it had coreected up - th tiw how quicly our adrnaline repsonse kicks in.

    I have read tht if you dread standing in queues - as i do - you likely have OI and do not need a TTT to tell you this.
     
  18. Allyson

    Allyson *****

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    yes but you need blood suppy to get oxygen and other nutrients to the cells

    that is how energy is rpelenished

    yes the brain usses a lot of energy
    but if you are not getting enought BLOOD to the brain for whatever reason - as Dr Cheney explains - you have a primary problem with energy replenishment - likewise to the heart.
     
  19. Allyson

    Allyson *****

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    but i dont htinnk that is wht most peopl mean by PEM -
    PEM means malasie after physicala exercise

    so yours may be a crash bt it is not PEM and i think PEM includes sever muscle ahces - mine sure does
    if i stay up and work all day - sittingat a des k say which i cannot do i wil be ill and feel bad - crash

    but if i exercise get something differnt but with overlapping sympotms - i htnk this is what we need ot investigate more and provide a more specific descriptive terminilogy for
     
  20. soxfan

    soxfan Senior Member

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    Just like Little Bluestem said....the brain uses a lot of energy and apparently that is where my problem is. For some reason I can supply energy to my muscles but not to my brain or else my brain is using much more energy then normal in order to work....shop...drive...etc. I feel the worse when I work which I think is not just using my brain but also the fact that I have to socialize with customers....co workers etc. It just might be to much overall.

    I have no idea what it is if its not PEM because although I don't get muscle aches etc...I still need to recuperate in a dark quiet room for hours....I feel it is more then just mental exhaustion because my husband is a pharmacist and works 12 hour shifts and he definitely gets mentally exhausted but never feels like I do....whatever happens to me is not a normal response....as I need to get right home and horizontal.
     

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