ME/CFS
Very severe → no benefitIll for 17 monthsNeeds ongoing treatment
Bedbound and severe with ME/CFS, no improvement from mini pill and pregabalin
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 17 months
- Last post
- Feb 2024
In their words
- Condition: ME/CFS
I developed ME CFS half a year ago after probably having mild LC for about 8 months prior
In context ↗ - At worst: Very severe
i’m bedbound and around 5% on the bell scale
In context ↗ - Now: No benefit
it did stop the severe deterioration but I have also not improved to a previous baseline yet
In context ↗ - Began after: COVID
after a Covid infection before that that I recognise only in hinsight
Read from 77 of their posts and comments; links to the 32 this page draws on
Summary
She developed mild long COVID after a Covid infection, then ME/CFS about eight months later; monthly period crashes left her bedbound, 5% on the Bell scale by December 2023. A continuous mini pill (Slynd) stopped the rapid deterioration, but by February 2024 she was still bedridden and severe and had needed help to eat. Pregabalin left her drugged and sleepy, and mirtazapine, taken earlier for insomnia, had caused sleep paralysis and suicidal thoughts.
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What they tried
Also tried
Ativan (lorazepam)· HelpedValerian root drops· Helped · wore offtargeted psychotherapy· Helpedmagnesium oil· Helpedmini pill (Slynd)· Helpedconcentrated matcha· Helpedelectric massage pillow· Helpedpacing and rest· No changeaggressive rest· No changeonline therapy· No changevitamin D· No changeB12· No changeoral magnesium· No changeselenium· No changeCoQ10· No changeOmega 3· No changeNADH+· No changenucleotides· No changeamino acid complex· No changelow histamine diet· No changeantihistamines· No changefirst antidepressant· Worsemelatonin· Worsepregabalin (Lyrica)· Worsemirtazapine· Much worselow-dose aspirin· Not saidlight stretching· Not saidVisible app· Not saidGarmin Venu SQ 2· Not saidibuprofen· Not saidmetamizole· Not said
Their words about each treatment
- first antidepressant · Worse
I had a really bad reaction to the first antidepressant I tried
In context ↗ - mirtazapine · Much worse
not only did it not help with sleep one bit but gave me sleep paralysis and made me incredibly suicidal so i stopped after a few weeks
In context ↗ - Ativan (lorazepam) · Helped
I only take it tops once a week for sleep and the next day is always much more bearable symptom wise
In context ↗ - Valerian root drops · Helped
Valerian root drops used to help me but don’t anymore
In context ↗ - targeted psychotherapy · Helped
I then had targeted psychotherapy over a few months, which resolved my symptom
In context ↗ - pacing and rest · No change
I’ve been trying to pace but that’s obviously not working
In context ↗ - aggressive rest · No change
my period made me crash more each month despite aggressive rest
In context ↗ - online therapy · No change
I have access to online therapy and benzos for emergencies but I haven’t had much relief from either despite my therapist’s best efforts
In context ↗ - vitamin D · No change
taking Vit D, B12, Magnesium, CoQ10, Selenium, Omega 3, NADH+, nucleotides and all those for months but without any tangible effect
In context ↗ - B12 · No change
b12 has done nothing for me so far unfortunately
In context ↗ - oral magnesium · No change
the oral magnesium not so much, even though I’m taking 150mg of a bio-available one
In context ↗ - magnesium oil · Helped
Magnesium oil helps me personally with muscle issues
In context ↗ - selenium · No change
I’m taking B12 and selenium because I was slightly deficient on my last blood tests
In context ↗ - CoQ10 · No change
And Q10 which was recommended to me for CFS but have not seen any improvement since starting it
In context ↗ - amino acid complex · No change
i did for about 3 months as it was something my doctor recommended for LC patients but it didn’t seem to make a huge difference if any at all
In context ↗ - low histamine diet · No change
i have been on an anti histamine diet for months and it has made no difference for me unfortunately
In context ↗ - antihistamines · No change
antihistamines and low histamine diet but that means I don’thave MCAS so yay!
In context ↗ - melatonin · Worse
Melatonin for sleep made my face vibrate
In context ↗ - mini pill (Slynd) · Helped
it has definitely helped the drastic baseline drops since starting it two months ago
In context ↗ - pregabalin (Lyrica) · Worse
So far slightly less pain but not sure if that is worth the weird drugged up feeling I experience because of it
In context ↗ - concentrated matcha · Helped
concentrated matcha does help my daily muscle pain somewhat
In context ↗ - low-dose aspirin · Not said
Taking low-dose aspirin for blood clots
In context ↗ - light stretching · Not said
attempting light stretching
In context ↗ - electric massage pillow · Helped
That’s really helpful for circulation
In context ↗ - Visible app · Not said
I use the Visible app to track symptoms and help with pacing
In context ↗ - Garmin Venu SQ 2 · Not said
overall I do like it and find it useful
In context ↗ - ibuprofen · Not said
for the moment I use ibuprofen and metamizole
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 | After |
|---|---|---|---|
| 2022 | Covid infection followed by mild long COVID8-10 months of mild ones after a Covid infection before that that I recognise only in hinsightIn context ↗ | Mild | |
| June 2023 | acute onset of muscle pain, weakness and PEM after dizziness at workabout a month ago I got really dizzy coming home from work and then felt this weird sensation in my legsIn context ↗ | Mild | |
| July 2023 | went on sick leave; crashed into bed for a day after a 2-hour walkmy muscles were so achey and I had so little energy that I spent the day in bedIn context ↗ | Moderate | |
| September 2023 | declined to nearly bedbound, in bed 95% of the dayI’m in bed 95% of the day currently and it doesn’t seem to have an effectIn context ↗ | Severe | |
| November 2023 | monthly period crashes worsened her baselinemy period made me crash more each monthIn context ↗ | Severe | |
| December 2023 | bedbound, around 5% on the Bell scale, needed feeding and carrying, considering assisted suicidei’m bedbound and around 5% on the bell scaleIn context ↗ | Very severe | |
| December 2023 | mini pill avoided the monthly period crashthis month the huge crash seems to have been avoided so farIn context ↗ | Severe | Progestin-only birth control (mini pill, implant or shot) |
| February 2024 | still bedridden and severe, no return to a previous baselineI’m severe / v severe, bedridden and some days nothing helps if I’m in a bad crashIn context ↗ | Severe |
Adverse events
- Antidepressants (unspecified), Mirtazapine (Remeron)“I had a really bad reaction to the first antidepressant I tried” In context ↗ Side effects
- Antidepressants (unspecified), Mirtazapine (Remeron)“it didn’t help me sleep, gave me sleep paralysis, zero appetite, major depressive episode and I felt insanely drugged up” In context ↗ Side effects
- Antidepressants (unspecified), Mirtazapine (Remeron)“gave me sleep paralysis and made me incredibly suicidal” In context ↗ Suicidal thoughts or attempt
- Antidepressants (unspecified), Mirtazapine (Remeron)“major depressive episode” In context ↗ Mood or psychiatric effects
- Pregabalin (Lyrica)“It induces fatigue without significantly improving my sleep ... I feel more lightheaded and my limbs heavier than normal” In context ↗ Side effects
- Melatonin“Melatonin for sleep made my face vibrate” In context ↗ Side effects
- Progestin-only birth control (mini pill, implant or shot)“It does give me other GI issues though like constipation and nausea on and off” In context ↗ Gut side effects
- Progestin-only birth control (mini pill, implant or shot)“Main problem I have with it is continuous breast pain” In context ↗ Side effects
- Progestin-only birth control (mini pill, implant or shot)“That wrecked my skin.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
my symptoms would get worse whenever I did any sort of physical activity
In context ↗ - Brain fog
trouble concentrating, decline in memory
In context ↗ - POTS & dysautonomia
occasional dizziness
In context ↗ - Sleep problems
I do get about 4 hours of sleep roughly a night, which isn’t restful and isn’t enough
In context ↗ - Pain & fibromyalgia
constant muscle soreness, a dull pulsating pain and joint pain whenever I move
In context ↗ - Headaches & migraine
I have been experiencing headaches
In context ↗ - Gut problems
It does give me other GI issues though like constipation and nausea on and off
In context ↗ - Light & noise sensitivity
cognitive and sensory issues (i can tolerate the curtains being open during the day as it’s very gloomy here all winter but haven’t been able to watch a show in nearly two months)
In context ↗ - Breathlessness
sleep issues, air hunger, internal vibrations, muscle pain and twitching
In context ↗ - Muscle weakness
my muscle weakness is so extreme that i take breaks even writing a simple message and cannot feed myself
In context ↗ - Neuropathy & tingling
occasional tingling in fingers and toes
In context ↗ - Anxiety & low mood
I’ve been struggling with intense anxiety and almost constant panic about what each day might bring
In context ↗