ME/CFS
Moderate → no benefitIll for 8 yearsNeeds ongoing treatment
Moderate ME/CFS, short walks cut by COVID; LDN gave no improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 8 years
- Last post
- Jan 2026
In their words
- Condition: ME/CFS
I've had moderate CFS for years.
In context ↗ - At worst: Moderate
I've had moderate CFS for years.
In context ↗ - Now: No benefit
while sadly I am still struggling with my cfs, I am at least much more mentally stable
In context ↗ - Began after: nothing they could name
My fatigue was initially blamed on my depression and I kept exercising bc I was told it would relieve symptoms.
- Says they never had: Flu-like symptoms
Personally I will say that I don't really ever get swollen glands or lymph nodes or whatever
Read from 137 of their posts and comments; links to the 47 this page draws on
- Mar 2022
- Dec 2025
- Mar 2022
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- Jul 2023
- Nov 2024
- Apr 2022
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Summary
A UK Reddit user with ME/CFS for years described being mild at first, walking and working one shift a week, then moderate. A January 2021 COVID infection lowered their baseline, cutting short walks from about three a week to one. Moving and running a household alone added strain and they said it felt worse, though it was hard to tell. Antidepressants helped gut symptoms and propranolol helped anxiety and heart rate, while LDN gave no improvement.
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What they tried
Also tried
birth control (combined pill, progesterone only pill, implant)· Helpedbirth control (combined pill, progesterone only pill, implant)· Helpedpropranolol· Helpedparacetamol· Helpedpeppermint oil capsules· Helpedcitalopram· HelpedTENS machine· Helpedheat packs, hot water bottles, electric blanket, heated throw· Helpedstretches / range of motion exercises· Helpedphysio massages· HelpedDiphenhydramine hydrochloride· Helpedstopping mobile games· Helpedpacing, one thing at a time· Helpedmagic wand· Helpednicotine patches· HelpedNasaleze Travel Barrier Spray· HelpedVisible armband and Garmin watch· HelpedLDN· No changebrisk walks and a 5k· Worsesertraline· Worsemirtazapine· Worsemeditation and breathing exercises· WorseCBT and psychotherapy· Worsedeep heat cream/gel and pain relief creams and rubs· Not saidcompression socks· Not saidco-codamol· Not saidCBD· Not saidBenaGene· Not said
Their words about each treatment
- birth control (combined pill, progesterone only pill, implant) · Helped
it makes my periods stop and not having to deal with that on top of PEM is a godsend
In context ↗ - brisk walks and a 5k · Worse
I went for a lot of brisk walks when I was mild because I also had depression and was told it would help me, but it just made my functional capacity worse!!
In context ↗ - propranolol · Helped
I was on propranolol for anxiety before diagnosis of cfs but man is it a godsend
In context ↗ - sertraline · Worse
I was on sertraline a few years back and while it helped my depression it triggered GI issues and I had to stop taking them.
In context ↗ - mirtazapine · Worse
I was on mitrazapine (?) a few years ago and that made my joints terribly stiff and sore so I had to stop taking it.
In context ↗ - paracetamol · Helped
for my second I did feel sick for like 10 hours afterwards but taking paracetamol made me feel a lot better
In context ↗ - meditation and breathing exercises · Worse
I get very fidgety trying to meditate and it raises my stress levels so it's not usually restful for me
In context ↗ - peppermint oil capsules · Helped
I take peppermint oil capsules and they help a little bit, if that's any help.
In context ↗ - citalopram · Helped
have only managed to find relief through citalopram. I still get some bad days but it's so much better
In context ↗ - TENS machine · Helped
When hooked up on the right setting it really did bring relief.
In context ↗ - heat packs, hot water bottles, electric blanket, heated throw · Helped
heat really helped my pain, I got a bunch of different hea packs I could use that fit around the neck, over the shoulders etc
In context ↗ - deep heat cream/gel and pain relief creams and rubs · Not said
I also have a stash of pain relief creams and rubs, some are medicated, some just have a heating/cooling effect.
In context ↗ - stretches / range of motion exercises · Helped
Range of motion and PT exercises for me. Stretching can be done without PEM but walking is always a risk
In context ↗ - physio massages · Helped
I saw a physio for a while who gave me massages and they always made me feel less shitty.
In context ↗ - Diphenhydramine hydrochloride · Helped
I take Diphenhydramine hydrochloride occasionally and it works for me while not making me feel any worse the next day.
In context ↗ - stopping mobile games · Helped
a few months back I stopped playing them and did something else and my chronic pain basically stopped
In context ↗ - compression socks · Not said
I also have compression socks that I wear sometimes (though not always bc they're a pain to get on and off).
In context ↗ - pacing, one thing at a time · Helped
Making things easier for myself, ignoring what you're "meant" to do and doing what works for you instead.
In context ↗ - co-codamol · Not said
Hook myself up to my tens machine, turn on my electric blanket, break out the cocodamol, and get takeout.
In context ↗ - magic wand · Helped
Also have a magic wand which can be good for aches and pains.
In context ↗ - LDN · No change
I've been on it since September and haven't noticed any improvement :(
In context ↗ - CBD · Not said
use a TENS machine, heat packs, cbd and various creams/rubs
In context ↗ - nicotine patches · Helped
First time made me feel pretty nauseous but I do think it helps a bit with my pain.
In context ↗ - Nasaleze Travel Barrier Spray · Helped
I use them whenever I have to be around people and I haven't been sick since I started using it
In context ↗ - Visible armband and Garmin watch · Helped
Mine helps me by reminding me I've not taken my beta blockers, or by showing I need to take it easy if I'm still alerting a lot
In context ↗ - BenaGene · Not said
So I have been taking Benagene (the cheaper option and lower dose of 100mg active ingredient with 100mg vitamin c, AOR brand) for the past two weeks.
In context ↗ - CBT and psychotherapy · Worse
I've had it before for depression and the message was to schedule activities and keep going when you could. ... whenever I do that I fuck myself up
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. 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 |
|---|---|---|---|
| before diagnosis | gradual fatigue, blamed on depression; kept exercising and got worseMy fatigue was initially blamed on my depression and I kept exercising bc I was told it would relieve symptoms. It helped me mental health, but my fatigue and pain got worseIn context ↗ | Mild | |
| — | moved into their mother's house after diagnosis; low for months, breathless going upstairsThat was very stressful and a huge upheaval which left me low for months (breathless after walking upstairs and needing to sit down.In context ↗ | Moderate | |
| January 2021 | COVID infection lowered their baseline; short walks from three a week to oneCaught covid Jan 2021 and it massively reduced my baseline - I used to able to go for short walks about 3 times a week, now that is down to 1.In context ↗ | Moderate | |
| June 2021 | moved into their own flat; crashed for monthsThe move itself made me crash for months too, but I had to get out because my mum was out of control.In context ↗ | Moderate | |
| 2023 | stopped working one shift a week; passing out much lessI was only working one shift a week (sat down all day too lol) and would still get home and pass out for 15 hours afterwards. Since I stopped working I pass out a lot lessIn context ↗ | Moderate | |
| 2023-2024 | countertop dishwasher and household aids; pain nearly gone for some monthsThe first few months after I got it saw my pain almost completely disappear (sadly it's returned but alas)In context ↗ | Moderate | |
| September 2024 | symptoms worse after starting LDN, coinciding with their yearly autumn slideMy symptoms have gotten worse since I started BUT it's also coincided with the October slide that I experience every year.In context ↗ | Moderate | Low-dose naltrexone |
| December 2025 | two weeks of feeling better, able to do creative work againI had like 2 weeks where I was randomly feeling better and was able to engage in the creative pursuits I've had to drop for years. Caught up with me yesterday but it was nice while it lastedIn context ↗ | Mild | |
| January 2026 | back to their usual moderate level, mentally steadierwhile sadly I am still struggling with my cfs, I am at least much more mentally stableIn context ↗ | Moderate |
Adverse events
- “I was told to try adult colouring books as a rest technique and have no idea why that's supposed to be more restful than tv ... I actually found it really draining!” In context ↗ Made symptoms worse
- Sertraline (Zoloft)“Sertraline was great for my mental health but upset my stomach terribly.” In context ↗ Gut side effects
- Mirtazapine (Remeron)“I was on mitrazapine (?) a few years ago and that made my joints terribly stiff and sore so I had to stop taking it.” In context ↗ Side effects
- Sertraline (Zoloft), Mirtazapine (Remeron), Citalopram (Celexa)“I've been on 4 different types of anti depressants since having cfs ... One didn't do much of anything, one gave me diarrhea, one gave me awful joint pain” In context ↗ Gut side effects
- Sertraline (Zoloft), Mirtazapine (Remeron), Citalopram (Celexa)“one gave me diarrhea, one gave me awful joint pain, and the one I'm on now helps settle my anxiety riddled stomach so I stay on it.” In context ↗ Side effects
- Sertraline (Zoloft), Mirtazapine (Remeron), Citalopram (Celexa)“I was on a different one that helped my fatigue but had other side effects that meant I had to discontinue it.” In context ↗ Side effects
- Everyday exercise and activity“Thinking I had depression and exercising to try and make myself better is what made me worse lol” In context ↗ Made symptoms worse
- Everyday exercise and activity“My fatigue was initially blamed on my depression and I kept exercising bc I was told it would relieve symptoms. It helped me mental health, but my fatigue and pain got worse” In context ↗ Made symptoms worse
- Everyday exercise and activity“I went for a lot of brisk walks when I was mild because I also had depression and was told it would help me, but it just made my functional capacity worse!!” In context ↗ Made symptoms worse
- Sertraline (Zoloft), Mirtazapine (Remeron), Citalopram (Celexa)“I'm on SSRIs though, so that's probably more of the cause than cfs.” In context ↗ Side effects
- CBT and psychotherapy“I've had it before for depression and the message was to schedule activities and keep going when you could. ... whenever I do that I fuck myself up” In context ↗ Made symptoms worse
- Nicotine patches“Beware that when you start it it's normal to feel sick, dizzy, or nauseous, even with only 3.5mg.” In context ↗ Side effects
- Nicotine patches“First time made me feel pretty nauseous but I do think it helps a bit with my pain.” In context ↗ Side effects
- TENS machine“I'd have it on basically all day and it could let to a tiredness in that area, though it was 100% worth it.” In context ↗ Side effects
- Oxaloacetate“In around that time frame my sleep has gone from 7-10 hours a night to 5-6 hours a night.” In context ↗ Insomnia from treatment
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
when I'm overdoing it or am in PEM I sleep longer bc it's not refreshing
In context ↗ - Brain fog
hhhh sorry my brian is mush these days
In context ↗ - POTS & dysautonomia
Jump from 60-70s to over a hundred lol, and that's while taking propranolol.
In context ↗ - Mast cell (MCAS) & allergies
I used to get hot itchy hands that swelled up and felt like I was having an allergic reaction.
In context ↗ - Sleep problems
I sleep a normal amount when I'm pacing better. If I overdo it or am in PEM then I sleep way more.
In context ↗ - Pain & fibromyalgia
I get pain in my joints that has only been getting more frequent, and gets worse and more widespread fitting PEM
In context ↗ - Gut problems
Ever since my CFS got worse my GI issues have too.
In context ↗ - Light & noise sensitivity
Can sometimes feel very numb and spaced out, or will have increased sensory sensitivity.
In context ↗ - Breathlessness
left me low for months (breathless after walking upstairs and needing to sit down.
In context ↗ - Heart symptoms & palpitations
I get palpitations but PEM will make it worse.
In context ↗ - Muscle weakness
very floppy and unable to do much, even lifting my arms at times
In context ↗ - Anxiety & low mood
the one I'm on now helps settle my anxiety riddled stomach so I stay on it
In context ↗ - Temperature regulation
I get chills as a symptom.
In context ↗