ME/CFS
Severe → somewhat betterIll 13 months before improving or writingNeeds ongoing treatment
Severe ME/CFS, stuck in bed much of the time, now somewhat better with low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 13 months
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
since before I had me/cfs
In context ↗ - At worst: Severe
I was more like severe when I first got my mobility aids
In context ↗ - Now: Somewhat better
I definitely credit it with my going from severe to moderate over the last year
In context ↗
Read from 33 of their posts and comments; links to the 23 this page draws on
Summary
Lynx 17316 fell ill around late 2023 and was severe, stuck in bed much of the time; a breast reduction in August 2024 took about eight months to recover from. Low-dose naltrexone (5 mg), started early 2025, gave more energy almost right away and they credit it with moving from severe to moderate, with milder PEM, brain fog, pain and migraines. By late 2026 they were moderate, cooking and doing hobbies again, still relying on a rollator.
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What they tried
What they credit
Also tried
creatine· HelpedZoloft/sertraline· Helpedcannabis / edibles· Helpedelectrolytes (unflavoured Normalyte)· Helpedtoeless compression socks· Helpedwarm baths with heart-rate monitoring and water· Helpedtummy time in bed· Helpedcaffeine (tiny coffee, cola)· Helpeddecaf coffee· Helpedpeppermint capsules (IBgard)· Helpedpeppermint capsules (IBgard)· Helpedcane· Helpedrollator· Helpedrechargeable neck heating pad· HelpedASMR videos· Helpedbreast reduction surgery· Worsevitamin C· Not saidzinc· Not saidb12· Not saidfish oil· Not saidcoq10· Not saidmagnesium bis-glycinate· Not saidZyrtec· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- LDN · Helped a lot
LDN changed my life practically overnight, I’m so much more functional now than I even dreamed I could be before I started taking it
In context ↗ - creatine · Helped
I think it’s given me slightly more energy, but the biggest thing is that it’s stopped my nightly insatiable carb cravings
In context ↗ - Zoloft/sertraline · Helped
it’s worked well to manage my anxiety and depression at a fairly low dose (50mg)
In context ↗ - vitamin C · Not said
It’s hard to say if I’ve noticed any differences, though.
In context ↗ - zinc · Not said
I started vitamin C and zinc on the advice of my doctor, but I started them at the same time as LDN so I can’t really say if they’ve made any difference
In context ↗ - b12 · Not said
most of them are for migraine prevention and I took them before I got sick
In context ↗ - cannabis / edibles · Helped
It helps with my chronic pain, helps me rest, and makes my world more bearable.
In context ↗ - famotidine (Pepcid) · Helped
I’ve definitely noticed an improvement in PEM and cognitive function since then
In context ↗ - Zyrtec · Not said
I already take zyrtec for environmental allergies
In context ↗ - electrolytes (unflavoured Normalyte) · Helped
I find that it helps a lot more (especially with brain fog, but also dizziness) than other electrolytes I’ve tried
In context ↗ - toeless compression socks · Helped
they’re cheap and they do the trick!
In context ↗ - warm baths with heart-rate monitoring and water · Helped
with a few precautions they don’t cause crashes for me at all anymore
In context ↗ - tummy time in bed · Helped
it’s not completely gone but there’s a big improvement!
In context ↗ - breast reduction surgery · Worse
it took about 8 months to get back to my pre-surgery baseline
In context ↗ - caffeine (tiny coffee, cola) · Helped
I do find it really helpful on days I’m not doing well but have something I *need* to focus on or do
In context ↗ - decaf coffee · Helped
it gives me a little energy boost but doesn’t make me jittery
In context ↗ - peppermint capsules (IBgard) · Helped
they really work!
In context ↗ - cane · Helped
I got a (cheap) cane about a month ago and like the extra support
In context ↗ - rollator · Helped
I can walk so much further without feeling exhausted, and it’s sure nice to have a place to sit down whenever I want to
In context ↗ - rechargeable neck heating pad · Helped
it’s helped a lot with my neck pain
In context ↗ - ASMR videos · Helped
ASMR videos help me a lot
In context ↗ - COVID vaccination as treatment · Not said
I’ve reacted quite badly in the past (very sick in the ways you describe for 4-5 days)
In context ↗
Approaches: H2 blockers
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| late 2023 | became ill with ME/CFSI had a (gender affirming) breast reduction almost two years ago, which was 8 months after I got sickIn context ↗ | Severe | |
| August 2024 | breast reduction surgery; about a month mostly in bed afterwardsI basically slept for a full week after surgery, spent close to a month mostly in bedIn context ↗ | Severe | |
| early 2025 | started low-dose naltrexone and had more energy almost right awayI had more energy almost right away, and it also helped with brain fog and chronic pain very quicklyIn context ↗ | Severe | Low-dose naltrexone |
| January 2026 | went from severe to moderate over a year on low-dose naltrexoneI definitely credit it with my going from severe to moderate over the last yearIn context ↗ | Moderate | Low-dose naltrexone |
| September 2026 | moderate, cooking and hobbies again, using a rollator to walk furtherI’m moderate (now, I was more like severe when I first got my mobility aids)In context ↗ | Moderate |
Adverse events
- “I basically slept for a full week after surgery, spent close to a month mostly in bed, and it took about 8 months to get back to my pre-surgery baseline” In context ↗ Made symptoms worse
- “I didn’t notice any side effects while awake other than generally feeling a little less anxious (unlike every prescription sleep med I’ve tried)” In context ↗ Side effects
- Sertraline (Zoloft)“it’s mitigated the really bothersome side effects (sexual dysfunction is the big one” In context ↗ Side effects
- COVID vaccination as treatment“I’ve reacted quite badly in the past (very sick in the ways you describe for 4-5 days)” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I rarely have bad PEM and recover more quickly when I do have it
In context ↗ - Brain fog
when I’m in PEM my regular symptoms (brain fog, fatigue, joint pain, etc.) get more severe
In context ↗ - POTS & dysautonomia
I don’t have POTS but I do have orthostatic intolerance
In context ↗ - Pain & fibromyalgia
my hips are my biggest pain point
In context ↗ - Headaches & migraine
my migraines are much milder
In context ↗ - Sleep problems
I’ve had sleep problems/insomnia since I was a child
In context ↗ - Gut problems
If I wake up before ~10 am I have intense nausea where I can’t eat and often vomit
In context ↗ - Light & noise sensitivity
turning down the volume on everything so I don’t get as overstimulated
In context ↗ - Anxiety & low mood
it’s worked well to manage my anxiety and depression
In context ↗ - Mast cell (MCAS) & allergies
I already take zyrtec for environmental allergies
In context ↗
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