ME/CFS
Severe → no benefitIll for 20 years
Mostly in bed with ME/CFS and worsening flares; diet and acupuncture no overall benefit
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 20 years
- Last post
- Apr 2026
In their words
- Condition: ME/CFS
I was diagnosed w Fibromyalgia, CFS, EBV, other autoimmune immune disorders are still coming to light
In context ↗ - At worst: Severe
I am 45 F wasting away in bed w no doctor that will see me sooner than almost a year
In context ↗ - Now: No benefit
I am getting worse w debilitating symptoms, sensitivity to light, sounds, smells
In context ↗ - Began after: glandular fever or EBV
I had mono when I was a child, and it being the cause of so much chronic pain and fatigue
In context ↗
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
A 45-year-old woman diagnosed with ME/CFS about 20 years ago, after childhood glandular fever, and later with lupus, fibromyalgia and fatty liver. She was mostly in bed and getting worse, with flares of fever, swollen glands, light and sound sensitivity, dizziness, tinnitus and nausea. A plant-based anti-inflammatory diet, juices, water and supplements helped her gut and mental clarity, and acupuncture helped with migraines.
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What they tried
Also tried
probiotics· Helped a lotanti inflammatory diet· Helpedsupplements· Helpedacupuncture· Helpedheart rate up 15-20 mins a day· Helpedyoga, stretching· HelpedTai chi· Helpedmedication for pain management· No changemirena IUD· Worsevitamin D· Not saidvitamin C· Not said
Their words about each treatment
- anti inflammatory diet · Helped
I switched to a anti inflammatory diet, just eating more clean, plant based and pressed juices and tons of water
In context ↗ - vitamin D · Not said
I have always been vitamin D deficient do I take that a daily vitamin
In context ↗ - vitamin C · Not said
I take that a daily vitamin and vitamin C, and probiotics have helped tremendously w gut health
In context ↗ - probiotics · Helped a lot
probiotics have helped tremendously w gut health
In context ↗ - mirena IUD · Worse
I also think getting the mirena IUD made things worse for me I have more fibroids again and no libido or energy 3 weeks out of a month!
In context ↗ - supplements · Helped
I highly recommend doing the diet and supplements have helped!
In context ↗ - medication for pain management · No change
I have medication for pain management that doesn’t even work a lot of times, and that’s been in jeopardy since the opioid crisis
In context ↗ - acupuncture · Helped
acupuncture has also been helpful w migraines
In context ↗ - heart rate up 15-20 mins a day · Helped
we have to try to get our heart rate up 15-20 mins a day for me that’s easy since I’m out of shape lol
In context ↗ - yoga, stretching · Helped
some yoga, stretching and using my own weight is enough
In context ↗ - Tai chi · Helped
Tai chi, essential oil infusers, anything that is natural ... all this is helpful for me
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| childhood | glandular fever (mono) in childhood, blamed for chronic pain and fatigueI had mono when I was a child, and it being the cause of so much chronic pain and fatigueIn context ↗ | Not stated | |
| — | switched to an anti-inflammatory plant-based diet, juices and supplements; gut health and mental clarity improvedthe pressed juices and bone broth are major things that help my gut healthIn context ↗ | Severe | Anti-inflammatory diet |
| 2026-04-09 | still worsening and largely in bed, with light, sound and smell sensitivity, dizziness, tinnitus and nauseaI am getting worse w debilitating symptoms, sensitivity to light, sounds, smellsIn context ↗ | Severe |
Adverse events
- IUD (hormonal or copper)“I also think getting the mirena IUD made things worse for me I have more fibroids again and no libido or energy 3 weeks out of a month!” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogFlu-like symptomsGut problemsHeadaches & migraineLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
it doesn’t have to be anything crazy that will send me into a flare, and boom instantly taken out for longer periods of time
In context ↗ - Brain fog
Water water water! It helps w mental clarity and keeps me full
In context ↗ - POTS & dysautonomia
fever, swollen lymph nodes, dizziness, tinnitus, nausea, sweating/cold
In context ↗ - Light & noise sensitivity
sensitivity to light, sounds, smells
In context ↗ - Temperature regulation
I get fevers especially when I’m in a flare up
In context ↗ - Flu-like symptoms
the pain I feel the flu like symptoms
In context ↗ - Pain & fibromyalgia
it being the cause of so much chronic pain and fatigue
In context ↗ - Headaches & migraine
acupuncture has also been helpful w migraines
In context ↗