ME/CFS for 15 years with weakness and difficulty walking; tried CoQ10
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 15 years
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
I was diagnosed with CFS around 15 years ago.
In context ↗ - At worst: Moderate
It takes more energy to push a wheelchair then walk myself, even though I’m a fall risk.
In context ↗ - Now: No benefit
Only when I have assistance, I use aids like wheelchairs.
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
Lake 12223 was diagnosed with CFS about 15 years ago and described being weak, with exercise badly tolerated and walking becoming difficult. They reported some improvement from CoQ10. Cortisol prescribed for two years around a decade before left them with a BMI of 30, breathlessness and distress, and they planned surgery to remove belly fat and skin; they used a wheelchair when they had assistance.
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What they tried
Their words about each treatment
- coq10 · Helped
I personally have some improvements with coq10, if you can afford coq10 is a good try.
In context ↗ - cortisol · Not said
Around 10 years ago, a doctor prescribed me cortisol against the CFS. I was on it for 2 years.
In context ↗ - keto · No change
I’ve done keto under Dr lambrecht luc ... It didn’t work on me at all and didn’t have any effects.
In context ↗
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 5 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| around 2009 | diagnosed with CFSI was diagnosed with CFS around 15 years ago.In context ↗ | Not stated | |
| around 2014 | two years on cortisol, weight gain to BMI 30, breathlessness, walking harderAround 10 years ago, a doctor prescribed me cortisol against the CFS. I was on it for 2 years. ... Now my bmi is 30.In context ↗ | Moderate | Hydrocortisone / cortisol |
| 2024-10-14 | some improvement with CoQ10I personally have some improvements with coq10In context ↗ | Moderate | CoQ10 / ubiquinol |
| 2025-01-09 | still needs a wheelchair with assistance and a correctly sized cane; fall riskOnly when I have assistance, I use aids like wheelchairs. ... I used a cane for a while but I need one that’s my size and I don’t have one.In context ↗ | Moderate |
Adverse events
- Hydrocortisone / cortisol“I was skinny before that. Now my bmi is 30. I suffer mentally because of this. I also have related health issues bc of the fat. It's mostly around my belly.” In context ↗ Side effects
- Hydrocortisone / cortisol“I suffer mentally because of this.” In context ↗ Mood or psychiatric effects
- Hydrocortisone / cortisol“I can't breathe well. Clothes are a huge issue. My skin gets irritated bc I have skin flaps.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Muscle weakness
I’m pretty weak but started having a problem walking.
In context ↗ - Breathlessness
I can't breathe well.
In context ↗ - Anxiety & low mood
I suffer mentally because of this.
In context ↗