ME/CFS
Very severe → near normalIll 1 year before improving or writingNeeds ongoing treatment
Bedbound with ME/CFS as a teen, now nearly back to normal after pacing and chiropractic
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 1 year
- Last post
- Sep 2023
In their words
- Condition: ME/CFS
I had ME/CFS onset about 10 years ago so before Covid.
In context ↗ - At worst: Very severe
At my lowest, I was bed-bound, unable to experience external stimuli (sound, light, etc.) without feeling immense pain, crawled to the bathroom as my daily exercise, had my mother bathe me
In context ↗ - Now: Near normal
Yes, I can workout daily. I’m basically recovered but I know to listen to my body ... Mostly recovered, just need a nap during the day.
- Began after: another virus
I caught a cold and tried to sleep it off over winter break.
In context ↗ - Says they never had: Anxiety & low mood
I wasn't depressed because I wanted to get better
Read from 26 of their posts and comments; links to the 18 this page draws on
Summary
They fell ill at 13 after a cold and became bed-bound, unable to tolerate light or sound and needing help to the bathroom. Pacing, a strict sleep schedule, a gut-healthy diet with Betaine HCl and kefir, and later NUCCA chiropractic brought gradual improvement. They were nearly 90% recovered after four years and by 2023 could walk 10,000 steps daily, still needing a nap and set back by COVID reinfections.
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What they tried
What they credit
Also tried
Milk Thistle· Helpedacceptance and gratitude· Helpedgut healthy diet· HelpedSt. John’s Wort· Helpedmassage tool· HelpedPrednisone· No changeantibiotics· Not saidfish oil· Not saidred light· Not saideating within an 8 hr window· Not said
Their words about each treatment
- antibiotics · Not said
I had h. pylori bacteria in my stomach and was treated with antibiotics.
In context ↗ - Betaine HCl · Helped
When my dad gave me a digestive enzyme supplement, Betaine HCl, to eat with food I literally thought wow I didn't know how much abdominal pain I had
In context ↗ - Milk Thistle · Helped
Milk Thistle helped me and my mother with our sleep problems.
In context ↗ - sticking to a sleep schedule · Helped
The thing that helped me most was sticking to a schedule.
In context ↗ - pacing · Helped
I found pacing myself has been one of the keys to recovery.
In context ↗ - breathing work · Helped
Whenever I felt I was going to pass out, I would close my eyes just focus on my breath.
In context ↗ - acceptance and gratitude · Helped
I found hope in being grateful for the things I did have
In context ↗ - chiropractic care · Helped
In 2015, I discovered chiropractic care. ... I gained greater mobility in my neck and could feel more blood rush to my brain.
In context ↗ - gut healthy diet · Helped
I would say my current diet is no processed foods, no added sugar, veggies, seafood at least twice a week, beef or some other meat every other day, bone broth every day
In context ↗ - probiotics, kefir and gut healing foods · Helped
Taking probiotics, betaine, homemade kefir and other gut healing foods have allowed me to get the proper nutrition from my foods and in turn slowly recover.
In context ↗ - Prednisone · No change
Prednisone because I had very stiff joints and difficulty moving. But I don’t think it really helped.
In context ↗ - vitamin D with K · Helped
also vitamin D with K is super important. I had very low levels of vitamin D when I was very ill
In context ↗ - fish oil · Not said
I also take fish oil and ashwagandha which is an adaptogen that helps your body relieve stress.
In context ↗ - ashwagandha · Helped
things that really pushed my body to go into healing mode vs. inflammatory mode were NUCCA adjustments/aligned spine and ashwagandha to relieve stress
In context ↗ - exercise/movement · Helped
I try to move everyday, and slowly increased the amount of time and intensity depending on if I felt strong enough to do so.
In context ↗ - St. John’s Wort · Helped
I tried St. John’s Wort which I think was one of the few supplements that actually did make me fall asleep, but I stopped taking it because it made me nauseous.
In context ↗ - NUCCA chiropractor · Helped a lot
Going to a NUCCA chiropractor has been a game changer. ... I hardly have back pain anymore.
In context ↗ - massage tool · Helped
I got a massage tool from Cosco that is of great help when I have areas of stiffness/soreness.
In context ↗ - red light · Not said
I just got a red light, so I’ll see if I experience any benefits.
In context ↗ - eating within an 8 hr window · Not said
I try to eat within an 8 hr window so like 10 am-6pm, and I don’t usually snack on between meals.
In context ↗
Approaches: Alternative therapies · Mind-body practices · Pacing · Radical rest · Supplements
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2014 | caught a cold at age 13 and did not recoverI caught a cold and tried to sleep it off over winter break.In context ↗ | Mild |
| 2014 | bed-bound, unable to tolerate light or sound, bathed by her motherAt my lowest, I was bed-bound, unable to experience external stimuli (sound, light, etc.) without feeling immense pain, crawled to the bathroom as my daily exercise, had my mother bathe meIn context ↗ | Very severe |
| 2015 | chiropractic care and spine adjustments improved neck mobilityIn 2015, I discovered chiropractic care. ... By getting my spine adjusted and doing therapies, I gained greater mobility in my neckIn context ↗ | Severe |
| about 1 year after focusing on healing | gradual improvement, could go back to school but trouble exercisingI started seeing gradual improvement within 1 year. Meaning I could go back to school, but still had trouble exercising.In context ↗ | Mild |
| 2018-01-23 | nearly 90% recovered, attending school daily and socialisingI am nearly 90% recovered from CFS ... I can attend school everyday, do my homework, and socialize with my friends.In context ↗ | Near normal |
| before 2023 | COVID-19 infections brought back numbness, palpitations, brain fog and weaknessThe reinfections definitely set me back.In context ↗ | Moderate |
| 2023-09-09 | basically recovered, exercises daily, still needs a napMostly recovered, just need a nap during the day. ... I'm able to walk 10,000 steps or do 45 minutes of yoga before I start to get tired. | Near normal |
Adverse events
- St John's Wort“I tried St. John’s Wort which I think was one of the few supplements that actually did make me fall asleep, but I stopped taking it because it made me nauseous.” In context ↗ Gut side effects
Symptoms mentioned
Brain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
if I walked 15 minutes I could be stuck in bed for the next week
In context ↗ - Brain fog
I had to relearn how to read, write, and speak
In context ↗ - POTS & dysautonomia
I've experienced this and it can make it that much more difficult to seek help
In context ↗ - Sleep problems
years of insomnia (since I was 5)
In context ↗ - Pain & fibromyalgia
heart palpitations, insomnia, fatigue, muscle/bone pain
In context ↗ - Headaches & migraine
explain all the neurological symptoms and headaches I was experiencing
In context ↗ - Gut problems
Symptoms included stomach pain, nausea, heartburn, bloating, constipation
In context ↗ - Light & noise sensitivity
unable to experience external stimuli (sound, light, etc.) without feeling immense pain
In context ↗ - Breathlessness
my heart palpitations, insomnia, fatigue, muscle/bone pain, shortness of breath, and inability to walk
In context ↗ - Heart symptoms & palpitations
heart palpitations, and general sense of brain fog and weakness
In context ↗ - Muscle weakness
I was too tired to speak, and soon was unable to walk.
In context ↗ - Neuropathy & tingling
such as numbness in my extremities
In context ↗ - Vision problems
my astigmatism is better
In context ↗
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