ME/CFS
Mild → no benefitIll for 23 yearsNeeds ongoing treatment
Mild ME/CFS for 23 years, then worst crash in a decade, no improvement
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 23 years
- Last post
- Mar 2024
In their words
- Condition: ME/CFS
I've been mild since ME started 23 years ago
In context ↗ - At worst: Mild
I've been mild since ME started 23 years ago
In context ↗ - Now: No benefit
I've been getting steadily worse over thr last 9 months since I've been back at work after maternity leave
In context ↗
Read from 15 of their posts and comments; links to the 12 this page draws on
Summary
An Australian lawyer who had been mildly ill with ME/CFS for 23 years and was still working four days a week. Going back to work early from maternity leave in 2023 brought nine months of decline and then her worst crash in a decade; weeks off work and rest didn't help and she was worse than before. She was diagnosed with fibromyalgia, and low-dose naltrexone, still being trialled at 4.5mg, disturbed her sleep.
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What they tried
Also tried
magnesium· Helpedelectrolytes· HelpedWarm baths with Epsom salts· Helpedleg massage by partner· HelpedIron supplement· Helpedcomtraceptive pill· Helpedcomplex vitamin B· Helpedthyroxine· Helpedantidepressants· No changeprednisolone· No change4 weeks off work to rest· No changeLDN· WorseCoQ10· Not said
Their words about each treatment
- antidepressants · No change
doctors jumped straight to mental illness in my teens and prescribed antidepressants which did nothing
In context ↗ - LDN · Worse
I have noticed issues with my sleep quality and consistently increased heart rate since I started taking LDN though.
In context ↗ - prednisolone · No change
I took it for 4 days because I was in excruciating muscle pain and refused opioids. It did absolutely nothing for me, unfortunately.
In context ↗ - 4 weeks off work to rest · No change
I've been off work for 3 weeks now so I could rest (which has not helped at all - I'm actually worse now)
In context ↗ - magnesium · Helped
taking magnesium and electrolytes help
In context ↗ - Warm baths with Epsom salts · Helped
Warm baths with Epsom salts
In context ↗ - leg massage by partner · Helped
massages my legs pretty much every night or I can't sleep from the pain
In context ↗ - Iron supplement · Helped
Iron supplement, magnesium, comtraceptive pill to skip periods because my body sucks at iron
In context ↗ - comtraceptive pill · Helped
comtraceptive pill to skip periods because my body sucks at iron
In context ↗ - complex vitamin B · Helped
complex vitamin B
In context ↗ - thyroxine · Helped
thyroxine (my thyroid is all over the place otherwise)
In context ↗ - CoQ10 · Not said
I just started CoQ10 last week because why the heck not
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| about 2001 | ME began, mild from the startI've been mild since ME started 23 years agoIn context ↗ |
| 2023 | returned to work early from maternity leave, steady decline over nine monthsI've been getting steadily worse over thr last 9 months since I've been back at work after maternity leaveIn context ↗ |
| January 2024 | hard crash over Christmas, not recovering with restI crashed hard 2 weeks ago and even with all the resting I've been doing over thr Christmas break, I'm still not really any better.In context ↗ |
| February 2024 | off work for weeks, resting, getting worse, mostly in bedI've been off work for 3 weeks now so I could rest (which has not helped at all - I'm actually worse now).In context ↗ |
| March 2024 | back at work barely, cutting to three days and changing role, still stuck in the crashI guess I'd be considered mild because I'm still able to work (barely).In context ↗ |
Adverse events
- Low-dose naltrexone“I have noticed issues with my sleep quality and consistently increased heart rate since I started taking LDN though.” In context ↗ Insomnia from treatment
- Low-dose naltrexone“consistently increased heart rate since I started taking LDN though” In context ↗ Heart rhythm problems
- Low-dose naltrexone“I had side effects for the first month but haven't had any since (except increased day time sleepiness).” In context ↗ Side effects
- Low-dose naltrexone“currently at 4.5mg which I was taking in the morning but finding significantly increased dsy sleepiness” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogHeart symptoms & palpitationsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I'm also in pretty bad rolling PEM
In context ↗ - Pain & fibromyalgia
I almost always have muscle pain in my legs, especially my calves
In context ↗ - Sleep problems
Mine always says I get enough sleep but it's not restorative.
In context ↗ - Brain fog
(LOL brain fog)
In context ↗ - Anxiety & low mood
even with the sleep deprivation and severe anxiety the first 4 months
In context ↗ - POTS & dysautonomia
I massively overdid at work and passed out
In context ↗ - Heart symptoms & palpitations
consistently increased heart rate since I started taking LDN
In context ↗