ME/CFS
Severe → no benefitIll for 13 years
Housebound with ME/CFS and in a massive crash after COVID vaccinations and infections
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 13 years
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
I've had ME/CFS since 2012
In context ↗ - At worst: Severe
I've been housebound/bedbound and trying to pace for 16 months.
In context ↗ - Now: No benefit
Each time my ME/CFS gets worse.
In context ↗
Read from 42 of their posts and comments; links to the 28 this page draws on
Summary
A Reddit user in Florida who had ME/CFS since 2012 kept working until a second COVID vaccination in September 2021 made them significantly worse; they stopped working in January 2022 and became housebound, later using a power wheelchair. Mestinon helped muscle weakness only slightly. Four COVID infections, the latest in January 2025, each worsened their ME/CFS, and they were in a massive crash at the last post.
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What they tried
Also tried
Mestinon· HelpedXanax (alprazolam)· Helpedhigh dose D3 supplements and injections, then rx D2· HelpedDexedrine (dextroamphetamine)· HelpedLyrica (pregabalin)· HelpedMiralax· HelpedVisible app (free, then Visible Plus with Polar arm band)· Helpedpromethazine (Phenergan)· Helpedginger (ginger beer)· Helpedtalk therapy· HelpedValtrex· Helpedheating pad· HelpedPlaquenil· HelpedCosentyx· Helped · wore offmeditation and breathing exercises· No changeTaltz· No changeTremfya· No changeseveral antidepressants· WorseCymbalta (duloxetine)· WorseDulcolax· Worsefamotidine· Worseproton pump inhibitors· Worsemagnesium supplements· Worsesteroid injection in knee· WorseEnbrel· WorseCOVID vaccination as treatment· WorseMethotrexate (MTX)· Much worseRitalin· Not saidNorco· Not saidPaxlovid· Not saidsupplements· Not saidCorlanor (ivabradine)· Not saidpacing· Not said
Their words about each treatment
- Mestinon · Helped
It did help my weakness but only a tiny bit. However, even the tiny bit was enough to make me feel like my legs were not going to buckle under me
In context ↗ - Xanax (alprazolam) · Helped
I do take .50 mg Xanax before bed and it helps me sleep and has lessened the bouts of waking up anxious
In context ↗ - several antidepressants · Worse
I have been intolerant to every antidepressant that my PC has tried
In context ↗ - high dose D3 supplements and injections, then rx D2 · Helped
it took 6 months of rx D2 50,000 IU two times per week to bring it up to around 50
In context ↗ - meditation and breathing exercises · No change
I have tried meditation, breathing exercises etc and nothing has worked.
In context ↗ - Dexedrine (dextroamphetamine) · Helped
Definitely helps my brain fog but it does nothing for my energy, makes my heart race and makes me crash.
In context ↗ - Ritalin · Not said
Ritalin literally put me to sleep!
In context ↗ - Cymbalta (duloxetine) · Worse
Cymbalta did not work for me due to it aggravating my anxiety considerably even at only 20 mg. once a day.
In context ↗ - Lyrica (pregabalin) · Helped
Currently on 100 mg 3x a day for fibromyalgia and cervical radiculopathy. It definitely helps with both and I am much less pain on it.
In context ↗ - Miralax · Helped
I have a lot of medication sensitivities and don't have problems with either of these
In context ↗ - Dulcolax · Worse
even just one Dulcolax gives me awful cramps
In context ↗ - Visible app (free, then Visible Plus with Polar arm band) · Helped
I love it and while I still struggle with pacing...it has definitely helped me.
In context ↗ - Methotrexate (MTX) · Much worse
MTX made me want to die. Made my ME/CFS symptoms much worse and did nothing for my Psoriasis or Psoriatic Arthritis.
In context ↗ - promethazine (Phenergan) · Helped
I take promethazine (Phenergan) as needed and I have the same side effects. I couldn't live without it because of my migraines
In context ↗ - ginger (ginger beer) · Helped
Ginger is very helpful for nausea if you can handle the taste.
In context ↗ - Norco · Not said
I do take Norco
In context ↗ - famotidine · Worse
I cannot take famotidine or any of the proton pump inhibitors because they give me headaches.
In context ↗ - magnesium supplements · Worse
I cannot take magnesium supplements. They make me tired, weak and give me a headaches.
In context ↗ - steroid injection in knee · Worse
I had a steroid injection in my knee back at the beginning of June and it gave me terrible insomnia for 4 days
In context ↗ - Paxlovid · Not said
I had covid 6 weeks ago and took Paxlovid.
In context ↗ - talk therapy · Helped
Talk therapy has definitely helped
In context ↗ - Valtrex · Helped
I took Valtrex for 2 months for shingles many years ago.
In context ↗ - heating pad · Helped
my heating pad is one of my favorite things
In context ↗ - supplements · Not said
I am currently adding some supplements that are supposed to be helpful
In context ↗ - Corlanor (ivabradine) · Not said
My heart rate is all over this place despite taking Corlanor.
In context ↗ - Plaquenil · Helped
Plaquenil helped my Sjogren's (and maybe PSA) but made no difference in ME/CFS symptoms.
In context ↗ - Cosentyx · Helped
Cosentyx worked very well for both my Psoriasis and Psoriatic Arthritis.
In context ↗ - Taltz · No change
Taltz didn't work very well but didn't make me feel worse other than a headache and mild fatigue the day after injection.
In context ↗ - Tremfya · No change
Tremfya did nothing for PSA but did help psoriasis a bit... Had a crazy reaction to the first shot.
In context ↗ - Enbrel · Worse
Feels like it exacerbates ME/CFS symptoms and gives me gastrointestinal problems (severe diarrhea & nausea).
In context ↗ - pacing · Not said
I've been housebound/bedbound and trying to pace for 16 months
In context ↗ - COVID vaccination as treatment · Worse
About 3 weeks after I received my second vaccination (9/2021) I suddenly got significantly worse and had to stop working in Jan, 2022.
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 |
|---|---|---|
| 2012 | ME/CFS began; still able to workI've had ME/CFS since 2012 and was still able to work although my social life had been sacrificed to manage that.In context ↗ | Mild |
| October 2021 | worse after second COVID vaccination; stopped workAbout 3 weeks after I received my second vaccination (9/2021) I suddenly got significantly worse and had to stop working in Jan, 2022.In context ↗ | Severe |
| 2025-01-09 | fourth COVID infection, massive crashI'm in a massive crash and struggling to pace due to a family crisis.In context ↗ | Severe |
Adverse events
- Dexamfetamine (Dexedrine)“they make my heart rate go up which adds to my existing anxiety ... I'll crash after using them.” In context ↗ Heart rhythm problems
- Dexamfetamine (Dexedrine)“they make my heart rate go up which adds to my existing anxiety ... I'll crash after using them.” In context ↗ Made symptoms worse
- Methylphenidate (Ritalin, Concerta)“Ritalin literally put me to sleep!” In context ↗ Side effects
- Duloxetine (Cymbalta)“Cymbalta did not work for me due to it aggravating my anxiety considerably even at only 20 mg. once a day.” In context ↗ Mood or psychiatric effects
- Pregabalin (Lyrica)“it's also quite sedating which is not helpful with regard to the fatigue that comes with CFS.” In context ↗ Side effects
- Bisacodyl (Dulcolax)“even just one Dulcolax gives me awful cramps.” In context ↗ Gut side effects
- Famotidine (Pepcid)“I cannot take famotidine or any of the proton pump inhibitors because they give me headaches.” In context ↗ Side effects
- Magnesium“They make me tired, weak and give me a headaches.” In context ↗ Side effects
- Magnesium“It doesn't make me feel better it makes me feel ill.” In context ↗ Made symptoms worse
- Corticosteroid pulses“it gave me terrible insomnia for 4 days” In context ↗ Insomnia from treatment
- COVID vaccination as treatment“About 3 weeks after I received my second vaccination (9/2021) I suddenly got significantly worse and had to stop working in Jan, 2022.” In context ↗ Made symptoms worse
- Promethazine (Phenergan)“I take promethazine (Phenergan) as needed and I have the same side effects.” In context ↗ Side effects
- Mestinon / pyridostigmine“I do get muscle spasms sometimes... don't know why it's only sometimes.” In context ↗ Side effects
- Valtrex / valacyclovir“The side effects that I recall were that it made me a bit dizzy and nauseous but really nothing else.” In context ↗ Side effects
- Mestinon / pyridostigmine“some days it would "overstimulate" my GI system and sometimes cause muscle spasms.” In context ↗ Gut side effects
- Mestinon / pyridostigmine“The most annoying side effect for me has been that it makes me sweat more” In context ↗ Side effects
- Pregabalin (Lyrica)“I was on 150 mg 3x a day which reduced pain better but made me so messed up I couldn't take care of myself” In context ↗ Side effects
- Methotrexate“MTX made me want to die.” In context ↗ Suicidal thoughts or attempt
- Methotrexate“Made my ME/CFS symptoms much worse and did nothing for my Psoriasis or Psoriatic Arthritis.” In context ↗ Made symptoms worse
- Secukinumab (Cosentyx)“I had mild exacerbation of fatigue and a headache for about a day after injection.” In context ↗ Side effects
- “other than a headache and mild fatigue the day after injection” In context ↗ Side effects
- “Had a crazy reaction to the first shot.” In context ↗ Side effects
- Etanercept (Enbrel)“Feels like it exacerbates ME/CFS symptoms ... Really worsens the fatigue so far for 3-5 days.” In context ↗ Made symptoms worse
- Etanercept (Enbrel)“gives me gastrointestinal problems (severe diarrhea & nausea)” In context ↗ Gut side effects
- Dexamfetamine (Dexedrine)“It does aggravate my anxiety and orthostatic intolerance even though I take meds for both.” In context ↗ Mood or psychiatric effects
- Dexamfetamine (Dexedrine)“I only take it when absolutely necessary and always pay for it later (PEM).” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I only take it when absolutely necessary and always pay for it later (PEM).
In context ↗ - Brain fog
Definitely helps my brain fog but it does nothing for my energy
In context ↗ - POTS & dysautonomia
I have orthostatic intolerance (autonomic dysfunction) and several autoimmune conditions along with ME/CFS
In context ↗ - Sleep problems
I do take .50 mg Xanax before bed and it helps me sleep
In context ↗ - Pain & fibromyalgia
I do take Lyrica but I also have fibromyalgia.
In context ↗ - Headaches & migraine
I couldn't live without it because of my migraines
In context ↗ - Gut problems
I have some kind of gastroparesis.
In context ↗ - Muscle weakness
the weakness is really awful! I get super frustrated because I can't even open a jar that's already been opened
In context ↗ - Anxiety & low mood
I NEVER had anxiety until I got sick with CFS.
In context ↗ - Heart symptoms & palpitations
my heart rate is all over this place despite taking Corlanor
In context ↗