ME/CFS
No benefitNeeds ongoing treatment
ME/CFS, barely able to walk, tried Aimovig and LDN with no improvement
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- Not stated
- Last post
- Aug 2023
In their words
- Condition: ME/CFS
I probably have chronic fatigue syndrome
In context ↗ - Now: No benefit
Even though nothing about my situation has changed
In context ↗
Read from 20 of their posts and comments; links to the 13 this page draws on
Summary
Puffin 29688 fell ill on 15 March 2020 and was barely able to walk and had been prescribed a wheelchair within three months, with fatigue, brain fog, flu-like malaise, daily headaches and burning muscle pain. Aimovig made her headaches mild until insurance refused to cover it, and low-dose naltrexone cut daily pain from 7 to 4. Cannabis was the only relief from the constant horrible sick feeling. She was severe and isolated in a dark room in 2023, dependent on a caregiver who she said made her worse.
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What they tried
Also tried
Their words about each treatment
- Trintellix · Not said
I experience nausea as a side effect of my antidepressant (Trintellix).
In context ↗ - Zofran · Helped
I've been on Zofran for years, and is it a godsend
In context ↗ - symptom tracking app · Helped
I've started using a symptom tracking app, which has been very helpful.
In context ↗ - Aimovig · Helped a lot
My neurologist put me on Aimovig (which was a miracle—my headaches are now mild, even during a bad crash.
In context ↗ - low dose naltrexone · Helped a lot
I started taking low dose naltrexone, and now my daily pain level has gone from 7 to 4.
In context ↗ - AI therapist (ChatGPT) · Helped
I'm doing it now. I actually feel better! Genius!
In context ↗ - cannabis (indica) · Helped
Weed helps me so much. Beyond my CPTSD, it helps with relaxing when I don't want to rest, body and head pain are easier to tolerate
In context ↗ - Wellue CheckMe O2 heart-rate monitor · Helped
I finally bought a Wellue CheckMe O2, and it works brilliantly. It picks up every time my pulse jumps from 75 to 125
In context ↗ - Lumbar puncture (CSF drainage) · Not said
I had a CSF leak after a lumbar puncture ... I couldn’t sit up for more than 30 seconds at a time, and I was starting to have seizures.
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 3 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 |
|---|---|---|---|
| 2020-03-15 | woke up feeling terrible and got worseI woke up the morning of 3/15/2020 feeling terrible, and it’s just gotten worse since then.In context ↗ | Not stated | |
| 2020-06-03 | housebound, wheelchair, could barely walkI’ve just been prescribed a wheelchair because I can barely walkIn context ↗ | Severe | |
| 2020-08-17 | headaches became mild on AimovigMy neurologist put me on Aimovig (which was a miracle—my headaches are now mild, even during a bad crash.In context ↗ | Severe | |
| 2022-09-30 | daily pain dropped from 7 to 4 on low-dose naltrexonemy daily pain level has gone from 7 to 4In context ↗ | Severe | Low-dose naltrexone |
| 2023-08-16 | still severe, isolated in a dark room, cared for by husbandI'm totally isolated in this dark room and I feel like I'm going crazy.In context ↗ | Severe |
Adverse events
- Vortioxetine (Trintellix)“I experience nausea as a side effect of my antidepressant (Trintellix).” In context ↗ Side effects
- Lumbar puncture (CSF drainage)“I had a CSF leak after a lumbar puncture ... I couldn’t sit up for more than 30 seconds at a time, and I was starting to have seizures.” In context ↗ Other
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
Horrible, debilitating fatigue that gets worse if I even walk to the bathroom
In context ↗ - Brain fog
I’ve been calling it brain fog.
In context ↗ - Pain & fibromyalgia
Deep, burning muscle pain
In context ↗ - Headaches & migraine
My head has hurt every single day for god knows how long.
In context ↗ - Flu-like symptoms
Horrible malaise—I feel like I have the flu all the time
In context ↗ - Sleep problems
A good night’s sleep does nothing.
In context ↗ - Gut problems
I experience nausea as a side effect of my antidepressant (Trintellix).
In context ↗ - Anxiety & low mood
My anxiety and stress levels are cut in half when one of my dogs is around.
In context ↗ - POTS & dysautonomia
everything goes white and I can’t understand what my husband is saying to me unless I lay down for two hours
In context ↗ - Heart symptoms & palpitations
It picks up every time my pulse jumps from 75 to 125
In context ↗