ME/CFS
Severe → relapsedIll 7 years before improving or writing
Housebound or bedbound with ME/CFS, improved then relapsed after propranolol and LDN
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I just got diagnosed with moderate me/cfs (housebound a little bit bedbound) but probably had mild me cfs for over 5-10 years now
In context ↗ - At worst: Severe
i was mild for 3-4 years and got mtself to severe in a year because of adhd meds
In context ↗ - Now: Relapsed
I recovered from moderate to mild by starting propanol 40mg but then after a month it seems like it's not working that much and I am heading back into moderate 😭
In context ↗ - Began after: another virus
a whole lots of viruses in 2019
Read from 35 of their posts and comments; links to the 22 this page draws on
Summary
After several viruses in 2019 she worsened from mild to moderate-severe ME/CFS, with ADHD stimulants, work and social overexertion driving crashes. She stopped work in December 2025 and was housebound or bedbound for nine months. Propranolol 40 mg lifted her to mild, but the benefit faded after a month; LDN 0.5 mg lengthened walks and eased PEM. By late October 2026 weekly outings had brought her back towards moderate.
Ask Miruvor AI
What they tried
What they credit
Also tried
birth control (Seasonique)· Helped a lotZoloft (sertraline)· Helpedvaltrex· Helped · wore offyoga nidra· Helpedmestinon· Worseoxygen therapy· Worsetmj physio treatment· Worsevibration plate· WorseADHD meds (Vyvanse, dexies)· Much worseADHD meds (Vyvanse, dexies)· Much worsefamycilovir· Not saidOura ring· Not saidbearable app· Not saidpacing· Not saidPilates· Not saidhigh-protein diet· Not said
Their words about each treatment
- propanol · Helped a lot
I recovered from moderate to mild by starting propanol 40mg but then after a month it seems like it’s not working that much and I am heading back into moderate
In context ↗ - LDN · Helped
I just started LDN 3 weeks ago at 0.5 and I can already feel a difference somehow I can walk longer and my PEM crash is less intense
In context ↗ - Zoloft (sertraline) · Helped
Zoloft really helps me for anxiety sepression and ocd
In context ↗ - ADHD meds (Vyvanse, dexies) · Much worse
Vyvanse and dexies allowed me to push through and crashed into severe from mild
In context ↗ - birth control (Seasonique) · Helped a lot
Having birth control who stops my period has been a Life saving
In context ↗ - valtrex · Helped
I’ve became tolerant to 1gr of valtrex so now I am trying the famycilovir
In context ↗ - famycilovir · Not said
now I am trying the famycilovir
In context ↗ - mestinon · Worse
I was prescribed mestinon but felt unwell when I tried taking it
In context ↗ - oxygen therapy · Worse
I recently went to a centre where I tried oxygen therapy and I hated it and it made me crash
In context ↗ - Oura ring · Not said
I recently got an Oura ring to help with pacing and understanding my limits
In context ↗ - bearable app · Not said
So I’ve been using bearable for symptoms tracking since February (I recommend it as you can really personalize it)
In context ↗ - Apple Watch with the stress app · Helped
The only thing that helps me to avoid PEM is the Apple Watch with the stress app!
In context ↗ - pacing · Not said
reduced my work hours and time in office and social time in hope I could pace myself
In context ↗ - yoga nidra · Helped
Try yoga nidra ally on YouTube it’s the only thing that gives me total rest according to my health tracker
In context ↗ - lymphatic drainage massage · Helped
I would do lymphatic drainage massage weekly. I am moderate and it’s been so helpful but it’s expensive!
In context ↗ - tmj physio treatment · Worse
I am pretty sure my new tmj physio treatment is sending me into intense PEM crash that last several days
In context ↗ - vibration plate · Worse
I’ve bought a vibration plates 2 months ago and been using it on and off for 5-10 min mostly sitting down
In context ↗ - Pilates · Not said
managed to get my dream body by doing 10 min Pilates at home everyday and eating LOTS of protein
In context ↗ - high-protein diet · Not said
Avoid peanut butter bread pasta etc if you can!
In context ↗ - treatment for celiac · Helped
for me was celiac and when it was treated I felt much better for a year then got sick and crashed again
In context ↗
Approaches: Alternative therapies · Beta-blockers · Diet · 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 | After |
|---|---|---|---|
| 2019 | illness began after several viruses, then worsened from milda whole lots of viruses in 2019 and progressively got from mild to mod-severeIn context ↗ | Mild | |
| early 2025 | severe flu-like illness (COVID/flu negative), gradually worsened afterEarly 2025: Had a severe flu-like illness (COVID/flu negative). Since then, I’ve gradually worsened.In context ↗ | Mild | |
| late 2025 | overdid it with 3 concerts in one week and crashed hardThis helped, but I overdid it (3 concerts in one week) and crashed hard. I’m now in prolonged PEM.In context ↗ | Moderate | |
| December 2025 - September 2026 | crashed to moderate-severe, stopped work, housebound and bedbound for nine monthshad to stop work and stayed housebound/bedbound for 9 months until I tried propanol and felt much better into mild me cfsIn context ↗ | Severe | |
| 2026-04-03 | feeling more moderate but still housebound, crashing after cleaning or walks beyond 4000 stepsbut now feeling more moderate although I am pretty much housebound and I tend to crash if I do too much cleaning in a dayIn context ↗ | Moderate | |
| 2026-05-09 | on LDN three weeks, can walk longer and PEM crashes are less intenseI just started LDN 3 weeks ago at 0.5 and I can already feel a difference somehow I can walk longer and my PEM crash is less intense.In context ↗ | Moderate | Low-dose naltrexone |
| 2026-10-28 | recovered from moderate to mild after starting propranolol, then it stopped workingI recovered from moderate to mild by starting propanol 40mg but then after a month it seems like it’s not working that much and I am heading back into moderateIn context ↗ | Mild | Propranolol (Inderal) |
| October 2026 | crashed progressively longer each week after one night outfirst I would crash for one day then the week after 2 days then third week 3 daysIn context ↗ | Moderate | |
| 2026-10-29 | not back to last month's level and afraid of a lowered baselineeven if I am better after the 3 days I am stil not as good as I was last month so I am scared I lowered my baselineIn context ↗ | Moderate |
Adverse events
- “I notice I have a big crash that last for 1-2 days after each appointment” In context ↗ Made symptoms worse
- “I got mouth ulcers and herpes outbreak and sore throat which I am pretty sure was triggered by the physio” In context ↗ Other
- Lisdexamfetamine (Vyvanse, Elvanse), Dexamfetamine (Dexedrine)“I went from mild to severe because of adhd meds” In context ↗ Made symptoms worse
- Vibration plate“I did 10 min standing up and it gave me terrible back pain That lasted over a week i couldnt even bend!” In context ↗ Other
- Hyperbaric oxygen (HBOT)“I tried oxygen therapy and I hated it and it made me crash” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“I was prescribed mestinon but felt unwell when I tried taking it” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodFlu-like symptomsHeart symptoms & palpitationsPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I crash 24-72h after EVERYTIME I go to the office or do something social for too long
In context ↗ - Sleep problems
I get hypersomnia when I have PEM!
In context ↗ - Pain & fibromyalgia
The pain in my jaw muscles and even neck is horrible
In context ↗ - Anxiety & low mood
I am feeling so depressed and angry by this disease
In context ↗ - Flu-like symptoms
I got mouth ulcers and herpes outbreak and sore throat
In context ↗ - Heart symptoms & palpitations
10–15 minutes of light activity pushes it to 100–115 bpm
In context ↗
Ask Miruvor AI
Similar stories
-
Bedbound for months with ME/CFS, now much better with nicotine patches and diet
A UK teacher developed chronic fatigue after a COVID vaccine in May 2021, becoming housebound in 2023 and bedbound for months, losing his job, house and relationship. He credits nicotine patches, weight loss and a meat-and-vegetable diet with lifting him…
-
Bedbound for months with ME/CFS, now mild after pacing and MCAS/POTS treatment
A CNA in their early twenties, they crashed in February 2025 and were bedbound for months, unable to move, talk or tolerate light. Pacing, MCAS and POTS treatment, low-dose naltrexone and a knowledgeable PA took them from severe to mild, and they returned to…
-
Mostly homebound with ME/CFS, somewhat better after mould avoidance and pacing
Sequoia 34929 dates their ME/CFS to a post-viral (cytomegalovirus) onset around 2005, worsened by EBV in 2011 and a mild COVID infection in 2022; pushing themselves made them much worse, and they are unable to work and mostly homebound. They credit mould…
-
Long COVID: unable to work for months, now somewhat better after antihistamines and LDN
After covid in March 2024, they developed long covid with EBV reactivation, histamine intolerance, dizziness and sensory overload, and could not work for months. Antihistamines with a low-histamine diet helped mood and sleep; LDN helped, and acupuncture…