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Energy Fluctuations

Discussion in 'General ME/CFS Discussion' started by AdamS, Apr 10, 2017.

  1. AdamS

    AdamS Senior Member

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    Something weird happened at the weekend...I noticed a marked fluctuation/improvement in energy. I've tried to document it below:

    Monday to Friday - I was in my usual M.E mode, zombified dream like state, mostly couch bound, initiating simple tasks a monumental effort, dragging myself out of the house for a short walk each day to feel like part of humanity...you get the idea haha!

    Friday afternoon/night - I decided that after 5 months, my clean 'Stoneage Diet' & supplements weren't working, I already ate healthily before I got ill anyway and was in the shape of my life. The discipline involved in eating so healthily for virtually zero improvement seemed pointless, so I did the unthinkable on Friday night and ordered a Chinese Takeaway.

    Saturday - I woke up feeling okay (well, okay for someone with M.E/POTS). Had a freezing cold shower and dragged myself round to a friend's house who was having a BBQ. For the first time in ages I could actually hold a conversation and had some of my personality back, I started off slow but by the end of the day was throwing a rugby ball about in the garden, eating burgers and even treated myself to my first beer in almost 5 months. I continued to feel okay so decided to go into town, I didn't drink but stayed out dancing/socialising til midnight...it was bloody fantastic.

    Sunday - I barely slept (mainly due to the excitement that i'd managed to survive a day/night out) but I still managed to go out for lunch with my parents the next day in town, we walked maybe 2-3 miles and I felt relatively okay. In fact after a short rest in the garden, I even managed to go for a dog walk with my friend in the evening, although it was a bit of a struggle towards the end (orthostatic headaches/fatigue etc started to set in a bit).

    Monday - Felt okay, maybe 60% normal, had a brain MRI with contrast at hospital that i'd had booked for a while, all good, left hospital feeling fine still. But then it all went downhill...I put tons of Garlic on my lunch and noticed that within about an hour, my stomach was causing me issues, I then felt that horrible whole body fatigue set in, my arms and legs started to go weak and my mental energy started to be sucked from me...back down to 40% ish.

    I don't really know what to make of this but I just wanted to share it with you all, (not to gloat because I know there are people in a much worse position than me) but to try and understand which variables (if any) influenced my short lived improvement. My guess is the following:

    Potential Improvement Variables:
    - Good weather (it was 22C all weekend)?
    - Cold Showers?
    - Reduction of supplements?
    - Addition of carbs?

    Potential Worsening Variables:
    - Garlic...my theory is that it boosts the immune system too much?
    - MRI/contrast...doubt it had an effect but could have done?
    - Overdoing it at the weekend finally caught up with me?

    Anyway...back to normality :cry: all thoughts good/bad welcome!
     
    Last edited: Apr 10, 2017
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  2. Cheesus

    Cheesus Senior Member

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    It could be the addition of carbs. Alternatively it might just be a normal fluctuation. This condition does tend to fluctuate quite dramatically in some people.

    As you are fairly recently diagnosed (?) I feel like you have reason to be cautiously optimistic given these signs. It might be that you are on a natural trajectory towards recovery and are not stuck in the holding pattern that most of us on this forum are stuck in. Try not to make any high risk decisions regarding your health and you might just coast your way back to health.
     
  3. AdamS

    AdamS Senior Member

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    @Cheesus Yeah, I found it odd that after everything i'd read about using diet/ketosis to bypass glycolysis issues, sugar actually seemed to help me a bit, could just be coincidence though. I just wish I had some sort of magical device that could track fluctuations in metabolites/cytokines etc in my body when these good periods happen haha!

    Yes I am recently diagnosed, i've been unable to work at all for the past 4 months, but looking back was probably on a steady decline for a while before an acute onset in November 2016.
     
  4. jpcv

    jpcv Senior Member

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    SE coast, Brazil
    :beer::beer::beer:
     
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  5. Mohawk1995

    Mohawk1995 Senior Member

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    Here are my thoughts. The good news to me is that you even had this period of time. Maybe it can be replicated. Not sure, but at least you have the capacity for it. Whether or not it could be sustained is another question.

    Potential Improvement Variables:
    - Good weather (it was 22C all weekend)? Yes I believe this and sunshine can impact it.
    - Cold Showers? Maybe, but unlikely
    - Reduction of supplements? May depend on how many. I think most people take too many. In addition, most people don't give them a chance before adding others.
    - Addition of carbs? Definitely could be. Our son was terrible on a low carb diet. Much better when he could eat pretty much what he wanted. We did manage to keep him from completely eating junk food all of the time.

    Potential Worsening Variables:
    - Garlic...my theory is that it boosts the immune system too much? Too much of anything can be bad
    - MRI/contrast...doubt it had an effect but could have done? Unlikely, but depends on your sensitivity
    - Overdoing it at the weekend finally caught up with me? Definitely, but completely understandable.
     
  6. Jenny

    Jenny Senior Member

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    I've often wondered if any researcher has attempted to track these kinds of fluctuations. For me they have always been dramatic. I can be bedridden for months, unable to walk more than a few steps, and in a huge amount of pain, and then suddenly I'm better and within a few days feel 90% well, have no pain and can walk miles. This has been going on for 35 years and doesn't to be linked to any kind of diet or treatment.
     
  7. AdamS

    AdamS Senior Member

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    This is probably what struck me the most. Even if it was only a glimmer, that there was definitely a capacity for recovery. I believe that this capacity may be within all of us, it reminds me of the stories I hear about Rituximab treatment where all of a sudden responders 'feel like doing some housework' etc. I've felt this myself, not quite to the same degree but i've definitely felt the all consuming M.E fatigue lift a bit if that makes sense?
     
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  8. AdamS

    AdamS Senior Member

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    Very interesting, how long do these 90% spells last? Are there any factors that you could attribute to them?

    I know that Ron Davis is doing some great work and is analysing a patient who has recovered. As for measuring fluctuations I guess it would be quite difficult with this disease as it doesn't relapse/remit in a clear cut way for most of us. I'd happily let the team at Stanford analyse me though.

    There's a great story about a sufferer of Castleman Disease who took weekly blood samples and analysed the fluctuations in his illness himself, he eventually cured himself by inhibiting the mTOR pathway I believe: https://www.nytimes.com/2017/02/04/business/his-doctors-were-stumped-then-he-took-over.html
     
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  9. Jenny

    Jenny Senior Member

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    In the 1990s I had years of being 90% well, but now I seem to be in a pattern of 2-3 months of relative health then 3-8 weeks of relapse. (This is better than how I was a few years ago though when a relapse would last 9 months, and this improvement has coincided with treatment with Chinese herbs.)

    I've no idea what causes the relapses, and after all these years I've never been able to pinpoint anything that gets me out of a relapse, EXCEPT going to a hot, dry climate for a while. I've lost count of the number of times that I've thought I'd have to cancel a holiday in the sun because I've been so ill and then within hours of getting off the plane have recovered.

    Interesting story about the man with Castleman Disease. I would happily take regular blood samples if someone would analyse them!
     
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  10. gregh286

    gregh286 Senior Member

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    Yes sounds all very familiar.
    First of all the sugar from Chinese most likely boosted your mtorc via insulin release....probably ate rice with it. This mtorc improvement carried you thru Fri night as you likely ate later so you were producing insulin later than normal. Saturday morning wake up not as heavy as normal.
    Hence it's better to eat high carbs late with CFS. Found this out a few years back.
    You then sustained this with beer and burgers.
    In addition sugar and alcohol suppress immune system...so it carried over a day or 2. When alco and sugar stops body resume normal autoimmune function of pdh pathway breakdown....that what hit you Monday.

    I have this pattern very regularly.
    The lack of sleep helped also as immunity seems to kick in around 4 or 5am
    I've had my best days without sleep. Tired but not CFS'd.
    In actual fact I can sustain a normal ish state by using sugar and alcohol to dampen immune state by using daily.....simple.carbs often.
    Lots of threads on better with alcohol.
    Don't overdo it.....it causes an over agressive immune response and tip you the other way.
    Stone age diet a complete crock IMHO.
     
    Last edited: Apr 11, 2017
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  11. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    I agree with everything here...it's probably carbs and alcohol combined with delayed PEM. Alcohol is a double edged sword since it depletes your b12 and isn't sustainable. I did ketogenic diet for a while but moved to moderate carbs (100-150g) weighting them towards the end of the day. Also agree Stone Age diet is BS. I don't think garlic is anything to do with it.

    Another thing I've noticed is if I have a virus I normally have a bonus day shortly after I'm fully recovered from it similar how you describe ....Similar to endorphin rush so immune system probably involved somewhere.

    It's a rollercoaster ride....enjoy it while it lasts, try not to overdo it when it happens and be prepared for the return
     
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  12. AdamS

    AdamS Senior Member

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    I have an update on yesterday. The horrible ME fatigue/PEM feeling persisted from lunch until about 9pm, I could barely focus on the TV or my laptop. I'd taken a Midodrine 2.5mg at about 6pm but it didn't seem to help, so I ate a banana/some chocolate at around 8pm and slowly but surely my concentration came back and I started to feel a bit better. Today I woke up feeling okay and have been hovering at about 50-60% of normal ever since. No idea how long it will last but interesting nonetheless considering that my usual level is about 40%.
     
    Last edited: Apr 11, 2017
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  13. jpcv

    jpcv Senior Member

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    SE coast, Brazil
    Some people say that a low sugar/ carbo is better
    on the other hand, many advocate the use of ribose, a sugar
    so, no one really knows what´s really going on with our disease.
    if you feel good with carbs, eat them !
    Also, a beer or two always help, life is hard enough with our disease.
    :beer::beer:
     
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  14. gregh286

    gregh286 Senior Member

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    My theory on cfs is that cell danger response closes up arterioles.
    That's why air hunger etc. Almost similar to an asthmatic. Lung arterioles tighten up.
    When it happens in our circulatory system....cells go anaerobic cos no glucose or o2 is reaching them. Lactate builds and PEM ensues.

    When you start banging in carbs the insulin release creates a vasodilation effect and hence body functions resume as cell receive o2 and glucose.

    Arginine another massive vasodilator.....huge success with fluge and mella. Myself included.

    If you want to test my theory eat bananas and rice all day long. You'll see improvement.

    Avoid processed sugars as they turn on cell danger response and will nullify any gains.

    Currently I can manage my cfs very well with sugars....carbs....arginine and Glutamine. But cell danger response still exist. I have started to use vitamin d to try and turn down this autoimmune process. Currently sit around 70-80% on these protocols. 40% before maybe. I just need a final nail now.
     
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  15. AdamS

    AdamS Senior Member

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    Thanks for your insight @gregh286 yeah carbs certainly do seem to help me a bit and have brought me out of the abyss these past few days. It's great to hear that you're managing so well. I also take Vitamin D but haven't tried l-arginine or citrulline as I was worried they might make my POTS symptoms worse.
     
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  16. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    http://www.sciencedirect.com/science/article/pii/S1567724913002390
     
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