Bedridden with ME/CFS, now recovered on spironolactone and hydrocortisone
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 28 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I had been dx with CFS at 20. ... I recovered from 28 years of severe CFS
- At worst: Severe
if you lower my dose to where I am bedridden and exhausted suddenly I have CFS again?
In context ↗ - Now: Recovered
All of cfs my symptoms are gone. I can exercise with no PEM.
In context ↗ - Began after: nothing they could name
I never had an infectious trigger for my fatigue, it just happened overtime to the point where I couldn't function.
Read from 63 of their posts and comments; links to the 18 this page draws on
Summary
Patricia was diagnosed with CFS at 20 and was ill for about 28 years with unrefreshing sleep, brain fog, pain and PEM, plus a COVID illness in February 2020 that left her unable to think for months. Hydrocortisone at 30 let her work and travel, but a lowered dose at 46 left her bedridden. In 2026, spironolactone 25mg with hydrocortisone, LDN, thyroid and a GLP-1 cleared her symptoms; she exercised without PEM.
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What they tried
What they credit
Also tried
Their words about each treatment
- Pacing · Not said
Pacing was a necessity. I did it my whole life.
In context ↗ - adrenal support supplements · Not said
I went through 10 yrs of supporting my adrenals with supplements, lifestyle changes (yes, rest)
In context ↗ - Armour Thyroid · Helped
making sure my thyroid, ferritin, and b12 were optimal
In context ↗ - cortisol replacement (hydrocortisone) · Helped
For a time, I was taking cortisol replacement and it fixed this and gave me morning energy
In context ↗ - wine · Helped
I feel more energetic after a small amount of wine while I’m drinking
In context ↗ - Modafinil · Helped
Modafinal helps me on days when I need more mental clarity.
In context ↗ - Testosterone pellets · Helped
Testosterone pellets helped my energy. It’s like this secret furnace of vitality that when it clicks in (for me weeks after the pellet inset) just makes things more doable.
In context ↗ - LDN (low-dose naltrexone) · Helped
Found that I do better on .5 (tried 1.5 and 3 but it was too much for me). It takes away that feeling that I have been beaten by gremlins with tiny bats when I wake up.
In context ↗ - low dose ketamine (Joyous) · Helped
I’ve only done it 4 days (joyous) and it’s freaking amazing in combating PEM.
In context ↗ - GLP1 · Helped
LDN and GLP1 for anti inflammatory are very helpful.
In context ↗ - Spironolactone (Spiro) · Helped a lot
I got full symptom resolution of CFs symptoms on Spiro.
In context ↗ - Cetirizine (Zyrtec) · Not said
there is a prescription allergy pill (not Zyrtec) that knocked me on my butt
In context ↗ - Fludrocortisone / Florinef · Worse
NO! Absolutely not. Fludro makes it worse.
In context ↗
Approaches: GLP-1 drugs · Hormones & thyroid · Thyroid hormones
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 10 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 |
|---|---|---|
| age 20 | diagnosed with CFSI had been dx with CFS at 20.In context ↗ | Not stated |
| age 30 | adrenals gave out, started hydrocortisone; able to work and travelAt 30 my adrenal glands gave out and I was given some hydocortisone replacement. I functioned okay, nit perfect, but enough to work and travel.In context ↗ | Mild |
| February 2020 | COVID infection, months off workI had to take time off work in the months that followed because I couldn't think.In context ↗ | Moderate |
| age 46 | hydrocortisone dose lowered, bedridden and exhaustedAt 46 I had to lower HC dose with different dx and was exhausted.In context ↗ | Severe |
| May 2026 | started spironolactone, restorative sleep within daysI saw improvements on Spironolactone within the first few days.In context ↗ | Mild |
| September 2026 | symptoms gone, exercises without PEMAll of cfs my symptoms are gone. I can exercise with no PEM.In context ↗ | Recovered |
Adverse events
- Low-dose naltrexone“Found that I do better on .5 (tried 1.5 and 3 but it was too much for me)” In context ↗ Made symptoms worse
- Ketamine“I went up to 45mg and felt hungover rather than invigorated.” In context ↗ Side effects
- Spironolactone“So to keep the body from freaking out which is what happened when I was on 200 mg of Spiro (don't do that) ... I took on fluid like crazy.” Side effects
- Cetirizine (Zyrtec)“there is a prescription allergy pill (not Zyrtec) that knocked me on my butt” In context ↗ Side effects
- Fludrocortisone / Florinef“NO! Absolutely not. Fludro makes it worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I have had unrefreshing sleep for so long
In context ↗ - Brain fog
Fixing the inflammation with LDN helped the brain fog.
In context ↗ - Post-exertional malaise
Normally, if I can push myself to go for a walk, I would be tired for days.
In context ↗ - Pain & fibromyalgia
LDN helped so much with achy pain.
In context ↗ - POTS & dysautonomia
the next day I feel like I have less pots like symptoms and more stamina
In context ↗ - Anxiety & low mood
I also had depression. I don't anymore.
In context ↗ - Headaches & migraine
I got a terrible headache, very sick couldn't breathe
In context ↗
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