ME/CFS
Severe → no benefitIll for 30 years
Bedbound with ME/CFS and muscle wasting; no lasting benefit from sertraline or keto
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 30 years
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
I've had CFS for nearly 30 years now
In context ↗ - At worst: Severe
I'm currently bedbound
In context ↗ - Now: No benefit
I'm currently bedbound
In context ↗
Read from 56 of their posts and comments; links to the 35 this page draws on
Summary
The user had had ME/CFS for nearly 30 years, with constant dizziness, brain fog, pain, disturbed sleep and PEM, needing a cane, then crutches and a rollator to leave the house. Sertraline improved sleep for only three weeks, and a ketogenic diet for lipoedema made fatigue much worse and cost a year of built-up stamina. By 2025 they were bedbound with muscle wasting.
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What they tried
Also tried
fish oil pills· Helped · wore offsertraline· Helped · wore offanti-histamine· Helpedenergy pill· Helpedyoga· Helpedgentle stretching· Helpedpacing· Helpedwalking stick and crutches· Helpedshower seat· Helpedcold cap with gel inserts· Helpedclay earplugs· HelpedVisible app· HelpedLucozade· HelpedCICO· No changediazepam· No changeniacin· No changeprotien powder· Worsepain meds· Worselymph massage· WorseCOVID vaccination as treatment· Worseketo diet· Much worsemeditation· Not saidweightlifting· Not saidsmartwatch by Popglory· Not saidlo-salt· Not saidEarplugs and ear defenders (Loop)· Not said
Their words about each treatment
- keto diet · Much worse
I've been on the keto diet for about 8 weeks now and my fatigue has gotten so much worse.
In context ↗ - CICO · No change
I tried CICO but it left me ravenous daily and it doesn't help lipoedema
In context ↗ - fish oil pills · Helped
I took fish oil pills for a while and they helped with cognition but the effect faded after a couple of months.
In context ↗ - sertraline · Helped
The only thing that helped was my anti-depressant, sertraline, when I first went on it last year.
In context ↗ - diazepam · No change
I've taken prescription diazepam because of my anxiety and it didn't help with my CFS/ME even a little bit.
In context ↗ - niacin · No change
I bought some and am taking 100mg (x2 50mg tabs) and it's not doing anything.
In context ↗ - anti-histamine · Helped
I take one daily with an energy tablet to counter the drowsiness
In context ↗ - energy pill · Helped
I take an energy pill once a day to counteract the drowsiness my anti histamine causes
In context ↗ - yoga · Helped
Doing yoga allowed me to get my resting heart rate down by 10bpm over the course of a few weeks.
In context ↗ - meditation · Not said
I've been doing it for 20 years.
In context ↗ - gentle stretching · Helped
I can often prevent it from becoming worse with gentle stretching
In context ↗ - weightlifting · Not said
I can sometimes go for a walk, or do some weightlifting or stretching.
In context ↗ - pacing · Helped
Pacing generally works well but a fluctuating condition is still gonna fluctuate.
In context ↗ - walking stick and crutches · Helped
Using a walking stick helped me for quite a number of years
In context ↗ - shower seat · Helped
Two words; shower seat.
In context ↗ - cold cap with gel inserts · Helped
The cooling def helped.
In context ↗ - clay earplugs · Helped
The clay works great.
In context ↗ - smartwatch by Popglory · Not said
I have a smartwatch by Popglory
In context ↗ - Visible app · Helped
There's an app called Visible that I've been using that is pretty good at helping me keep track of my baseline
In context ↗ - protien powder · Worse
I tried protien powder but it induced such bad nausea that I could hardly move the rest of the day.
In context ↗ - lo-salt · Not said
I put lo-salt in my drinks and take a dissolvable hydration tablet when I'm feeling dehydrated.
In context ↗ - Lucozade · Helped
I bought some Lucozade, it helped
In context ↗ - pain meds · Worse
Pain meds don't touch it, they just make me sleepy.
In context ↗ - lymph massage · Worse
I've tried it for other issues and I just find it exhausting to do.
In context ↗ - COVID vaccination as treatment · Worse
but I also was in almost constant PEM for about a month.
In context ↗ - Earplugs and ear defenders (Loop) · Not said
Foam earplugs were great for noise cancelling but gave me an allergic reaction.
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 29.2 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| onset | ME/CFS onset, no trigger identifiedI've had CFS for nearly 30 years nowIn context ↗ | Not stated |
| 2021 | first COVID vaccine dose, ill for five weeksFirst dose I was ill for 5 weeks, barely able to leave the house, I even had a bunch of hair fall out.In context ↗ | Moderate |
| 2021-11-29 | dizziness eased for a few daysin the past few days my dizziness has died down quite a lotIn context ↗ | Moderate |
| 2022-07-17 | constant dizziness returned after a two-week remissionmy constant dizziness, went into a 2 week remission for no obvious reason at all then came backIn context ↗ | Moderate |
| 2022-11-10 | vegetarian keto diet wrecked a year of built-up strengthI tried vegetarian keto in an attempt to treat my lipedema and it wrecked me. I'm still recovering from it.In context ↗ | Moderate |
| 2023-07-23 | keto left them close to bedboundIt was terrible for me, I had to quit because I was unable to do anything. I wasn't bedbound but wasn't far off it.In context ↗ | Severe |
| 2025-01-22 | the unbearable fatigue eased after spending most of the day in bedThis has actually reduced for me since spending most of the day in bed.In context ↗ | Severe |
| 2025-08-01 | bedbound with muscle wastingI'm currently bedbound and have noticed some pretty bad muscle wastage.In context ↗ | Severe |
Adverse events
- COVID vaccination as treatment“I had standard immune system reactions for both, swollen glands and the like” In context ↗ Side effects
- COVID vaccination as treatment“but I also was in almost constant PEM for about a month.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“My second dose caused a 5-6 week crash and then I went back to my version of normal.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“First dose I was ill for 5 weeks, barely able to leave the house, I even had a bunch of hair fall out.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“I even had a bunch of hair fall out.” In context ↗ Side effects
- Earplugs and ear defenders (Loop)“Foam earplugs were great for noise cancelling but gave me an allergic reaction.” In context ↗ Allergic reaction / anaphylaxis
- H1 antihistamines (unspecified)“I take one daily with an energy tablet to counter the drowsiness.” In context ↗ Side effects
- Keto and low-carb diets“I've been on the keto diet for about 8 weeks now and my fatigue has gotten so much worse.” In context ↗ Made symptoms worse
- Keto and low-carb diets“I tried vegetarian keto in an attempt to treat my lipedema and it wrecked me.” In context ↗ Made symptoms worse
- Keto and low-carb diets“It was terrible for me, I had to quit because I was unable to do anything.” In context ↗ Made symptoms worse
- Cryotherapy and cold exposure“On the front I have to place something between the cap and my forehead as otherwise it hurts” In context ↗ Side effects
- “Pain meds don't touch it, they just make me sleepy.” In context ↗ Side effects
- “I tried protien powder but it induced such bad nausea that I could hardly move the rest of the day.” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogHair lossPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I also was in almost constant PEM for about a month
In context ↗ - Brain fog
I can never think clearly anymore, there's always some kind of fog there.
In context ↗ - POTS & dysautonomia
I've not been able to turn my head 180degrees without getting dizzy
In context ↗ - Sleep problems
I wake up dozens of time each night
In context ↗ - Pain & fibromyalgia
I'm in pain most days in various parts of my body. Pain meds don't touch it
In context ↗ - Anxiety & low mood
I've taken prescription diazepam because of my anxiety
In context ↗ - Hair loss
I even had a bunch of hair fall out
In context ↗ - Temperature regulation
a feeling like my head is too hot, especially on the inside
In context ↗