International ME/CFS and FM Awareness Day Is On May 12, 2018
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A few observations about my experience with ME/POTS

Discussion in 'General ME/CFS Discussion' started by AdamS, Jul 10, 2018.

  1. AdamS

    AdamS Senior Member

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    After an interesting year of ups and downs i've made a short list of observations about my experience with ME/POTS:

    These are the things i’ve noticed:
    • While I haven't had PEM from overexertion in a long time. The dreaded bed-bound, brain fogged episodes seem to be related to the gut in my case. I've been able to trigger a PEM like state by drinking certain types of alcohol, taking 3-4 probiotics at a time or even just eating certain dairy products. In fact, i've felt so ill from my gut that i've literally felt like I was being poisoned and started throwing up.
    • Winter reduces my functioning massively, I believe this is due to the cold, which makes the body use more energy to regulate temperature. I found that in winter I could barely walk more than about 300-400 yards without almost crashing, if I slow down the walking I can do a bit better, but the main thing I found that increases my walking capability about 3-4 fold is layering up with base layers, gloves, a full face balaclava and ski socks...sounds crazy but I was able to walk around 1-2km in winter part way round a reservoir by keeping my body warm.
    • Summer is a different story, since June this year i've managed to go on two trips abroad in Europe (flight times 3-4 hours). I didn't crash and paced well, sitting down in airports etc at every opportunity. My only real limitations were walking too far and swimming, if I swim or use my arms at all I usually have a POTS crash and need to be horizontal. on my first trip I averaged 8000 steps per day and the second trip the average was 5000 steps per day. The key here was not walking too far in one go, but doing everything in bursts of activity followed by long periods of rest.
    • Hay fever seems to cause me all sorts of problems in summer, it makes me fatigued and brain fogged, my guess is that histamine causes this...i've been taking half a 10mg cetirizine hydrochloride tablet daily which seems to help quite a lot and get me feeling pretty normal again.
    • Green tea seems to help a bit with my gut and with energy.
    • Pacing with a heart rate monitor isn't as reliable as listening to your body.
    • Pre-emptive rest such as lying down before you have to do a bit of walking etc seems to work wonders, the same applies to lying down/sitting after any walking or short bursts of physical activity, this seems to help me avoid crashing and seem almost normal to my friends/family most of the time which is great. I think this works because we have an issue with oxygen utilisation/uptake in the muscles (just a theory of course).
    • Quitting my job was hard but if i'd have carried on working i'd have been bed-bound by now.
    • POTS seems to cause me the most issues day-to-day, i've found that keeping my elbows tucked in to my waist when using my arms helps a lot.
    • Sleeping well definitely helps everything, from fatigue to joint pain. It isn't a cure but it seems to be better than any supplement i've ever tried. Edit: However if my stomach is bad...I still wake up fatigued/malaised no matter how well I sleep.
    • I haven't trained at the gym now for over a year and only do stretches if I go purely for my mind. Avoiding the gym has only improved my health.

    One final point i'd like to make is that I believe we're a heterogeneous population. My version of ME seems to be different than quite a few people's on here, POTS limits me most day-to-day and while i've been bedbound for months at a time, following the advice on this forum i've managed to get back from maybe 30-40% functioning to about 60% at times which is pretty cool. I just wanted to write these observations incase they help someone.
     
    Last edited: Jul 11, 2018
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  2. Runner5

    Runner5 Senior Member

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    PNW
    I'm glad your functioning is up! Keep fighting the good fight!
     
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  3. AdamS

    AdamS Senior Member

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    Thank you!!
     
  4. CreativeB

    CreativeB Senior Member

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    Scotland
    Thanks for sharing your observations @AdamS. It's interesting to read your experiences. I'm still learning so much about my own situation. I hope that with time I'll have more insight
     
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  5. AdamS

    AdamS Senior Member

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    No problem, thanks for your comment. I’m confident that you will gain more insight about your own situation in time. It has taken me around 18 months of trial and error but i’m slowly getting more in tune with my body/symptoms.

    Sometimes with this illness though, things can take you completely by surprise, it is pretty brutal but I just try my best to weather each storm and rest well when I feel weak or have flare ups until things start to ease. Good luck, I hope you start to find what works for you soon.
     
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  6. Murph

    Murph :)

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    Hi Adam!.

    Some of this rings very familiar to me. This one in particular is such a weird little quirk that I have to point out that I find this too:

    >i've found that keeping my elbows tucked in to my waist when using my arms helps a lot

    I've been dwelling on this and I suspect the issue is that my shoulder muscles were so weak that using them draws down their energy levels really fast, and the muscles or mitochondria send messages of complete exhaustion. I looked at a photo of myself taken not long ago and the muscle catabolism on the shoulders was really profound. I have retained much stronger muscles in the legs etc.

    I've recently gone from mild/moderate to very mild/almost feeling like an impostor around here. I rarely get PEM from exercise these days, or if I do, it is both mild and brief. Over the last 18months I've taken up some gentle sports and I can now normally play them without payback. But I am still very vulnerable to eating the wrong foods. Like you, dairy is my achilles heel. I eat a lot of dark chocholate and need to be very careful to read the label to make sure they haven't snuck any milk solids in, or I will feel rubbish for 36 hours after eating it.

    This observation makes me ask if ME/CFS might be a metabolic/immune problem that triggers a parallel but self-sustaining gut problem. I didn't have gut issues at the start of my illness, but now it seems to be most of what I have. At the peak, I had a lot of both and that was when things were bleakest.

    For me, a turning point was when I started eating a lot of Whey everyday. But that doesn't seem to be sufficient. Regular iron supplementation and megadosing Vitamin D, (plus a range of other tablets I take but am less confident in) also seem to be very helpful in forcing my metabolism to act normal.
     
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  7. AdamS

    AdamS Senior Member

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    Hi @Murph thanks for the comment, very interesting to read your thoughts and own observations!

    Cool insight about messaging the muscles/mitos. What i’ve found since my first ever crash is that using my arms to lift or push something above my heart seems to cause me very severe problems, very quickly. I'm not sure if it's something to do with the heart itself, the muscles or the autonomic nervous system, I seem to have the strength to lift stuff still but if I do I end up crashing rapidly into a dizzy, brain fogged, weak legged state and am barely able to move for weeks. Perhaps it's simply that using the arms puts more demand on the heart than using the legs (because the arms are above the heart so it has to pump a bit harder against gravity whereas the legs are below) and can trigger PEM/crashes at a seemingly lower threshold?

    Very interesting re the foods, i'm the same, i've often wondered if a food intolerance test would be useful in my case, I can definitely relate to what you're saying about feeling like an imposter sometimes when the symptoms are milder and I feel almost normal. That's amazing news that you are able to do gentle sports, I can do a few kick ups with a football with friends if I rest between but that's about it, I hope to be able to do a bit more in future!

    This sounds like an amazing theory and definitely echoes my experience.
     
    Last edited: Jul 13, 2018
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