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ME/CFS Mild → somewhat betterIll 5 years before improving or writingNeeds ongoing treatment

Daily fatigue and PEM with ME/CFS, somewhat better with Prozac and less work stress

Condition
ME/CFS
At worst
Mild (working or studying, with limits)
Ill before improving or writing
5 years
Last post
Oct 2026
In their words
  • Condition: ME/CFSContext: Mild CFS, Covid-induced. In context ↗
  • At worst: MildI'm mild for now, I can still do basic tasks, walk around, go on holidays etc. But if I over-exert, I get PEM. In context ↗
  • Now: Somewhat betterNow, I'm not cured but I'm feeling much better. In context ↗
  • Began after: COVIDI had suspected Covid in March 2020.
Read from 158 of their posts and comments; links to the 55 this page draws on

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Summary

Stream 75770 developed mild long COVID after a suspected infection in March 2020 and was close to normal by mid-2021. Moderna shots brought back daily fatigue, PEM, joint and nerve pain, worse than the first bout. Later they tried Prozac, cut out caffeine and alcohol, and reduced work stress; these helped mood and some symptoms, but they still had flares. They remained unable to exercise without PEM, and long walks could trigger relapses.

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What they tried

Their words about each treatment
  • Paleo / low-carb diet · Helpedam currently trying Paleo to manage symptoms which helps a bit but I still get tired In context ↗
  • running / high-intensity exercise · Worseevery time I go for a run or do any sort of high intensity/cardio exercise, I seem to relapse for a few days after In context ↗
  • garlic · HelpedI’ve found that eating a clove of garlic actually helps knock it out and reduce flare ups significantly. In context ↗
  • salt water gargle · HelpedSalt water does help, I forgot to mention that! In context ↗
  • Prozac (fluoxetine) · HelpedI went on Prozac for 3 months last year when I had (Covid induced) long haul and it worked really well. In context ↗
  • Niacin (vitamin B3) · Not saidHave also bought some Niacin so hoping this might help too. In context ↗
  • rest · HelpedI actually rested for the last 2 months and two days this week I went on tiny 1k runs which didn't make me too out of breath and I have not had any long covid symptoms! In context ↗
  • Elvanse / ADHD stimulants · Helped a lotI take a much lower dose now - 15mg compared to 20mg. In context ↗
  • cetirizine, loratadine, fexofenadine · No changeI also tried famotidine, fexofenadaine, loratidine, cetirizine... none of them did anything. In context ↗
  • cutting out caffeine · HelpedCut out caffeine. This reduced my physical symptom like nerve & muscle pain In context ↗
  • stopping alcohol · No changeI was sober for like 1.5 years but it never helped my CFS In context ↗
  • vitamin D · Not saidI’m taking daily supplements: vit D, vit b6, b3 (niacin), zinc, magnesium, coq10, MSM, lysine and omega 3,6,9. In context ↗
  • L-Lysine · Not saidI do take the supplement L-Lysine to prevent outbreaks and also because I’ve heard it might be good for long haul. In context ↗
  • Venlafaxine · WorseI did try an SNRI (Venlafaxine) for a few days but it felt quite intense which freaked me out In context ↗
  • antivirals · No changeAntivirals don’t seem to make a difference to me In context ↗
  • intermittent fasting · HelpedI think I'm gonna give intermittent fasting another go too, I always seem to feel better when I skip breakfast. In context ↗
  • Magnesium Glycinate · HelpedI started taking Magnesium Glycinate recently and my legs feel better but it could also be coincidence. In context ↗
  • stretches / yoga · Helpedfeeling of restlessness in legs which is slightly helped by doing stretches/ yoga In context ↗
  • hot baths · HelpedI've also started taking baths again lately now that the weather is cooler and they really help. In context ↗
  • Zolpidem · HelpedZolpidem has been best for me because it doesn’t cause any grogginess the next day for me. In context ↗
  • ibuprofen/co-codamol · No changeI was taking ibuprofen/co-codamol when I was ill, but I've taken this at other points of my LH and it didn't make my LH symptoms better. In context ↗
  • low histamine diet · HelpedI did feel better doing the low histamine diet but I lasted three days because it’s SO BORING. In context ↗
  • probiotics · No changeI took the ones recommended by the NHS here in the U.K. They were expensive and did nothing. In context ↗
  • Famotidine · No changeyesterday I took Famotidine (H2 blocker) after eating something accidentally high histamine at lunch which seemed to help, but this morning I took some and it’s doing nothing… In context ↗
  • Quercetin with zinc · WorseI’ve had the same ‘spicy heat’ feeling after taking Quercetin with zinc. It’s almost like pins and needles/ hot itchy feeling everywhere. In context ↗
  • iron supplementation · HelpedMy ferritin was low so I've been taking this daily since last year. In context ↗
  • electrolyte drink · HelpedI did feel better yesterday after eating some salty sushi and having an electrolyte drink In context ↗
  • CoQ10 · HelpedI've been taking Coq10 for about 2 weeks and I *think* I've noticed a slight reduction in PEM and being able to do more activity. In context ↗
  • levothyroxine · Helpedmy headaches and tiredness did improve after the levothyroxine, which I started before the ketotifen In context ↗
  • Ketotifen · Helped a lotI’ve also improved massively with ketotifen! In context ↗
  • LDN (low dose naltrexone) · HelpedStarted on 0.25mg, now on 4.5mg. No side effects except vivid dreams. I noticed straight away my brain fog/focus was slightly better. In context ↗
  • pacing · Not saidmaybe very slowly getting better (or I’ve just been learning to pace better…) In context ↗
  • COVID vaccination as treatment · WorseMy long haul symptoms had finally recovered after a year … then came back after I got the vaccine. In context ↗

Approaches: SSRIs · Antihistamines & MCAS · Diet · Radical rest · Stimulants · Supplements · Thyroid hormones

Their path

Very severeSevereModerateMildNear normalRecoveredonset12 mo2 y3 y4 y5 y6 y

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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
March 2020suspected COVID-19, followed by mild long haulI had suspected Covid in March 2020. Long hauled mildly (but more moderate flare ups after exercise) for about a year. In context ↗Mild
August 2020relapse after starting heavy high-heart-rate running againYesterday I went for a run for the first time in a few weeks and today I was exhausted and had a three hour nap at 5pm. In context ↗Mild
April 2021almost back to normal, able to do short runsApril 2021 - I'm almost back to normal. I can go for short runs and not relapse after. In context ↗Near normal
August 2021long covid symptoms returned after the Moderna shotsThen, after a couple of weeks, I get mild flu like symptoms, aching muscles, weird nerve feelings and general malaise/tiredness. In context ↗Mild
October 2021worse than the original bout; mostly sitting on the sofa, only walks possiblethen after that I've actually been worse than my original bout of long haul ... I can go on walks and that's about it. In context ↗Mild
November 2021COVID reinfection; symptoms briefly vanished for a weekI had no aches or pains/restless legs/aching hands etc. ... I was actually full of energy! In context ↗Near normal
December 2021symptoms crept back after the reinfection and a walkIt's been 2 weeks now though and my symptoms are creeping back in In context ↗Mild
May 2024Prozac lifted mood and briefly gave more physical capacityAt first I felt great, actually better than before I was on it. I could even walk for up to an hour without getting PEM. In context ↗Mild
October 2024CFS getting worse over months; dreading work daysThe last few months my CFS has been getting worse. Lately I've been dreading every day at work, it's like wading through mud. In context ↗Mild
December 2024lowest point with CFS plus unmedicated ADHD and a desk jobThis time last year, I was in hell due to having both of these conditions. In context ↗Mild
March 2025levothyroxine for borderline thyroid; headaches and tiredness improvedmy headaches and tiredness did improve after the levothyroxine, which I started before the ketotifen In context ↗MildLevothyroxine (Synthroid)
2025ketotifen cleared most of the 'poisoned' MCAS-like feelingThis helped *tremendously* with the "poisoned" feeling I described above. I barely experience it now. In context ↗MildKetotifen (Zaditen)
September 2025LDN improved brain fog and recovery from PEMI noticed straight away my brain fog/focus was slightly better. I also think that I get over PEM quicker. In context ↗MildLow-dose naltrexone
December 2025feeling much better though not curedNow, I'm not cured but I'm feeling much better. In context ↗Mild
April 2026restarted Elvanse daily with no crashes, energy stable through the dayI've been taking it daily since April and have had no crash at all, no PEM. In context ↗MildLisdexamfetamine (Vyvanse, Elvanse)
October 2026still mild; working and active but cannot exercise without PEMI'm luckily still only mild but can't exercise without getting PEM. In context ↗Mild

Adverse events

Symptoms mentioned

Their words about their symptoms
  • Post-exertional malaiseany kind of strenous exercise or things like yoga that strain my muscles will result in days afterwards feeling exhausted, achey, hangover/flu-like In context ↗
  • Brain fognausea, brain fog, anxiety, headache, dry mouth and throat/sinuses, achy joints In context ↗
  • POTS & dysautonomiaI get some POTS symptoms In context ↗
  • Mast cell (MCAS) & allergiesmy histamine/food intolerances started after being on Prozac In context ↗
  • Pain & fibromyalgiaConstant feeling of tired/achey legs, especially when walking uphill or on stairs In context ↗
  • Headaches & migrainemy headaches and tiredness did improve after the levothyroxine In context ↗
  • Gut problemslow-grade nauseous, headachey, joints feel sore, irritability, brain fog, anxiety, itchy In context ↗
  • BreathlessnessI feel a bit breathless if I talk too much or try and walk up stairs In context ↗
  • Muscle weaknesslegs are heavy to move, just a general feeling of malaise In context ↗
  • Neuropathy & tinglingmy fingers and toes feel like pins and needles In context ↗
  • Anxiety & low moodI’m at my wit’s end and I think I’m suffering from depression as a result. In context ↗
  • Flu-like symptomsfeeling exhausted, achey, hangover/flu-like In context ↗
  • Loss of smell or tasteI also lose my sense of smell/taste which I still haven't got back fully In context ↗

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