Severe fatigue with ME/CFS for years, much better with carnitine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- several years
- Last post
- Nov 2023
In their words
- Condition: ME/CFS
I have a very severe carnitine deficiency, resulting in a fat oxidation disorder, this causing my chronic fatigue.
In context ↗ - At worst: Severe
I've had severe fatigue for years, was literally dying.
In context ↗ - Now: Much better
Luckily for me, I can take carnitine supplements and be fine most of the time. ... I'm no longer dying/ But what I have is lifelong, and I have to keep taking carnitine supplements or I start dying again.
- Began after: nothing they could name
it's probably primary i.e a genetic defect I was born with (still have to confirm though)
Read from 8 of their posts and comments; links to the 6 this page draws on
Summary
Rain 12954 had severe fatigue for several years and describes themselves as 'literally dying', with every test normal. A doctor took them seriously for five minutes and prescribed carnitine, which they found they need because of a severe carnitine deficiency causing a fat oxidation disorder. They say it saved their life; they take it every few hours or the fatigue returns. They also have asthma and sleep apnea.
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What they tried
What they credit
Also tried
Their words about each treatment
- carnitine supplements · Helped a lot
made an educated guess and happened to prescribe a supplement, that then saved my life
In context ↗ - high-fibre diet · Helped
So I switched to foods with fibre. Brown rice, whole wheat. I have a milkshake every morning with chia seeds which helps satisfy my hunger.
In context ↗
Approaches: Amino acids and carnitine
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 | After |
|---|---|---|
| — | Years of severe fatigue, every test normalI've had severe fatigue for years, was literally dying.In context ↗ | |
| before September 2022 | Doctor guessed a deficiency and prescribed carnitineLuckily for me, I can take carnitine supplements and be fine most of the time.In context ↗ | L-carnitine |
| 2023-11-11 | Still reliant on carnitine every few hoursThat one doctor who took an interest for 5 minutes and prescribed carnitine saved my life, but beyond that I've just been doing researchIn context ↗ |
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I also suffer from asthma and sleep apnea
In context ↗
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