ME/CFS
Mild → no benefitIll for 6.5 yearsNeeds ongoing treatment
ME/CFS after flu shot, pushing housebound, no improvement from pacing and rest
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 6.5 years
- Last post
- Jan 2022
In their words
- Condition: ME/CFS
My ME was triggered by a flu shot.
In context ↗ - At worst: Mild
I would say I’m mild to mild-moderate. ... I do a full work week (some from home) but do not do much else
In context ↗ - Now: No benefit
I’ve also progressively, slowly declined since I’ve been sick.
In context ↗ - Began after: a vaccination
When I got sick, I had gotten my first and only flu shot.
Read from 59 of their posts and comments; links to the 32 this page draws on
Summary
Badger 37574 fell ill after a flu shot, with muscle twitching then ME/CFS symptoms, and worked full-time in an office for years while slowly declining. Working from home during the pandemic brought a drastic improvement in fatigue; she still pushed on and by late 2021 said she was pushing housebound. A bereavement in January 2022 left her flaring and depressed. She says pacing, rest and sleep help slightly and slow things down.
Ask Miruvor AI
What they tried
Also tried
Working from home· Helped a lotIbuprofen· HelpedNaproxen· HelpedTylenol· HelpedLorazepam (Ativan)· HelpedSalt water gargles· HelpedCaffeine (strong black coffee)· HelpedPacing· HelpedRest· Helpedexposure and response prevention therapy· HelpedEpley’s Maneuver· HelpedSSRI· HelpedPepto· Helpedmile long walks uphill· Much worseCough drops· Not saidEarplugs and ear defenders (Loop)· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- Ibuprofen · Helped
Ibuprofen helps my throat and migraines
In context ↗ - Naproxen · Helped
naproxen helps nerve/muscle pain
In context ↗ - Tylenol · Helped
Sometimes it seems to help. Sometimes it doesn’t do anything. I have no idea.
In context ↗ - Lorazepam (Ativan) · Helped
I take lorazepam for anxiety. While I don’t think it helps my symptoms, it does limit my body’s response to anxiety and stress which thus reduces my likelihood for and/or strength of PEM.
In context ↗ - Salt water gargles · Helped
Salt water gargles help.
In context ↗ - Caffeine (strong black coffee) · Helped
Caffeine (just some black, strong coffee) really helps me.
In context ↗ - Cough drops · Not said
I also tend to use a lot of cough drops to keep my throat wet.
In context ↗ - Pacing · Helped
Pacing and reduction of various forms.
In context ↗ - Rest · Helped
Resting, pacing, and sleep.
In context ↗ - mile long walks uphill · Much worse
I was a big old dumbass going on mile long walks uphill for a summer. I was very mild, and now I’m pushing housebound.
In context ↗ - exposure and response prevention therapy · Helped
Only thing that has ever truly helped l me is exposure and response prevention therapy.
In context ↗ - Working from home · Helped a lot
~SHOCKINGLY~ my fatigue has improved DRASTICALLY since starting work from home.
In context ↗ - Epley’s Maneuver · Helped
I do Epley’s Maneuver (YouTube has how-to videos) which often helps.
In context ↗ - SSRI · Helped
I recently started an SSRI after years and years of chronic stress, anxiety, depression, etc. I’m utterly shocked at how much it quieted my brain and stopped negative thoughts.
In context ↗ - Pepto · Helped
Tylenol, ibuprofen, Pepto help me with stuff like this.
In context ↗ - Earplugs and ear defenders (Loop) · Not said
Recently I've been getting pain from them and even some scabbing on the skin.
In context ↗ - COVID vaccination as treatment · Not said
First dose April 9 I had extra fatigue from normal for about a week and some weird sensory symptoms on high (buzzing, tingling, twitching
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| onset | ME/CFS began after a flu shot; initially very mildWhen I got sick, I had gotten my first and only flu shot. ... Two more weeks later, all my CFS symptoms began to unfold.In context ↗ | |
| about a year in | a month of what seemed to be complete recovery, then symptoms returnedeven had a month of what seemed to be complete recovery (I didn’t stop or start doing anything - at all- it just happened)In context ↗ | |
| about a year in | no symptoms for one month, then they suddenly returned for goodhaving no symptoms for X amount of time and then suddenly having it again. This only happened to me once, for one month, about a year inIn context ↗ | |
| spring 2018 | severe flu, then months of horrible pain; never back to previous levelFor months I was in horrible pain afterward and really sick, and I’m not sure I ever went back to as good as I was before that.In context ↗ | |
| 2019 | HPV infection; pain and crippling fatigue for months, then back to baselineMy pain was much worse, the fatigue was crippling (compared to my normal).In context ↗ | |
| 2020-01 | slow decline while pushing through full-time office workI’ve worked full-time since I’ve been sick. I’ve also progressively, slowly declined since I’ve been sick.In context ↗ | |
| 2020-05 | started working from home in the pandemic; fatigue improved drastically, about 60% of life backmy fatigue has improved DRASTICALLY since starting work from home ... I feel like I got 60% of my life back and went back in time nearly 2 years functionality wise.In context ↗ | Pacing and the energy envelope |
| 2021-10 | decline after a summer of mile-long uphill walks; now pushing houseboundI was a big old dumbass going on mile long walks uphill for a summer. I was very mild, and now I’m pushing housebound.In context ↗ | |
| 2022-01 | flaring and depressed after a bereavement; still working from homeI’m flaring. Personally I have wanted to keep busy, but I’ve been too depressed.In context ↗ |
Adverse events
- Ibuprofen (Advil, Nurofen, Motrin)“I did get pill induced esophagitis from it once bc I took it without much water.” In context ↗ Other
- CBT and psychotherapy“it is honestly an extremely stressful process... which I've found (stress) triggers CFS symptoms.” In context ↗ Made symptoms worse
- Earplugs and ear defenders (Loop)“Recently I've been getting pain from them and even some scabbing on the skin.” In context ↗ Other
- COVID vaccination as treatment“First dose April 9 I had extra fatigue from normal for about a week and some weird sensory symptoms on high (buzzing, tingling, twitching” In context ↗ Side effects
- COVID vaccination as treatment“I had my second vaccine three days ago and it's wiped me out ... my arm and leg muscles have died after just 3-4 days.” In context ↗ Side effects
- COVID vaccination as treatment“My second shot made my arm hurt so bad I could not lift, use, or lie on it.” In context ↗ Side effects
- COVID vaccination as treatment“third was typical symptoms, migraine, fatigue and a bit worse overall.” In context ↗ Side effects
- Lorazepam (Ativan)“I do think it can make me depressed if I take it consecutively.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
Post-exertional malaise is when I feel a worsened uptick in fatigue and symptoms after doing too much
In context ↗ - Brain fog
I get brain fog and light/sound sensitivity
In context ↗ - Headaches & migraine
I get migraines (often with visual aura), started before CFS.
In context ↗ - Pain & fibromyalgia
Deep muscular ache/almost burn in my backs of my thighs, migratory bone and joint pain in the other areas.
In context ↗ - Flu-like symptoms
Extremely common for me with my PEM. Sore throat, sometimes red, sometimes even white pus balls
In context ↗ - Sleep problems
one or two really bad nights of sleep will make me sick for days
In context ↗ - Neuropathy & tingling
some weird sensory symptoms on high (buzzing, tingling, twitching — all of which I normally have but it was increased)
In context ↗ - Anxiety & low mood
I went into the deepest depression of my life
In context ↗ - POTS & dysautonomia
Personally I get positional vertigo, which sounds similar but may not be the same as what you are experiencing.
In context ↗ - Heart symptoms & palpitations
Drink more than usual, pounding heart and jittery.
In context ↗ - Muscle weakness
I feel like my arm and leg muscles have died after just 3-4 days. They feel very weak and crampy
In context ↗ - Gut problems
get a shower, dry heave in shower, go to work anyway
In context ↗