Disabled with ME/CFS over a decade, relapsed after remission from breathing and vagus work
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 12 years
- Last post
- Mar 2024
In their words
- Condition: ME/CFS
I've done this suffering moderate to severe CFS since 2012.
In context ↗ - At worst: Severe
by 2018 was experiences long bouts of severe CFS
In context ↗ - Now: Relapsed
However, that was wiped out by a high anxiety event which I never really recovered from. ... Yes, I collapsed again and haven't really recovered since after another year.
- Began after: nothing they could name
None of us had any viral onset
Read from 24 of their posts and comments; links to the 18 this page draws on
Summary
Flint 95382 fell ill with ME/CFS in 2012 in their late 30s and remained disabled for over a decade, mostly moderate to severe. They credited good breathing, vagus-nerve work and careful resistance training for a two-month full remission, but high anxiety wiped it out. Fasting, trauma release and avoiding sugar helped gut symptoms; they still could not work and were seeking disability support.
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What they tried
What they credit
Also tried
Their words about each treatment
- PSNS triggers and relaxation techniques · Helped
I use PSNS triggers to trigger relaxation responses.
In context ↗ - exclusive nasal breathing · Helped a lot
gave me two months of complete remission, high energy and anabolic muscle building
In context ↗ - vagus nerve triggers · Helped
the only things that have really touched it are 'good breathing', Vagus nerve triggering and careful resistance/strength training
In context ↗ - low impact resistance training · Helped a lot
My routine for \~12 months got me about 2 months of full remission for the first time in 12 years
In context ↗ - trauma release work · Helped
Before Easter this year, I did some trauma release work and awareness. Best thing I could have ever done.
In context ↗ - CBT and psychologists · Worse
I've found CBT and psychologists to be (predictably) worse than useless to the point of causing me far more harm
In context ↗ - antidepressants · Worse
scripts for antidepressants on which I've previously had harmful outcomes
In context ↗ - Intermittent fasting · Helped
My main management tool is Intermittent Fasting and occasional prolonged fasting which greatly benefits gut health
In context ↗ - prolonged fasting · Helped
It felt beneficial and it didn't make me any worse.
In context ↗ - kefir and sauerkraut · Helped
Kefir and sauerkraut are two that have been the best for me
In context ↗ - sunbaking · Helped
I fair much better with the Sun out and if I'm crashed and it's not too hot, I lay out and sunbake.
In context ↗ - Resveritrol · Not said
I've been trailing Resveritrol to support the roll of 'Sirtuin' molecules which lock up those viral parts of the DNA.
In context ↗ - hot bath · Helped
I need to have a hot bath to bring my temp back up.
In context ↗ - sugar free and gluten free diet · Helped
So I have to live sugar free and gluten free
In context ↗ - celibacy (brahmachariya) · Helped
Mentally and emotionally it has made a huge difference which has reduced stress levels and allowed me to manage my CFS better
In context ↗
Approaches: Diet · Exercise and activity · Mind-body practices · Supplements · Vagus nerve stimulation
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 |
|---|---|---|
| 2012 | ME/CFS set inI was going through my CFS set-in in 2012. I spent a year mostly shut in a spare room when at home and growing more cognatively dysfunctional at work. I had to quit in 2013.In context ↗ | Moderate |
| 2018 | condition went into freefall after renovating the houseby 2018 was experiences long bouts of severe CFS and so couldn't attend call-outs or station duty if I tried.In context ↗ | Severe |
| 2021 | trauma release improved gut function and anxiety managementBefore Easter this year, I did some trauma release work and awareness. ... It also improved my gut function remarkablyIn context ↗ | Moderate |
| 2021 | two months of complete remission on nasal breathingbetter oxygenation and regulation by exclusive nasal breathing, especially during excursion, has been the most promising therapy for my and gave me two months of complete remission, high energy and anabolic muscle buildingIn context ↗ | Recovered |
| 2021 | remission endedUnfortunately, the remission didn't last and the CFS caught up to the new normIn context ↗ | Moderate |
| 2023 | two months of full remission after resistance training and breathing workgot me about 2 months of full remission for the first time in 12 yearsIn context ↗ | Recovered |
| 2023 | crashed after high intensity anxiety attacksbefore it all came crashing down due to a couple of high intensity anxiety attacks.In context ↗ | Severe |
| 2024-03-15 | still disabled and seeking disability supportI'm am still disabled and have for years had to subsist on the lowest rung of punitive welfare for 'job seekers'In context ↗ | Moderate |
Adverse events
- CBT and psychotherapy“I've found CBT and psychologists to be (predictably) worse than useless to the point of causing me far more harm” In context ↗ Made symptoms worse
- Trauma work (EFT, EMDR, TRE)“I did a lot trauma release self-work which made it worse” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“scripts for antidepressants on which I've previously had harmful outcomes” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Particularly, I can better handle lot of the serious PEM convulsions and shutdowns I've been getting the past few years
In context ↗ - Brain fog
Problems with what I call cognitive lock, similar to brain fog but a lot more acute
In context ↗ - POTS & dysautonomia
In my experience, Dysautonomia is a primary suspect, particularly arising from the lower Enteric Nervous System.
In context ↗ - Gut problems
I was having a lot of GI issues and lost the ability to digest sucrose
In context ↗ - Light & noise sensitivity
I couldn't tolerate normal household noises or movements
In context ↗ - Anxiety & low mood
some unexpected anxiety hit (like welfare trying to cut me off) will completely shatter my system
In context ↗ - Muscle weakness
inability to develop muscular power even though activity and exercise is high
In context ↗ - Temperature regulation
I'm personally cold sensitive and go hypothermic below exactly 18 deg C on rainy days.
In context ↗
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