ME/CFS
Severe → relapsedIll 18 months before improving or writing
Bedridden with ME/CFS, improved to moderate, then severe again after surgery
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 18 months
- Last post
- Jun 2025
In their words
- Condition: ME/CFS
I've been dxed for 11 years with ME/CFS via a doctor's exam and a 3-day exercise stress test.
In context ↗ - At worst: Severe
I was bedridden for an entire year because of that. After a year of complete and total rest, I went from almost severe to moderate.
In context ↗ - Now: Relapsed
Yes, a major surgery made me go from moderate to severe
In context ↗
Read from 27 of their posts and comments; links to the 20 this page draws on
Summary
Ill with ME/CFS since about 2012, they pushed through early symptoms and were bedridden for a year, then improved from near-severe to moderate after a year of complete rest. Two COVID infections each set them back for about six weeks before they returned to baseline. In 2025 a major surgery took them from moderate to severe, leaving them lightheaded and needing a walker. Functional medicine care cost hundreds or thousands of dollars.
Ask Miruvor AI
What they tried
What they credit
Also tried
medication for vestibular migraines· Helpedbenzos (valium)· Helped · wore offmelatonin· Helpedeating lots of carbohydrates· Helpedtrazodone· Helpedketo and low carb· Worsedieting for weight loss· Worsevitamin D· Worsemagnesium· Worsecbd· Worseintermittent fasting· Worsetrying to go on as normal· Much worseLDN· Much worseMCT oil· Much worsemajor surgery· Much worsepneumonia vaccine· Not saidDepakote· Not said
Their words about each treatment
- medication for vestibular migraines · Helped
I was able to get help with medication once they figured out what my dizziness was stemming from
In context ↗ - trying to go on as normal · Much worse
I was just progressively getting worse and worse until my body gave out
In context ↗ - complete and total rest · Helped a lot
After a year of complete and total rest, I went from almost severe to moderate
In context ↗ - benzos (valium) · Helped
Benzos help me with dizziness, insomnia, and anxiety, and yet I still regret getting started on them.
In context ↗ - keto and low carb · Worse
I've felt dreadfully ill on keto and low carb.
In context ↗ - LDN · Much worse
It actually made my body and joint pain so much worse
In context ↗ - melatonin · Helped
I take 1mg, never more or it gives me headaches, dizziness, daytime fatigue, nightmares
In context ↗ - dieting for weight loss · Worse
trying to diet for weight loss has harmed me every single time
In context ↗ - MCT oil · Much worse
one time I tried a bit of MCT oil as a supplement and got very sick with flu -like symptoms
In context ↗ - eating lots of carbohydrates · Helped
The higher percent of my calories come from carbs, the more energy I have
In context ↗ - vitamin D · Worse
seemingly innocuous things give me severe insomnia, such as vitamin D (even a pediatric dose)
In context ↗ - magnesium · Worse
or magnesium (supposed to help sleep!)
In context ↗ - cbd · Worse
cbd does the opposite now of what it's meant to, it makes me nauseated and causes severe insomnia
In context ↗ - trazodone · Helped
I take valium, trazodone, and melatonin every night.
In context ↗ - intermittent fasting · Worse
The only other thing I can think of that wrecked my sleep, meds or not, was being on a very low-calorie diet or intermittent fasting.
In context ↗ - pneumonia vaccine · Not said
he had me take a pneumonia vaccine to test my antibodies
In context ↗ - Depakote · Not said
plus having to take Depakote due to migraines
In context ↗ - major surgery · Much worse
a major surgery made me go from moderate to severe
In context ↗
Approaches: Radical rest
Their path
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| c. 2012 | came down with ME, kept pushing on as normal for about six monthsI didn't realize what I had for about six months and desperately tried to go on as normal.In context ↗ | Mild | |
| about six months after onset | body gave out and was bedridden for a yearI was bedridden for an entire year because of that.In context ↗ | Severe | |
| about two and a half years in | went from almost severe to moderate after a year of complete restAfter a year of complete and total rest, I went from almost severe to moderate.In context ↗ | Moderate | Radical rest |
| 2025 | crashed after a major surgery, went from moderate to severeYes, a major surgery made me go from moderate to severe.In context ↗ | Severe | |
| 2025-06-30 | still severe three months after surgery, unsteady and needing a walkerNow my legs always feel like jello and I'm too lightheaded to walk around much without a walker.In context ↗ | Severe |
Adverse events
- Diazepam (Valium)“I can't get off even the small dose I'm on without unbearable withdrawal” In context ↗ Withdrawal problems
- Keto and low-carb diets“By the late evening, I had severe dizziness, was almost too weak to stand, and was having violent intestinal issues if you get my drift.” In context ↗ Made symptoms worse
- Low-dose naltrexone“My body aches got 10 times worse, and it was horrifying because I never thought to blame the LDN.” In context ↗ Made symptoms worse
- Keto and low-carb diets“I've tried keto and low carb and my body behaves as if I haven't eaten at all and I get violently ill and dizzy as it triggers my vestibular migraines.” In context ↗ Made symptoms worse
- Keto and low-carb diets“I've felt dreadfully ill on keto and low carb.” In context ↗ Made symptoms worse
- Melatonin“I take 1mg, never more or it gives me headaches, dizziness, daytime fatigue, nightmares” In context ↗ Side effects
- “I know trying to diet for weight loss has harmed me every single time” In context ↗ Made symptoms worse
- Low-dose naltrexone“It actually made my body and joint pain so much worse ... I got so much sicker overall.” In context ↗ Made symptoms worse
- MCT oil“I tried a bit of MCT oil as a supplement and got very sick with flu -like symptoms” In context ↗ Made symptoms worse
- Vitamin D and sun exposure“seemingly innocuous things give me severe insomnia, such as vitamin D (even a pediatric dose) or magnesium (supposed to help sleep!)” In context ↗ Insomnia from treatment
- Magnesium“seemingly innocuous things give me severe insomnia, such as vitamin D (even a pediatric dose) or magnesium (supposed to help sleep!)” In context ↗ Insomnia from treatment
- CBD (cannabidiol)“cbd does the opposite now of what it's meant to, it makes me nauseated and causes severe insomnia” In context ↗ Insomnia from treatment
- Diazepam (Valium)“I'm pretty much in a daze every day from taking both” In context ↗ Side effects
- Trazodone (Desyrel)“I hear you about the trazodone hangover. I'm pretty much in a daze every day from taking both” In context ↗ Side effects
- Intermittent fasting“The only other thing I can think of that wrecked my sleep, meds or not, was being on a very low-calorie diet or intermittent fasting.” In context ↗ Insomnia from treatment
- Diazepam (Valium)“Coming off of them has been impossible so far.” In context ↗ Withdrawal problems
- Diazepam (Valium)“They don't benefit me and haven't for a long time, I just have to take them to avoid withdrawals.” In context ↗ Withdrawal problems
- Valproate (Depakote, Epilim)“I've gained loads of weight with me/cfs due to not being able to move much, plus having to take Depakote due to migraines.” In context ↗ Side effects
- Other surgery (adrenal, lung, venoplasty)“Yes, a major surgery made me go from moderate to severe.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
now the dizziness is more mild when I get PEM
In context ↗ - POTS & dysautonomia
I'm too lightheaded to walk around much without a walker
In context ↗ - Sleep problems
I had to go to a sleep specialist for my extreme insomnia.
In context ↗ - Pain & fibromyalgia
My joints ache terribly in the humidity
In context ↗ - Headaches & migraine
I ended up developing vestibular migraines after coming down with ME
In context ↗ - Brain fog
almost drunk/terrible brain fog
In context ↗ - Anxiety & low mood
Benzos help me with dizziness, insomnia, and anxiety
In context ↗ - Temperature regulation
I feel so much more ill during warmer months and when the humidity is high
In context ↗ - Muscle weakness
Now my legs always feel like jello
In context ↗
Ask Miruvor AI
Similar stories
-
Almost bedridden with ME/CFS, now much better after a specialist regimen and pacing
A California woman infected with COVID in March 2020 was sick six months, partly recovered, then relapsed and was almost bedridden by early 2023, unable to drive and sensitive to light and noise. An out-of-pocket ME/CFS specialist regimen of LDN, Abilify,…
-
Unable to walk with long COVID, much better on immunosuppressants and anti-inflammatories
After a third COVID infection they had significant shortness of breath, dizziness, exercise intolerance, tachycardia and hypertension, then became unable to walk and extremely sick for months after hiking and a COVID/flu vaccine. Six months of searching…
-
Bedbound with ME/CFS, now housebound and somewhat better with rest and low-dose naltrexone
After about 1.5 years of ME/CFS with push–crash cycles, they became bedbound for two months in mid-2026, getting up only for the bathroom. They improved slowly with four months of rest, low-dose naltrexone, a beta-blocker, compression and salt/fluids. By…
-
Bedbound with ME/CFS for over a year, now partly better with pacing and LDN
A Dutch long-hauler became ill with COVID in mid-2022 and was bedbound, in bed around the clock, for over a year. Rest and pacing, a 75% vegetable diet that fixed their gut, NAC for brain fog, LDN for PEM and ivabradine for POTS brought slow, partial gains.…