ME/CFS
Moderate → no benefit
ME/CFS with brain fog, insomnia, anxiety and pain, no improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Mar 2021
In their words
- At worst: Moderate
I need to rest a lot each day and more and more each year and I feel I am losing the things I used to enjoy.
In context ↗ - Now: No benefit
I need to rest a lot each day and more and more each year and I feel I am losing the things I used to enjoy.
In context ↗
Read from 15 of their posts and comments; links to the 13 this page draws on
Summary
Eagle 41570 had ME/CFS and described getting worse and losing a lot of functioning; they reported brain fog, insomnia, anxiety and pain. They said pushing through made them much worse and needed to rest more each year. They used very small doses of modafinil for focus, plus heart-rate monitoring to pace; therapy and meditation helped them cope.
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What they tried
Also tried
lots of protein· Helpedmodafinil· Helpedtherapist· HelpedFitbit· Helpedmicro pacing· HelpedTara Brach's meditations· Helpedspring water· HelpedCBD· Worseindica THC· Not saidsleep meds· Not saidonline wellness course· Not saidhatha yoga· Not said
Their words about each treatment
- lots of protein · Helped
Me too, no cure but better energy.
In context ↗ - modafinil · Helped
I only take 1/4 to 1/3 of the lowest dose tablet and not when I am in a crash. It helps cognitive function (like when I need to drive) and boost mood a tiny bit.
In context ↗ - CBD · Worse
I think it helped my sleep a bit but not a lot, still needed sleep meds. And I had brain fog and fatigue the next day.
In context ↗ - indica THC · Not said
Also CBD alone and indica THC alone. It’s the CBD that makes me tired. THC indica doesn’t make me tired.
In context ↗ - sleep meds · Not said
I think it helped my sleep a bit but not a lot, still needed sleep meds.
In context ↗ - therapist · Helped
a good therapist helps to process the anger and pain of family not getting it ... Takes time but is helping.
In context ↗ - Fitbit · Helped
Monitoring HR has made it very real how hard I push and how hard it is on my body. Really forces me to rest and stay under a certain heart rate
In context ↗ - micro pacing · Helped
Even if I do something that I probably should not, then I micro pace. Like shower, dry off. Sit on chair in bathroom legs up resting on sink
In context ↗ - online wellness course · Not said
according to my doctor (online wellness course I am taking) my heart rate is way to high right now
In context ↗ - Tara Brach's meditations · Helped
My therapist recommended her work and I have found her short meditations and talks very helpful.
In context ↗ - hatha yoga · Not said
Me: takes out yoga mat to do some simple yoga. My body: lies down on mat and refuses to move.
In context ↗ - spring water · Helped
Spring water works best for me. If I drink tap water for several days I get sicker.
In context ↗
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2015 | CFS relapse, lost a lot of functioningI got worse and lost a lot of functioning and I think I got it from the one guy I dated briefly after years of not dating.In context ↗ | Moderate |
| 2019-08 | better energy from a high-protein dietMe too, no cure but better energy.In context ↗ | Moderate |
| 2020-01 | needing more rest each yearI need to rest a lot each day and more and more each year and I feel I am losing the things I used to enjoy.In context ↗ | Moderate |
| 2021-03 | managing with micro-dosed modafinil, heart-rate pacing and therapyI only take 1/4 to 1/3 of the lowest dose tablet and not when I am in a crash.In context ↗ | Moderate |
Adverse events
- “As someone who’s parents intimidated me to repeated push through it over and over again, I would say don’t. I Am much worse for it and lots of social sides effects from doing too much.” In context ↗ Made symptoms worse
- Modafinil / armodafinil“I pay for it a bit later but at least have a moment of being more active.” In context ↗ Made symptoms worse
- Cannabis (THC, marijuana)“I have been trying CBD but haven’t found the right product of ratio yet, 1:1 is too much thc for me.” In context ↗ Side effects
- CBD (cannabidiol)“I have tired this but makes me very tired next day with no motivation.” In context ↗ Side effects
- “And I had brain fog and fatigue the next day. I tried it for a few weeks. Then I had to stop to function better during the day.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I need to reduce my anxiety and insomnia.
In context ↗ - Pain & fibromyalgia
a quiet peaceful morning or even simply a day without pain.
In context ↗ - Post-exertional malaise
I Am much worse for it and lots of social sides effects from doing too much.
In context ↗ - POTS & dysautonomia
my heart rate is way to high right now, or today, like past extreme on the meter
In context ↗