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Observations & questions after a relapse

Discussion in 'General ME/CFS Discussion' started by AdamS, Sep 30, 2017.

  1. AdamS

    AdamS Senior Member

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    Okay so I had a bit of a relapse, PEM, symptom exacerbation, you get the story...

    My last big relapse happened in maybe March/April this year, since then i've had a tons of bad-ish days but pacing has allowed me to avoid any major crashes and do quite a lot considering.

    Anyway...I threw caution to the wind and went on a family holiday abroad last week, I had to be up at 2:30am to travel via car to an airport 90 mins away and get a flight at 6:30am ish. The journey was pretty hellish but aside from being absolutely exhausted on the first day, astonishingly, I recovered well and averaged 2-3 miles of walking per day. I climbed quite a lot of steps, went out on a boat, paddle boarded for 30 mins (with rests), did some light swimming most days (maybe 150-200m max) and stayed up socialising until around midnight each night. I had to make tons of accommodations to do this...lying down a lot, resting a lot, loading up on carbs, fruits, water etc every few hours.

    On the final day I made a fatal error...I'd been out on a pedalo boat with some of my family in the morning just after breakfast, we were on the boat for around 60 mins, I did some light swimming. After we got off the boat I saw an amazing snorkelling spot and decided to go for another swim...BAM big mistake, despite resting a bit between each swim, I noticed that my brain started to slowly fade into mush, I was becoming lethargic and my breathing was more laboured...I woke up with PEM, exhausted, pain in legs etc and the journey home was a bit of a nightmare to say the least. Fortunately my family helped me pretty much everything on the way back otherwise i'd have been considerably worse.

    Below are a few observations i've made about the relapse when compared to my other relapses:
    • In all of my relapses I was doing something physical e.g exercise, it also usually involved using my arms.
    • Some of the relapses seem to correspond to overdoing it when it feels like my blood sugar/glucose supply is low or depleted.
    • According to Wiki, the brain is dependent on a continual supply of glucose diffusing from the blood into the interstitial tissue within the central nervous system and into the neurons themselves. This could explain why my brain seems to always be the first thing that turns to mush when i'm approaching my limit/relapse threshold. Taking in glucose more regularly e.g every hour (via lucazade sport, fruit or carbs) in combination with pacing seems to help me avoid these dips and maintain a slightly better baseline.
    • According to a study that Maureen Hanson talked about in her OMF Syposium presentation, plasma glucose is lower in ME/CFS patients, and endurance athletes with higher plasma glucose usually recover better.
    Question:
    • What thing/s could be affecting glucose utilisation/absorption in this way?
     
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  2. A.B.

    A.B. Senior Member

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    About the sugar thing. We don't know but it seems to be a real thing. Our researchers are starting to take an interest in this so hopefully we will figure out what the problem is.
     
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  3. Dechi

    Dechi Senior Member

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    You’ve done so much ! Do you considerer yourself in remission (before this crash at least) ?
     
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  4. Joh

    Joh Inactivist

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    Don't know if that is helpful, but Fluge and Mella have talked about how we can't turn sugar into energy, e.g. here:
     
  5. ljimbo423

    ljimbo423 Senior Member

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    Hi Adam- Maybe the cell danger response kicking in?
     
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  6. jpcv

    jpcv Senior Member

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    SE coast, Brazil
    exercises with my upper body = PEM
    And I was a very good swimmer /surfer...:cry:
     
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  7. AdamS

    AdamS Senior Member

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    Thanks! I agree, i’m very happy with some of the things I’ve been able to do recently. I definitely wouldn’t class it as a remission though, the stuff i’ve described in the opening post is still way off my pre-illness activity levels sadly :(

    I would say that a warmer climate seemed to help me a bit, also the principle of breaking activity into chunks and doing say 2-3 miles walking over the course of the day with rests in between rather than in one go seems to help me do quite a lot more without crashing. A lot of sitting/laying down etc to recover between stuff!
     
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  8. AdamS

    AdamS Senior Member

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    Super helpful thanks!!
     
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  9. arewenearlythereyet

    arewenearlythereyet CURRENTLY MODERATED FOR NOT BEING SERVILE

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    I've noticed a couple of things. When I use my upper body for lifting and carrying, this can cause PEM, whereas light walking, or activities split up with a lot of rest breaks can mean I can do a lot more before getting PEM.

    I've also noticed that there seems to be a cumulative effect over time, where even when I've been good and kept my activities within the low heart rate zones, if the totals for 3 days amount to more than 8 hrs of light activity this can cause PEM or at least a slow day with lots of fog. I guess energy envelope and ATP supply and demand explains the latter but I'm not sure if something else is going on with the former? This could be linked to something localised to particular muscle groups. I'm unsure why this would affect my upper body more than lower?
     
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  10. Skippa

    Skippa Anti-BS

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    The upper body thing... gets me quickly too... instead of looking at the arms etc, I think maybe it's the back/spine... overload my spine and I get a prickly heat that can develop into PEM if I don't do something to avert pronto...

    Eg, all upper body work is supported by the spine, that is the common focal point/bottleneck whatever...
     
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  11. jpcv

    jpcv Senior Member

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    SE coast, Brazil
    Yes, maybe you are right, I have noticed that activities like loading and unloading stuff form my car can cause me pain /PEM, even light stuff
    Also, some yoga positions that overload my spine cause me the same.
    I wll try to do some strength training exercises for my biceps/triceps, seated, to see wath happens.
     
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  12. bertiedog

    bertiedog Senior Member

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    Cortisol helps to regulate glucose levels, without the correct level of it you cannot control your glucose levels well. Mine used to be always too low as per my meter but now I have to take a steroid this doesn't happen.

    Pam
     
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  13. AdamS

    AdamS Senior Member

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    Has this treatment also improved your ME/CFS symptoms?

    Someone in my family has Addisons/Hypocortisolism and i’ve often wondered whether I should get tested myself.
     
  14. bertiedog

    bertiedog Senior Member

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    Yes no question. I can do so much more & recover quickly when I have overdone it. Usually it takes 3 days from a complete collapse which only rarely rarely happens these days. When I started on the treatment in 2003 the private Endo said I couldn't produce the cortisol that was needed in order to lead any sort of life. What happened with me was the adrenals were well overproducing Dhea instead at all points in the day. I had a 24 hour saliva cortisol/dhea test done which showed this pattern.

    We did a retest 6 months after treatment & DHEA had dropped back to normal & I felt I had a life again. BTW I also had darkening of the skin and loss of body hair which are typical of Addisons. However I was still producing some cortisol & still do but isn't sufficient to live especially now.

    BTW. I forgot to mention that the thyroid is important too in blood sugar control & if one has under functioning adrenals then the thyroid cannot function properly either. Turned out I had Hashimotos too which is an autoimmune condition & have needed tiny bit of thyroxine plus 2 grains of dedicated thyroid Medication ever since 2003.

    All this treatment was private. The NHS wouldn't have treated me for either because my levels weren't low enough. They would have waited until my adrenals met the almost non-extstent level of cortisol & called it Addisons but by then it would be life threatening & my life would have been so diminished I don't think I would have wanted to carry on living. I will never understand this position as it makes no sense to me.

    Pam
     
    Last edited: Oct 2, 2017
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  15. Wishful

    Wishful Senior Member

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    My assumption about the upper-body/PEM link is that it's due to the upper body muscles being used less frequently than the leg muscles (at least for me), which means that when I do use my arms, it means more muscle cells damaged and thus more t-cell activation. The effect is greater for muscle groups that I use less frequently. I can shovel soil the normal way for hours without triggering PEM, but when I use the shovel in a non-standard way, such as jabbing it forwards to slice off soil, it only takes a few minutes of that to trigger PEM later. Cleaning windows with my arms above my head also triggers PEM, even if it's only a few minutes of activity, but that's enough to make those seldom-used muscle groups feel strained.
     
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