ME/CFS
Moderate → relapsedIll 2 years before improving or writing
Mostly homebound with ME/CFS, briefly improved then relapsed
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
Then last year when my me/cfs/long covid/POTS health crisis came on, it began with a 6 week heavy period.
In context ↗ - At worst: Moderate
But I'm mostly homebound now.
In context ↗ - Now: Relapsed
I had a glass of wine after 2 months of relative wellness and it f'd up my baseline. ... But I'm mostly homebound now.
Read from 92 of their posts and comments; links to the 43 this page draws on
- Nov 2025
- Mar 2026
- Dec 2024
- May 2025
- Jan 2025
- Aug 2026
- Jan 2025
- Jul 2025
- Feb 2025
- Jan 2025
- May 2025
- Jan 2025
- Feb 2026
- Mar 2025
- Sep 2025
- Dec 2024
- Jul 2025
- Dec 2025
- Sep 2025
- May 2025
- May 2025
- Dec 2025
- Feb 2026
- Mar 2025
- Nov 2025
- Apr 2025
- May 2025
- Nov 2025
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- Feb 2026
- Apr 2026
- Jul 2026
- Nov 2024
- Dec 2024
- Mar 2025
- May 2025
- Jul 2025
- Oct 2025
- Nov 2024
- Mar 2025
- Aug 2025
- Feb 2025
- Oct 2025
Summary
A woman in her forties fell ill in mid-2024, after a six-week heavy period, with insomnia, brain fog, migraines and crashes. She became mostly homebound and crashed after appointments. A February 2025 respiratory infection briefly improved her heart rate and stamina, and guanfacine with NAC brought minor gains, mainly easier phone calls. She still paces and remains mostly homebound.
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What they tried
What they credit
Also tried
Magnesium Glycinate· Helped a lotSeroquel (quetiapine)· Helped a lotFlare Audio ear buds/sound filter· Helped a lotClonidine· Helpedpropranolol· Helped18mg Iron/Vit C gummy· HelpedB12 sublingual drops· HelpedMagnesium Citrate· HelpedTrazadone· Helpedantidepressants· HelpedDBT· HelpedEMDR· HelpedTMS· HelpedECT· HelpedLorazepam· Helpedmigraine rescue med· HelpedSleep Boost (MIT/Samsung Watch app)· Helpeddeep breathing exercises· Helped · wore offsleep hygiene and light dimming· Helpedelectric blanket· Helpedreading glasses with FL 41 tint· Helpedmultivitamins· WorseCymbalta· WorseCBT· Worseprogesterone (birth control)· Worseprogesterone (birth control)· WorseAmofit S+ vagus nerve stimulator· WorseFatigueSense· Not saidFlaxseed Oil supplement for Omega 3s, 6s, 9s· Not saidmelatonin· Not saidcold/ice packs· Not saidMetformin· Not saidCombined birth control (pill, patch or ring)· Not saidProgestin-only birth control (mini pill, implant or shot)· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- Visible · Helped
The first very valuable information it gave me was the my heart rate goes crazy high in the shower
In context ↗ - Welltory · Helped
The health score gave me a little heads up about a crash.
In context ↗ - Samsung Health app with a Samsung Galaxy Watch 6 · Helped
overall it's been extremely useful having the Samsung Watch 6
In context ↗ - FatigueSense · Not said
I am still in the calibration phase. The app is still a bit rough around the edges.
In context ↗ - pacing · Helped
I'm pacing now and and crashing less. But I'm mostly homebound now.
In context ↗ - Clonidine · Helped
Currently I only use it at night to help with nightmares. It works really well for this purpose!!
In context ↗ - propranolol · Helped
I'm pretty sure the beta blocker is the one that's letting me answer the phone without panic.
In context ↗ - 18mg Iron/Vit C gummy · Helped
8 weeks later my iron level didn't really change, the b12 was still high, but my feeritin had improved to low normal levels.
In context ↗ - multivitamins · Worse
I would too frequently vomit after taking them. I've tried 2 different brands, but I've given up for now
In context ↗ - B12 sublingual drops · Helped
I supplemented with b12 drops and a multivitamin with iron.
In context ↗ - Magnesium Citrate · Helped
because of heart rhythm trouble I was having and I have improved in the last 2 months, so maybe it helped.
In context ↗ - Magnesium Glycinate · Helped a lot
Magnesium Glycinate helped me with falling asleep. Worked amazingly from the very first time taking it.
In context ↗ - Flaxseed Oil supplement for Omega 3s, 6s, 9s · Not said
I don't know if it actually does anything, but I figure it can't hurt since I don't have the greatest diet.
In context ↗ - prescription Vitamin D · Helped
For the last 3 months I have been the most consistent I've ever been with the Vitamin D and my levels improved a bit and I do feel a bit better.
In context ↗ - Seroquel (quetiapine) · Helped a lot
50mg Seroquel is a miracle drug to help me fall asleep!
In context ↗ - Trazadone · Helped
In the past I used Trazadone and it definitely helped.
In context ↗ - melatonin · Not said
I've tried trazadone, melatonin, clonidine, and others I can't remember now.
In context ↗ - antidepressants · Helped
Antidepressants have never made me happy, so to speak. But they have been most useful when I have been despairing
In context ↗ - Cymbalta · Worse
I was on it for depression, but I had side effects of tinnitus and migraine.
In context ↗ - CBT · Worse
which now I think was often fatigue and sometimes PEM. So that was harmful in the long run.
In context ↗ - DBT · Helped
Various therapies have helped to some degree - CBT, DBT, EMDR, TMS, ECT, meds.
In context ↗ - TMS · Helped
after a course of TMS, my experience of those bright, flickery headlights changed. They look dazzling now instead of painful.
In context ↗ - Lorazepam · Helped
Lorazepam - When I'm in the middle of a PTSD attack, remembering to take my as needed sedative helps a lot.
In context ↗ - migraine rescue med · Helped
I have an as needed rescue med and it helps so much if I take it early enough.
In context ↗ - cold/ice packs · Not said
Cold/ice packs - They go on the top of my head in a migraine.
In context ↗ - NAC · Helped
I added NAC and then Malic Acid and my brian fog lifted enough for me to notice time passing by instead of being zoned out most of the day.
In context ↗ - Metformin · Not said
Stared Metformin yesterday
In context ↗ - Guanfacine · Helped
For a while I noticed a real improvement in my communications with people in the world (vs. Just family). Answering the phone became easier. It took a couple months to see this improvement.
In context ↗ - progesterone (birth control) · Worse
With the progesterone only version, I had life-ruining night sweats.
In context ↗ - Sleep Boost (MIT/Samsung Watch app) · Helped
I joined the study, and I have to say it is helping me. I'm not having as many wakeful periods at night.
In context ↗ - deep breathing exercises · Helped
For decades, I used deep breathing techniques to lower my stress, lower my heart rate and just generally feel better. Suddenly it didn't work
In context ↗ - sleep hygiene and light dimming · Helped
One that helps me is lighting.
In context ↗ - electric blanket · Helped
I just couldn't tolerate being cold at home during the winter and got myself an electric blanket. So amazing!
In context ↗ - Flare Audio ear buds/sound filter · Helped a lot
I found a product that helped me like a miracle.
In context ↗ - reading glasses with FL 41 tint · Helped
I'm sensitive to migraine so I got myself reading glasses with FL 41 tint. Now my screen usage is so much more comfortable.
In context ↗ - Amofit S+ vagus nerve stimulator · Worse
I have some early positive results using my Amofit S+ vagus nerve stumulator on Immune mode when I'm feeling horrible all over. ... In the past I tried an Amofit S+ and it really messed me up.
- Combined birth control (pill, patch or ring) · Not said
It almost immediately caused pain, reddness and heat in my breasts
In context ↗ - Progestin-only birth control (mini pill, implant or shot) · Not said
With the progesterone only version, I had life-ruining night sweats. I'd wake up soaked, freezing and dehydrated.
In context ↗ - COVID vaccination as treatment · Not said
I just want the muscles in the shoulder where I got my flu and covid vaccines 2 months ago to stop hurting!!
In context ↗
Approaches: Other drugs and medicines · Pacing · Supplements
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 | After |
|---|---|---|---|
| summer 2024 | health crisis began with a six-week heavy periodThen last year when my me/cfs/long covid/POTS health crisis came on, it began with a 6 week heavy period.In context ↗ | Moderate | |
| 2024-11-30 | severe migraine and PEM after exceeding pace points on 5 of 6 daysLast week I went over my pace points for 5 days out of 6 before I came down with the Migraine on Monday early morning 11/25In context ↗ | Moderate | |
| 2024-12-10 | many new symptoms, repeated urgent care, ER and GP visits, no answersWhatever happened to me over the summer, I now have so many symptoms that since August I've been to urgent care 3 times, the ER twiceIn context ↗ | Moderate | |
| 2025-03-12 | most symptoms better in the two weeks after a respiratory infectionAnd in the two weeks since, most of my symptoms have been better.In context ↗ | Mild | |
| 2025-05-06 | brain fog lifted a little and short activity bouts became possibleI added NAC and then Malic Acid and my brian fog lifted enough for me to notice time passing by instead of being zoned out most of the day.In context ↗ | Moderate | NAC (N-acetylcysteine) |
| 2025-05-17 | baseline worsened after one glass of wineI had a glass of wine after 2 months of relative wellness and it f'd up my baseline.In context ↗ | Moderate | |
| 2025-07-05 | brain fog became much worseWhile many of my symptoms have recently had some mild improvement, brain fog has gotten so much worse.In context ↗ | Moderate | |
| 2025-10-31 | easier to answer the phoneSo far, the most notable improvement is an increaded ability to answer the phone.In context ↗ | Moderate | Guanfacine |
| 2026-03-28 | pacing, crashing less, but mostly homeboundI'm pacing now and and crashing less. But I'm mostly homebound now.In context ↗ | Moderate |
Adverse events
- CBT and psychotherapy“I used CBT to convince myself to do more and push through "resistance" which now I think was often fatigue and sometimes PEM. So that was harmful in the long run.” In context ↗ Made symptoms worse
- “using a particular medication coincided with a troubling symptom. I stopped that med, and I hardly ever have that symptom anymore.” In context ↗ Side effects
- Duloxetine (Cymbalta)“I was on it for depression, but I had side effects of tinnitus and migraine.” In context ↗ Side effects
- Guanfacine“When I took Guangfacine in the evening, it did NOT mix well with my night meds. I was crazy sedated.” In context ↗ Side effects
- Combined birth control (pill, patch or ring)“It almost immediately caused pain, reddness and heat in my breasts” In context ↗ Side effects
- Progestin-only birth control (mini pill, implant or shot)“With the progesterone only version, I had life-ruining night sweats. I'd wake up soaked, freezing and dehydrated.” In context ↗ Side effects
- COVID vaccination as treatment“I just want the muscles in the shoulder where I got my flu and covid vaccines 2 months ago to stop hurting!!” In context ↗ Side effects
- Heat therapy (heating pads, heat packs)“What look like histamine allergic reactions, sore muscles” In context ↗ Allergic reaction / anaphylaxis
- Vagus nerve stimulation“In the past I tried an Amofit S+ and it really messed me up.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
I basically crash immediately after hard events, and it can last days.
In context ↗ - Brain fog
Brain fog is still as bad as ever
In context ↗ - POTS & dysautonomia
when I don't get enough water my heart pounds, and I get dizzy (I may have pots or dysautonimia)
In context ↗ - Sleep problems
I've struggled with insomnia since age 5.
In context ↗ - Pain & fibromyalgia
I've got sore muscles, sore tendons and skin abrasions/cuts that are taking forever to heal.
In context ↗ - Headaches & migraine
frequently get a migraine the next day
In context ↗ - Heart symptoms & palpitations
When I get heart palpitations, I use the ECG function to measure my heart rhythm.
In context ↗ - Muscle weakness
I get weak, sweat like a sprinkler, and am susceptible to dizzy spells and near fainting.
In context ↗ - Temperature regulation
I am sensitive to both cold and hot in different ways.
In context ↗ - Light & noise sensitivity
I find my baseball caps and sun hats really useful when I'm particularly light sensitive.
In context ↗ - Anxiety & low mood
I'm still depressed, but things are lighter, I can do more and think more clearly.
In context ↗ - Flu-like symptoms
Crashes in warm months look like me getting a cold with a sore throat, raised temperature but no fever while feeling very feverish, and weakness.
In context ↗ - Breathlessness
difficulty breathing through my nose
In context ↗ - Mast cell (MCAS) & allergies
What look like histamine allergic reactions
In context ↗ - Tinnitus
I had side effects of tinnitus and migraine.
In context ↗
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