ME/CFS
No benefitIll for 30 yearsNeeds ongoing treatment
Thirty years of ME/CFS exhaustion and crashes, still fatigued after going gluten free
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- 30 years
- Last post
- Sep 2024
In their words
- Now: No benefit
I've had fatigue issues for 30 years. Cutting out gluten has helped me slightly. You never get used to it. You just learn to accept it. It sucks.
In context ↗ - Says they never had: Flu-like symptoms
I wouldn't say I get flu like symptoms often.
Read from 35 of their posts and comments; links to the 19 this page draws on
Summary
Oak 24533 has had chronic fatigue for about thirty years without an official diagnosis. They have mostly worked full time and for seven years been a support worker, but describe daily exhaustion and never feeling refreshed by sleep. Training for a 10k in early 2022 caused a bad crash and two weeks off work; afterwards they stopped vigorous exercise and went gluten free, with only slight benefit. By 2024 they remained fatigued, saying more sleep made them feel worse.
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What they tried
Also tried
Sertraline· Helpedsleep mask and earplugs· Helpedfasting· Helpedgluten free diet· Helpedpacing· Helpedpsilocybin (magic mushrooms)· Helpednumerous antidepressants· No changesleep experiments / schedules· No changecolonic irrigation· No changeyoga· No changeevery diet· No changeCBT· No changetherapist (sympathetic nervous system advice)· No changemeditating· No changecpap· No changequitting alcohol· WorseCitalopram· Much worserunning / exercise· Much worsevitamins· Not said
Their words about each treatment
- numerous antidepressants · No change
My many GP's over the years have had me on numerous antidepressants. They only mask my fatigue however and nothing has ever changed it.
In context ↗ - Sertraline · Helped
I'm currently on 100mg of sertraline every day. It doesnt do anything for my fatigue but it perks up my depressive mood.
In context ↗ - Citalopram · Much worse
Don't get freaked out by this because we are all different but I tried to take my life on Citalopram.
In context ↗ - sleep experiments / schedules · No change
I've been experimenting with sleep this month trying to get into a pattern. It hasn't worked at all mind.
In context ↗ - sleep mask and earplugs · Helped
I too wear an eye mask. That certainly helps in summer months when the light peeps through the curtains.
In context ↗ - vitamins · Not said
Diets, routines, sleep tests, therapy, vitamins.
In context ↗ - colonic irrigation · No change
I even tried colonic irrigation as I heard that could have benefits! It didn't.
In context ↗ - yoga · No change
I used to do yoga with Adriana on YouTube. I wouldn't say it helped much but it is very calming.
In context ↗ - every diet · No change
I've tried every diet under the sun and non of them alleviate my symptoms.
In context ↗ - fasting · Helped
Although I did find fasting beneficial. I'd recommend having a go at that.
In context ↗ - gluten free diet · Helped
I have been diagnosed with Gluten intolerancies so I've obviously cut out the likes of bread and pasta. I found small benefits in this
In context ↗ - running / exercise · Much worse
I started running again and that's when I learnt first hand the dangers of PEM. In a nutshell, it fucked me right up!
In context ↗ - CBT · No change
I've had CBT twice. It certainly wont do you any harm but don't expect it to work miracles either.
In context ↗ - pacing · Helped
I have since paced myself and made many lifestyle changes including going gluten free and stopping vigorous exercise. This in itself has helped slightly
In context ↗ - therapist (sympathetic nervous system advice) · No change
She was understanding but didn't offer much advice for a hefty price. It was all about getting my sympathetic nervous system in check. Pseudo scientific nonsense to be honest.
In context ↗ - meditating · No change
I have been meditating on and off for quite a while now. I don't really think it helps much but it certainly doesn't do me any harm.
In context ↗ - psilocybin (magic mushrooms) · Helped
I felt amazing. I emailed my therapist today and she recommended I stop taking them but I got more from that afternoon trip than I did from any specialist help in the last 30 years.
In context ↗ - cpap · No change
They said I had mild sleep apnea after almost 30 years and have me a cpap. It didn't help in the slightest.
In context ↗ - quitting alcohol · Worse
I gave up drinking at the beginning of the year thinking it might improve my fatigue, it actually made it worse.
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 30 years after onset: the story doesn’t say how ill they were before that. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2022-02 | mostly working full time as a support worker despite daily fatigueMy main point is that I have (mostly) worked full time.In context ↗ | Mild |
| 2022-03 | crashed after training for a 10k, two weeks off workI made the stupid mistake of training for a 10k. I started running again and that's when I learnt first hand the dangers of PEM.In context ↗ | Moderate |
| 2024-09 | still fatigued, sleep still unrefreshingFor years I've tried to correct this to no avail. I just feel like sleep is my worse enemy.In context ↗ | Mild |
Adverse events
- Sertraline (Zoloft)“I find it just dumbs me down a bit but it does have a negative effect on my memory.” In context ↗ Side effects
- Citalopram (Celexa)“I tried to take my life on Citalopram. I was however, much younger and had a lot going on. It tipped me over the edge big time.” In context ↗ Suicidal thoughts or attempt
- Everyday exercise and activity“I made the stupid mistake of training for a 10k. I started running again and that's when I learnt first hand the dangers of PEM. In a nutshell, it fucked me right up!” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I started running again and that's when I learnt first hand the dangers of PEM.
In context ↗ - Sleep problems
I never feel refreshed when waking up.
In context ↗ - Anxiety & low mood
I'd be suicidal without anti depressants.
In context ↗ - Pain & fibromyalgia
My body ached so much but I kept pushing.
In context ↗