ME/CFS
Severe → near normal
ME/CFS at worst unable to walk, now nearly back to normal after vitamin D and iodine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Feb 2021
In their words
- Condition: ME/CFS
I feel like all the things I did that helped with CPTSD triggers the CFS (like exercise).
In context ↗ - At worst: Severe
I was at my worst, month or so ago? Couldn't walk and half my face went numb. I track my energy via steps. Was walking maybe 100 steps a day. 500 on a good day.
In context ↗ - Now: Near normal
Symptoms have disappeared again. I have increased my seaweed (aka Iodine) consumption greatly. ... I think I am light sensitive.
- Began after: stress or burnout
I think my CPTSD and CFS are related as I've had issues my whole life.
Read from 29 of their posts and comments; links to the 23 this page draws on
Summary
A Reddit user on r/cfs who described lifelong health problems with CPTSD and depression. In autumn 2020 they were at their worst, unable to walk and doing about 100 steps a day. Vitamin D brought them to 1,000-2,000 steps, and while in Korea for three months their symptoms disappeared; they walked 15,000-20,000 steps daily. Symptoms returned days after flying back to the US, then disappeared again after they greatly increased iodine (seaweed).
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What they tried
What they credit
Also tried
three months in Korea· Helped a lot · wore offholding hot water for warmth· Helpedwarm cooked leafy vegetables· HelpedAcupuncture· HelpedMassage· HelpedGinger/Ginseng· HelpedGinger/Ginseng· HelpedAerobic type of exercises· Helped · wore offIce bath· Helped · wore offMelatonin· Helpedmeal delivery service· Helpeddrinking collagen· HelpedMore Sleep· No changeRed Light Therapy· No changeAntibiotics· No changeCOQ10· No changeGua Sha· Worsecold spinach drink and raw green leafy vegetables· Worse30 min virtual exercise class, 18,000 steps and tennis· Worseherbal medicine from a Chinese Medical Practitioner· Much worseintermittent fasting· Not saidWeight Lifting· Not said15 minutes of exercise daily (squats, planks)· Not saidfermented foods· Not saidhigher quality mineral water· Not said
Their words about each treatment
- Gua Sha · Worse
Gua Sha = No change but ALL the pain
In context ↗ - cold spinach drink and raw green leafy vegetables · Worse
slowly feeling worse and worse despite no other big changes to my diet
In context ↗ - intermittent fasting · Not said
I've been trying intermittent fasting as well and I like it!
In context ↗ - holding hot water for warmth · Helped
I'm testing the hot water and it gives me enough energy to be mentally aware and responsive.
In context ↗ - warm cooked leafy vegetables · Helped
Eating LOADS of WARM leafy veggies (as recommended by the acupuncturist) = slight change
In context ↗ - Acupuncture · Helped
Acupuncture = Slight changes to the point I may be imaging it
In context ↗ - Massage · Helped
Massage = Slightly more change than the acupuncture. Again may be imagining it
In context ↗ - herbal medicine from a Chinese Medical Practitioner · Much worse
I did take some herbal medicine from a Chinese Medical Practitioner that made me far far worse.
In context ↗ - More Sleep · No change
More Sleep = No change
In context ↗ - Red Light Therapy · No change
Red Light Therapy = No change but I have not been consistent so I will keep trying
In context ↗ - Iron Pills · Helped
I took Iron and it helped a little bit - likely meaning I was somewhat iron deficient.
In context ↗ - Working from home · Helped
Working from home = Medium improvement
In context ↗ - Ginger/Ginseng · Helped
Ginger/Ginseng = Slight change
In context ↗ - Weight Lifting · Not said
Weight Lifting = No idea because I'm too exhausted in the process.
In context ↗ - Antibiotics · No change
Antibiotics = No idea/No change
In context ↗ - Aerobic type of exercises · Helped
Aerobic type of exercises = Temporary relief that quickly fades.
In context ↗ - salt and water · Helped
I managed to increase my water weight by 2% and I had a lot more energy.
In context ↗ - Ice bath · Helped
I tried one yesterday after feeling at my worst for over a week. I did feel a lot better afterwards but it didn't last.
In context ↗ - 15 minutes of exercise daily (squats, planks) · Not said
I try to exercise for 15 minutes every day. Like squats or planks.
In context ↗ - scheduling rest days (pacing) · Helped
I schedule meetings on one day and schedule barely anything the very next day. This has helped a lot.
In context ↗ - COQ10 · No change
I had been taking COQ10 for the prior week and I thought it was a sudden instant effect!
In context ↗ - Melatonin · Helped
my body is very responsive to melatonin. I will be completely exhausted and incoherent but cannot fall asleep unless I take melatonin.
In context ↗ - Vitamin D · Helped
Started taking Vit D. Daily Steps have gone up to 1000-2000.
In context ↗ - 30 min virtual exercise class, 18,000 steps and tennis · Worse
Monday/Tuesday I'm crashing HARD. I'm so sad. It's my fault for pushing myself but I was just happy to be enjoying life.
In context ↗ - meal delivery service · Helped
I also recently tried a meal delivery service. ... It actually helped but I'm not sure if it was because I didn't have to use any energy cooking or was it the food itself.
In context ↗ - three months in Korea · Helped a lot
My symptoms completely disappeared, I felt great lost 25 lbs, walked 15-20k steps a day, etc.
In context ↗ - fermented foods · Not said
I was eating a LOT of fermented foods in Korea.
In context ↗ - drinking collagen · Helped
I found that drinking collagen was what brought my age score down the quickest.
In context ↗ - higher quality mineral water · Not said
I bought some higher quality mineral water to test that.
In context ↗ - seaweed (iodine) · Helped a lot
Symptoms have disappeared again. I have increased my seaweed (aka Iodine) consumption greatly.
In context ↗
Approaches: POTS medication · Pacing · 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. 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 | onset of lifelong health problemsI've had issues my whole life.In context ↗ | Not stated | |
| February 2020 | working from home for a week, needing less sleepWorking from home = Medium improvementIn context ↗ | Mild | |
| about September 2020 | lowest point, could not walkI was at my worst, month or so ago? Couldn't walk and half my face went numb. ... Was walking maybe 100 steps a day. 500 on a good day.In context ↗ | Severe | |
| 2020-10-13 | steps rose after taking vitamin DStarted taking Vit D. Daily Steps have gone up to 1000-2000.In context ↗ | Moderate | Vitamin D and sun exposure |
| 2020-10-13 | crashed after an exercise class, 18,000 steps and tennisMonday/Tuesday I'm crashing HARD. I'm so sad. It's my fault for pushing myself but I was just happy to be enjoying life.In context ↗ | Severe | |
| 2020-12-21 | more energy and longer walks in KoreaI have a lot more energy and can walk much farther distances.In context ↗ | Mild | Relocation and environmental change |
| early 2021 | symptoms cleared during three months in Korea, 25 lbs lostMy symptoms completely disappeared, I felt great lost 25 lbs, walked 15-20k steps a dayIn context ↗ | Near normal | Relocation and environmental change |
| 2021-02-04 | symptoms returned after flying back to the USI'm sleeping more, I was seeing double when I woke up, feeling dizzy, fatigued, I had to sit while brushing my teeth because I couldn't standIn context ↗ | Moderate | |
| 2021-02-05 | symptoms disappeared again after greatly increasing iodineSymptoms have disappeared again. I have increased my seaweed (aka Iodine) consumption greatly.In context ↗ | Near normal | Iodine |
Adverse events
- Gua sha“Gua Sha = No change but ALL the pain” In context ↗ Side effects
- Chinese herbal medicine (TCM formulas)“I did take some herbal medicine from a Chinese Medical Practitioner that made me far far worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
I usually crash the next day and go back to 100-500 steps for 1-2 days.
In context ↗ - Brain fog
My memory is horrible right now
In context ↗ - POTS & dysautonomia
feeling dizzy, fatigued, I had to sit while brushing my teeth because I couldn't stand
In context ↗ - Sleep problems
I will be completely exhausted and incoherent but cannot fall asleep unless I take melatonin
In context ↗ - Light & noise sensitivity
I think I am light sensitive. I hate summer time and feel the best when the sky is gray.
In context ↗ - Anxiety & low mood
I have had high functioning depression for most of my life
In context ↗ - Muscle weakness
I'm too weak to pick up the heavy pot
In context ↗ - Flu-like symptoms
My lymph nodes were also super swollen last night.
In context ↗ - Vision problems
I was seeing double when I woke up
In context ↗ - Temperature regulation
I don't tolerate heat very well at all
In context ↗ - Neuropathy & tingling
Couldn't walk and half my face went numb
In context ↗ - Pain & fibromyalgia
Gua Sha = No change but ALL the pain
In context ↗
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