ME/CFS
Mild → relapsed
ME/CFS brain fog and PEM, remissions then full flare after Botox for migraine
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- Not stated
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
As someone with ME/CFS, I feel like this stupid disease/ailment whatever you call it, has robbed me of parts of my identity
In context ↗ - At worst: Mild
I work full-time remotely - I can never go back to a hybrid or full-time in office schedule
In context ↗ - Now: Relapsed
I had a month of feeling pretty decent. Now I'm back to waking up feeling like I'm encased in cement.
In context ↗
Read from 12 of their posts and comments; links to the 8 this page draws on
Summary
An ME/CFS patient working full-time remotely described brain fog and PEM; pushing themselves to walk three times a week left them feeling so rotten they didn't walk for two months. They cycled between month-long remissions and flares, and by 2026 were in unrelenting pain that ibuprofen and creams did not touch. A Botox injection for migraine in late August 2026 was followed by fainting, which triggered a full flare.
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What they tried
Also tried
journaling· Helpedcut out all simple carbs· HelpedIbuprofen· No changeOver the counter creams like Aspercreme· No changeHealth pad· No changeMeditating· No changeBotox shots· Worsewalking three times a week and pushing· Much worsegabapentin· Much worseonly walking when my body can handle it· Not saidlow-dose naltrexone· Not said
Their words about each treatment
- journaling · Helped
I actually journal a lot and that helps.
In context ↗ - walking three times a week and pushing · Much worse
I was trying to do it three times a week and push myself ... and that's when I put myself into feeling so rotten I didn't walk for the next two months.
In context ↗ - cut out all simple carbs · Helped
I cut out all simple carbs (saltines, which I love because they help with my nausea, but no more!) and focus on lean proteins and veggies
In context ↗ - only walking when my body can handle it · Not said
I will only take a walk when I feel like my body can handle it - and I do not overdo it.
In context ↗ - Ibuprofen · No change
Ibuprofen doesn’t touch the pain.
In context ↗ - Over the counter creams like Aspercreme · No change
Over the counter creams like Aspercreme do nothing.
In context ↗ - Health pad · No change
Health pad does hardly anything.
In context ↗ - gabapentin · Much worse
I can’t take gabapentin because it makes me suicidal
In context ↗ - low-dose naltrexone · Not said
I tried low-dose naltrexone years ago and am willing to try it again but it takes at least 3 months to work.
In context ↗ - Meditating · No change
Meditating doesn’t work well for me.
In context ↗ - Botox shots · Worse
I have gotten Botox shots for my migraines for years and never had any problems. But this time, I fainted.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | ME/CFS; no longer able to exercise, walks trigger flaresI used to work out three times a week, and that's obviously impossible now.In context ↗ | Mild |
| 2025-04-02 | month-long flares alternating with brief remissionsI feel like I go into remission for a month or so and can do normal things, and then I will get hit with a month-long flare.In context ↗ | Mild |
| 2025-05-13 | pushed walks three times a week and felt rotten for two monthsI was trying to do it three times a week and push myself...and that's when I put myself into feeling so rotten I didn't walk for the next two months.In context ↗ | Mild |
| 2025-11-21 | a decent month, then back to heavy, unrefreshing morningsI had a month of feeling pretty decent. Now I'm back to waking up feeling like I'm encased in cement.In context ↗ | Mild |
| 2026-08-21 | unrelenting pain that nothing touchedI don’t know what to do anymore. Ibuprofen doesn’t touch the pain.In context ↗ | Mild |
| 2026-09-02 | fainted after a Botox injection and went into a full flareFainting put me into a full-blown flare. I still don't feel right.In context ↗ | Mild |
Adverse events
- Gabapentin (Neurontin)“I can’t take gabapentin because it makes me suicidal” In context ↗ Suicidal thoughts or attempt
- Botox (botulinum toxin)“I have gotten Botox shots for my migraines for years and never had any problems. But this time, I fainted.” In context ↗ Low blood pressure or fainting
- Botox (botulinum toxin)“Fainting put me into a full-blown flare.” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Brain fog
I transpose numbers constantly with the brain fog, and am easily confused.
In context ↗ - Post-exertional malaise
I can't exercise like I used to anymore because of PEM.
In context ↗ - Pain & fibromyalgia
Ibuprofen doesn’t touch the pain.
In context ↗ - Headaches & migraine
I have gotten Botox shots for my migraines for years and never had any problems.
In context ↗ - Gut problems
saltines, which I love because they help with my nausea, but no more!
In context ↗ - POTS & dysautonomia
I'm still a little dizzy, my cognitive function is down, I feel wobbly on my feet
In context ↗ - Heart symptoms & palpitations
I do have low blood pressure and a supraventricular ectopic arrhythmiah.
In context ↗ - Sleep problems
back to waking up feeling like I'm encased in cement
In context ↗