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Dealing with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome?
Related: Chronic Fatigue Syndrome, Eastern Sierra, Epstein Barr virus, exposure, health, Mt Conness area, peak bagging, SARS-CoV-2 aka COVID-19 aka Coronavirus
re: Epstein Barr Virus and Hashimoto’s Thyroiditis
re: Chronic Fatigue Syndrome
Comeback? I’m trying, see: Exercise: Positive vs Negative Energy Balance? A Personal Challenge. I would dearly love to train and ride like I could until mid-June 2020.
At right is what my doctor is thinking on the years-long fatigue I’ve been battling, approaching 4 years.
Myalgic Encephalomyelitis
The Myalgic part does not ring true: I do not have pain in muscles or have it consistently. When I do have pain, it feels like it is in the bones themselves, along with joints, and a generally permeating feeling of fatiguing ache across upper back. And most of the time no pain.
The Encephalomyelitis (“inflammation of brain and spinal cord”) part: I had been free of brain fog for 7-9 months now. But it returned recently after too much exercise. I also had a warning brain fog about a week prior. It would make sense that a viral surge was in progress.
Is this cause of this really and primarily EBV? Allopathic medicine is so inept at sorting this all out. And why can’t my body fight off EBV but I never get sick with anything else at all, even when directly exposed by family?
Background context/perspective
Background because anyone reading this with a similar issue might find commonality, and therefore relevance. Maybe I’ll learn something from a reader (doctor or fellow sufferer), and maybe readers will find something helpful for their own situation.
I completed my 55th double century in March 2020, 2nd one that year and my last ever. I often wonder if it will ever be possible to complete one again. Not so long as I cannot train even at baseline.
COVID hit me in April 2020, from which I recovered and resumed training gently, then hard training resumed about 3 week after that. I had one “shot across the bow” warning in mid-June prior to the event: a puzzling and severe fatigue for one day—the next day I did a 6000 vertical foot hike in the Mt Whitney area just fine.
About a week later on June 21 2020... wham! The Event. A life-changing physiological blow that I hope to someday recover from.
The remainder of that year was a nightmare and two more years were only marginally better. I was never “vaccinated” by the ridiculous toxic Jab, which I deem a poorly-tested ineffective* money-making scam laundered with fear and hysteria. I never had COVID again in spite of repeated household exposures, nor have I ever had a flu or cold since then—I do not get sick even when my household does. So it’s not like my body is weak in the sense of being susceptible to everyday infections.
* Possibly effective for short duration for a small cohort of high risk people, but only for the alpha and delta variants. Beyond that, a complete and utter folly whose negatives continue to emerge.
Observations
First, I have periodic remissions. Therefore I am not structurally damaged in a physical sense.
All regular blood work including some exotic tests are A-OK with two exceptions: EBV and TPO, two key factors.
Each autumn when I start my travels for a 4-5 week trip, I grow steadily stronger. For example, last fall, I hiked every day and got stronger each day, and within about a week I summited Mt Conness without difficulty (though not quickly)—a first in 3.5 years. By the end of the month, one day on the playa I rode 42 miles on my mountain bike, something I had not done in 3.5 years either.
Why? It might be that I am removing stresses, particularly environmental ones eg allergens. It also get a lot more sun exposure and more (solar-driven) sleep, and I eat a very simple diet, etc, etc.
Strength holds through late November or so back at home, then I tend to get oscillating weak periods, some debilitating and making me pretty useless for work, with everything a struggle. But sometimes I have strong periods at home too, including a day or so a month where I operate at full strength, albeit not full fitness. Clearly my heart and lungs and core facilities are not damaged. It is very hard to sort any pattern. Were it financially viable, I’d go rest and play for 6 months in the mountains and desert.
High-dose Vitamin C kicked me out of a “doom loop” last June, or seemed to. I’m trying that again now in late April, with some apparent effect, being able to do a full ride yesterday for the first time in 10 days. A confounder is the end of a 9-day course of Doxycline, which I ended one day early because it was causing brain fog and fatigue. A poor experiment therefore and yet if I can resume full-length rides (26 miles and ~950 KCal at low pace) that actually means something.
Related issues include localized irritation in tiny spots all over my body that need an scratch as if a bug were crawling there. Not all at once but here and then there, etc. This can prevent sleep for hours. This occurs twice a week or so and was not a problem last fall. It could be allergy related by things like Zyrtec for 10 days had no effect. Also, itchy eyes. Similarly, rare but violent reactions to an environmental stimulus like some damned scent from The Wife’s self care products really set me off one day resulting in severe headache and fatigue in under a minute.
Similarly, in the past few months, a beet-red facial flushing has been occurring, particularly late in the day, but at all times of day. This comes and goes.
Summarizing:
- Localized itchy spots on skin cycling all over the place.
- Itchy eyes.
- Beet-red facial flushing across upper part of face as well as forehead, a feeling of warmth/heat associated.
- Intemittent mild headaches.
- Bloating not apparently associated with food.
- Joint pain particularly shoulder and wrists.
- Heavy feeling to body.
- Stiffness in body (less recently).
These all suggest MCAS as discussed below.
Doctor’s diagnosis
I am generally skeptical of allopathic medicine and doctors. What else is possible, given a horrific track record over many years? But that doesn’t make this diagnosis wrong, and this doctor is a good one with an independent mind, and I have full respect for him. How many other doctors would prescribe LDN? Not many.
To summarize the doctor’s view as best I understand it:
- My issues might be some form of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
- Recurring fatigue cycles likely driven by Epstein Barr Virus flareups. Treatments (not undertaken) include Valtrex (Valaciclovir) or Valayte (Valganciclovir?). I am not a fan of 'meds', and so far have not tried.
- MCAS (Mast Cell Activation Syndrome). Treatments (will try Allegra) include Atioan (?), Ketotifen , Allegra, Zyrtec. I had no luck with Zyrtec when taken for 10 days.
- Hashitmoto’s Thyroiditis, but I had a miraculous reduction in TPO antibodies last fall.
- Small fiber neuropathy causing the sporadic but repeated pinpoint itchiness all over body.
- Low-Dose Naltrexone (LDN) to address inflammation. I had stopped using it, but I think I will try again. It might have been helping me.
- Dr Anne Maitland MD videos on MCAS.
Much of the above characterizes long COVID, though it is relatively minor compared to the severe brain fog and fatigue in 2020 and 2021. Things have evolved away from terrible to chronic and variable.
I do not want to be persuaded on MCAS, since even at the height of pollen season eg California oak trees dumping clouds of pollen, I sneeze only a little when pruning them and don't get stuffed up. In other words, a pretty mild reaction given the massive pollen exposure. Yes, I pruned without a mask, as a test of my response. If anything my overall allergies are greatly reduced versus pre-2020. And my asthma is cured too though when maximally stressed by my situation, I can have mild impairment for a short time.
I am tired of living half a life. I want my vigor back, I want to bicycle to my satisfaction, and I don’t want to lose strings of days of my life to a weariness that makes simple things hard.
How to persuade my body to beat back this vicious cycle? Clearly it’s not going to be one pill for two weeks or ever. The body has got to be cajoled into repairing itself, somehow.
Fall of 2023 for the first time in 3 years, I was able to climb a peak. Prior years just doing the flat approach before reaching the ascent part would have been my limit. Not exactly Mt Whitney in difficulty, Mt Conness is nonetheless a significant effort of 10 miles round-trip and ~2500 vertical feet ascent.
Fujifilm GFX100 II + Fujifilm GF 35-70mm f/4.5-5.6 WR @ 28.8mm equiv (35mm)
ENV: Mt Conness summit ridge, altitude 12530 ft / 3819 m, 38°F / 3°C
RAW: Adobe Color, LACA corrected, WB 5050°K tint 22, push 0.38 stops, +20 Whites, +20 Dehaze, +10 Clarity, USM {8,50,0}, diffraction mitigating sharpening
[low-res image for bot]