ME/CFS
Moderate → somewhat betterIll 14 years before improving or writing
Mostly housebound with ME/CFS, somewhat better after CPAP and ADHD stimulants
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 14 years
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
I’m not diagnosed and haven’t given up hope it’s something else but I meet the criteria
In context ↗ - At worst: Moderate
35 year old with moderate cfs here.
In context ↗ - Now: Somewhat better
The stimulants help a bit with the fatigue and brain fog but it definitely feels like a band aid. ... I’m very stiff and sore all the time, still fatigued.
In context ↗ - Began after: nothing they could name
I went from being fine one week to exhausted the next.
Read from 42 of their posts and comments; links to the 22 this page draws on
Summary
Mesa 14079 had fatigue, headaches and jaw pain from their mid-20s, then became suddenly exhausted in early 2020 while in a physically demanding warehouse job; they left work and were mostly housebound. Diagnosed with sleep apnoea and ADHD, they used CPAP and ADHD stimulants, which improved sleep and anxiety and eased fatigue slightly, but they stayed tired and sore. TMJ treatment costing $4,000 relieved their headaches.
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What they tried
What they credit
Also tried
melatonin· HelpedTMJ treatment· Helpedturmeric· HelpedMonster energy drinks· Helped“healing crystal” necklace· HelpedCPAP therapy· HelpedADHD stimulants· Helpedblood pressure meds· No changemany different supplements· No changepacing· No changeSSRI / anxiety medication· No changecutting out treats and snacking· No changeAdvil / pain killers· No changea probiotic· No changenasal spray· No changeintermittent fasting· Worsephysically demanding job / pushing through· Much worsecollagen· Not saidtherapy· Not said
Their words about each treatment
- blood pressure meds · No change
My doctor has put me on blood pressure meds in the hopes that lowering my blood pressure will fix my fatigue, but it hasn’t helped at all.
In context ↗ - physically demanding job / pushing through · Much worse
I intentionally got a physically demanding job hoping to finally push myself into getting in better shape ... Pushed myself into moderate ME from constantly pushing through
In context ↗ - many different supplements · No change
I’m taking a TON of different supplements right now ... Nothings helped yet
In context ↗ - pacing · No change
I am currently really struggling to pace ... I haven’t found a way to avoid PEM altogether
- melatonin · Helped
taking melatonin when I get to bed will within half an hour make me really sleepy, it helps a lot
In context ↗ - Fitbit · Helped
I recently got a Fitbit to better track my symptoms vs how active I am ... Which has unintentionally helped me know when I’m pushing too hard
In context ↗ - SSRI / anxiety medication · No change
It didn’t really help with my anxiety but I kept taking it anyway ... going off it has done nothing to help with the fatigue or weight gain
In context ↗ - TMJ treatment · Helped
I started TMJ treatment earlier this year, hoping that was the cause ... BUT my headaches are WAY better ... BUT no improvement with fatigue
In context ↗ - cutting out treats and snacking · No change
I’ve cut out all treats and snacking and have two small meals a day ... eating less and healthier than I ever have in my life and STILL steadily gaining weight
- intermittent fasting · Worse
hasn’t worked since I got sick. It only gave me orthostatic intolerance
In context ↗ - birth control pill · Helped
I’m on the birth control pill so my hormone levels stay pretty level while I’m taking it but as soon as I stop taking it for the week off, things go downhill fast
In context ↗ - Advil / pain killers · No change
Even before getting sick I got horrible headaches for the whole week that Advil wouldn’t touch
In context ↗ - a probiotic · No change
I took one for a month and it didn’t do anything and was too expensive to keep taking if it wasn’t helping
In context ↗ - turmeric · Helped
I think it’s the turmeric, but I also take collagen which is also supposed to help joints
In context ↗ - collagen · Not said
I also take collagen which is also supposed to help joints
In context ↗ - Monster energy drinks · Helped
It’s the only thing that makes me feel half decent for a couple of hours.
In context ↗ - “healing crystal” necklace · Helped
put the necklace on ... since then I’ve had a solid week of “good” days
In context ↗ - nasal spray · No change
prescribed another nasal spray that doesn’t help anymore than previous ones I’ve tried
In context ↗ - CPAP therapy · Helped
Committed 110% to CPAP therapy ... I can tell I’m sleeping better ... But physically I’m still very tired
- therapy · Not said
I’m in therapy now and have a doctors appointment to discuss medication
In context ↗ - ADHD stimulants · Helped
The stimulants help a bit with the fatigue and brain fog but it definitely feels like a band aid.
In context ↗
Approaches: Pacing · Sex hormones
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 |
|---|---|---|---|
| 2011 (mid-20s) | fatigue, headaches, neck and jaw pain began; needed days off to recover from the work weekI’ve had fatigue, headaches, neck pain and jaw pain for at least 10 years, since sometime in my mid 20s.In context ↗ | Mild | |
| 2019 | took a physically demanding warehouse job to get fit; after about 5 months became exhausted and achyI got a physically demanding job in a warehouseIn context ↗ | Mild | |
| early 2020 | suddenly exhausted, sore muscles, sleeping 12 hours, brain fog; pushed through work for a yearThen about 18 months ago I suddenly got EXHAUSTED. Sore achy muscles all the time. Sleeping 12 hours a day.In context ↗ | Mild | |
| March 2021 | left her job; mostly housebound and unable to work any jobnow can’t work ANY job as I’m mostly houseboundIn context ↗ | Moderate | |
| 2021 | TMJ treatment greatly reduced headaches but did nothing for fatigueBUT my headaches are WAY better.In context ↗ | Moderate | |
| 2022-2024 | treated sleep apnoea with CPAP; sleeps better and less, but fatigue unchangedI can tell I’m sleeping better.In context ↗ | Moderate | CPAP and sleep apnoea treatment |
| spring 2023 | ADHD stimulants eased anxiety and helped a little with fatigue and brain fogThe stimulants help a bit with the fatigue and brain fog but it definitely feels like a band aid.In context ↗ | Moderate | Stimulants (unspecified) |
| 2025-01-05 | still tired and sore, exhausted easily; sleep and anxiety betterBut physically I’m still very tired and often soreIn context ↗ | Moderate |
Adverse events
- Intermittent fasting“It only gave me orthostatic intolerance. Like lightheaded and dizzy” In context ↗ Low blood pressure or fainting
- Antidepressants (unspecified)“I weaned off VERY slowly and yet the withdrawal has still been terrible.” In context ↗ Withdrawal problems
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
but then crashing for several days after
In context ↗ - Brain fog
I find I’m in a brain fog for the first 3/4 of the day and then it clears up at night
In context ↗ - POTS & dysautonomia
It only gave me orthostatic intolerance. Like lightheaded and dizzy
In context ↗ - Sleep problems
I used to sleep 12-14 hours no problem
In context ↗ - Pain & fibromyalgia
I’m very stiff and sore all the time, still fatigued
In context ↗ - Headaches & migraine
as now my headaches are just a dull tired sort of ache that I can live with
In context ↗ - Gut problems
my stomach has gotten increasingly sensitive about eating unhealthy foods
In context ↗ - Anxiety & low mood
the constant struggle was causing me to become depressed and anxious
In context ↗ - Heart symptoms & palpitations
I also have a rapid heartbeat and worry about anything that can potentially affect or put stress on the heart.
In context ↗ - Flu-like symptoms
Often I thought I was “getting sick” because I felt that lousy way you feel before getting a cold, only the cold would never actually come.
In context ↗
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