Barely functioning with ME/CFS at worst, now much better with pacing and electrolytes
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 10 years
- Last post
- Mar 2026
In their words
- Condition: ME/CFS
I have been fighting CFS for the better part of 8 1/2 years
In context ↗ - At worst: Severe
between Mayo and hydration, I'm not 100%, but my days are a LOT better than the 5-10% I was at
In context ↗ - Now: Much better
I'm not cured of CFS, but I know to only do so much each day to moderate the mental and physical stress on my body.
In context ↗ - Began after: nothing they could name
I have no idea what caused it. Infection? Medication? Inflammation? No clue.
Read from 28 of their posts and comments; links to the 20 this page draws on
Summary
Exhaustion began at random in July 2015 while they were running 5k/10k runs; by 2022 pain, neuropathy and fatigue had them barely functioning, at their worst 5-10% of normal. A three-week Mayo Clinic pain rehabilitation programme taught them pacing and push-crash management, and daily electrolytes (DripDrop, Buoy) help them have better days. They are not cured: they still work through fatigue and naps, taking duloxetine for nerve pain/depression and THC gummies for pain and sleep.
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What they tried
What they credit
Also tried
Their words about each treatment
- CPAP · Helped
I’ve been on a machine for 7 years with meh results for fatigue. It mainly just keeps my AHI out of danger range.
In context ↗ - Cymbalta (duloxetine) · Helped
It put my nerve pain in the back burner ... I didn't really get complete pain relief until I hit the 120mg max dose.
In context ↗ - CoQ10 (Nature Way) · Helped
this is already one of the best days I've had in the past 5-6 months ... only to see it last a day or two
- fiber supplements · Helped
I also added fiber supplements and completely cut most added sugar from my diet. It all seems to be helping. My fatigue swings are still here, but they aren't as severe
In context ↗ - cutting most added sugar from diet · Helped
my cholesterol and blood sugar were rocketing out of control, so I also added fiber supplements and completely cut most added sugar from my diet. It all seems to be helping.
In context ↗ - Mayo Clinic Pain Rehabilitation Program · Helped a lot
I went through Mayo’s 3-week Pain Rehabilitation Program and it has done wonders for me!
In context ↗ - medical marijuana (THC gummies, vape, flower) · Helped
If there is no pain, I take a couple of gummies about 1.5-2 hours before my targeted bedtime and I'm usually ready to go lights out on time. If I do that, I sleep a lot better and feel more well-rested in the mornings.
In context ↗ - writing a book about my life · Helped
I started a book about my life and dealing with depression and pain ... it got me through a tough time
In context ↗ - laxatives · Not said
My colonoscopy put me into severe constipation for about 6 months afterwards. I’ve never used so much laxative in my life.
In context ↗ - electrolytes (DripDrop, Buoy, Gatorlyte) · Helped a lot
with the combination of DripDrop with Buoy digestive, immunity, and energy drops, it feels more consistent as long as I am strict about using it every day.
In context ↗ - pacing · Helped
They teach you about push/crash and keeping a schedule to prevent you from pushing yourself too hard ... I pick a few tasks and am content that I got done what I planned to get done.
In context ↗ - coffee / caffeine · No change
Caffeine does nothing for me anymore. Coffee used to keep me going, but once CFS set in, nada.
In context ↗ - fish oil · Helped
I've spent money on vitamins and supplements like fish oil and CoQ10 over the years, hoping for an immediate response, only to see it last a day or two.
In context ↗ - working out · Worse
I've tried working out, but it has a horrible effect on me and makes me feel worse.
In context ↗
Approaches: CBT & mindset · POTS medication · Pacing · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| mid-to-late July 2015 | fatigue began at random times while running 5k/10k and half-marathonsI was perfectly normal until mid-to-late July 2015. All of a sudden, I started getting exhausted at random times.In context ↗ | Mild | |
| mid-2017 | wheels came off; thyroiditis, sleep apnea and neuropathy diagnosedThen, in mid-2017, the wheels came off the bus.In context ↗ | Moderate | |
| 2022 | body checked out for goodmy body just checked out for good in 2022In context ↗ | Severe | |
| January 2024 | first good days after starting CoQ10after my first 200mg dose this morning, this is already one of the best days I've had in the past 5-6 monthsIn context ↗ | Mild | CoQ10 / ubiquinol |
| 2024 | completed Mayo Clinic three-week pain rehabilitation programmeI went through Mayo’s 3-week Pain Rehabilitation Program and it has done wonders for me!In context ↗ | Moderate | |
| July 2024 | flare up lasting monthsI’ve been in a flare up since July 22 and still not completely over it.In context ↗ | Moderate | |
| July 2025 | clear change within about ten days of daily electrolytesHoly moly, the change in about 10 days!In context ↗ | Mild | Salt, electrolytes and fluids |
| March 2026 | still working full time; sidelined on the sofa that dayAs I’m writing this, I’ve been sidelined on the sofa all day.In context ↗ | Mild |
Adverse events
- “My colonoscopy put me into severe constipation for about 6 months afterwards. I’ve never used so much laxative in my life.” In context ↗ Gut side effects
- “Sativa would give me crazy spasms, almost like seizures.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
just mowing the lawn has taken its toll on me. Knocked me out for 2-3 days.
In context ↗ - Sleep problems
I’m just happy I’m now getting 7-8 hours of sleep at night instead of the 3-4 I was getting.
In context ↗ - Pain & fibromyalgia
If I am in a lot of pain at the end of the day, I will use my hybrid vape to take the edge off the pain.
In context ↗ - Neuropathy & tingling
idiopathic polyneuropathy in my feet (I can't feel them), idiopathic neuropathy in my left hand
In context ↗ - Anxiety & low mood
It's hard not to fall into the state of darkness and depression
In context ↗ - Brain fog
loss of focus on a nearly daily basis
In context ↗ - Gut problems
My colonoscopy put me into severe constipation for about 6 months afterwards.
In context ↗
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