Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
This may make sense. Arms are not only smaller muscles than legs but easier to let become weak and untrained = easier to strainI don't suggest getting too excited about an arm use respiration link. For me, a couple of minutes of overhead work will trigger PEM, yet I can do hours of digging (strenuous muscle activity) without triggering PEM. Sawing wood by hand (strains some muscle groups different from the first two) takes more than a couple of minutes to be enough to trigger PEM. It seems to be how much you go past your strain limits for specific muscle groups. Often used muscles: hours. Seldom used muscles: minutes.
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:
Question:
- 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.
- What thing/s could be affecting glucose utilisation/absorption in this way?
Just on blood sugar levels...
I have been getting a lot of incremental improvements over the last year from suppplementing with whey. (The idea is to feed into the krebs cycle downstream of Fluge and Mella's hypothesised PDH blockage (although perhaps the improvements come from another mechanism, who knows!)). Anyway, by adding all this whey to my diet, I've put on about 7 kilos. Okay maybe 8. Fine, I've put on 10kg. I feel much better and almost never crash these days, but geez am I portly.
So I decided to cut out carbs and see if I could shed a bit of this fat. I was doing some fairly minor home renovations this week, drilling some bits of wood onto my deck, the sort of thing I can do sitting down. I was doing a similar thing before my new low-carb diet without any problems. But this time, I experienced a huge and very sharp crash. Went and spent 3 hours in bed in the middle of the day in an absolutely catatonic state. (I'm mild so this is a rare event for me.)
I'm now back on the carbs. I may be a touch rotund but at least I seem to be able to avoid PEM!
I don't suggest getting too excited about an arm use respiration link. For me, a couple of minutes of overhead work will trigger PEM, yet I can do hours of digging (strenuous muscle activity) without triggering PEM. Sawing wood by hand (strains some muscle groups different from the first two) takes more than a couple of minutes to be enough to trigger PEM. It seems to be how much you go past your strain limits for specific muscle groups. Often used muscles: hours. Seldom used muscles: minutes.
Oh and btw.
My cfs mate ex triathlete champ started ucan around 1.week ago.
Its early days but reckons its turbo charged his energy.
He and i both have tried same.protocols over years and its early days but its a big a.breakthrough as anything he tried.
Just got mine will update later.
My belief about why arm activities--or any other infrequently stressed muscle groups--triggers PEM with only a short duration of stress is that it damages muscle cells and thus triggers t-cells, releasing cytokines, which in turn triggers PEM. For a non-arm example, I could ride a bike 6 hrs, with hills and rough gravel roads, without triggering significant PEM, but climbing a ladder a couple of times, which strains the same muscle groups past the limit faced by cycling (and maybe strains some other muscle groups) triggered severe PEM. As I understand it, the latter activity would cause significantly more immune system activation than the hours of cycling. The symptoms caused by PEM seem the same as when triggered by a viral infection, so altogether that's why I think PEM--and other ME/CFS symptoms--are the result of immune system activation rather than ATP deficiency or other metabolic dysfunction. Metabolic dysfunction might play a role in the feedback loop that sustains the disorder, or it might be just a side effect. I expect that a breakthrough in understanding ME/CFS is more likely to come from studying the effect of cytokines than from studying metabolic effects.