ME/CFS
Severe → no benefitIll for 7 years
Most days in bed with ME/CFS, not recovered despite pacing and CBD
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 7 years
- Last post
- Nov 2023
In their words
- Condition: ME/CFS
I am no longer sure it's long covid but rather ME/CFS
In context ↗ - At worst: Severe
most of the days I am not even able to get out of the bed and barely manage to go to the WC and make myself some very simple meal
In context ↗ - Now: No benefit
I am still having the fatigue, brain fog, lack of attention, and daily headaches for 19 months too but I never got better. Actually, in the last month it got worse for no reason.
In context ↗ - Began after: injury or surgery
In January 2017 I had a surgery and had sepsis.
Read from 14 of their posts and comments; links to the 12 this page draws on
Summary
A 42-year-old Czech trans woman dated her ME/CFS-like illness to a January 2017 surgery with sepsis, worsened by COVID in November 2021 and another surgery in 2022. She had daily headaches, brain fog, breathlessness and PEM, and by mid-2023 spent most days in bed, doing only minimal freelance work. Pacing helped a lot and CBD eased her depression; an antidepressant led to an ambulance call and hospital. She had not recovered.
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What they tried
Also tried
full-spectrum CBD· Helped a lotpacing· HelpedRitalin· Helpedstrict balanced diet· Helpedradio-frequency skin-lifting procedures· Helped · wore offheavy painkillers· No changeFasting· No changepsychotherapy· No changemeditation· WorseOther surgery (adrenal, lung, venoplasty)· Worseantidepressants (SSRIs)· Much worseVitamin B3 and B6 supplements· Not saidVitamin B12 supplements· Not saidiron supplements· Not saidzinc· Not saidVitamin C· Not saidVitamin D· Not saidantipsychotics· Not said
Their words about each treatment
- heavy painkillers · No change
Nothing helps, even the heavy painkillers.
In context ↗ - Fasting · No change
Fasting hasn't helped me but probably there are more things to try.
In context ↗ - Vitamin B3 and B6 supplements · Not said
using Vitamin B3, B6, and B12 supplements has shown signs of improvement so I started taking these
In context ↗ - iron supplements · Not said
I started taking these along with iron, zinc, Vitamin C, and D.
In context ↗ - meditation · Worse
To me meditation has always made me feel worse even before covid.
In context ↗ - antidepressants (SSRIs) · Much worse
I had a very bad experience with the last SSRI and had to call the ambulance and went to hospital.
In context ↗ - antipsychotics · Not said
than any antidepressants and antipsychotics I've taken in my life over the last 20 years
In context ↗ - pacing · Helped
Pacing helps me a lot.
In context ↗ - Ritalin · Helped
I take Ritalin for my ADHD and it helps me a lot.
In context ↗ - strict balanced diet · Helped
I am keeping a strict balanced diet for 9 months already and it pays off.
In context ↗ - psychotherapy · No change
they sent me to psychotherapy, which also didn't solve anything.
In context ↗ - full-spectrum CBD · Helped a lot
Full-spectrum CBD helps me a lot with depression
In context ↗ - radio-frequency skin-lifting procedures · Helped
It affects me quite well in general and the effect lasts about a week.
In context ↗ - Other surgery (adrenal, lung, venoplasty) · Worse
another surgery I had in November 2022 left me with another infection and then even worsened overall condition.
In context ↗
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 |
|---|---|---|
| January 2017 | surgery with sepsis; PEM, allergies and brain fog beganIn January 2017 I had a surgery and had sepsis. After that, I got PEM and started developing all kinds of intolerances, brain fog and unexplicable back, neck, and arms painIn context ↗ | Mild |
| November 2021 | COVID; daily headaches, brain fog, breathlessnessIn November 2021, I got covid and then everything went much worse.In context ↗ | Moderate |
| November 2022 | second surgery with infection; never got back to previous levelanother surgery I had in November 2022 left me with another infection and then even worsened overall condition.In context ↗ | Moderate |
| July 2023 | crashed after holiday swim and first hay fever; mostly in bedmost of the days I am not even able to get out of the bed and barely manage to go to the WC and make myself some very simple mealIn context ↗ | Severe |
| November 2023 | facial radio-frequency treatment helps for about a week; pacing helpsIt affects me quite well in general and the effect lasts about a week.In context ↗ | Severe |
Adverse events
- Antidepressants (unspecified)“I've been given antidepressants again, which only turned me into an emotionless zombie, still as dysfunctional as before.” In context ↗ Mood or psychiatric effects
- Antidepressants (unspecified)“I had a very bad experience with the last SSRI and had to call the ambulance and went to hospital.” In context ↗ ER visit
- Meditation, yoga, breathwork“To me meditation has always made me feel worse even before covid.” In context ↗ Made symptoms worse
- Other surgery (adrenal, lung, venoplasty)“another surgery I had in November 2022 left me with another infection and then even worsened overall condition.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineLight & noise sensitivityLoss of smell or tasteMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
whenever I do an intense task like working for two hours, most of the time it gets so bad that I can only lie down on the bed
In context ↗ - Brain fog
my brain is just slow and my mind goes blank so often that I am unable to do half of the things I used to do
In context ↗ - POTS & dysautonomia
I was dizzy and mildly nauseous every time I get up.
In context ↗ - Mast cell (MCAS) & allergies
I started developing new intolerances and allergies every 3 months or so
In context ↗ - Sleep problems
exhaustion, brain fog, insomnia, and allergic reactions without actual allergies (tested)
In context ↗ - Pain & fibromyalgia
I started noticing some pain appearing in my hip joint area, mostly on the left side
In context ↗ - Headaches & migraine
I got daily headaches which start about noon and never stop until I fall asleep in the night
In context ↗ - Gut problems
10 min workout is causing me brutal headache and nausea which lasts for hours
In context ↗ - Light & noise sensitivity
I need to spend the entire weekend in bed, dimmed room, sleeping for 10-12 hours per day
In context ↗ - Breathlessness
I still feel as if I have just about half of my breathing capacity
In context ↗ - Neuropathy & tingling
my legs getting tingling sensation from time to time
In context ↗ - Anxiety & low mood
I take full-spectrum CBD for my depression and it improves it
In context ↗ - Loss of smell or taste
I lost my sense of smell and taste for almost two weeks.
In context ↗ - Temperature regulation
often the outer edges of my lips are getting blue as if they're frozen
In context ↗ - Vision problems
my vision very often go blurry like my eyes aren't focusing
In context ↗