Four years with ME/CFS, sofa-bound at worst, somewhat better with pacing and CoQ10
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3.5 years
- Last post
- May 2025
In their words
- Condition: ME/CFS
I've been suffering from CFS for a little bit over a year know
In context ↗ - At worst: Severe
I was quite sofa bound (still am from time to time) but I was never bed bound.
In context ↗ - Now: Somewhat better
In some ways yes, I’m kinda better but still many ways to go…
In context ↗
Read from 51 of their posts and comments; links to the 27 this page draws on
Summary
Man in early 30s had CFS about four years, sofa-bound but never bed-bound. Amitriptyline and other antidepressants did little; higher-dose amitriptyline caused suicidal ideation, low-dose Abilify akathisia and insomnia, a trippy drug caused severe nausea. Pregabalin eased neuropathic pain; rest, pacing, CoQ10 and creatine were credited. By late 2023 he was moderate, doing four hours of mental work and light dog walks, still with PEM.
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What they tried
What they credit
Also tried
Their words about each treatment
- amytril · Worse
When my neuro suggested I take a larger dose of amitryl, thats when suicidal ideations kicked in and I had to discontinue the medication.
In context ↗ - Wellbutrin · Helped
150 mg seems to help a little, 300mg was too much and I’ve rolled back.
In context ↗ - Pregabalin · Helped
Pregabalin is the only thing that relieves my neuropathic pain a little bit. I go crazy without it.
In context ↗ - Oxandrolone · Helped
Used it for some months. No side effects but little upside also. Dose was prolly too low.
In context ↗ - swimming class · Not said
I started VERY LIGHT swimming class 2x per week
In context ↗ - physical therapy · Not said
I was only doing (very light) physical therapy
In context ↗ - neuropsychology sessions · No change
Nice to know my scores, the sessions after sucked and didn’t help at all.
In context ↗ - Concerta · Helped
I find that Concerta, 18mg, every 2 days work.
In context ↗ - Stavigile · Helped
Took almost a month of 100mg. Worked only first week than it suddenly sugar pills for me.
In context ↗ - ritalin LA · Not said
My neurologist now prescribed ritalin LA. Let’s see how this goes.
In context ↗ - Abilify · Worse
In my case, I had a severe case of akathisia and insomnia. Discontinued the 2 mg immediately and the effects subsided.
In context ↗ - ketamine · Worse
it caused major nausea and fatigue after the trip (like a heavy drinking session)
In context ↗ - flu shot · No change
Did get the flu shot. Nope, it didn’t help.
In context ↗ - CoQ10 · Helped
Its the one thing I can’t eliminate from my supplement stack
In context ↗ - creatine · Helped
And coq10 and creatine
In context ↗ - HMB · Helped
I take HMB, Coq10, creatine, taurine, vitamin d, vitamin K.
In context ↗ - CBD · Helped
CBD helped me a little bit
In context ↗ - weed · Worse
weed makes me anxious and ultra paranoid so nope nope nope.
In context ↗ - 48 hour fast · Helped
went on a 48 hour fast and worked well for me. I felt waaaay better than over eating.
In context ↗ - Low dose naltrexone · No change
Did nothing for me
In context ↗ - mestinon · No change
Yep, didn't help me.
In context ↗ - cymbalta · No change
It only made my life dull... didn't work for me =(
In context ↗ - pristiqu · No change
Tried amytril, pristiqu, cymbalta and honestly I am done with antidepressants.
In context ↗ - Brintellix · No change
I tried amytryl, cymbalta, Brintellix, Pristiq in about 3,5 years.
In context ↗ - rest · Helped
The best thing for me was to rest… still is actually.
In context ↗ - COVID vaccination as treatment · Not said
I had a terrible two days after first shot but got “normal” after.
In context ↗
Approaches: 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. The chart starts 12 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2021 | CFS onsetI've been suffering from CFS for a little bit over a year knowIn context ↗ | Not stated | |
| 2022-03-10 | describing CFS limitationsI'm not bed ridden but I can't work full time (extreme brain fog) and I severely limit my activities aside from the swimming lessons to contain PEM.In context ↗ | Severe | |
| 2023-12-30 | improved from severe to moderateI’m not severe anymore, so I’d say I’m moderate (I can mentally work up to 4 hours a day and some light walks with the dog).In context ↗ | Moderate | Pacing and the energy envelope |
| 2024-05-20 | still better but with a long way to goIn some ways yes, I’m kinda better but still many ways to go… I need to make an update, I think its important.In context ↗ | Moderate |
Adverse events
- Bupropion (Wellbutrin)“150 mg seems to help a little, 300mg was too much and I’ve rolled back.” In context ↗ Side effects
- COVID vaccination as treatment“I had a terrible two days after first shot but got “normal” after.” In context ↗ Side effects
- Amitriptyline (Elavil)“When my neuro suggested I take a larger dose of amitryl, thats when suicidal ideations kicked in and I had to discontinue the medication.” In context ↗ Suicidal thoughts or attempt
- Low-dose Abilify / aripiprazole“I had horrible side effects with low dose abilify (insomnia and akathisia) proceed with (a lot of) caution.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“Game me insomnia and did nothing for my energy levels.” In context ↗ Insomnia from treatment
- Ketamine“it caused major nausea and fatigue after the trip (like a heavy drinking session). Nausea was so strong I had triple vision and vomited till my abs hurted.” In context ↗ Gut side effects
- Amitriptyline (Elavil), Duloxetine (Cymbalta), Desvenlafaxine (Pristiq), Vortioxetine (Trintellix)“I tried amytryl, cymbalta, Brintellix, Pristiq in about 3,5 years. It only made my life dull... didn't work for me =(” In context ↗ Mood or psychiatric effects
- Cannabis (THC, marijuana)“CBD helped me a little bit but weed makes me anxious and ultra paranoid so nope nope nope.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Too much exertion still causes PEM using or not using Concerta.
In context ↗ - Brain fog
extreme brain fog
In context ↗ - POTS & dysautonomia
super dizzy when standing up
In context ↗ - Breathlessness
having to make a lot of effort to breath (dyspnea)
In context ↗ - Pain & fibromyalgia
Muscle Pain -> rest, pace and pregabalin
In context ↗ - Neuropathy & tingling
Pregabalin is the only thing that relieves my neuropathic pain a little bit.
In context ↗ - Gut problems
terrible stomach day due to Christmas food
In context ↗
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