ME/CFS
Moderate → no benefitIll for 21 months
ME/CFS crashes: barely able to stand or walk two minutes, still crashing after overdoing it
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 21 months
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
So for the past year I've had CFS
In context ↗ - At worst: Moderate
For the last month I could walk my dog and go to the store but could tell I still needed to hold back.
In context ↗ - Now: No benefit
I'm not really worsening but I feel like early on there were more periods where I felt a tiny bit stronger.
In context ↗ - Began after: stress or burnout
After really pushing it in October (too much exercise/work + mild allergic reaction) it felt like my tolerance for moderate exercise really dropped.
In context ↗
Read from 28 of their posts and comments; links to the 21 this page draws on
Summary
Had mild fatigue and PEM for eight years before a push in October 2024 plus an allergic reaction dropped her tolerance; a crash before Thanksgiving left her barely able to stand and sent her to the ER. After further crashes she could barely walk for two minutes, with muscle weakness, tingling, flu-like crashes and insomnia. A cold coincided with brief improvement; by July 2026 she was still crashing after overdoing it.
Ask Miruvor AI
What they tried
Also tried
Reglan (metoclopramide)· Helped a lotZofran (ondansetron)· Helped a lotswitched birth control methods· Helped a lotmarijuana· Helped a lot · wore offmagnesium· Helpedginger· Helpedprobiotics· HelpedB12· HelpedCoQ10 (Qunol gummy)· Helpedstopping activity as soon as tired or weak· HelpedAdvil· Helpedminimally processed low carb/sugar, high protein diet· Helpedminimally processed low carb/sugar, high protein diet· Helpedminimally processed low carb/sugar, high protein diet· Helpedminimally processed low carb/sugar, high protein diet· Helpedcompression socks / garments· Helpedelectrolytes (Liquid IV, Pedialyte)· Helpedlymphatic drainage massage· Helpedheating pad· Helpedice pack· HelpedEnsure nutrition drinks· Helpedpeppermint and chamomile· Helpedpeppermint and chamomile· Helpedelectric trike· Helpedextended fasting· Not saidpotassium pill· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- magnesium · Helped
I find magnesium helps me sleep.
In context ↗ - Reglan (metoclopramide) · Helped a lot
Reglan made a massive difference when nothing else helped.
In context ↗ - Zofran (ondansetron) · Helped a lot
Zofan also is a massive help
In context ↗ - ginger · Helped
ginger, ginger, ginger. I eat like 5 hard gingin candies daily.
In context ↗ - switched birth control methods · Helped a lot
I had horrible insomnia for about 6 months but that drastically improved soon after I switched birth control methods.
In context ↗ - probiotics · Helped
I also oddly feel like probiotics and improving my diet helped as well.
In context ↗ - B12 · Helped
things like B12 and coq10 will give me a boost in energy, but it doesn't actually prevent fatigue if I push myself
In context ↗ - CoQ10 (Qunol gummy) · Helped
I take the Qunol gummy Coq10 with a high fat meal and I handle it ok.
In context ↗ - stopping activity as soon as tired or weak · Helped
I now find a good measure for not over doing it is stopping immediately when I start to feel even slightly tired or weak.
In context ↗ - Advil · Helped
I'd recover in 24 hours if I chugged Pedialyte, took Advil, slept, and ate yogurt/chicken/potatoes.
In context ↗ - minimally processed low carb/sugar, high protein diet · Helped
Eating minimally processed low carbs/sugar and high protein does make me feel a little bit better.
In context ↗ - compression socks / garments · Helped
It's much better with 2 layers of strong compression socks
In context ↗ - electrolytes (Liquid IV, Pedialyte) · Helped
Electrolytes also make a huge difference in how 'dead' I'm feeling.
In context ↗ - lymphatic drainage massage · Helped
Lymphatic drainage massage and pushing fluids seems to help a bit.
In context ↗ - heating pad · Helped
before I was diagnosed and medicated, I was glued to a heating pad and it really helped settle my stomach.
In context ↗ - ice pack · Helped
recently I've also been finding an ice pack helps sometimes as well, especially for IBS like GI issues
In context ↗ - Ensure nutrition drinks · Helped
it kept me from needing a feeding tube
In context ↗ - peppermint and chamomile · Helped
Other things that also help are peppermint, chamomile, lemon water
In context ↗ - extended fasting · Not said
I used to do extended fasting because of a gastroparesis as a way to try to deal with my symptoms.
In context ↗ - marijuana · Helped a lot
For 2 years it really helped me, I would feel queasy, smoke, then feel hungry and be able to eat without issue.
In context ↗ - electric trike · Helped
I did get an electric trike last year so I could ride along on walks without wrecking my legs and I absolutely love it.
In context ↗ - potassium pill · Not said
my potassium was low in the ER and they just gave me a pill to take to bump it back up.
In context ↗ - COVID vaccination as treatment · Not said
While they normally make me feel pretty awful
In context ↗
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 |
|---|---|
| October 2024 | pushed too hard at work and exercise plus a mild allergic reaction; exercise tolerance droppedAfter really pushing it in October (too much exercise/work + mild allergic reaction) it felt like my tolerance for moderate exercise really dropped.In context ↗ |
| November 2024 | crashed after hours of chores, legs gave out, went to the ERmy thighs felt like they were melting, I could barely stand and overall I just felt awfulIn context ↗ |
| early 2025 | malaise eased in days, legs recovered over a month; could walk the dog and go to the store if she held backWith lots of rest and TLC, the general malaise mellowed in a few days with my legs slowly recovered over a month.In context ↗ |
| late January 2025 | legs wrecked after trying to move a heavy pantryToday my legs are a wreck; they feel tingly, achy, and extremely weak.In context ↗ |
| 2025 | pulled out of her fatigue after a bad coldthe last time I felt almost normal was after dealing with a bad coldIn context ↗ |
| January 2026 | felt better for about a month, then overdid itI sadly felt better for about a month, then overdid itIn context ↗ |
| April 2026 | still crashing; can barely walk two minutes but rides an electric trikenow I can barely walk for 2 minutesIn context ↗ |
Adverse events
- Metoclopramide (Reglan, Maxolon)“I had to stop Reglan because after 8 years on it I was having some side effects” In context ↗ Side effects
- COVID vaccination as treatment“While they normally make me feel pretty awful” In context ↗ Side effects
- CoQ10 / ubiquinol“I think the only negative is it might make my insomnia a bit worse.” In context ↗ Insomnia from treatment
- Cannabis (THC, marijuana)“Sadly it eventually started making me feel nauseous and uncomfortable so I had to quit.” In context ↗ Gut side effects
- “Oddly I had the exact same sensation at the dentist when they gave me novocaine...with epinephrine.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodFlu-like symptomsGut problemsHeart symptoms & palpitationsMuscle weaknessNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
the PEM was so bad I ended up in the ER
In context ↗ - Sleep problems
I still have insomnia, but I'm getting on average around 6.5 hours of sleep a night
In context ↗ - Muscle weakness
I'm regularly pulling my muscles when I walk around the house or climb stairs
In context ↗ - Neuropathy & tingling
they'll seriously ache, feel tingly, and sometimes oddly it feels like my muscles are twitching
In context ↗ - Pain & fibromyalgia
If I do overdo it, my legs won't just be tired, they'll seriously ache
In context ↗ - Flu-like symptoms
The 'flu' will still happens if I keep pushing myself when I know I shouldn't
In context ↗ - Gut problems
I have IBS/SIBO and they're a big trigger for me
In context ↗ - Heart symptoms & palpitations
That would happen to me a lot even before I got CFS and it's always really scary.
In context ↗ - Anxiety & low mood
I feel like I'm quite anxious lately and it makes it hard to sleep and really chill out
In context ↗