ME/CFS
Moderate → no benefitIll for 2.5 yearsNeeds ongoing treatment
Severe daily pain with ME/CFS limited work; still only 2.5–3 hours light work before PEM
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 2.5 years
- Last post
- Oct 2026
In their words
- At worst: Moderate
But since then my baseline dropped to moderate.
In context ↗ - Now: No benefit
I'm in a rolling flare that I haven't been able to get out of.
In context ↗ - Began after: stress or burnout
The pain of subluxing everytime I did something, cause oversensitisation of my CNS, which between the overwhelming pain and the stress of my job it broke me to the point of developing ME/CFS.
Read from 106 of their posts and comments; links to the 45 this page draws on
- Jul 2026
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Summary
A woman with highly suspected ME/CFS that began in 2024 after job stress and worsening hypermobility pain; daily severe pain limited her working. Amitriptyline reduced the pain, and she describes herself as mild-borderline-moderate with constant flares and PEM; she can manage only about 2.5–3 hours of very light work before PEM.
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What they tried
Also tried
Clonidine· Helped a lotamitriptyline· Helped a lotpropranolol / beta blockers· Helped a lotdesloratadine· HelpedTylenol arthritis 650mg· HelpedDexedrine· HelpedLDN· HelpedT3s (Tylenol 3)· Helpedbirth control (LoLo, then a current one)· Helped · wore offchiropractor· Helpedpacing with a 1-10 symptom scale· Helpedstaying active, walks and treadmill· Helpedvibration plate machine· Helpedhypermobility strengthening technique· Helpedcrash food protocol (fast carbs, fat, salt)· Helpedsalt· Helpedliquid vitamin D with vitamin K· Helpedtopical magnesium· Helpedsumatriptan· HelpedVisible and Chronic Insights· HelpedSystane eye gel drops and ointment· Helpedwarm bath with bath salts· Helpedjujube dates with goji berries tea· HelpedNaproxen· No changedigestive enzymes· No changeduloxetine· Worsesupplements· Worsean unnamed pain medication· Much worseradical rest· Not said
Their words about each treatment
- Clonidine · Helped a lot
So I started on Clonidine, and the clonidine helped massively.
In context ↗ - Naproxen · No change
naproxen did squat and he had me on it for that entire time
In context ↗ - desloratadine · Helped
weirdly enough, desloratadine (an antihistamine aka over the counter allergy med) also seems to help knock down the PEM/fever feeling that I get
In context ↗ - Tylenol arthritis 650mg · Helped
The only things I have found to help reduce my PEM symptoms is Tylenol arthritis 650mg.
In context ↗ - amitriptyline · Helped a lot
then the amitriptyline helped with that and cut me down to moderate 24/7 pain
In context ↗ - duloxetine · Worse
I had one dose of it and I had to stop. It almost gave my serotonin syndrome.
In context ↗ - Dexedrine · Helped
I take stimulates and they honestly help me more than without.
In context ↗ - LDN · Helped
after I talked to her I dropped it to 3mg and it has felt significantly better. It does shorten my crashes
In context ↗ - propranolol / beta blockers · Helped a lot
I just got on some beta blockers as well to take as needed and boy do they make a huge difference.
In context ↗ - T3s (Tylenol 3) · Helped
I also have had great success with T3s though not as great. Mostly, they just knock down my symptoms by 2 levels
In context ↗ - an unnamed pain medication · Much worse
I tried one, horrible, switched it and it changed my life.
In context ↗ - birth control (LoLo, then a current one) · Helped
My first one was no period, it was heaven compared to how my cycle acted naturally.
In context ↗ - chiropractor · Helped
chiro once a month to get my ribs so they aren't basically suffocating me
In context ↗ - pacing with a 1-10 symptom scale · Helped
I've basically looked at my symptom progression, and as I track it, I know that once I see certain symptoms that I need to back off and pace better.
In context ↗ - staying active, walks and treadmill · Helped
if I don't do something active to keep my tolerance up, I end up getting PEM far worse
In context ↗ - vibration plate machine · Helped
the thing that I've found that works the best even for the days when you just can't, a vibration plate machine
In context ↗ - hypermobility strengthening technique · Helped
tense your muscles before doing the thing to recreate the tension that those with hypermobility lack. So far, I've been doing that with the more strenuous day to day stuff and it actually seems to be working
In context ↗ - crash food protocol (fast carbs, fat, salt) · Helped
My protocol for eating with crashes is fast carbs, then a fat and then something salty.
In context ↗ - salt · Helped
Good call on the salt! It definitely helps the orthostatic intolerance
In context ↗ - digestive enzymes · No change
I've tried digestive enzyme and they didn't help.
In context ↗ - supplements · Worse
Been trying to test supplements that people have seen benefit from but since my baseline dropped to moderate, it's like my body just, rejects them.
In context ↗ - liquid vitamin D with vitamin K · Helped
the only time I have noticed vit d actually somewhat do anything for me is when I take it with the vit k and magnesium
In context ↗ - topical magnesium · Helped
For me it also has to be liquid vit d and topical magnesium for me to notice anything at all.
In context ↗ - sumatriptan · Helped
they're usually fixed with sumatriptan
In context ↗ - Visible and Chronic Insights · Helped
I use both Visible, as well as Chronic insights to track my crashes, symptoms, hrv and exertion
In context ↗ - radical rest · Not said
just not doing anything with radical rest is not possible for me at the moment
In context ↗ - Systane eye gel drops and ointment · Helped
I use eye gel drops twice a day (regular drops don't do anything) an eye ointment at night before bed
In context ↗ - warm bath with bath salts · Helped
Tried going into a warm bath with some bath salts that have reduced my PEM symptoms
In context ↗ - jujube dates with goji berries tea · Helped
I found a different tea that works wonders for me. It's a Chinese medicine
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2024 | ME/CFS began with job stress and worsening hypermobility pain2024. I was under extreme stress from my job, and my hyper mobility started being detrimental to my health.In context ↗ | Mild | |
| mid-2025 | pain medication cut daily severe pain, could live againFinally I managed to find a walk in nurse practitioner who gave me something for pain. Life changing. I can somewhat live again.In context ↗ | Mild | |
| 2025 | dropped from mild to moderate after the multi-day trip to a rheumatologistI had to take multiple days to drive there and that was when I ended up going from mild to moderate in that tripIn context ↗ | Moderate | |
| early 2026 | compressed four-day-a-week course crashed her to moderate-severe; had to drop the classI had to drop the course as it dropped me to moderate-severe from mild-moderate.In context ↗ | Moderate | |
| spring 2026 | LDN made flares shorter and less severemostly my worsening of my PEM doesn't last as long, and it's not as severeIn context ↗ | Moderate | Low-dose naltrexone |
| 2026-09-27 | higher stimulant dose made flares far more bearablemy flares are so so so much more bearable!In context ↗ | Moderate | Dexamfetamine (Dexedrine) |
| 2026-10-14 | still moderate with rolling PEM; uses a hiking stick, walking a block hurtsmy knees constantly twist and hurt like heck if I'm walking even a blockIn context ↗ | Moderate |
Adverse events
- Symptom-tracking apps and wearables (Visible)“I actually can't do smart watches, not entirely sure why but they fuck with my system and some of my symptoms get worse.” In context ↗ Made symptoms worse
- Duloxetine (Cymbalta)“I had one dose of it and I had to stop. It almost gave my serotonin syndrome.” In context ↗ Side effects
- “everytime I'd take a b complex or anything with b6 my body would cause me to vomit it out” In context ↗ Gut side effects
- “Also gotta be careful with capsules as certain capsules give me the same reaction.” In context ↗ Gut side effects
- Dexamfetamine (Dexedrine)“I was originally put on one that just it never helped and made my moods unpredictable and I couldn't do any introspection at all.” In context ↗ Mood or psychiatric effects
- “Same with pain meds. I tried one, horrible, switched it and it changed my life.” In context ↗ Side effects
- Duloxetine (Cymbalta)“massive jaw clenching and full body tremours. For two days afterwards my body would not stop shaking.” In context ↗ Side effects
- Low-dose naltrexone“At 4.5 I was getting severe headaches and horrifying nausea.” In context ↗ Side effects
- “it's like my body just, rejects them. I get extremely nauseous and sometimes I even end up vomiting them up.” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
I can't work more than 2.5 hours at an easy going desk job or I get hit with PEM.
In context ↗ - Brain fog
Brain fog is normal for me, but when the episode hit this level it feels like it's about 10x worse.
In context ↗ - Pain & fibromyalgia
I'm in at minimum moderate pain 24/7, for almost three years.
In context ↗ - Headaches & migraine
I do get a lot of migraines, they're usually fixed with sumatriptan
In context ↗ - Sleep problems
I've had sleep issues my entire life and I've never felt rested.
In context ↗ - Temperature regulation
I get cold chills when my PEM gets bad
In context ↗ - Light & noise sensitivity
I'm still really bad with light and sound for instance
In context ↗ - Muscle weakness
my body starts becoming heavier and harder to move
In context ↗ - POTS & dysautonomia
I've noticed my heart rate spikes drastically
In context ↗ - Vision problems
Object disappear and reappear in my vision.
In context ↗ - Gut problems
I get a migraine, I get nauseous, my bowels get funky.
In context ↗ - Anxiety & low mood
Me/CFS, HSD, Autism, ADHD, anxiety ect ect
In context ↗ - Flu-like symptoms
It feels like to me that I am sick with a terrible fever without having that fever.
In context ↗ - Breathlessness
I also have hypermobility and that makes my breathing feel restricted all day everyday
In context ↗