Severe ME/CFS, unable to walk dog most days, much better on low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
Getting a ME/CFS + fibromyalgia + POTS diagnosis has ended any dreams I had of going pro
In context ↗ - At worst: Severe
Without meds I am severe.
In context ↗ - Now: Much better
I take 6mg and it's been a miracle for me. I was moderate- severe without it. Now I'm mild.
In context ↗
Read from 26 of their posts and comments; links to the 17 this page draws on
Summary
Former competitive cheerleader with ME/CFS, fibromyalgia and POTS who said they were severe without medication, unable to walk their dog 400 m most days and crashed for days after 10 minutes of exercise. Low-dose naltrexone at 6 mg brought them to mild, while 10 mg made them worse; gabapentin, modafinil and a beta blocker helped pain, big days and heart rate. They returned to part-time retail work but still crash after exertion like gaming.
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What they tried
What they credit
Also tried
Their words about each treatment
- Botox · Helped
I get Botox for my migraines and it helps.
In context ↗ - Ubrelvy · Helped a lot
For break through migraines, I take Ubrelvy. It's been a god send.
In context ↗ - baths · Helped
I take baths. It's easier on my body and I can take my time.
In context ↗ - Stanford CFS clinic · Helped a lot
I went from severe to mild-moderate with their help!
In context ↗ - LDN · Helped a lot
I take 6mg and it's been a miracle for me. I was moderate- severe without it. Now I'm mild.
In context ↗ - Visible · Helped
I have the visible band so that helped me track.
In context ↗ - sensory deprivation sessions · Helped
Baths, sensory deprivation sessions (eye mask and noise cancelling headphones), naps, salty foods
In context ↗ - naps · Helped
naps, salty foods (ceviche, pozole, ramen, etc)
In context ↗ - salty foods (ceviche, pozole, ramen, etc) · Helped
salty foods (ceviche, pozole, ramen, etc)
In context ↗ - Pepcid · Helped
Medicine wise LDN with 40mh of Pepcid and modafinil for days I know are going to busy.
In context ↗ - modafinil · Helped
It doesn't help with PEM but it gets me through the day.
In context ↗ - pacing · Helped
I get migraines when I don't pace properly.
In context ↗ - gabapentin · Helped
I take 300mg of gabapentin for the fibromyalgia
In context ↗ - beta blocker · Not said
If I do decide to do yoga or something I take a beta blocker to help with my HR going too high.
In context ↗ - valtrex · No change
When I was first diagnosed they tried me on valtrex. It didn't do anything for me unfortunately.
In context ↗ - daily red bull · Helped
It helps with migraines, doesn't help with energy, but it's delicious.
In context ↗ - Qlipta · Helped
I get Botox, take Qlipta daily, and ubrelvy for any that I get.
In context ↗ - CoQu10 · Helped a lot
CoQu10 helps me a lot. Even before I was diagnosed I noticed that it just made me feel... Stronger??
In context ↗ - glp1 · Helped
It did help my period not hit me so hard but as an already small adult I said I would stop taking it if I went under 105 lbs
In context ↗
Approaches: Other drugs and medicines · Pacing · Stimulants · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 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 |
|---|---|---|---|
| onset | ME/CFS began, ending her competitive cheerleading pathI used to compete in cheerleading at the highest level, CFS is why I didn't try out for Pro League.In context ↗ | Not stated | |
| — | severe when unmedicatedWithout meds I am severe.In context ↗ | Severe | |
| 2026-03-19 | improved from severe to mild-moderate with clinic careI went from severe to mild-moderate with their help!In context ↗ | Moderate | |
| 2026-03-28 | raised LDN to 10 mg and felt worse, went back to 6 mgWent up to 10 and felt worse.In context ↗ | Moderate | |
| 2026-04-23 | mild on medication, living a normal but non-active lifeI have a lot of help from meds so I am mildIn context ↗ | Mild | Low-dose naltrexone |
| 2026-09-28 | able to take a part-time retail jobI'm able to work a part time retail job bc of it.In context ↗ | Mild | Low-dose naltrexone |
| 2026-10-27 | mild on LDN, working part-time, still crashes after exertionI take 6mg and it's been a miracle for me. I was moderate- severe without it. Now I'm mild.In context ↗ | Mild | Low-dose naltrexone |
Adverse events
- Low-dose naltrexone“I was good at 6mg. Went up to 10 and felt worse.” In context ↗ Made symptoms worse
- GLP-1 drugs (unspecified)“I said I would stop taking it if I went under 105 lbs... And it happened within 6 months.” In context ↗ Side effects
- Modafinil / armodafinil“As someone that uses modafinil I can confirm it just borrows happiness from tomrw.” In context ↗ Other
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
10 mins of working out sends me into PEM for days
In context ↗ - Headaches & migraine
I get migraines when I don't pace properly.
In context ↗ - Pain & fibromyalgia
I take 300mg of gabapentin for the fibromyalgia
In context ↗ - POTS & dysautonomia
Getting a ME/CFS + fibromyalgia + POTS diagnosis has ended any dreams I had of going pro
In context ↗ - Heart symptoms & palpitations
I take a beta blocker to help with my HR going too high
In context ↗ - Anxiety & low mood
This is BIG for me mentally bc I also have depression.
In context ↗ - Light & noise sensitivity
Showers are wayy too overstimulating for me.
In context ↗
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