ME/CFS
Severe → relapsedIll 10 years before improving or writingNeeds ongoing treatment
Housebound and sometimes bedridden with ME/CFS, pacing and magnesium helped, then relapsed
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 10 years
- Last post
- Sep 2023
In their words
- Condition: ME/CFS
i've had cfs for about 8 years and just developed pots last year
In context ↗ - At worst: Severe
im still housebound majorly and often bedbound.
In context ↗ - Now: Relapsed
I felt amazing for about a week after finishing paxlovid, then rebounded (the covid came back), and have been pretty severe ever since
In context ↗
Read from 176 of their posts and comments; links to the 55 this page draws on
- Jul 2022
- May 2023
- May 2023
- Nov 2021
- Sep 2021
- Jul 2021
- Jul 2021
- Jul 2022
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Summary
Ocean 53171 has had ME/CFS since age 14 and is now 21. They developed POTS after a car accident in 2021. They were housebound and sometimes bedridden; pacing helped the length of PEM, magnesium helped anxiety, ashwagandha helped mood, and turkey tail helped gut symptoms. They take propranolol for POTS and megestrol with birth control for severe bleeding.
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What they tried
What they credit
Also tried
weed· Helped a lotashwagandha· Helped a lotmagnesium· Helped a lotacupuncture· Helpedbirth control pill (sprintec)· Helpedshrooms· Helped · wore offmegestrol· HelpedB1· HelpedB12· HelpedD3· Helpedmelatonin· Helpedcbd· Helpedsalt, fluids and compression· Helpedapple watch· Helpedturkey tail· Helpedxanax· Helpedtherapy· Helpedjournaling· Helpedpaxlovid· Helped · wore offtrazodone· Helpedaggressive resting· HelpedNAD supplements· No changeLDN· No changethyroid medication· No changeiron· No changeantibiotics· Worseantidepressants· Much worsebio identical progesterone· Not saidsteroids for throat· Not saidAZO· Not saidmaca root· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- antidepressants · Much worse
all it did was cause a year of complete mental anguish, and after all that, a horrible withdrawal and burnout
In context ↗ - acupuncture · Helped
I might've temporarily felt more energetic afterwards and refreshed
In context ↗ - birth control pill (sprintec) · Helped
i finally found one that seems to be working in conjunction with the megestrol (sprintec)
In context ↗ - weed · Helped a lot
cannabis changed my life as far as sleep routines go
In context ↗ - ashwagandha · Helped a lot
ashwagandha literally resolved my depression and mood swings
In context ↗ - pacing · Helped
because of my 2 years of diligent pacing my crashes are very short, 1-2 days at the moment
In context ↗ - magnesium · Helped a lot
extra strength magnesium practically cured my general anxiety disorder
In context ↗ - shrooms · Helped
when I did shrooms I definitely felt relief like you described
In context ↗ - megestrol · Helped
I take 80mg megestrol (synthetic progesterone) and it balanced my mood and stopped bleeding.
In context ↗ - B1 · Helped
I take B1, B12, D3, magnesium, and ashwaganda every night
In context ↗ - NAD supplements · No change
I take them every day (to no avail)
In context ↗ - melatonin · Helped
in the meantime I take melatonin and cbd which is ok short term
In context ↗ - cbd · Helped
I use a 30mg CBD + 30mg CBN as a sleep aid sometimes and it totally helps just not as much!
In context ↗ - propranolol · Helped
I take 60mg XR propranolol every morning and it saved my life
In context ↗ - salt, fluids and compression · Helped
I was drinking a gallon a day, compression socks, plus increased salt.
In context ↗ - apple watch · Helped
thanks to my watch I know I need to stop and rest
In context ↗ - turkey tail · Helped
TURKEY. TAIL!!!! I started taking 2 turkey tail supplements a day and it's done WONDERSSSS! for my IBS.
In context ↗ - xanax · Helped
I love the relief xanax provides for my anxiety but it does make me tired/feel hungover
In context ↗ - LDN · No change
same except for when I stopped and felt worse. so had to get back on although it didn't make anything better
In context ↗ - antibiotics · Worse
I ended up getting really sick the next morning and throwing up for hours. it was so draining, I haven't felt a crash like that in ages.
In context ↗ - thyroid medication · No change
I was so excited to start a thyroid medication and treat it ... nope. exactly the same.
In context ↗ - iron · No change
I had extremely low vitamin D and iron and I was so excited to get my levels up, but once I did i felt exactly the same.
In context ↗ - therapy · Helped
practicing buddhism and seeing a therapist have helped but the anger still arises
In context ↗ - mindfulness · Helped
the mindfulness u describe at the end has been key to me
In context ↗ - bio identical progesterone · Not said
FINALLY got my hormones compounded to be bio identical!
In context ↗ - journaling · Helped
I do also keep a journal where I write the main activities I've done every day
In context ↗ - nadolol · Helped a lot
my energy envelope has increased GREATLY, like 4x the amount genuinely, since taking this
In context ↗ - paxlovid · Helped
started and my throat was relieved in 10 minutes after my first dose
In context ↗ - steroids for throat · Not said
after steroids for my throat and paxlovid for the covid
In context ↗ - AZO · Not said
i took AZO at the same time to help with pain too
In context ↗ - trazodone · Helped
had the same effects as my prescribed sleep aid (trazodone) but without the side effects
In context ↗ - maca root · Not said
I also take maca root which supposedly boosts libido
In context ↗ - aggressive resting · Helped
aggressive resting seems to always reward me
In context ↗ - COVID vaccination as treatment · Not said
my whole body hurt so fucking bad after my booster, I wanted to d*e
In context ↗
Approaches: Beta-blockers · Mind-body practices · Pacing
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 |
|---|---|---|
| age 14 | ME/CFS onsetI have been sick since 14 and i'm 21 now.In context ↗ | Mild |
| third and fourth year | able to attend college and active about 6 hours a day with restI could be active for about 6 hours a day, with rest.In context ↗ | Mild |
| summer 2021 | developed POTS and was bedridden almost a monthI unexpectedly developed POTS and was bedridden for almost a month before i was able to be treated.In context ↗ | Severe |
| 2022-02 | housebound, dropped out of college, symptoms more severe than eversuddenly by year 5, I have developed pots, dropped out of college, and am home bound. symptoms are more severe than ever even with strict pacing.In context ↗ | Severe |
| September 2022 | baseline roughly quadrupledmy baseline practically quadrupled in september from where I was the entire summer.In context ↗ | Moderate |
| October 2022 | set back after overdoing appointments and outingsI am set back just how I felt over summer.In context ↗ | Moderate |
| March 2023 | POTS controlled on nadolol; energy envelope increased fourfoldmy energy envelope has increased GREATLY, like 4x the amount genuinely, since taking this.In context ↗ | Moderate |
| March 2023 | first COVID infection with Paxlovid reboundI felt amazing for about a week after finishing paxlovid, then rebounded (the covid came back), and have been pretty severe ever since.In context ↗ | Severe |
| September 2023 | still housebound long-term; heart rate controlled on nadololive been housebound a long time and my bpm is controlled.In context ↗ | Moderate |
Adverse events
- Antidepressants (unspecified), Trazodone (Desyrel)“all it did was worsen my anxiety” In context ↗ Mood or psychiatric effects
- Antidepressants (unspecified), Trazodone (Desyrel)“all it did was cause a year of complete mental anguish” In context ↗ Mood or psychiatric effects
- Antidepressants (unspecified), Trazodone (Desyrel)“a horrible withdrawal and burnout” In context ↗ Withdrawal problems
- “after trials and trials of sleep pills that made me feel violently hungover on top of 100 other symptoms that came with them” In context ↗ Side effects
- Progesterone (Prometrium, Utrogestan)“I take a progesterone for severe irregular periods and bleeding but it actually makes me drowsy” In context ↗ Side effects
- Propranolol (Inderal), Nadolol (Corgard)“my heart medicine makes me even more fatigued. i cant win.” In context ↗ Side effects
- Propranolol (Inderal)“sometimes I have to take it 3x a day and that makes me drowsier too” In context ↗ Side effects
- Alprazolam (Xanax)“I love the relief xanax provides for my anxiety but it does make me tired/feel hungover” In context ↗ Side effects
- Cannabis (THC, marijuana)“u do have to be extra careful w this on prop cus my heart will become really triggered if I accidentally smoke unmedicated” In context ↗ Heart rhythm problems
- COVID vaccination as treatment“my whole body hurt so fucking bad after my booster, I wanted to d*e” In context ↗ Side effects
- Antibiotics (unspecified)“in october I was on a 3 day antibiotic for a UTI. I felt awful” In context ↗ Side effects
- Antibiotics (unspecified)“I ended up getting really sick the next morning and throwing up for hours” In context ↗ Gut side effects
- Salt, electrolytes and fluids“I have POTS and talk electrolyte pills daily and that also can upset my stomach” In context ↗ Gut side effects
- Paxlovid / nirmatrelvir“was woken up out of my sleep with the most rancid taste in my mouth ever from paxlovid” In context ↗ Side effects
- Nadolol (Corgard)“at first after a few days I knew the dose was way too high. felt lethargic weird and awful” In context ↗ Side effects
- Paxlovid / nirmatrelvir“then rebounded (the covid came back), and have been pretty severe ever since” In context ↗ Made symptoms worse
- COVID vaccination as treatment“second shot killed me, and booster after that was even worse” In context ↗ Side effects
- Nadolol (Corgard)“I notice when I dose 2x a day my sleep disruption, "morning insomnia" as I call it is worse” In context ↗ Insomnia from treatment
Symptoms mentioned
Anxiety & low moodBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
my PEM only lasts 3-4 days
In context ↗ - POTS & dysautonomia
I unexpectedly developed POTS
In context ↗ - Sleep problems
I have pain in the ass insomnia
In context ↗ - Pain & fibromyalgia
extreme body aches
In context ↗ - Headaches & migraine
clouded, with headaches and racing thoughts
In context ↗ - Gut problems
I suffer from diarrhea and constipation
In context ↗ - Light & noise sensitivity
we are sound sensitive due to our sickness
In context ↗ - Breathlessness
I don't get short of breath turning over in bed
In context ↗ - Heart symptoms & palpitations
my heart rate shot to 150
In context ↗ - Anxiety & low mood
i have anxiety and insomnia
In context ↗ - Temperature regulation
my body is hot and sweating and my hands are so freezing cold
In context ↗
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