ME/CFS struggling in school and missing church, now somewhat better with stress reduction
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- Not stated
- Last post
- May 2020
In their words
- Condition: ME/CFS
Once I developed ME, I was getting them once or twice a week.
In context ↗ - At worst: Mild
I am lucky that my fatigue is mild enough that I can go on regular walks.
In context ↗ - Now: Somewhat better
I'm by no mean's healed. But I'm more and better equipped to handle the crap my body throws at me.
In context ↗
Read from 24 of their posts and comments; links to the 15 this page draws on
Summary
ME/CFS left her struggling in school, missing church and with no hobbies at her low point. Over two years she built up tolerance to post-exertional malaise until she could take two short walks a day, about an hour and 1–1.5 miles total, resting afterwards. She also credited stress reduction and mental health work, and migraine medication that cut attacks to two a month. Colds repeatedly set her back and she said she was by no means healed.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- exposure · Helped
For me exposure has been very helpful
In context ↗ - walking · Helped
Over the past two years ... I've built up a tolerance PEM to the extent that I can go on two short walks a day.
In context ↗ - portion control and not snacking · Helped
That, portion control and not snacking has helped me lose 20 pounds.
In context ↗ - regular sleep schedule and not napping · Helped
I find that it's better when I don't nap during the day and when my sleep schedule is regular.
In context ↗ - staying hydrated / water bottle · Not said
I always have a water bottle in arms reach. I try to stay hydrated.
In context ↗ - energy management and rest breaks · Helped
I have to take little breaks as I go and rest when I get home
In context ↗ - Pamelor · Helped
I'm on medication now and it's really helping. ... I take 40 mg and don't feel like I need to up it.
- trip to the redwoods and a cabin in Santa Cruz · Helped
The fresh air, cool weather and beautiful trees were so refreshing. I felt so much better there.
In context ↗ - flu shot · Not said
I always get the flu shot.
In context ↗ - PT who does isometrics and easy exercises · Not said
I was lucky enough to find an amazing PT who does isometrics and easy exercises with me.
In context ↗ - medication that manages my arthritis · Helped
I also found a medication that manages my arthritis very well.
In context ↗ - talk therapy · Helped
I tried talk therapy and my therapist was not the greatest. It did make me think and I was doing well with my depression so I stopped
In context ↗ - stress reduction, coping skills and positive mindset · Helped
Stress reduction, coping skills, energy management, taking care of my mental health ... have made a bigger difference in my health and outlook on life than anything else I've been able to do.
In context ↗ - weighted blanket · Helped
I love my weighted blanket. I sleep better, but I have a harder time getting up.
In context ↗
Approaches: CBT & mindset · Exercise and activity · Pacing · Tricyclic antidepressants
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 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 |
|---|---|---|---|
| — | Developed ME/CFS (date not given)Once I developed ME, I was getting them once or twice a week.In context ↗ | Not stated | |
| 2017 | Low point: no hobbies, few close friends, struggling in school, missing churchI was in a pretty bad place when I started walking, no hobbies, close friends, struggling in school, and missing church.In context ↗ | Mild | |
| 2019-05-02 | Built up a tolerance to PEM until she could manage two short walks a dayI've built up a tolerance PEM to the extent that I can go on two short walks a day.In context ↗ | Mild | Walking |
| 2019-05-14 | Migraines cut from once or twice a week to two a month on PamelorI'm on medication now and it's really helping.In context ↗ | Mild | Nortriptyline (Pamelor) |
| 2019-10 | Back-to-back colds, then another coldI had just gotten back on my feet from two back to back colds when I catch another one.In context ↗ | Moderate | |
| 2019-10-28 | Credited stress reduction, coping skills, energy management and mental health workStress reduction, coping skills, energy management ... have made a bigger difference in my health and outlook on lifeIn context ↗ | Mild | |
| 2020-04-29 | Still walking for enjoyment; by no means healedI love taking walks. They help me feel happier and give me a good thing to do.In context ↗ | Mild |
Adverse events
- Nortriptyline (Pamelor)“The medication I take for my migraines makes my mouth dry so I always have a water bottle in arms reach.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
walking the same distance at school would cause really bad PEM
In context ↗ - Brain fog
If I'm resting my brain (brain fog or a migraine), TV and long conversations are out.
In context ↗ - Sleep problems
If I nap, I'll wind up with sleep paralysis when I nap and when I sleep at night.
In context ↗ - Headaches & migraine
I get migraines too.
In context ↗ - Temperature regulation
My feet all ways cold.
In context ↗ - Anxiety & low mood
I knew I had struggled with depression
In context ↗ - Pain & fibromyalgia
I've had arthritis since I was in elementary school.
In context ↗
Ask Miruvor AI
Similar stories
-
Long COVID too faint to walk or drive, now good most days at about 80-85%
A woman who fell ill with long COVID in August 2023 was too faint to walk around much or drive, with brain fog, breathlessness and anxiety. Quitting her job and resting six months, plus supplements, brought her to about 90% by mid-2024, but a January 2025…
-
Housebound and off work with ME/CFS, now much better with LDN and pacing
Diagnosed with mild to moderate ME/CFS and POTS in the UK in 2024, after a covid-triggered episode in 2022 and a parasite infection in April 2024. Before starting LDN they had been housebound, used a wheelchair when out and were off work. Low-dose…
-
Long COVID with PEM after overdoing it, much better after pacing and time
He was a fit gym-goer in London who never recovered from a fifth COVID infection in March 2024. After about 18 months he improved to about 80-90% by walking daily, cutting sugar and alcohol, and taking mirtazapine, electrolytes, CBD oil and using red light…
-
Long COVID with insomnia, almost back to normal after time and nortriptyline
A 27-year-old butcher developed long COVID two months after mild COVID in April 2021, with anxiety, breathlessness, insomnia and neuropathy while still working full time. He credits time, diet and probiotics, and nortriptyline, which eased nerve pain and…