ME/CFS
Moderate → no benefitIll for 20 years
Housebound with ME/CFS and brain fog for over 20 years; medications brought no benefit
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 20 years
- Last post
- Nov 2022
In their words
- Condition: ME/CFS
I've had CFS/ME for 20+ years
In context ↗ - At worst: Moderate
having been mostly housebound for years
In context ↗ - Now: No benefit
It got worse a few years ago when I got out of an abusive family situation and started processing 30+ years of trauma
In context ↗
Read from 18 of their posts and comments; links to the 16 this page draws on
Summary
Had had ME/CFS for over 20 years and was mostly housebound, with brain fog, dizziness, falls and post-exertional crashes. Their CFS worsened a few years before 2022, when they left an abusive family and began processing decades of trauma. Supplements (CoQ10, B-complex, omega oils, multivitamin) helped somewhat, while antidepressants, beta-blockers and gabapentin gave severe side effects or little benefit.
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What they tried
Also tried
management strategies designed for ADHD brains· HelpedCoQ10· HelpedB-complex· HelpedOmega 3 6 9· Helpedbroad spectrum multivitamin· Helpedelectrolyte powder· Helpedintentional and intensive rest· Helpedpacing / listening to your body· HelpedOTC painkillers· No changeprocessing 30+ years of trauma· WorseBetablockers· WorseGabapentin· WorseCBT· Worseantidepressants· Much worseGET· Much worsereasonable caloric deficit coupled with weights and walking· Not saidhigh dose D3 supplement· Not saidnerve blocks· Not saidPropranolol (Inderal)· Not said
Their words about each treatment
- processing 30+ years of trauma · Worse
started processing 30+ years of trauma (yay!), which resulted in significant/worsening depression and anxiety, which ofc impact the CFS
In context ↗ - management strategies designed for ADHD brains · Helped
Management strategies designed for ADHD brains seem to help me a lot, so that's a win I can work with
In context ↗ - antidepressants · Much worse
I literally could not stand up or stay awake. I was on the couch for a week, barely conscious and feeling like death
In context ↗ - reasonable caloric deficit coupled with weights and walking · Not said
what's been starting to work is a reasonable caloric deficit (bearing in mind I have to be super careful about ED triggers) coupled with weights and walking ... but it works
In context ↗ - CoQ10 · Helped
B complex and CoQ10 make the biggest difference for me, definitely
In context ↗ - Omega 3 6 9 · Helped
a regimen of CoQ10, B-complex and Omega 3 6 9 plus a broad spectrum multivitamin does seem to help
In context ↗ - high dose D3 supplement · Not said
I take a high dose D3 supplement too as I was diagnosed heavily vit D deficient.
In context ↗ - Betablockers · Worse
It did reduce heart rate for me, but gave me no improvement in PEM or anything else, plus I developed a chronic cough.
In context ↗ - electrolyte powder · Helped
Day to day energy hacks: electrolyte powder (mix it with fruit tea, big jug lasts the day)
In context ↗ - intentional and intensive rest · Helped
People are going to say 'intentional and intensive rest' because that does help fatigue.
In context ↗ - nerve blocks · Not said
I got to go to a pain clinic for nerve blocks a couple of times
In context ↗ - Gabapentin · Worse
Gabapentin did very little for nerve pain, but I was super jumpy, out of it, and with tons of headaches and visual disturbance.
In context ↗ - OTC painkillers · No change
Most OTC painkillers, on the other hand, do almost nothing.
In context ↗ - GET · Much worse
I lived through multiple 'specialists' prescribing me GET, incredibly damaging ... they make a lot of CFS/ME patients much worse
- CBT · Worse
do not let anyone recommend you GET (Graded Exercise Therapy) or CBT ... they make a lot of CFS/ME patients much worse
In context ↗ - pacing / listening to your body · Helped
the best management strategies are learning to listen to your body - learning how far you can push before your limits hit
In context ↗ - Propranolol (Inderal) · Not said
Betablockers gave me a chronic cough and bronchial inflammation
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. The chart starts 17 years after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| over 20 years before 2022 | ME/CFS beganI've had CFS for over 20 years (ugh) and had some degree of cognitive nonsense since the beginning.In context ↗ | Not stated |
| — | long decline after pushing through college studiesWhen I really pushed it and completed my studies at college, I didn't feel 'normal' (for me) again for four years.In context ↗ | Not stated |
| a few years before 2022 | left abusive family and processed years of trauma; CFS, depression and anxiety worsenedIt got worse a few years ago when I got out of an abusive family situation and started processing 30+ years of traumaIn context ↗ | Moderate |
| 2022-11-22 | mostly housebound for years, everything done online, going out costs a week flatOtherwise, having been mostly housebound for yearsIn context ↗ | Moderate |
Adverse events
- Antidepressants (unspecified)“I just got very intense side effects, to the point I wasn't able to take any meds without them worsening dizziness and fatigue to an impossible degree” In context ↗ Side effects
- Antidepressants (unspecified)“I literally could not stand up or stay awake. I was on the couch for a week, barely conscious and feeling like death” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“I can't take anything without it giving me *extreme* fatigue, even more dizziness than normal, and just generally worsening every symptom I have to the point I couldn't stay conscious, let alone upright” In context ↗ Made symptoms worse
- Propranolol (Inderal)“Betablockers gave me a chronic cough and bronchial inflammation” In context ↗ Side effects
- Gabapentin (Neurontin)“Gabapentin did very little for nerve pain, but I was super jumpy, out of it, and with tons of headaches and visual disturbance” In context ↗ Side effects
- Graded exercise therapy (GET)“multiple 'specialists' prescribing me GET, incredibly damaging” In context ↗ Made symptoms worse
- CBT and psychotherapy“incredibly damaging and poorly implemented "CBT,"” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
PEM is the full system collapse where you don't know if it's going to take two days or three weeks to recover.
In context ↗ - Brain fog
especially problems with concentration, memory/focus, and short-term reward response
In context ↗ - POTS & dysautonomia
one of my big things is falls, fainting, dizziness, collapses etc.
In context ↗ - Sleep problems
I also have messed up sleep schedules
In context ↗ - Muscle weakness
I'll have 2-3 days of muscle weakness and shaking
In context ↗ - Gut problems
I'm going to be weak and nauseous and dizzy af
In context ↗ - Anxiety & low mood
opened up a whole can of generalised anxiety and depression
In context ↗ - Neuropathy & tingling
Gabapentin did very little for nerve pain
In context ↗