ME/CFS
Severe → no benefitIll for 3 years
Bedbound at times with ME/CFS, now moderate to severe, no benefit from low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 3 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I was diagnosed with ME in December and told I probably also had POTS
In context ↗ - At worst: Severe
I was severe but felt like I was moving towards very severe
In context ↗ - Now: No benefit
I'm mod/severe and I didn't have to get to this point.
In context ↗
Read from 50 of their posts and comments; links to the 30 this page draws on
Summary
Diagnosed with ME/CFS in December 2025, they were bedbound for stretches in early 2026 and later described themselves as moderate to severe. Low-dose naltrexone at 0.5 mg and 0.1 mg caused crashes, rage and despair, and was stopped. Compression socks helped them get out of bed and work on their disability application, and ketotifen helped them walk around the house a little; COVID and flu vaccines in September 2026 left them bedbound for nine days before they began to improve.
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What they tried
Also tried
EMDR· Helped a lotAdult children of alcoholics program· HelpedSE· Helpedhydroxyzine· Helpedpacing· Helpedthigh-high compression socks· Helpedketotifin· HelpedBach rescue pastilles· Helpedice pack· Helpedpaired muscle relaxation· Helpedmeditation· HelpedDBT tools· Helpedself compassion tool· Helpedmagnesium· Helpediron pills· No changeProzac· Worsetalk therapy· WorseLDN· WorseCOVID vaccination as treatment· Worseincreasing salt intake and hydration and electrolytes· Not saidMirena IUD· Not saidChronic Pain Anonymous· Not said
Their words about each treatment
- Prozac · Worse
I'm going off Prozac because it makes me grind my teeth at night, much better on a lower dose
In context ↗ - iron pills · No change
I went through a lot of rounds of iron pills with no improvement before getting menorrhagia diagnosed.
In context ↗ - EMDR · Helped a lot
EMDR combined with the Adult children of alcoholics program helped me a lot. That's mostly inner family work. I went from a PTSD diagnosis to not meeting the criteria for PTSD anymore.
In context ↗ - Adult children of alcoholics program · Helped
EMDR combined with the Adult children of alcoholics program helped me a lot.
In context ↗ - SE · Helped
I got a lot out of SE too
In context ↗ - talk therapy · Worse
I've been having trouble with talk therapy because I have a hard time doing the cognitive work of answering the therapist questions in real time and the emotional surges that happened during therapy take me out.
In context ↗ - hydroxyzine · Helped
Some things that work for me besides pacing and trying to avoid PEM are hydroxyzine
In context ↗ - increasing salt intake and hydration and electrolytes · Not said
haven't had any treatment for POTS except for increasing salt intake and hydration and electrolytes
In context ↗ - thigh-high compression socks · Helped
I got a pair of thigh-high compression socks and was able to get out of bed and work on my disability application for 20 minutes today.
In context ↗ - Mirena IUD · Not said
I also had a Madera IUD put in recently the hormone type and I've been having some pretty dark thoughts and wondering if I'm having side effects from the hormones on that.
In context ↗ - LDN · Worse
I just tried LDN for the first time and evidently it doesn't work for me or the dose was too high.
In context ↗ - ketotifin · Helped
Update a few days in and able to walk around the house. Up from being mostly med bound
In context ↗ - Bach rescue pastilles · Helped
I use Bach rescue pastilles for PEM anxiety to calm my nervous system
In context ↗ - ice pack · Helped
Some things like rescue Remedy, holding an ice pack can help.
In context ↗ - paired muscle relaxation · Helped
hydroxyzine, paired muscle relaxation, holding an ice pack, distraction like watching cartoons or comedy
In context ↗ - meditation · Helped
I can do quite a lot to calm my anxiety from meds, to teas, meditation, DBT TIPP protocols.
In context ↗ - DBT tools · Helped
DBT tools like half smile, willing hands.
In context ↗ - self compassion tool · Helped
I've been using this self compassion tool to process feelings ... It really helps
In context ↗ - magnesium · Helped
My Dr. Recommended magnesium. I think it's helping some.
In context ↗ - Chronic Pain Anonymous · Not said
I've been trying to dip in for support and community a little bit but have had some frustrations and angst around trying to be in the meetings.
In context ↗ - COVID vaccination as treatment · Worse
Day four of being bedbound after getting COVID and flu vaccines.
In context ↗
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. 2 steps say too little to place on the scale and are 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 onset; symptoms were put down to depressionI was told to push through "depression" when I should have been resting.In context ↗ | Not stated | |
| 2024 | week in psychiatric hospital; baseline considerably loweredTwo years ago I was hospitalized for a week and I think it really contributed to me becoming severe.In context ↗ | Not stated | |
| 2026-01-24 | pain flare and PEM after IUD insertion; too painful to use handsIt's been a few days of a pain flairIn context ↗ | Moderate | |
| 2026-03-08 | bedbound for weeks after LDN reaction, a virus and disability-application exertionI've been bedbound for the past couple weeks after crashing from trying to start my disability application two weeks ago.In context ↗ | Severe | Low-dose naltrexone |
| 2026-03-12 | compression socks let her get out of bed and work on disability application for 20 minutesI got a pair of thigh-high compression socks and was able to get out of bed and work on my disability application for 20 minutes today.In context ↗ | Severe | |
| 2026-04-12 | ketotifen; able to walk around the house after being mostly bedboundUpdate a few days in and able to walk around the house. Up from being mostly med boundIn context ↗ | Severe | Ketotifen (Zaditen) |
| 2026-09-25 | bedbound after COVID and flu vaccines; MCAS reaction with itching and sweatingDay four of being bedbound after getting COVID and flu vaccines.In context ↗ | Severe | |
| 2026-10-03 | starting to do better after nine days bedboundI'm starting to do better. Thank you for asking. I was bedbound for 9 daysIn context ↗ | Moderate |
Adverse events
- IUD (hormonal or copper)“Definitely having PEM after that.” In context ↗ Made symptoms worse
- IUD (hormonal or copper)“I had referred pain into my hip, just one of my untreated pain zones.” In context ↗ Nerve pain
- IUD (hormonal or copper)“I've been having some pretty dark thoughts and wondering if I'm having side effects from the hormones on that” In context ↗ Mood or psychiatric effects
- Fluoxetine (Prozac)“Prozac and a lot of antidepressants can cause bruxism which is teeth grinding basically and I ended up having a lot of dental problems as a result” In context ↗ Side effects
- Fluoxetine (Prozac)“Tapering off Prozac was very hard.” In context ↗ Withdrawal problems
- Low-dose naltrexone“Took my first dose of 0.5mg last night and feeling very anxious today, can't settle to anything, racing thoughts.” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“I had a crash that really sucked from trying it.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I have been bedbound for a week, first with bad LDN reaction and then virus.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I'm having rage and despair so bad it's making it impossible for me to communicate verbally without lashing out” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“I'm so depressed that I have no will to do anything. I have no appetite.” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“I'm having trauma dreams that just go on and on.” In context ↗ Insomnia from treatment
- Low-dose naltrexone“I think I'm having worsening OCD symptoms. Harms thoughts kicking up around sharp objects etc.” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“LDN has just made me sicker” In context ↗ Made symptoms worse
- Ketotifen (Zaditen)“I've been mostly bedbound but I'm able to walk around the house a little bit even though it's interrupting my sleep” In context ↗ Insomnia from treatment
- COVID vaccination as treatment“I had a big MCAS reaction the first night with itching and sweating.” In context ↗ Autoimmune or inflammatory flare
- COVID vaccination as treatment“Day four of being bedbound after getting COVID and flu vaccines.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
This often goes along with PEM for me.
In context ↗ - Brain fog
My brain fog gets so intense from the clinic environment and stimuli that I need an advocate.
In context ↗ - POTS & dysautonomia
I've screened positive for POTS
In context ↗ - Mast cell (MCAS) & allergies
I had a big MCAS reaction the first night with itching and sweating.
In context ↗ - Sleep problems
it's interrupting my sleep
In context ↗ - Pain & fibromyalgia
It's been a few days of a pain flair
In context ↗ - Neuropathy & tingling
My hands are numb and tingling.
In context ↗ - Anxiety & low mood
the extreme mood swings anxiety and depression are my biggest concern
In context ↗ - Flu-like symptoms
The whole time it's been sore throat and that I got hit by a bus flu feeling.
In context ↗