ME/CFS
No benefitIll for 20 years
Moderate ME/CFS getting worse, with flares, migraines and IBS, no improvement
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- 20 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I have BPD along with moderate M.E.
In context ↗ - Now: No benefit
my M.E. is steadily getting worse
In context ↗ - Began after: nothing they could name
thought to have had it since I was a teenager, if not before
Read from 29 of their posts and comments; links to the 19 this page draws on
Summary
They have had M.E. since their teens, diagnosed in 2020, and described themselves as having moderate M.E., though it has been getting worse, with crashes, palpitations, IBS, migraines and anxiety. A vaccine dose in 2021 caused an extreme reaction that passed in days, and COVID was the worst they had felt. CoQ10 with L-Carnitine eased their flares, amitriptyline 50mg mostly stopped their migraines and mostly controlled their IBS, and an ambulatory wheelchair gave them independence.
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What they tried
Also tried
current treatment· Helpednew medication· HelpedAcetyl L-Carnitine· HelpedCoQ10· Helpeddeep, mindful breaths· HelpedVisible· Helpedtravel bands· Helpedanti-sickness tablets· Helpedamitriptyline· HelpedSeroxat/Paroxetine/Paxil· No changeFatigue Sense· No changetherapy· Not saidBearable· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- Seroxat/Paroxetine/Paxil · No change
I've been trying to get off it because it doesn't work for me. No SSRI's have.
In context ↗ - current treatment · Helped
I've been in my current treatment for nearly five years now. Granted I don't have it every day as I can't afford to. It helps
In context ↗ - therapy · Not said
I'm in therapy currently.
In context ↗ - new medication · Helped
My new medication hasn't given me any side-effects and appears to be helping a little.
In context ↗ - Acetyl L-Carnitine · Helped
CoQ10 with L-Carnitine has definitely helped me with flares.
In context ↗ - CoQ10 · Helped
That's good that the CoQ10 probably isn't to blame here though. I think it helps a little
In context ↗ - deep, mindful breaths · Helped
I've been trying to deep, mindful breaths more. ... I find it helps
In context ↗ - Visible · Helped
I've been using the free version of Visible and still find it helpful!
In context ↗ - travel bands · Helped
I ended up having to wear those travel bands on my wrists
In context ↗ - anti-sickness tablets · Helped
taking anti-sickness tablets twice a day
In context ↗ - amitriptyline · Helped
Strangely, the lower doses didn't help but 50mg mostly stops them from fully taking hold.
In context ↗ - Fatigue Sense · No change
I've been trying Fatigue Sense but not finding it as good as I'd hoped
In context ↗ - Bearable · Not said
I got into the habit of tracking pretty much everything on Bearable
In context ↗ - COVID vaccination as treatment · Not said
I had my second vaccine on Saturday and had an extreme reaction.
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. The chart starts 15.6 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| teenage years | M.E. began in their teens, diagnosed officially in 2020Diagnosed officially in 2020, but thought to have had it since I was a teenager, if not before.In context ↗ | Not stated | |
| August 2021 | extreme reaction to second Pfizer vaccine; dizzy and lying down most of the timeI had my second vaccine on Saturday and had an extreme reaction.In context ↗ | Moderate | |
| September 2022 | new medication with no side effects helping a littleMy new medication hasn't given me any side-effects and appears to be helping a little.In context ↗ | Moderate | |
| February 2024 | M.E. steadily getting worse; heart palpitations worse than ever and a crash they had not recovered frommy M.E. is steadily getting worseIn context ↗ | Moderate | |
| October 2024 | CoQ10 with L-Carnitine helped with flaresCoQ10 with L-Carnitine has definitely helped me with flares.In context ↗ | Moderate | CoQ10 / ubiquinol |
| October 2026 | still ill; amitriptyline 50 mg mostly stops their migraines and keeps their IBS under control, uses an ambulatory wheelchairI'm on it as a migraine prophylaxis. Strangely, the lower doses didn't help but 50mg mostly stops them from fully taking hold.In context ↗ | Moderate |
Adverse events
- COVID vaccination as treatment“I had my second vaccine on Saturday and had an extreme reaction.” In context ↗ Side effects
- Paroxetine (Paxil)“I was prescribed Seroxat/Paroxetine/Paxil around 7 years ago and haven't been able to get off it due to the withdrawal that kicks in.” In context ↗ Withdrawal problems
- Paroxetine (Paxil), Amitriptyline (Elavil)“I'm on medication but I'm trying to get off of one of them that has horrible withdrawal.” In context ↗ Withdrawal problems
- L-carnitine“I've started taking this but it's been causing a bit of an upset stomach.” In context ↗ Gut side effects
- L-carnitine“It did seem to be keeping me awake if I took it at night.” In context ↗ Insomnia from treatment
- COVID vaccination as treatment“When i got the first vaccine it made me so unwell we had to call 111 for advice.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodGut problemsHeadaches & migraineHeart symptoms & palpitationsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
CoQ10 with L-Carnitine has definitely helped me with flares. When I stopped taking it I seemed to crash harder.
In context ↗ - POTS & dysautonomia
I'm feeling dizzy more often and having to spend most of my time lying down.
In context ↗ - Gut problems
I have IBS which it seems to be triggering.
In context ↗ - Pain & fibromyalgia
my pain was way worse along with my IBS
In context ↗ - Headaches & migraine
I'm on it as a migraine prophylaxis.
In context ↗ - Heart symptoms & palpitations
I very much suspect the heart rate is causing fatigue too.
In context ↗ - Anxiety & low mood
I also have an anxiety disorder which has flared it's ugly head with a passion.
In context ↗