ME/CFS
Moderate → no benefitIll for 7 years
ME/CFS with brain fog, migraines and crashes, still limited and using pacing
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 7 years
- Last post
- Apr 2022
In their words
- Condition: ME/CFS
I am pretty sure I have ME/CFS and unfortunately that sounds a lot like it.
In context ↗ - At worst: Moderate
I'm a data analyst and had to go on disability. I couldn't manage it anymore.
In context ↗ - Now: No benefit
I guess we're in perma-fatigue-land?
In context ↗ - Began after: injury or surgery
Then shortly after surgery first I had trouble recovering and then as I worked around barriers I started getting PEM.
Read from 22 of their posts and comments; links to the 14 this page draws on
Summary
Tern 69477 dates their illness to 2015, when Crohn's surgery was followed by trouble recovering and then post-exertional malaise; they later went on disability from work. Migraines, brain fog, sound sensitivity and crashes are described; a second Pfizer dose hit them hard for a day or two and a medical procedure in 2021 set them back. They remained limited, using pacing to manage.
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What they tried
Also tried
cannabis tinctures· HelpedCBD only regime· Helpedb12 shots· HelpedIntermittent fasting· HelpedGarmin vivosmart· Helpedmeditation· Helpedchecklist routine / pacing/resting· HelpedLevothyroxine· No changeSumatriptan· Worsestrength training· WorseT3· Not saidvitamin d· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- Sumatriptan · Worse
Sumatriptan makes me feel like 5 times worse. It fails to get rid of the migraine and gives me fatigue.
In context ↗ - Levothyroxine · No change
I've been on a half dose of Levothyroxine since 3 years ago. It was doing nothing so I stopped on my own recently to add a neuro stimulant (too many pills bugs me).
In context ↗ - T3 · Not said
My new doctor just tested for reverse T3 and that was high which is bad because it will take up regular T3 slots in cells so we're now trying T3.
In context ↗ - cannabis tinctures · Helped
I do tinctures and if i'm having a bad day it might still put me to sleep but mostly it just helps dull the discomfort.
In context ↗ - CBD only regime · Helped
I switched to a CBD only regime last week and it seemed to help with heart rate - though small tiny wee tiny sample size.
In context ↗ - b12 shots · Helped
I have to do b12 shots regularly due to Crohns related surgery. One thing I know that causes me issues is that I get hyper after the shot. And in turn, I get PEM the next day.
In context ↗ - vitamin d · Not said
Doctor recommended b12 shots and vitamin d. But even if my energy increased I still battled the PEM issue constantly
In context ↗ - Intermittent fasting · Helped
Intermittent fasting has worked for me with the weight.
In context ↗ - Garmin vivosmart · Helped
I like having it as I can respond to it. See heart rate rising when it shouldn't and i'll do meditation or something and it sometimes helps.
In context ↗ - meditation · Helped
See heart rate rising when it shouldn't and i'll do meditation or something and it sometimes helps.
In context ↗ - checklist routine / pacing/resting · Helped
I did a checklist to get started which helped force a routine ... pacing/resting gives me the ability to use my brain more without pain or with limited discomfort
- strength training · Worse
Definitely not for me. Any strength based stuff hits me hard. Which I haven’t done in ages now of course.
In context ↗ - COVID vaccination as treatment · Not said
After the second, both my wife and I got sick for 24-48 hours. It was like a nasty flu. That brought out my sensitivities so I had migraines too.
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 5.8 years 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 |
|---|---|---|
| 2015 | Crohn's-related surgery, then trouble recovering and PEM beganDiagnosed with Crohns in 2015 a week before Crohns-related surgery ... Then shortly after surgery first I had trouble recovering and then as I worked around barriers I started getting PEM.In context ↗ | Not stated |
| 2021-04-30 | Had to stop working as a data analyst and go on disabilityI'm a data analyst and had to go on disability. I couldn't manage it anymore.In context ↗ | Moderate |
| 2021-08-14 | crashed after a medical procedureThough i had a medical procedure last week that set me back with a crash after.In context ↗ | Moderate |
| 2022-04-27 | Still limited; intermittent fasting helped with weightIntermittent fasting has helped me. Plus my cfs messed with my appetite.In context ↗ | Moderate |
Adverse events
- COVID vaccination as treatment“After the second, both my wife and I got sick for 24-48 hours. It was like a nasty flu. That brought out my sensitivities so I had migraines too.” In context ↗ Side effects
- Sumatriptan (Imitrex)“Sumatriptan makes me feel like 5 times worse. It fails to get rid of the migraine and gives me fatigue.” In context ↗ Made symptoms worse
- Vitamin B12“I get hyper after the shot. And in turn, I get PEM the next day.” In context ↗ Made symptoms worse
- “Though i had a medical procedure last week that set me back with a crash after.” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I still battled the PEM issue constantly
In context ↗ - Brain fog
The fog seems to affect my ability to use my intelligence, to recall words, to continue analyzing a problem
In context ↗ - Headaches & migraine
It fails to get rid of the migraine and gives me fatigue.
In context ↗ - Pain & fibromyalgia
there is that pain in my scalp which sucks so much!
In context ↗ - Sleep problems
This morning after a rough night of sleep I could see my heart rate was low
In context ↗ - Light & noise sensitivity
Losing the ability to listen to music was crushing to me. I got it back and then lost it again.
In context ↗ - Heart symptoms & palpitations
See heart rate rising when it shouldn't
In context ↗ - Gut problems
Also if my IBS is active, then I have to delay my shot.
In context ↗