ME/CFS
Severe → somewhat betterIll 19 years before improving or writingNeeds ongoing treatment
Housebound and often bedbound with ME/CFS, somewhat better with pacing and POTS treatment
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 19 years
- Last post
- Feb 2025
In their words
- Condition: ME/CFS
I've had ME/CFS since EBV at 16.
In context ↗ - At worst: Severe
I've been severe since - 90% bedbound.
In context ↗ - Now: Somewhat better
went to lunch in August and was 90% bedbound up until this recent improvement. ... I'm still weak, and there's still fatigue
- Began after: glandular fever or EBV
Originally after mono when I was 16.
Read from 103 of their posts and comments; links to the 34 this page draws on
Summary
Plover 98227 fell ill with ME/CFS after glandular fever at 16, severe for a few years, then mild for over a decade. In early 2022, pushing through a week of daily gym sessions around the time of COVID left them 90% housebound and often bedbound since then. From 2024, doctor-guided POTS and migraine treatment and pacing brought gradual improvement; in 2025 thyroid hormone replacement for hypothyroidism led to further improvement, though fatigue, weakness and cognitive problems remained.
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What they tried
What they credit
Also tried
Vyvanse· Helpedaggressive rest· HelpedApple Watch HRV monitoring and Beat Watcher app· Helpedlymphatic massage· Helpedtaurine· Helpedtherapy and CBT· Helpedcompression and salt· No changecompression and salt· No changecrystals· No changeadderall· WorseStimulants (methylphenidate, amphetamines)· Worsetopiramate· Worseboxing / daily gym· Much worsefludrocortisone· Not saidmidodrine· Not saiddesmopressin· Not saidVisible app and armband· Not saiddeep breathing· Not saiddiet· Not said
Their words about each treatment
- adderall · Worse
adderall really did a number on me when they wore off. Extended release adderall was a little better
In context ↗ - Vyvanse · Helped
Barely notice an effect when I’m severe but helps a lot when I’m moderate.
In context ↗ - boxing / daily gym · Much worse
I followed advice for someone with just POTS and started working out everyday, despite worsening symptoms. After a week, I physically couldn’t get out of bed.
In context ↗ - fludrocortisone · Not said
I took fludrocortisone for a bit but switched off to try desmopressin
In context ↗ - pacing · Helped
accepting that I must pace and I must rest, and learning to actually listen to my body instead of pushing for more
In context ↗ - midodrine · Not said
I take very very low dose midodrine (raised BP) along with propranolol, as needed.
In context ↗ - propranolol · Helped
I started a beta blocker (propranolol) in January to treat my POTS ... The social anxiety feeling I'd get when I left the house completely went away.
In context ↗ - desmopressin · Not said
switched off to try desmopressin (not the same mechanisms but used for similar results)
In context ↗ - topiramate · Worse
I tried topiramate before Ami but it made the derealization/disassociation soo bad.
In context ↗ - amitriptyline · Helped
I’ve been on amitriptyline for about a month at 25 mg. It’s helped with sleep and was prescribed as a migraine preventative - which also seems to be working.
In context ↗ - sumatriptan · Helped
I also have sumatriptan as an abortive.. it’s been working well
In context ↗ - aggressive rest · Helped
I aggressively rested. I stayed in bed with little stimulation for as long as I needed.
In context ↗ - Apple Watch HRV monitoring and Beat Watcher app · Helped
Yes it’s been really helping me pace, too.
In context ↗ - Visible app and armband · Not said
I signed up for Visible and am waiting for their monitor to arrive in the mail
In context ↗ - slow and low gradual exercise (rowing machine) · Helped
slow and low, gradual exercise - I got a rowing machine
In context ↗ - deep breathing · Not said
Deep breathing to try and not freak out about it being a permanent state.
In context ↗ - lymphatic massage · Helped
is it the lymphatic massage that’s given me a decent few weeks
In context ↗ - levothyroxine · Helped a lot
I started hypothyroidism treatment a week ago and have seen significant improvement.
In context ↗ - compression and salt · No change
I have POTS and got nothing out of compression and salt.
In context ↗ - taurine · Helped
9/10 times it calms it down within 10 minutes so I can fall asleep.
In context ↗ - therapy and CBT · Helped
It helped me a lot - to cope, to find purpose in this bullshit
In context ↗ - crystals · No change
I tried crystals. Didn’t work, but ended up with some cool bracelets.
In context ↗ - diet · Not said
my diet, pacing, the 35 pills I take a day
In context ↗
Approaches: Beta-blockers · Other drugs and medicines · Pacing · Physiotherapy and rehab · Thyroid hormones · Tricyclic antidepressants
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 |
|---|---|---|---|
| 2006 | ME/CFS began after mono at age 16Originally after mono when I was 16. It was bad for a few years after thatIn context ↗ | Severe | |
| ages 17-20 | severe stretch through their late teensI was severe ages 17-20 but eventually became mild by chanceIn context ↗ | Severe | |
| by my 20s | became mild for over a decadeBy my 20’s I was mild - to most people, I was living a relatively normal lifeIn context ↗ | Mild | |
| early 2022 | crashed after pushing through daily gym/boxing, with COVID around the same timeby the end of the first week I was bed bound. I have not really recovered. That was 2 years agoIn context ↗ | Severe | |
| 2024 | got out of bedbound with dysautonomia doctor's medication plan and pacinghave gotten to housebound (and can leave with lots of planning) vs. bedbound which is where I was at a year agoIn context ↗ | Moderate | |
| summer 2024 | crash after flu, could barely speak for weeksI was like this after getting the flu over the summer ... It lasted about 6 weeks for me. I could barely speak.In context ↗ | Severe | |
| August 2024 | went to lunch with a friend and became 90% bedboundwent to lunch in August and was 90% bedbound up until this recent improvementIn context ↗ | Severe | |
| February 2025 | levothyroxine for hypothyroidism cleared cognition; still weak and fatiguedI started hypothyroidism treatment a week ago and have seen significant improvementIn context ↗ | Severe | Levothyroxine (Synthroid) |
Adverse events
- Graded rehab and self-made programmes“I followed the general advice for treatment for it and ended up worse off from repeated attempts to exercise through symptoms.” In context ↗ Made symptoms worse
- Amitriptyline (Elavil)“Sleepiness is definitely a side effect for me so I just take it in the evening, a few hours before bed.” In context ↗ Side effects
- Topiramate (Topamax)“I tried topiramate before Ami but it made the derealization/disassociation soo bad.” In context ↗ Mood or psychiatric effects
- Amphetamine salts (Adderall)“adderall really did a number on me when they wore off.” In context ↗ Withdrawal problems
- CBT and psychotherapy“Therapy helped me but I think it also made me worse.” In context ↗ Made symptoms worse
- “I tried to Apple AirPods Pro (the full headphone style) because it’s noise cancelling is supposedly the best. It was, but gave me a massive headache.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
If I have guests, or do something mentally/emotionally taxing ... my symptoms will be more severe a few days afterwards
In context ↗ - Brain fog
The fatigue, fog/cognitive issues, weakness, joint pain and sensitive to damn near every kind of stimulus remain
In context ↗ - POTS & dysautonomia
I have POTS and got nothing out of compression and salt
In context ↗ - Headaches & migraine
the daily migraine pain has been gone since new meds last summer
In context ↗ - Sleep problems
I’ve struggled with insomnia my whole life but lately I’ve been sleeping better than… ever?
In context ↗ - Pain & fibromyalgia
weakness, joint pain and sensitive to damn near every kind of stimulus remain
In context ↗ - Muscle weakness
I'm still weak, and there's still fatigue
In context ↗ - Light & noise sensitivity
Days like this … I turn off everything. No lights, no sound, dark room.
In context ↗ - Heart symptoms & palpitations
I literally can't get out of bed to even use the bathroom because my heart rate spikes to 130
In context ↗ - Anxiety & low mood
had suicidal thoughts about a year ago
In context ↗ - Temperature regulation
During the winter, I’m moderate. Summer knocks me out though.
In context ↗
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