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Codeine

163 people describe trying Codeine (114 with ME/CFS, 49 with long COVID). Of the 127 who said how it went, 71 say it helped, often with one symptom, and 23 got worse. 5 credit it as one reason they got better overall.

Everyone · 163 people

All 163 who tried it

How it went for everyone who tried it

Helped means they said it helped with what they took it for, which may be one symptom and not the illness.

56%
helped
71 of 127
26%
no change
33 of 127
18%
got worse
23 of 127

Shares are out of the 127 people who said how it went. 36 more tried it without saying how it went overall; 5 of them describe a problem.

Show as a table
How it wentPeopleShare
Helped a lot54%
Helped6652%
No change3326%
Worse2318%
Much worse00%

Did it last, for everyone it helped?

  • It wore off for 6 of the 71 people it helped: 1 who credits it for their improvement, 5 who don’t.

Read from what people wrote, and the more someone wrote, the more likely they are to mention it. Some people stop posting before saying, so the real number may be higher.

Everyone · 5 people

5 who credit it

Among the 5 who credit it with their improvement, here’s how they are now

Credit it means they say it’s one reason they got better: 2 say it helped them most; 3 say it was one of several things that helped.

20%
recovered or near normal
1 of 5
80%
much or somewhat better
4 of 5
0%
relapsed
0 of 5

Where each person was at the end of their story, or in their latest post that says how they are, compared with their worst point.

Show as a table
Outcome describedPeopleShare
Recovered00%
Near normal120%
Much better240%
Somewhat better240%
Relapsed00%

Did it last?

  • 1 of the 5 who credit it said its benefit wore off.
  • 3 of the 5 who credit it say they still need to keep doing something (not always this) to stay well.
5 who credit it

By how ill people were

Only the 5 who credit it, so people it didn’t help or made worse aren’t here. How they are now is their outcome overall, not the effect of this one treatment.

Severity at worstHow they are nownRecovered or near normal
Moderate1100%
Severe20%
Very severe10%
Not stated10%
Show as a table
At worstOutcomePeopleShare
ModerateNear normal1 of 1100%
SevereMuch better1 of 250%
SevereSomewhat better1 of 250%
Very severeMuch better1 of 1100%
Not statedSomewhat better1 of 1100%

Adverse events

What people said went wrong, in their own words.

37 of 163

people who wrote about taking it described a problem they tied to it

Described one · 37Didn’t mention one · 126

The serious kinds

Worth telling a doctor about straight away.

  • Allergic reaction / anaphylaxis

    5 people
    “I react to codeine with shortness of breath, chest pain & drop in oxygen.”
    — Quail 66012
    “I also got it badly badly after surgery last year when I was reacting to codeine”
    — Starling 25339
    Show 3 moreShow fewer
    “Turns out I’m allergic to it and it gave me gallbladder spasms for HOURS.”
    — Osprey 18424
    “It helped a little for the pain i get in Pem but it also gave me an allergic reaction at the same time”
    — Ocean 75298
    “I can't take anything with codeine as I'm severely allergic to it”
    — Cedar 88424

  • Mood or psychiatric effects

    2 people
    “Codiene gives me the most intense, terrifying, vivid nightmares man. Even a tiny dose of ... I just get these super intense hallucinations of my terrifying violent death in a range of scenarios.”
    — Shore 87383
    “I so feel like it causes derealisation I feel very disconnected from my self and off”
    — Dusk 88109

    If you are struggling or having thoughts of harming yourself, please reach out for help: a doctor, a local crisis line or emergency services.

The serious kinds are a death, suicidal thoughts or an attempt, a hospital stay, an ER visit, an allergic reaction or anaphylaxis, heart rhythm, liver or kidney, blood count, mood or psychiatric, or refeeding or deficiency problems, and being made much worse: a large worsening such as a crash lasting weeks or more.

Other kinds

Unpleasant effects people tied to it, the most serious first.

Made symptoms worse · 9Withdrawal problems · 3Gut side effects · 8Insomnia from treatment · 3Side effects · 8Other · 1 Show all 6Hide

  • Made symptoms worse

    9 people
    “it's really addictive and starts giving you migraines and other pain after a while, so you need to take it more often.”
    — Meadow 19726
    “Used to take codeine for chronic pain, realised it causes PEM and don’t take it anymore”
    — Osprey 57920
    Show 7 moreShow fewer
    “I can't take codeine or anything like it. Always makes me worse.”
    — Dove 22550
    “Whenever I take it for endometriosis pain I feel great ... But it means I push through without realising and suffer for it later.”
    — Bramble 30094
    “Codeine makes the pain worse for me lol”
    — Kestrel 67701
    “I hate taking it because it makes the cognitive symptoms way worse.”
    — Crest 40253
    “make me feel great almost normal. but i would get a hangover a day after and feel worse.”
    — Creek 93348
    “I found codeine temporarily got rid of my fatigue and body aches but long term use made it worse.”
    — Bluebell 24945
    “codeine (terrible period pain) makes it significantly worse”
    — Moon 98926

  • Withdrawal problems

    3 people
    “I've had to come off that now that I'm staying LDN. ... Got watery poo and pain so bad.”
    — Creek 46119
    “I am trying to reduce the dosage which isn't high but is regular and it results in minor withdrawals which obviously increases the pain and fatigue”
    — Bluebell 24945
    Show 1 moreShow fewer
    “i take codeine (opiates) ... i might be experiencing constant opiate withdrawal”
    — Falcon 10746

  • Gut side effects

    8 people
    “I was given it in hospital for pain and by a Dr for menstrual cramps and pretty much had no effect apart from making me feel sick.”
    — Sandpiper 74069
    “Can’t take codeine as it gives me gastro problems, same with gabapentin.”
    — Nightjar 39265
    Show 6 moreShow fewer
    “codeine takes the edge off but I can’t take it because it wrecks my stomach and sometimes causes more pain than I had to begin with”
    — Kestrel 39175
    “personally, it didn’t do much for me other than making me majorly constipated”
    — Quail 67953
    “Opioids like codeine gave me intestinal bleeding so I had to stop taking them”
    — Dune 66318
    “side effects aren't worth the benefits, they can make you feel sick, they give most people constipation”
    — Cove 20588
    “I get sickness pretty much daily from a mixture of CFS, Chrons disease & opiate medication.”
    — Hill 55051
    “Codeine makes me nauseous and dizzy and sometimes I throw up.”
    — Valley 79108

  • Insomnia from treatment

    3 people
    “They can also stop me getting to sleep. Not always but enough to make me hesitant to use them at night.”
    — Bluebell 76797
    “Cough syrup with codeine once kept me up for 2 nights straight.”
    — Breeze 25086
    Show 1 moreShow fewer
    “Everytime I take codeine, I'm very energetic and cannot sleep at all the next night.”
    — Marsh 80999

  • Side effects

    8 people
    “Codeine switches my brain off. It is horrible”
    — Glacier 16415
    “Since I needed my pain medication changed from fentanyl to codeine I gained more than 20kg without any diet or lifestyle changes.”
    — Dove 51382
    Show 6 moreShow fewer
    “I felt off my face for a week but the pain subsided.”
    — Stone 82499
    “It kills me it gives me a really bad headache like a really bad one and I get so so dizzy with it”
    — Dusk 88109
    “Doctors just want to give me more high dose codeine but it has too many side effects for me for the minimal relief it gives.”
    — Breeze 86094
    “When I first took oral codeine I had this problem.”
    — Trail 21309
    “I ended up knocking myself out with codeine about an hour after posting this”
    — Fjord 69874
    “I've tried codeine but it, and other opiates, makes me feel terrible.”
    — Sparrow 78696

  • Other

    1 person
    “Obviously i got addicted again and had a couple of really rocky months.”
    — Stone 22797

Only what people tied to this treatment, in their own words, grouped by kind. Some described more than one kind, so the counts by kind add up to 39.

How often it comes up

Posts that mention Codeine, per 1,000 posts each month. Hover or tap a point for the count.

024201020142017202020232026
Show as a table
MonthPosts mentioning itAll postsPer 1,000
Oct 200901050
Jan 201001410
Feb 201001130
Jun 201101090
Nov 201101240
Dec 201101990
Jan 201202320
Feb 201201030
Mar 201201900
Apr 201201620
May 201203750
Jun 201202380
Jul 201202400
Aug 201224854.1
Sep 201205610
Oct 201205260
Nov 201205140
Dec 201206990
Jan 201305330
Feb 201304470
Mar 201304290
Apr 201304990
May 201306060
Jun 201306090
Jul 201306160
Aug 201315771.7
Sep 201303640
Oct 201305360
Nov 201303850
Dec 201305190
Jan 201409440
Feb 201408210
Mar 201414252.4
Apr 201403610
May 201406170
Jun 201404890
Jul 201404440
Aug 201406220
Sep 201405070
Oct 201406780
Nov 201415671.8
Dec 201406290
Jan 201507600
Feb 201508730
Mar 201501,2760
Apr 201519841.0
May 201501,4960
Jun 201501,0460
Jul 201501,2110
Aug 201509980
Sep 201501,0600
Oct 201501,2550
Nov 201501,2460
Dec 201509240
Jan 201601,2820
Feb 201611,0510.95
Mar 201601,0020
Apr 201609980
May 201611,0450.96
Jun 201601,2300
Jul 201601,6190
Aug 201601,7290
Sep 201601,7850
Oct 201611,2200.82
Nov 201601,0920
Dec 201601,2110
Jan 201701,6600
Feb 201711,9880.50
Mar 201702,0780
Apr 201712,1330.47
May 201702,3700
Jun 201702,1940
Jul 201702,1830
Aug 201702,4660
Sep 201702,1890
Oct 201703,0420
Nov 201701,9760
Dec 201702,1120
Jan 201802,6200
Feb 201802,1550
Mar 201802,6130
Apr 201802,2510
May 201822,8280.71
Jun 201803,8710
Jul 201803,0670
Aug 201803,7570
Sep 201803,5120
Oct 201803,2610
Nov 201802,8610
Dec 201802,7540
Jan 201903,6720
Feb 201902,7150
Mar 201903,3170
Apr 201903,1410
May 201903,8550
Jun 201903,3920
Jul 201903,3120
Aug 201913,9430.25
Sep 201904,0350
Oct 201903,9220
Nov 201903,5080
Dec 201903,6590
Jan 202004,6500
Feb 202004,3740
Mar 202004,4750
Apr 202003,6900
May 202034,5430.66
Jun 202005,7010
Jul 202006,1040
Aug 2020010,3330
Sep 2020011,9580
Oct 2020014,5680
Nov 2020016,5460
Dec 2020220,7640.10
Jan 2021024,5620
Feb 2021024,6720
Mar 2021029,4760
Apr 2021128,5090.04
May 2021025,7910
Jun 2021127,8710.04
Jul 2021027,2200
Aug 2021030,8080
Sep 2021030,0740
Oct 2021122,1320.05
Nov 2021227,7220.07
Dec 2021031,8720
Jan 2022042,3170
Feb 2022138,6970.03
Mar 2022144,3050.02
Apr 2022044,3330
May 2022050,5940
Jun 2022049,0580
Jul 2022053,4850
Aug 2022454,4550.07
Sep 2022156,9360.02
Oct 2022158,5110.02
Nov 2022059,1980
Dec 2022161,5760.02
Jan 2023061,0040
Feb 2023050,1330
Mar 2023059,9250
Apr 2023054,2510
May 2023057,7680
Jun 2023052,6790
Jul 2023156,4010.02
Aug 2023065,4350
Sep 2023061,8350
Oct 2023058,4190
Nov 2023253,6620.04
Dec 2023160,6430.02
Jan 2024071,8180
Feb 2024070,0450
Mar 2024168,2610.01
Apr 2024064,3740
May 2024267,6980.03
Jun 2024264,7200.03
Jul 2024065,3350
Aug 2024468,5170.06
Sep 2024070,1680
Oct 2024172,6070.01
Nov 2024071,8020
Dec 2024074,4010
Jan 2025177,9090.01
Feb 2025165,1100.02
Mar 2025169,9050.01
Apr 2025161,6060.02
May 2025165,7330.02
Jun 2025060,5400
Jul 2025062,1050
Aug 2025164,5780.02
Sep 2025261,7040.03
Oct 2025259,2040.03
Nov 2025058,9440
Dec 2025062,8300
Jan 2026263,3210.03
Feb 2026253,0850.04
Mar 2026159,2080.02
Apr 2026053,9890
May 2026257,5410.03
Jun 2026155,3010.02
Jul 2026256,3910.04
Aug 2026056,8250
Sep 2026057,1430

Forum and Reddit posts, 4,007,898 in all, counted per month. A mention means the post names the treatment, not that the writer took it. All trends

Everyone · 163 people

20 of the 163 people who tried it

See all 163 stories

  • Almost bedridden with ME/CFS, now somewhat better and mostly housebound after pacing

    Somewhat better Spruce 14157 ME/CFS Severe at worstIll 9 years before improving or writing reddit.com Oct 2026

    They fell ill suddenly after a virus, were immediately moderate and gave up work. Crashes lowered their baseline, and in 2023 they became almost bedridden and unable to tolerate light or sound. Better pacing, a progesterone-only pill that stopped their…

  • Very severe ME/CFS, now much better after mould removal and nicotine patches

    Much better Doesn’t credit it · WorseMeadow 19726 ME/CFS Very severe at worstIll 35 years before improving or writing reddit.com Oct 2026

    Meadow 19726 has been ill since her teens, mild at first, and became severe about a decade ago, bedbound for two to three years before recovering to moderate; the pandemic made her severe again. Mould in her flat pushed her toward very severe, with loss of…

  • Housebound with ME/CFS, improved on LDN and memantine then relapsed

    Relapsed Doesn’t credit it · HelpedNightjar 86870 ME/CFS Moderate at worstIll 9 months before improving or writing reddit.com Oct 2026

    After COVID in August 2024 they were housebound for months with severe GI flares, then fatigue, body and joint pain and brain fog. They credited low-dose naltrexone and memantine for lifting them from housebound to roughly 75–80% recovered, with semaglutide…

  • Housebound and off work with ME/CFS, now much better with LDN and pacing

    Much better Doesn’t credit it · Not saidPond 30780 ME/CFS Moderate at worstIll 3 years before improving or writing reddit.com Oct 2026

    Diagnosed with mild to moderate ME/CFS and POTS in the UK in 2024, after a covid-triggered episode in 2022 and a parasite infection in April 2024. Before starting LDN they had been housebound, used a wheelchair when out and were off work. Low-dose…

  • Bedbound with ME/CFS, somewhat better with near-infrared light and LDN

    Somewhat better Doesn’t credit it · WorseOsprey 57920 ME/CFS Severe at worstIll 3.5 years before improving or writing reddit.com Oct 2026

    A UK Reddit user's ME/CFS began in 2023 while they were mild, and they deteriorated to bed-bound by spring 2025, saying a Vipassana retreat pushed them to severe. Near-infrared light, NAC and low-dose naltrexone each brought boosts—NAC for head pressure, NIR…

  • ME/CFS for 20 years, three years better then back in bed

    Relapsed Doesn’t credit it · WorseDove 22550 ME/CFS Severe at worstIll 20 years before improving or writing reddit.com Oct 2026

    Dove 22550 had ME/CFS for about 20 years and spent the first three largely in bed. About nine years ago it lifted on its own for three good years, when they got fit again, before an unexplained crash put them back to mostly in bed. NLP for anxiety around ten…

  • Housebound with ME/CFS, now somewhat better after pacing and antihistamines

    Somewhat better Doesn’t credit it · HelpedBramble 30094 ME/CFS Moderate at worstIll 9 years before improving or writing reddit.com Oct 2026

    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…

  • Bedbound with severe ME/CFS and POTS, no help from low-dose naltrexone and other drugs

    No benefit Doesn’t credit it · No changeTulip 28194 ME/CFS Very severe at worstIll for 6.5 years reddit.com Oct 2026

    A UK woman fell ill with COVID in March 2020 and had mild long COVID for over a year, still working full time. After a second Pfizer dose she developed body-wide pain and a fibromyalgia diagnosis, and a Moderna booster in December 2021 left her bedridden…

  • Housebound and mostly bedbound with ME/CFS, now somewhat better with clonazepam and rest

    Somewhat better Doesn’t credit it · HelpedBluebell 76797 ME/CFS Severe at worstIll 23 years before improving or writing reddit.com Oct 2026

    Bluebell 76797 fell ill at 15 with fatigue, headaches and nausea, and developed ME at 18 after Freshers Flu at university. They pushed through exercise and worsened from mild to severe; they became severe in 2021 and were later housebound and mostly…

  • ME/CFS: hardly able to leave house, improved to work full time, then relapsed

    Relapsed Doesn’t credit it · WorseSandpiper 74069 ME/CFS Mild at worstIll 27 years before improving or writing reddit.com Oct 2026

    Sandpiper 74069 fell ill with ME/CFS at 19 in 1999 and improved enough to work full time in her 30s. A stomach bug around 2016 and later COVID dropped her baseline; she could hardly leave the house and needed daily rest. A functional doctor's antifungals and…

  • Long COVID nausea and insomnia, back to 80% of normal for months, then relapsed after IVF

    Relapsed Doesn’t credit it · No changeBadger 83327 Long COVID Moderate at worstIll 4 years before improving or writing reddit.com Oct 2026

    A woman living in a tropical country fell ill with long COVID in July 2022, with relentless nausea, stomach pain, head pressure and insomnia, losing 10 kg. After about six months of TCM, acupuncture, cupping and antihistamines she had an 8-9 month remission…

  • ME/CFS: a year very severely ill, decades mostly mild, now worse again, rest credited

    Relapsed Doesn’t credit it · HelpedAcorn 82743 ME/CFS Very severe at worstIll 40 years before improving or writing reddit.com Oct 2026

    Has had ME/CFS for four decades: a year very severely ill, then decades mostly mild, with long severe crashes that resolved with rest alone; she stopped working. She credited rest, not treatment; two COVID vaccines put her in bed nine months with neuropathy,…

  • Bedbound with ME/CFS, now somewhat better; credits life changes, unsure what helped

    Somewhat better Doesn’t credit it · HelpedShore 75867 ME/CFS Very severe at worstIll 30 years before improving or writing reddit.com Oct 2026

    UK woman with ME/CFS for about 30 years, suspected to begin after a first glandular fever bout. She had many very severe, fully bedbound years; abuse and a toxic care situation later trashed her health. By her latest post she was back to severe, mostly…

  • Fully bedbound with ME/CFS, now much better after pacing and time

    Much better Doesn’t credit it · Not saidBeacon 82879 ME/CFS Very severe at worstIll 10 years before improving or writing reddit.com Oct 2026

    A UK person who fell ill and was diagnosed shortly afterwards spent over two years mild to moderate, then declined within a week to severe/very severe, fully bedbound and relying on their parents as carers. Over several years they climbed back to moderate…

  • ME/CFS, part-time and pacing to avoid a week with fever, no benefit from Ritalin or SSRIs

    No benefit Doesn’t credit it · HelpedCrocus 98352 ME/CFS Mild at worst reddit.com Oct 2026

    Crocus 98352 has had ME/CFS for years, with mono infections at 13 and again at 28. They work part-time and must pace or spend a week at home with a fever, but are not severe. Ritalin, taken for ADHD, makes them more tired during PEM, SSRIs gave only side…

  • Long COVID: two months off work at worst, now much better with pacing and supplements

    Much better Doesn’t credit it · HelpedPrairie 68541 Long COVID Severe at worstIll 4.5 years before improving or writing reddit.com Oct 2026

    A woman in the US caught Omicron COVID in December 2021 and has had ME/CFS-type long COVID since. Her worst point was month eight, when she went downhill fast and took two months off work. She improved slowly on supplements, antihistamines, NAC, CoQ10/NADH…

  • Long COVID with PEM, unable to work, big improvement on cetirizine then relapsed

    Relapsed Doesn’t credit it · WorseKestrel 67701 Long COVID Moderate at worstIll 10 months before improving or writing reddit.com Oct 2026

    A Canadian Reddit user with long COVID and PEM who could not work and managed only one 20-minute walk a day. A booster six months in hit them hard. Cetirizine 10 mg gave a big improvement, with no more daytime naps and a 1 km walk easy; montelukast caused a…

  • Long COVID fatigue left her unable to work; pacing, built up slowly, helped her much better

    Much better Doesn’t credit it · HelpedFlint 95755 Long COVID Severe at worstIll 6 years before improving or writing reddit.com Oct 2026

    A UK woman who caught COVID in early 2020 was left with long COVID and chronic fatigue after a relapse at the end of that year. Fatigue left her unable to get up, walk four minutes or work as a gardener; two vaccine doses and later reinfections set her back…

  • Mostly bedbound with severe ME/CFS, now somewhat better with ivabradine and a buzz cut

    Somewhat better Doesn’t credit it · No changeMeadow 64833 ME/CFS Severe at worstIll 4 years before improving or writing reddit.com Oct 2026

    A UK woman who developed ME after COVID in 2022 began mild, then declined after colds and an under-treated ear infection and, by pushing through PEM, became severe and mostly bedbound. She credited ivabradine with lowering her resting heart rate and helping…

  • Bedbound and housebound with ME/CFS as a teen, now much better after rest and pacing

    Much better Doesn’t credit it · HelpedVale 96568 ME/CFS Severe at worstIll 31 years before improving or writing reddit.com Oct 2026

    Vale 96568 became ill with ME/CFS at 11 after glandular fever and was bedbound and housebound through his early teens. Long rests and self-paced activity, plus time, let him return to work and enjoy roughly five near-normal years in his twenties. In 2012 he…

See all 163 stories

These are the newest 1 of the 5 who credit Codeine for their improvement, then the newest 19 of the 158 who tried it without crediting it, in about the same proportion as the full list.

A little hope, every Sunday

New recovery stories and data-driven research on ME/CFS and long COVID. Ideas worth considering, and the evidence behind them.

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