ME/CFS worsening to 10-minute walk crashes, now recovered after giving up grains
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 25 years
- Last post
- Dec 2021
In their words
- Condition: ME/CFS
I'd had Chronic Fatigue Syndrome from my teens 'til I was 50
In context ↗ - At worst: Moderate
I could only walk for 10 minutes very sedately without triggering a terrible mood crash and fatigue reaction.
In context ↗ - Now: Recovered
Overnight, the CFS disappeared (unexpectedly).
In context ↗ - Began after: nothing they could name
I first noticed my CFS / ME in my mid-20's - and it progressively got worse until I gave up all grains in December 2016.
Summary
Plover 76333 had CFS/ME from their mid-20s (another post says from their teens), worsening until they could walk only 10 minutes before a mood and fatigue crash, with IBS, knee buckling and depressive/suicidal thoughts. In December 2016 giving up all grains ended the CFS overnight. In March 2021 a first AstraZeneca vaccine brought long COVID with fatigue, breathlessness and tingling, which a low-histamine diet seemed to ease.
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What they tried
What they credit
Also tried
Their words about each treatment
- gluten-free diet · Not said
I'd gone gluten-free to address IBS.
In context ↗ - giving up caffeine · Helped
I'd given up caffeine to resolve mild prostatits, six months before - and that made life more pleasant
In context ↗ - grain-free diet · Helped a lot
I gave up all grains in December 2016 ... Overnight, the CFS disappeared (unexpectedly).
In context ↗ - lifetime anticoagulant · Not said
I'd had blood clots (calf and lung) 9 years before (and am on lifetime anticoagulant)
In context ↗ - low histamine diet · Helped
Watched a lot of Youtube - and went on a low histamine diet which seemed to help.
In context ↗ - COVID vaccination as treatment · Worse
a few hours after the jab, symptoms that mirrored the pulmonary thrombosis were so strong, I admitted myself to A&E who told me that my D-dimer test showed no clotting
In context ↗
Approaches: Diet
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| mid-20's | First noticed CFS/MEI first noticed my CFS / ME in my mid-20'sIn context ↗ | |
| December 2016 | CFS at its worst, progressively worse for yearsI could only walk for 10 minutes very sedately without triggering a terrible mood crash and fatigue reaction.In context ↗ | |
| December 2016 | CFS disappeared after giving up all grainsOvernight, the CFS disappeared (unexpectedly).In context ↗ | |
| March 2021 | Long COVID symptoms began the day of the first AstraZeneca vaccineI could barely walk at a snail's pace (no energy), walking upstairs at home left me pantingIn context ↗ | |
| 2021 | Low histamine diet seemed to helpwent on a low histamine diet which seemed to helpIn context ↗ | Low-histamine diet |
| 2021-12-10 | Still limited by long COVID, resigned to it lastingLong COVID is nothing like as disabling, debilitating or demoralising as CFS - it's more as though someone had put low-grade fuel in the tank.In context ↗ |
Adverse events
- COVID vaccination as treatment“a few hours after the jab, symptoms that mirrored the pulmonary thrombosis were so strong, I admitted myself to A&E who told me that my D-dimer test showed no clotting” In context ↗ ER visit
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
walk for 10 minutes very sedately without triggering a terrible mood crash and fatigue reaction.
In context ↗ - Brain fog
I no longer had to actively concentrate to focus on what was said and happened in movies.
In context ↗ - Gut problems
the IBS came back with a vengeance the following morning.
In context ↗ - Muscle weakness
my knees buckling or turning into a ragdoll when walking over uneven ground
In context ↗ - Breathlessness
I could walk without getting breathless
In context ↗ - Anxiety & low mood
no more endogenous, unaccountable depressive or suicidal thoughts - which had dogged me for years.
In context ↗ - Neuropathy & tingling
began suffering strong physical and mental fatigue, breathlessness, tingling and turgidity in the toes.
In context ↗ - Sleep problems
I'd keep waking in the day, wondering how long I'd been asleep
In context ↗ - Heart symptoms & palpitations
causing POTS (tachycardia while standing) and other autonomic issues
In context ↗
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