ME/CFS
Severe → relapsedIll 15 years before improving or writingNeeds ongoing treatment
Bedridden with ME/CFS for three years, improved with pacing, then relapsed to moderate
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 15 years
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
I've had ME for 15 years. Currently moderate and really grateful I'm not severe anymore.
In context ↗ - At worst: Severe
I was totally bedridden from 2010-2013. At that time I couldn't hold a conversation.
In context ↗ - Now: Relapsed
I worked 4 years and then overdid it and relapsed . I'm moderate now.
In context ↗ - Began after: nothing they could name
I had gradual onset at the beginning and then again when I had recovered enough to work and slowly just pushed myself every day.
Read from 129 of their posts and comments; links to the 44 this page draws on
- Apr 2025
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Summary
Owl 17298 fell ill in 2010 at 29 and was bedridden for about three years, unable to hold a conversation. Over nine years of pacing and rest they reached mild and worked part-time for four years, then overdid it and relapsed to moderate. Benzodiazepines for a REM sleep disorder help them sleep, and antihistamines for MCAS help their nausea; ketamine gave months of pain relief.
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What they tried
What they credit
Also tried
anti histimines· Helped a lotcalf stretches· Helped a lotrhizotomy / nerve ablation· Helped a lothome therapy pool and hot springs· Helped a lottime· Helpedcannabis (smoked and edibles)· HelpedCandida diet· Helpedpills from my GP· Helpedprobiotics· Helpedecoli brewed in the lab· Helpedmast cell stabilizers· Helpedketamine infusions· Helped · wore offlight supervised exercise with an exercise therapist· Helpedmassage· Helpedshrink (psychologist) sessions· Helpedmeditation and mantras· Helpedthree weeks at a mental health clinic· HelpedADHD meds· Helpedginger tea· Helpedlithium· Worsewellbutrin· Worsetestosterone· WorseMirena· Worsebirth control· WorseIUD (hormonal or copper)· Worseantibiotics· Much worsemagic mushrooms· Much worseBio Cimetidine· Not saidTopraz· Not saidSomnil· Not saiddust mite immunotherapy· Not saidmaximum iron dose and iron infusions· Not saidaqua therapy· Not saidneedling· Not saidLDN· Not saidsupplements that target inflammation· Not said
Their words about each treatment
- antibiotics · Much worse
I believe the large amounts of antibiotics I was given when I was first getting sick pushed me from mild to severe.
In context ↗ - Rivotril (clonazepam) · Helped a lot
I believe it the one thing that helped me move from severe to moderate.
In context ↗ - radical rest · Helped a lot
I then did radical rest for at least a year. And then I started gradually increasing my limit.
In context ↗ - pacing · Helped a lot
Pacing and resting were what mostly helped me.
In context ↗ - time · Helped
I was also very sick until end 2014 when I started to improve for no reason.
In context ↗ - magic mushrooms · Much worse
I took 8g and had a guided trip ... It didn't help and I crashed afterwards.
In context ↗ - cannabis (smoked and edibles) · Helped
Cannabis was the best thing to help me.
In context ↗ - lithium · Worse
I was prescribed lithium and wellbutrin. It wasn't fun in lots and lots of ways.
In context ↗ - wellbutrin · Worse
I feel it made mine much worse.
In context ↗ - testosterone · Worse
I was on it for a year. I feel it did make me a but stronger but lots of mood and skin issues.
In context ↗ - Candida diet · Helped
I did the Candida diet. But it's hard and super restrictive. It did give me at least some relief.
In context ↗ - pills from my GP · Helped
doing the Candida diet for 6-10 weeks plus the pills from my GP help
In context ↗ - probiotics · Helped
If I am good with my probiotics, I can manage some cheese.
In context ↗ - ecoli brewed in the lab · Helped
I had some doctor who brewed up ecoli in the lab for me to take that did help with my IBS.
In context ↗ - anti histimines · Helped a lot
Since I've started talking daily anti histamines, my nausea is mostly gone.
In context ↗ - mast cell stabilizers · Helped
taking several different kinds of anti histimines and mast cell stabilizers has helped A LOT with the constant nausea
In context ↗ - Bio Cimetidine · Not said
Bio Cimetidine ( a stomach pill that is an H1)
In context ↗ - Topraz · Not said
Topraz (a stomach pill)
In context ↗ - Somnil · Not said
Somnil (sleeping pill)
In context ↗ - ketamine infusions · Helped
It helped me be pain free for about 6 months. Didn't help with my fatigue at all.
In context ↗ - Mirena · Worse
I've tried a Mirena but it did nothing other than give me an infection.
In context ↗ - birth control · Worse
I've tried birth control and a Mirena and neither helped but actually made everything worse.
In context ↗ - light supervised exercise with an exercise therapist · Helped
I've definitely firmed up due to this exercise and in general it's helped my body pains.
In context ↗ - massage · Helped
I fit in as many massages as I can afford because it really helps with my pain management.
In context ↗ - calf stretches · Helped a lot
she gave me some calf stretches to do. This has lessened the pain substantially.
In context ↗ - shrink (psychologist) sessions · Helped
I talked to a shrink after each session to help me process. I still chat to him once a month. Very useful.
In context ↗ - meditation and mantras · Helped
The meditation helps a bit.
In context ↗ - three weeks at a mental health clinic · Helped
I spent three weeks at a mental health clinic ... It was really good for me to rest like this.
In context ↗ - dust mite immunotherapy · Not said
Today I started an experimental treatment where they inject tiny doses of the dust mites.
In context ↗ - maximum iron dose and iron infusions · Not said
I'm anaemic despite taking the maximum iron dose.
In context ↗ - rhizotomy / nerve ablation · Helped a lot
I had a rhizotomy and now the tingling and pain is gone.
In context ↗ - aqua therapy · Not said
I've tried aqua therapy, different kinds of needling, iron infusions, specialised diets
In context ↗ - needling · Not said
different kinds of needling
In context ↗ - home therapy pool and hot springs · Helped a lot
I recently got a home therapy pool and it's amazing ... floating helps my body pains SO MUCH!
In context ↗ - LDN · Not said
Prescribes LDN and knows how to track how you are doing on it.
In context ↗ - supplements that target inflammation · Not said
Lots of supplements that target inflammation.
In context ↗ - ADHD meds · Helped
Also without my ADHD meds. It's so impossible to do things that used to be basic tasks.
In context ↗ - ginger tea · Helped
If I couldn't eat right away, a ginger tea helped me.
In context ↗
Approaches: Benzodiazepines · Pacing · Radical rest
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 |
|---|---|---|---|
| 2010 | fell ill at 29; antibiotics pushed her from mild to severeI believe the large amounts of antibiotics I was given when I was first getting sick pushed me from mild to severe.In context ↗ | Mild | |
| 2010-2013 | bedridden, unable to hold a conversation or tolerate stimulationI was totally bedridden from 2010-2013. At that time I couldn't hold a conversation.In context ↗ | Severe | |
| 2013-2016 | housebound for three years after two bedbound yearsI was bed bound for 2 years and then house bound for another 3 years.In context ↗ | Moderate | Pacing and the energy envelope |
| 2019 | returned to part-time work as a university lecturerIn 2019 I returned part time to work as a university lecturer.In context ↗ | Mild | Pacing and the energy envelope |
| 2023 | overdid it at work and slid from mild back to moderateI overdid it this year and I'm about to stop working again. ... I'm moderate again | Moderate | |
| November 2023 | six ketamine infusions; pain free and mood better for a few monthsI'm pain free for the first time in 14 years and my mood has seriously improved.In context ↗ | Moderate | Ketamine |
| April 2025 | still moderate, with worsening spinal pain and an MCAS flareI've had ME for 15 years. Currently moderate and really grateful I'm not severe anymore.In context ↗ | Moderate |
Adverse events
- Testosterone“I feel it did make me a but stronger but lots of mood and skin issues.” In context ↗ Side effects
- Lithium carbonate (prescription), Bupropion (Wellbutrin)“I was prescribed lithium and wellbutrin. It wasn't fun in lots and lots of ways.” In context ↗ Side effects
- IUD (hormonal or copper)“I've tried a Mirena but it did nothing other than give me an infection.” In context ↗ Other
- Bupropion (Wellbutrin)“I feel it made mine much worse.” In context ↗ Mood or psychiatric effects
- IUD (hormonal or copper)“I've tried birth control and a Mirena and neither helped but actually made everything worse.” In context ↗ Made symptoms worse
- Clonazepam (Klonopin)“I am. I'm addicted to a benzo. Ive taken a small dose every night for the last 12 years.” In context ↗ Other
- Antibiotics (unspecified)“I believe the large amounts of antibiotics I was given when I was first getting sick pushed me from mild to severe.” In context ↗ Made symptoms worse
- Psilocybin (magic mushrooms)“It didn't help and I crashed afterwards. I have tried much smaller dose another time and it still led to PEM.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHair lossHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
If I do any more then I get PEM.
In context ↗ - Brain fog
The sharp decline in my cognitive abilities was the first thing that warned me how bad my health has become again.
In context ↗ - Mast cell (MCAS) & allergies
I've recently been diagnosed with MCAS and taking several different kinds of anti histimines and mast cell stabilizers has helped A LOT with the constant nausea.
In context ↗ - Pain & fibromyalgia
I have intense pains in my arms, hands, legs and feet.
In context ↗ - Headaches & migraine
they honestly saved my life through some of my multi day migraines
In context ↗ - Gut problems
My MCAS mostly manifests in stomach problems.
In context ↗ - Light & noise sensitivity
I was so severe I often struggled to open my eyes. Almost any stimulation caused me to crash.
In context ↗ - Neuropathy & tingling
My right hand side was going numb and tingly.
In context ↗ - Anxiety & low mood
I've been in a lot of pain recently and things have been very very bad for me mental healthwise.
In context ↗ - Temperature regulation
I freeze water bottles, wrap a towel around it, and then sleep wrapped around my frozen bundle.
In context ↗ - Hair loss
Stopped losing my hair and was able to grow really thick head of hair.
In context ↗
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