Bedbound by an ME/CFS crash, now somewhat better with thiamin and magnesium
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 14 years
- Last post
- Aug 2021
In their words
- At worst: Severe
I was spending most of my time in bed when I started because standing/sitting gave me PEM
In context ↗ - Now: Somewhat better
now I am able to go for walks in nature every week and stand up to make meals and do dishes and go grocery shopping—so huge!
In context ↗ - Says they never had: Pain & fibromyalgia
when I developed CFS at age 16, I never got the pain other CFS patients experience
Read from 26 of their posts and comments; links to the 17 this page draws on
Summary
A Reddit user who developed CFS at 16 was bedbound by a crash and POTS flare-up in February 2020 and could not finish college coursework. From March 2020 high-dose thiamin (3 g daily, with magnesium) brought a profound improvement, with better energy, digestion and appetite. Oral rehydration solution later pulled them out of a bedbound crash, leaving them able to walk weekly and cook. They lost 100 lb on a low-vitamin-A diet.
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What they tried
What they credit
Also tried
Their words about each treatment
- cod liver oil and vitamin A supplements · Much worse
Vitamin A made me extremely sick (I developed hypervitaminosis A).
In context ↗ - eMoods app · Helped
I have used it for a year to help me dose supplements and such. Very helpful thing to do.
In context ↗ - High Dose Thiamin Therapy (thiamin HCL) · Helped a lot
my CFS/POTS symptoms have been responding well to HDT therapy ... there have been remarkable changes
In context ↗ - magnesium · Helped
Magnesium can be great, though.
In context ↗ - amino acid supplements · No change
For me, amino acid supplements did nothing.
In context ↗ - riboflavin (B2) · Helped
I notice deeper sleep when I take vitamins B1 and B2.
In context ↗ - biotin · Helped
as well as taking smaller amounts of riboflavin, biotin, niacin, and inositol ... B vitamins have been amazing for me
- inositol · Helped
I also supplemented with inositol (for PCOS), which may have been another positive factor.
In context ↗ - eating more calories · Helped
When I forced myself to eat a much higher number of calories every day, I ended up sleeping for like four months straight.
In context ↗ - whole foods diet / nutrition · Helped
I got back into nutrition and that has made such a difference in my general health (PCOS is better now).
In context ↗ - therapist · No change
Oh yeah, my therapist was useless. Didn’t understand at all.
In context ↗ - Pacing · Helped
For me, personally (after trying dozens of alternative approaches in the 1.5 decades I have had CFS/ME): 1. Pacing
In context ↗ - Low Vitamin A Diet (Grant Genereux) · Helped
Low Vitamin A Diet - This is extremely experimental, and has not cured my CFS/ME or anything, but it has improved my digestive troubles and low appetite and reversed my PCOS
In context ↗ - Keto · No change
It did not help me, but I am not sensitive gluten.
In context ↗ - Oral Rehydration Solution · Helped a lot
it made SUCH a difference ... It pulled me out of my most recent major CFS crash (bedbound situation)
In context ↗ - dairy-free diet · Helped
I do not eat dairy because it exacerbates all my symptoms severely
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, with time counted from when the illness began. Hover or tap a point. The chart starts 13.8 years after onset: the story doesn’t say how ill they were before that. 1 step has no time and sits in story order between the steps around it. 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 |
|---|---|---|---|
| age 16 | developed CFS/ME as a teenagerwhen I developed CFS at age 16, I never got the pain other CFS patients experience, just POTS and fatigue and brain fogIn context ↗ | Not stated | |
| February 2020 | bedbound with a CFS crash and POTS flare-upI was completely bedridden in February with a CFS crash and POTS flare-up and couldn’t complete my college coursework due to brain fogIn context ↗ | Severe | |
| 2020-05-11 | gentle walk and sitting up socializing without PEM after starting high-dose thiaminI went for a gentle walk this afternoon and did a lot of socializing sitting upright, and I can still read and write afterwardsIn context ↗ | Mild | Thiamine / benfotiamine |
| — | major CFS crash, bedboundIt pulled me out of my most recent major CFS crash (bedbound situation)In context ↗ | Severe | |
| 2021-05-30 | weekly walks, standing to cook and grocery shopping after starting oral rehydration solutionnow I am able to go for walks in nature every week and stand up to make meals and do dishes and go grocery shopping—so huge!In context ↗ | Moderate | Salt, electrolytes and fluids |
Adverse events
- “Vitamin A made me extremely sick (I developed hypervitaminosis A).” In context ↗ Side effects
- “when eating 8000%+ the RDA of vitamin A, I experienced INSANE levels of panic every night, which of course caused insomnia and made all my symptoms far worse” In context ↗ Mood or psychiatric effects
- Pacing and the energy envelope“got comfortable with pacing. That was really freeing in some ways, but it made my health worse in general (I developed PCOS)” In context ↗ Other
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I was spending most of my time in bed when I started because standing/sitting gave me PEM
In context ↗ - Brain fog
couldn’t complete my college coursework due to brain fog
In context ↗ - POTS & dysautonomia
I have CFS with mild POTS, and the ORS basically reduces my “nap attacks”
In context ↗ - Sleep problems
I used to have chronic insomnia
In context ↗ - Gut problems
it has improved my digestive troubles and low appetite
In context ↗ - Anxiety & low mood
I suffered from suicidal depression and episodes of hypomania for 7 years, and have now completely recovered without medication
In context ↗ - Neuropathy & tingling
that crawling, tingling, heated pressure that makes my brain feel like it’s in a sauna
In context ↗
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