Bed-bound with ME/CFS as a teen, now much better on a vegan low-carb diet and pregabalin
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 4 years
- Last post
- Aug 2024
In their words
- Condition: ME/CFS
I’ve had CFS since I was 15 aswell
In context ↗ - At worst: Very severe
used to be housebound and bed ridden 24/7 when my diet was different and high in carbs, gluten.
In context ↗ - Now: Much better
I'm moderate now, I actually can go outside, gang out with friends but i'm having PEM afterwards
In context ↗
Read from 47 of their posts and comments; links to the 22 this page draws on
Summary
Maple 60589 had ME/CFS from age 15, mild at first and severe and bed-bound by 17, with daily crashes, pain, IBS, POTS, neuropathy and seizures. A vegan low-carb, gluten-free diet, pregabalin and supplements were credited as they improved to moderate, housebound but able to do school online and go out occasionally. They still had PEM after outings and ongoing pain and neuropathy by August 2024.
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What they tried
What they credit
Also tried
Their words about each treatment
- anti-depressant (for BPD) · Worse
It actually resulted in a crash right away lol and nausea and smh increased apetite for a short time
In context ↗ - pregabalin (Lyrica) · Helped a lot
it’s the best help i’ve ever gotten for CFS, especially for the joint and muscle pain
In context ↗ - vegan, low carb, gluten-free, no sugar diet · Helped a lot
Changing diet def gave me an incredible improvement!!
In context ↗ - fasting · Helped
Another thing that’s helped a ton is fasting
In context ↗ - Vitamin C · Helped
Overall, magnesium, potassium, electrolites, all kinds of vitamin B, also D, C
In context ↗ - Q10 · Helped
i think the 1st time these’ve helped me
In context ↗ - multivitamins in vegan gummies · Helped
i need to buy another Q10 now along w multivitamins, in vegan gummies
In context ↗ - pacing · Helped
Thank you guys for telling me to pace i love all of you <3
In context ↗ - ibuprom (ibuprofen) · Helped
i take ibuprom even besides pregabalin if i have it but it won’t help as much
In context ↗ - ginger tea · Worse
Overall ginger makes my stomach more irritated.
In context ↗ - smoking a juul (nicotine) · Much worse
I’ve even already tried for example smoking a juul and I’ve had the worst crash of my life that felt like dying
In context ↗ - Wellbutrin · Helped
Wellbutrin is another thing i’m taking-once a day and it gives me more energy
In context ↗ - L-theanine + L-tyrosine · Helped
L-theanine gives such a great kick on energy
In context ↗ - more salt in food · Helped
fasting, vitamins, pregabalin and wellbutrin, more salt in my food
In context ↗ - lamotrix (lamotrigine) · Helped
i take 100mg of lamotrix now and i get seizures rarely now
In context ↗ - anti-IBS medication · Helped
Have u tried getting anti-IBS meds prescribed by ur doctor?? This one’s helped a ton too
In context ↗ - biotine · Helped
I remember biotine helping me aswell
In context ↗ - physiotherapy · Not said
When it comes to the joint pain, then lyrica and physiotherapy!!
In context ↗
Approaches: POTS medication · Amino acids and carnitine · Diet · Other antidepressants · Other drugs and medicines · Pacing · Supplements
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| age 15 | CFS began, mildI’ve had CFS since I was 15 aswellIn context ↗ |
| age 17 | CFS became severe and bed-boundwas mild until I was 17 and then it got severeIn context ↗ |
| 2022-09 | worsened while binging on spoiled food amid abuseAnd got worse overall..In context ↗ |
| 2023-02 | diet change improved from bedridden to moderateI went from bed ridden with more severe PEM to moderate CFS.In context ↗ |
| 2023-12 | able to go outside and see friends, with PEM afterwardsI'm moderate now, I actually can go outside, gang out with friends but i'm having PEM afterwardsIn context ↗ |
| 2024-04 | school online; fewer crashes, housebound, occasional outingsI’ve barely been having crashes now ... But I don’t get PEM from everyday activitiesIn context ↗ |
Adverse events
- Antidepressants (unspecified), Bupropion (Wellbutrin)“It actually resulted in a crash right away lol and nausea and smh increased apetite for a short time” In context ↗ Made symptoms worse
- Antidepressants (unspecified), Bupropion (Wellbutrin)“It also hit me with big derealization and depersonalization.” In context ↗ Mood or psychiatric effects
- Antidepressants (unspecified), Bupropion (Wellbutrin)“you fall to the back snd can't even crawl which has happened to me after my 1st med” In context ↗ Made symptoms worse
- Pregabalin (Lyrica)“not a single side effect [maybe only triggering derealization]” In context ↗ Mood or psychiatric effects
- Pregabalin (Lyrica)“it makes you gain weight like crazy” In context ↗ Side effects
- Ginger“the effect was way opposite.. Overall ginger makes my stomach more irritated” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
But ofc, after I go out and get home, I do have crashes afterwards.
In context ↗ - POTS & dysautonomia
But i also have co-morbid POTS
In context ↗ - Pain & fibromyalgia
my muscle and joint pain is unbearable
In context ↗ - Neuropathy & tingling
I have neuropathy aswell
In context ↗ - Anxiety & low mood
I have Borderline personality disorder [BPD], depression, anxiety.
In context ↗
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