ME/CFS, in bed in constant pain, improved on low-dose naltrexone then worsened
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 20 months
- Last post
- Oct 2025
In their words
- Condition: ME/CFS
I've had cfs for over a year now
In context ↗ - At worst: Severe
Now I'm in bed pretty much all the time, I'm never not in pain, I can't leave my house
In context ↗ - Now: Relapsed
I had finally gotten up to 1.25mg after months of slowly titrating ... now that I've been off it for a week I feel like that time was wasted, and my symptoms have all worsened significantly
In context ↗ - Began after: a bacterial or tick-borne infection
I had a bad sinus infection that lasted over a month and took 2 rounds of antibiotics to get over, and afterward I just never felt the same.
In context ↗
Read from 23 of their posts and comments; links to the 13 this page draws on
Summary
Kite 30374 fell ill in February 2024 after a sinus infection and was diagnosed with ME/CFS, with POTS and EDS. Amantadine, guanfacine and venlafaxine all made them worse. Low-dose naltrexone from June 2025 eased their neuropathy, body pain and sensitivity, but Medicaid stopped covering it in September and their symptoms worsened. By October 2025 they were in bed nearly all the time and in constant pain.
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What they tried
What they credit
Also tried
Their words about each treatment
- antibiotics · Not said
I had a bad sinus infection that lasted over a month and took 2 rounds of antibiotics to get over
In context ↗ - amantadine · Much worse
Amantadine I managed to take for a whole week, but I showed no improvement and my symptoms were really bad, so I stopped.
In context ↗ - guanfacine · Much worse
Guanfacine I lasted a few days, but it was also bad.
In context ↗ - venlafaxine · Worse
Venlafaxine was the worst yet, and I only took it once.
In context ↗ - sprintec · Worse
I have been feeling absolutely horrible since I started it about 11 days ago
In context ↗ - LDN · Helped
I had finally gotten up to 1.25mg after months of slowly titrating
In context ↗ - green tea · Not said
I drink green tea to boost my immune system every day.
In context ↗ - vitamin b12 · Not said
The only prescribed meds I'm currently on are vitamins b12 and d3.
In context ↗ - therapy · Not said
My therapist doesn't know what to do with me because my depression is entirely caused by my failing body.
In context ↗ - accommodating my fatigue in my life and routine · Not said
every time I make a change to my life and routine to accommodate my fatigue, I end up losing my ability to do those things completely and not getting it back
In context ↗ - Stimulants (unspecified) · Worse
My doctor tried a few different adhd medications, but they all made me way worse.
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 6 months 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 |
|---|---|---|---|
| February 2024 | fell ill after a month-long sinus infection and two rounds of antibioticsI had a bad sinus infection that lasted over a month and took 2 rounds of antibiotics to get over, and afterward I just never felt the same.In context ↗ | Not stated | |
| August 2024 | crash after overdoing it: 10 days unable to move, sound and light intoleranceI wasn't able to tolerate any kind of sound or light, I had the worst headaches I've ever had, and I basically couldn't move or do anything for 10 days.In context ↗ | Very severe | |
| November 2024 | amantadine made her more fatigued and worsened symptomsI've been even more fatigued than normal, and my symptoms have increased since I started taking it.In context ↗ | Severe | Amantadine |
| April 2025 | almost entirely bedridden and unable to tolerate stimuliI've been almost entirely bedridden and unable to tolerate stimuli.In context ↗ | Severe | |
| end of August 2025 | LDN eased neuropathy, body pain and stimuli sensitivityAt the end of August I had gotten up to 1.25mg and my neuropathy, body pains, and stimuli sensitivity were way better.In context ↗ | Severe | Low-dose naltrexone |
| September 2025 | insurance stopped covering compounded LDN, symptoms worsened off itnow that I've been off it for a week I feel like that time was wasted, and my symptoms have all worsened significantly.In context ↗ | Severe | Low-dose naltrexone |
| October 2025 | in bed nearly all the time, constant pain, cannot leave the houseNow I'm in bed pretty much all the time, I'm never not in pain, I can't leave my houseIn context ↗ | Severe |
Adverse events
- Amantadine“Honestly I feel like it's making me worse. I've been even more fatigued than normal, and my symptoms have increased since I started taking it.” In context ↗ Made symptoms worse
- Amantadine“I was also completely bedridden and unable to tolerate stimulation while coming off of it, which took about two weeks.” In context ↗ Withdrawal problems
- Guanfacine“Then they had me try guanfacine, and I had exactly the same experience with that. No good side effects, and all my symptoms were far worse.” In context ↗ Made symptoms worse
- Venlafaxine (Effexor)“It made me feel like I was having a non stop pots attack all day long. I was shaky, dizzy, sweaty, super nauseous, my eyesight was blurry, my heart wouldn't stop racing” In context ↗ Made symptoms worse
- Venlafaxine (Effexor)“my anxiety was extremely heightened” In context ↗ Mood or psychiatric effects
- Stimulants (unspecified)“My doctor tried a few different adhd medications, but they all made me way worse.” In context ↗ Made symptoms worse
- Combined birth control (pill, patch or ring)“I have been feeling absolutely horrible since I started it about 11 days ago” In context ↗ Made symptoms worse
- Combined birth control (pill, patch or ring)“I actually ended up at the er yesterday cause my chest started hurting a lot and my heart wouldn't stop racing.” In context ↗ ER visit
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
about 8 days of complete exhaustion and headaches that came a day and a half after a rigorous day
In context ↗ - Brain fog
my brain fog has been so bad
In context ↗ - POTS & dysautonomia
I also have pots and eds
In context ↗ - Heart symptoms & palpitations
My resting heart rate was about 120 all day long
In context ↗ - Light & noise sensitivity
I wasn't able to tolerate any kind of sound or light
In context ↗ - Headaches & migraine
I had the worst headaches I've ever had
In context ↗ - Flu-like symptoms
I started having intense flu like symptoms. Fever of 101, sore throat, cough, painful chills, green mucus etc.
In context ↗ - Temperature regulation
Fever of 101, sore throat, cough, painful chills
In context ↗ - Pain & fibromyalgia
I'm never not in pain
In context ↗ - Neuropathy & tingling
my neuropathy, body pains, and stimuli sensitivity were way better
In context ↗ - Vision problems
my eyesight was blurry
In context ↗ - Muscle weakness
not really being able to pick my head up
In context ↗ - Anxiety & low mood
my depression is entirely caused by my failing body
In context ↗
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