ME/CFS
Moderate → somewhat betterIll 9 years before improving or writing
Housebound with ME/CFS, now somewhat better after pacing and antihistamines
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 9 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I have had ME since getting ill with tonsillitis and strep over and over in 2017/2018.
In context ↗ - At worst: Moderate
still pretty much housebound , can't do housework etc.
In context ↗ - Now: Somewhat better
Currently we are moderate and severe so we got a little better but not much.
In context ↗ - Began after: a bacterial or tick-borne infection
I have had ME since getting ill with tonsillitis and strep over and over in 2017/2018.
In context ↗
Read from 224 of their posts and comments; links to the 62 this page draws on
- Aug 2021
- Aug 2024
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Summary
Bramble 30094, a UK patient, fell ill with ME/CFS in 2017/2018 after repeated tonsillitis and strep, and became housebound and moderate-severe after a December 2020 COVID reinfection. Pacing, meditation, POTS treatments including ivabradine, and antihistamines gave a mild improvement, mostly less suffering rather than more functioning. Pregabalin caused withdrawal problems; LDN was planned but no outcome is reported.
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What they tried
What they credit
pacing / resting within limits· Helped a lot · mainradical rest· Helped a lot · mainquitting my job· Helped a lotmidodrine· Helped a lot · mainmeditation / yoga nidra (Insight Timer)· Helpedelectrolytes, salt, water and compression stockings· Helpedelectrolytes, salt, water and compression stockings· Helped
Also tried
pregabalin / Lyrica· Helped a lot · wore offibuprofen· Helpedfodmap diet· Helpedhigh dose of meds for the acid reflux· Helpedmagnesium· Helpedginger tea (Pukka Three Ginger)· Helpedantidepressants (sertraline)· Helpedloratadine (also cetirizine, fexofenadine, prescription antihistamine)· Helpedloratadine (also cetirizine, fexofenadine, prescription antihistamine)· Helpedloratadine (also cetirizine, fexofenadine, prescription antihistamine)· Helpedfamotidine· Helpedubiquinol· Helpedparacetamol· Helpedcannabis oil / medical cannabis· HelpedMirena coil (hormonal IUD)· HelpedTENS machine· Helpednaproxen· Helpedcocodamol· HelpedPiroxicam gel· Helpedcodeine· Helpedfitness watch (Garmin body battery)· Helpedivabradine· Helpedlow dose naltrexone· HelpedCBT and therapy· Helpedalpha lipoic acid· Helped · wore office packs and cold flannel· Helpedelectric heated pad· Helpedstool softeners & glycerine suppositories· Helpednasal strips· Helpednasal sprays and neti pot· No changetonsillectomy· Worselaproscopy removal of endometriosis· Worsepsyllium husk· WorseCOVID vaccination as treatment· Worsejogging / couch to 5K· Much worselong course of antibiotics· Not saidprobiotic dairy-free coconut yoghurt· Not saidbeetroot juice· Not saidyoga· Not saidturmeric· Not saidHormonal birth control (unspecified)· Not saidFlu vaccine· Not said
Their words about each treatment
- pacing / resting within limits · Helped a lot
I did. Through pacing, resting and hiring someone to do all my cleaning, washing up etc
In context ↗ - ibuprofen · Helped
Ibuprofen makes me feel a lot better but I can't take it because it irritates my stomach lining
In context ↗ - fodmap diet · Helped
Went on a fodmap diet then re-introduced foods one at a time so it's better than it was when it started.
In context ↗ - long course of antibiotics · Not said
the onset of my IBS was immediately after a long course of antibiotics to treat a chronic infection so this probably didn't help
In context ↗ - probiotic dairy-free coconut yoghurt · Not said
I eat probiotic dairy-free coconut yoghurt daily & beetroot juice
In context ↗ - high dose of meds for the acid reflux · Helped
take a high dose of meds for the acid reflux which helps but still not 100%
In context ↗ - magnesium · Helped
Magnesium helps me manage muscle cramps, anxiety/OCD and chronic constipation.
In context ↗ - ginger tea (Pukka Three Ginger) · Helped
I drink two big strong mugs of it a day to help with deep persistent body aches and I find it really helpful for digestive issues too.
In context ↗ - antidepressants (sertraline) · Helped
Sertraline definitely improved my brain fog and I'm not sure I'd even still be alive without it.
In context ↗ - jogging / couch to 5K · Much worse
We started off very gradual but it still pushed us both into crashes constantly.
In context ↗ - loratadine (also cetirizine, fexofenadine, prescription antihistamine) · Helped
Been able to tolerate videogames for hours at a time since taking loratadine and famotidine together
In context ↗ - famotidine · Helped
Its helped my brain fog and also helped my acid reflux too.
In context ↗ - pregabalin / Lyrica · Helped a lot
It was very effective, probably saved my life at the time
In context ↗ - ubiquinol · Helped
My energy envelope hasn't really changed but it has made my body aches a lot better I think.
In context ↗ - paracetamol · Helped
I find taking paracetamol (tylenol) and putting a cold flannel on my head to be helpful.
In context ↗ - radical rest · Helped a lot
the biggest improvement for me has been having periods of "radical rest" three times a day
In context ↗ - cannabis oil / medical cannabis · Helped
Cannabis is the only thing which helps my pain
In context ↗ - tonsillectomy · Worse
if definitely made things worse or possibly helped make my ME permanent
In context ↗ - meditation / yoga nidra (Insight Timer) · Helped
yoga nidra meditations on Insight Timer the only way I can fully rest
In context ↗ - electrolytes, salt, water and compression stockings · Helped
Salt and socks have really helped altho I still have pretty bad POTS!
In context ↗ - Mirena coil (hormonal IUD) · Helped
It does wonders for keeping my endo at bay.
In context ↗ - yoga · Not said
I struggled with yoga even when mild
In context ↗ - turmeric · Not said
I eat lots of turmeric.
In context ↗ - TENS machine · Helped
I use a tens machine and it's awesome!
In context ↗ - naproxen · Helped
I was given naproxen eventually which really got rid of the pain like nothing else, but I had to stop taking after 2 days due to gastric side effects.
In context ↗ - cocodamol · Helped
Been prescribed Naproxen (helpful), cocodamol (slightly helpful) and Piroxicam gel (definitely helpful)
In context ↗ - codeine · Helped
Whenever I take it for endometriosis pain I feel great and I don't notice things like POTS fuzzies or general aches
In context ↗ - fitness watch (Garmin body battery) · Helped
I have started using a fitness watch so I can keep an eye on my heart rate which helps me spot when I have been moving too fast.
In context ↗ - quitting my job · Helped a lot
1) Quitting my job
In context ↗ - ivabradine · Helped
Ivabradine stops me fainting and helps me sit upright a bit longer but my overall functioning hasn't changed much.
In context ↗ - low dose naltrexone · Helped
I have seen a very mild improvement in that time and I definitely feel worse when I'm not taking it.
In context ↗ - CBT and therapy · Helped
I found CBT useless for depression but really helpful for OCD.
In context ↗ - midodrine · Helped a lot
3) midodrine, my beloved
In context ↗ - alpha lipoic acid · Helped
I initially found 650mg to be helpful for my nerve pains but doesn't seem to be working lately
In context ↗ - ice packs and cold flannel · Helped
the only thing that helps is ice packs (heat makes it much worse for me because it's nerve pain) and cannabis
In context ↗ - electric heated pad · Helped
When the pain is mild-moderate I find it very soothing.
In context ↗ - nasal sprays and neti pot · No change
Nasal sprays didn't help with my congestion at all. Neither did neti pot.
In context ↗ - stool softeners & glycerine suppositories · Helped
I personally get on best with stool softeners & glycerine suppositories.
In context ↗ - psyllium husk · Worse
I found psyllium husk made my constipation worse
In context ↗ - nasal strips · Helped
across the bridge of nose at night useful for sleeping
In context ↗ - COVID vaccination as treatment · Worse
Had another permanent dip in my health again after my second jab 9 months ago
In context ↗ - Hormonal birth control (unspecified) · Not said
I feel depressed all the time on oral contraceptives
In context ↗ - Flu vaccine · Not said
my 2023 one left me feverish for 4 days and barely able to stay awake sleeping excess of 12-14 hours for a whole week.
In context ↗
Approaches: POTS medication · Mind-body practices · Pacing · Radical rest
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 |
|---|---|---|
| 2017/2018 | ME onset after repeated tonsillitis and strepI have had ME since getting ill with tonsillitis and strep over and over in 2017/2018.In context ↗ | |
| February 2020 | first COVID infection; ME improved to very mild for monthsI was really ill but recovered to quite mild ME after a covid infection in Feb 2020.In context ↗ | |
| spring/summer 2020 | couch to 5K jogging pushed her into a permanent dipI pushed through, and ended up in a permanent dip in my functioning where I could "only" do short walks and very gentle yoga.In context ↗ | |
| December 2020 | COVID reinfection; housebound and moderate-severe sinceI went from very mild practically in remission to moderate-severe from covid two years ago and this has been my baseline sinceIn context ↗ | |
| 2021 | partly back to housework and part-time work from home, short walks every few weeksI work part-time from home for my local council (4 hours a day, 5 days a week).In context ↗ | |
| autumn 2024 | mysterious decline; weekly crashes and daily severe painAnd then my functioning mysteriously went downhill in autumn and I never recovered, since then I'm crashing on a weekly basis again and have severe pain on a daily basis.In context ↗ | |
| February 2026 | mild improvement with quitting job, yoga nidra and midodrine3) midodrine, my beloved 💗In context ↗ | Midodrine |
| 2026-10 | moderate, mostly less suffering; severe nerve pain continuesCurrently we are moderate and severe so we got a little better but not much.In context ↗ |
Adverse events
- Ibuprofen (Advil, Nurofen, Motrin)“Can't even take ibuprofen because it's been affecting my asthma lately.” In context ↗ Side effects
- Antibiotics (unspecified)“the onset of my IBS was immediately after a long course of antibiotics to treat a chronic infection so this probably didn't help.” In context ↗ Gut side effects
- Graded rehab and self-made programmes“I pushed through, and ended up in a permanent dip in my functioning where I could "only" do short walks and very gentle yoga.” In context ↗ Made symptoms worse
- Pregabalin (Lyrica)“Despite dropping by 25mg every two weeks I had horrible symptoms like brain zaps” In context ↗ Withdrawal problems
- COVID vaccination as treatment“Had another permanent dip in my health again after my second jab 9 months ago” In context ↗ Made symptoms worse
- Sinus, jaw and tonsil surgery, Other surgery (adrenal, lung, venoplasty)“had to have two surgeries (tonsillectomy and laproscopy removal of endometriosis) ... and if definitely made things worse or possibly helped make my ME permanent.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“when I had my covid vaccination and was stuck in bed with fatigue for a week” In context ↗ Made symptoms worse
- Codeine“Whenever I take it for endometriosis pain I feel great ... But it means I push through without realising and suffer for it later.” In context ↗ Made symptoms worse
- Hormonal birth control (unspecified)“I feel depressed all the time on oral contraceptives” In context ↗ Mood or psychiatric effects
- Naproxen (Aleve)“I was given naproxen eventually which really got rid of the pain like nothing else, but I had to stop taking after 2 days due to gastric side effects.” In context ↗ Gut side effects
- Flu vaccine“my 2023 one left me feverish for 4 days and barely able to stay awake sleeping excess of 12-14 hours for a whole week.” In context ↗ Side effects
- “Plus I find cannabis bad for my OCD.” In context ↗ Mood or psychiatric effects
- Ivabradine“I started taking ivabradine for POTS a few months back ... I'm also crashing more which could be partly due to this.” In context ↗ Made symptoms worse
- Fexofenadine (Allegra)“I found fexofenadine didn't have any benefit for me and made my brain fog worse.” In context ↗ Made symptoms worse
- Cetirizine (Zyrtec)“Certirizine also made my brain fog worse.” In context ↗ Made symptoms worse
- IUD (hormonal or copper)“the experience of getting it fitted was excruciatingly painful for me (I literally had an out of body experience and very nearly fainted)” In context ↗ Other
- Meditation, yoga, breathwork“Meditation itself can trigger panic attacks and anxiety in some people, myself included.” In context ↗ Mood or psychiatric effects
- Pregabalin (Lyrica)“On higher doses it caused me weight gain and bad brain fog.” In context ↗ Side effects
- Low-dose naltrexone“I quit cold turkey for couple weeks because of multiple medical admin errors and I felt really flu-like while I was off it” In context ↗ Withdrawal problems
- CoQ10 / ubiquinol“Ubiquinol made my POTS worse. I also have orthostatic hypotension and I think maybe it was lowering my blood pressure? I got dizzy and lightheaded on it.” In context ↗ Low blood pressure or fainting
- Ibuprofen (Advil, Nurofen, Motrin)“I can't take ibuprofen anymore, burning stomach pain every time.” In context ↗ Gut side effects
- “They make my nerve pain worse. And taste awful!!” In context ↗ Made symptoms worse
- “Even larger amounts of THC have put me in my body too much and made me focus in on how sick to the core I feel” In context ↗ Side effects
- Sertraline (Zoloft)“But the first couple weeks especially first couple days of taking it I felt really weird and didn't sleep well!!” In context ↗ Insomnia from treatment
- Psyllium husk (Metamucil)“I found psyllium husk made my constipation worse” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
The other day I walked for almost an hour through my local nature reserve. And yes I paid for it.
In context ↗ - Brain fog
Sertraline definitely improved my brain fog and I'm not sure I'd even still be alive without it.
In context ↗ - POTS & dysautonomia
Ivabradine stops me fainting and helps me sit upright a bit longer
In context ↗ - Mast cell (MCAS) & allergies
I have dust mite allergies.
In context ↗ - Sleep problems
During a flare up I have issues staying asleep for more than 4-5 hours.
In context ↗ - Pain & fibromyalgia
I have near constant body aches mostly in my legs.
In context ↗ - Headaches & migraine
I wake up with lots of pains - very sore throat, headache
In context ↗ - Gut problems
I have terrible acid reflux and chronic constipation
In context ↗ - Light & noise sensitivity
sometimes pushing through vertigo/nausea/screen intolerance/brain fog/fatigue etc.
In context ↗ - Heart symptoms & palpitations
Before I started on ivabradine my heart rate was going up to 160bpm half the time I showered
In context ↗ - Neuropathy & tingling
I get severe nerve pains and the only thing which helps me is cannabis oil
In context ↗ - Anxiety & low mood
This is accompanied by anxiety and brain fog.
In context ↗ - Flu-like symptoms
I wake up with lots of pains - very sore throat, headache, aches in legs, stiffness in my neck and back, swollen and painful glands etc.
In context ↗ - Temperature regulation
I used to get really bad heat intolerance but it massively improved after taking POTS meds
In context ↗
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