ME/CFS
Mild → much betterIll 4 years before improving or writingNeeds ongoing treatment
Working full time with ME/CFS, pain and PEM, now much better with pacing and stimulants
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 4 years
- Last post
- May 2025
In their words
- Condition: ME/CFS
I have mild CFS, I've been diagnosed for 2 years, but it's been 5 since my first onset.
In context ↗ - At worst: Mild
I have mild CFS, and was falling asleep while standing up (microsleeps), taking daily 3 hour naps, and sleeping a ton at night as well.
In context ↗ - Now: Much better
I've stayed mild, and have more or less gone into remission. ... I still struggle with feeling unrefreshed in the mornings, but that's just part of CFS.
- Began after: glandular fever or EBV
I've had these symptoms for a few years now, since a bout of mono
In context ↗
Read from 121 of their posts and comments; links to the 33 this page draws on
Summary
Horizon 23888 traced their CFS to a bout of mono around 2017; they had poor memory, daily three-hour naps, widespread pain and were in PEM much of the time while working full time as a cook. Moving to a single-storey home, cutting hours, pacing and ADHD stimulant medication brought a large improvement. By 2023 they called themselves mild and more or less in remission, still resting about an hour a day.
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What they tried
What they credit
Also tried
concerta (methylphenidate)· Helped a lotcaffeine pills and coffee· Helpedprozac (fluoxetine)· Helpedaspirin / alka seltzer· Helpedbaking soda in water· Helpedorange juice· Helpedstretching and gentle exercise· Helpedstretchy socks with mild compression (diabetic socks)· Helpedsleep hygiene (white noise machine, blackout curtains, cool dark room)· Helpedbenadryl· Helpeddaily asthma inhaler· Helpedsmaller portions and healthier food choices· HelpedSingulair· Worsevitamins (tab-a-vite multivitamin)· Not saidadvil or aleve· Not saidicy hot balm and heating pad· Not saidClaritin· Not saidnasal Flonase· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- caffeine pills and coffee · Helped
I use both caffeine pills and coffee to keep going
In context ↗ - Coq10 · Helped
I do feel better on it, but my energy still gets wiped out fairly quickly
In context ↗ - vitamins (tab-a-vite multivitamin) · Not said
Started taking vitamins (6 months ago)
In context ↗ - moving to a smaller single story home · Helped a lot
Moving to a smaller single story home made a huge difference for me, energy wise
In context ↗ - pacing / energy envelope and lifestyle changes · Helped a lot
I had a big reduction in symptoms with dramatic lifestyle changes
In context ↗ - concerta (methylphenidate) · Helped a lot
It gives me 8 hours of pre cfs level energy, which is fantastic.
In context ↗ - prozac (fluoxetine) · Helped
I'm on a low dose stimulant and prozac in the evenings, which has helped.
In context ↗ - aspirin / alka seltzer · Helped
Aspirin helps mine, especially in a fizzy tablet like alka seltzer.
In context ↗ - baking soda in water · Helped
a teaspoon of baking soda mixed with 8 oz cold water, rest.
In context ↗ - orange juice · Helped
For a long time I found that orange juice helped my energy level
In context ↗ - stretching and gentle exercise · Helped
I haven't had issues with stretching everyday, and it really helps with the muscle pain part of CFS, for me.
In context ↗ - stretchy socks with mild compression (diabetic socks) · Helped
They seem to help leg pain and don't leave a mark if I have swelling.
In context ↗ - sleep hygiene (white noise machine, blackout curtains, cool dark room) · Helped
What has helped me get good sleep- not eating heavy meals before bed, using a white noise machine
In context ↗ - benadryl · Helped
I used one tablet of benadryl per night for 3 or 4 nights until I had a more set routine.
In context ↗ - advil or aleve · Not said
I used advil OR aleve, and icy hot balm+ heating pad
In context ↗ - icy hot balm and heating pad · Not said
icy hot balm+ heating pad
In context ↗ - daily asthma inhaler · Helped
It's also helped my fatigue to get better control of my asthma through use of a daily inhaler
In context ↗ - Singulair · Worse
the first line treatment (Singulair tablet) gave me mental health side effects
In context ↗ - Claritin · Not said
I can use over the counter strength Claritin year round
In context ↗ - nasal Flonase · Not said
to top up with nasal Flonase if I have breakthrough allergies
In context ↗ - smaller portions and healthier food choices · Helped
I have noticed overeating at a meal wears me out, so I go for smaller portions.
In context ↗ - COVID vaccination as treatment · Not said
the second dose knocked me on my ASS. Everything hurt, all it muscles.
In context ↗
Approaches: Mould avoidance · 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 |
|---|---|---|---|
| onset | symptoms began after a bout of mono; working full time as a cookI've had these symptoms for a few years now, since a bout of monoIn context ↗ | Mild | |
| 2020 | moved to a single-storey house, cut work to part time, simplified routinesMoving to a smaller single story home made a huge difference for me, energy wiseIn context ↗ | Mild | Pacing and the energy envelope |
| October 2020 | crashed after a long walk and drinks with a friendAfter a full week of feeling good, I went out for a long walk with a friend, and a few drinks at the local bar. I was paying that back for daysssss.In context ↗ | Mild | |
| November 2020 | started Concerta 18 mg; eight hours of pre-illness energy per doseIt gives me 8 hours of pre cfs level energy, which is fantastic.In context ↗ | Mild | Methylphenidate (Ritalin, Concerta) |
| February 2021 | back to five days a week, 32 hours; no longer napping dailyI'm back to working full time, I dont need to nap everyday anymoreIn context ↗ | Mild | Methylphenidate (Ritalin, Concerta) |
| December 2021 to February 2022 | quit work; rough first four to six weeksI quit just before December of this year. The first 4 to 6 weeks were rough, but I'm feeling better now.In context ↗ | Mild | |
| August 2022 | regained functionality: short walks, gentle swimming with kids, basic housework, occasional longer drivesI can go for short walks, do leisurely swimming with my kids, do basic housework, drive my car longer distances (on occasion)In context ↗ | Mild | Pacing and the energy envelope |
| December 2023 | stayed mild, more or less in remissionI've stayed mild, and have more or less gone into remission.In context ↗ | Mild | Pacing and the energy envelope |
| May 2024 | resting about an hour a day instead of three, sometimes skipping itI still rest during the day, but I don't need a full 3 hours anymore. More like 1 hour, now.In context ↗ | Mild |
Adverse events
- Methylphenidate (Ritalin, Concerta)“At the end of the eight hours, I usually have a pressure headache, and I return to my cfs level of energy.” In context ↗ Side effects
- Methylphenidate (Ritalin, Concerta)“I use sugar free cough drops, and lip balm to combat dry mouth.” In context ↗ Side effects
- COVID vaccination as treatment“the second dose knocked me on my ASS. Everything hurt, all it muscles.” In context ↗ Side effects
- COVID vaccination as treatment“It turn give me pretty bad muscle pain after the second vaccine” In context ↗ Side effects
- Fluoxetine (Prozac)“I do take fluoxitine, and yes for me it does increase fatigue above 20mg. I've gone up to 60mg in the past” In context ↗ Side effects
- COVID vaccination as treatment“The second shot and booster increased my tiredness the day after, with some muscle pain and chills.” In context ↗ Side effects
- Montelukast / Singulair“the first line treatment (Singulair tablet) gave me mental health side effects, so I had to do something else.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I went out for a long walk with a friend, and a few drinks at the local bar. I was paying that back for daysssss.
In context ↗ - Brain fog
My symptoms- poor memory, exhaustion, needing to take a long nap daily (1 to 3 hours)
In context ↗ - Sleep problems
I still struggle with feeling unrefreshed in the mornings, but that's just part of CFS.
In context ↗ - Pain & fibromyalgia
Within a few months of quitting the pain finally cleared up.
In context ↗ - Headaches & migraine
At the end of the eight hours, I usually have a pressure headache
In context ↗ - Light & noise sensitivity
Mild sensitivity to sound and light.
In context ↗ - Flu-like symptoms
My ears and throat feel itchy and full
In context ↗ - Temperature regulation
If I overdid it, I'd feel like I had the flu, feel too hot or too cold
In context ↗ - Muscle weakness
I got pain everywhere. I could barely move
In context ↗ - POTS & dysautonomia
with swollen lymph nodes, dizziness, feeling weak
In context ↗ - Gut problems
If I'm dealing with nausea, I find ginger ale,saltines, and brothy soup to be helpful.
In context ↗ - Anxiety & low mood
I take an SSRI (prozac) to help manage anxiety.
In context ↗
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