ME/CFS with chronic pain and PEM, much better on low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 21 years
- Last post
- Dec 2023
In their words
- Condition: ME/CFS
my doc is *very* familiar with ME and dysautonomia
In context ↗ - At worst: Moderate
while only feeling like I got hit by a bus for a few hours afterwards, rather than weeks
In context ↗ - Now: Much better
my baseline energy level has improved by leaps and bounds. PEM is still an issue
In context ↗
Read from 13 of their posts and comments; links to the 9 this page draws on
Summary
Tide 17452 has ME/CFS and has had chronic pain for about 21 years, with an almost year-long remission that ended after an anaphylactic allergic reaction. They take daily gabapentin for pain; Mestinon, started around late 2021, gave a partial improvement at 60 mg three times daily, with fatigue and brain fog at higher doses. On low-dose naltrexone as well, their baseline energy improved by leaps and bounds, though PEM remains after horseback riding.
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What they tried
What they credit
Also tried
Their words about each treatment
- dTMS · Helped a lot
Not for ME/CFS, but dTMS knocked my depression into complete (and I mean complete, 100%, zero-symptoms) remission for 4 years now.
In context ↗ - gabapentin · Not said
I take gabapentin daily
In context ↗ - acetaminophen · Not said
acetaminophen or ibuprofen when necessary
In context ↗ - Midol · Helped
Midol is a lifesaver.
In context ↗ - stretching · No change
no amount of stretching seems to alleviate the discomfort
In context ↗ - gentle massage · Helped
I find gentle massage helps, too.
In context ↗ - diet, cutting out sweets · Helped
I did manage to lose most of it through diet alone, with a focus on cutting out sweets.
In context ↗ - Mestinon · Helped
I take Mestinon, 60mg at mealtimes. I’ve definitely noticed an improvement in the 8 months I’ve been on it, but not perfect.
In context ↗ - LiquidIV / Gatorade oral hydration and compression garments · Helped
Sometimes I’ll double up and dump a LiquidIV pack into a bottle of Gatorade or Powerade, and that does help.
In context ↗ - low-dose Naltrexone · Helped a lot
Currently on Mestinon (x2 years) and low-dose Naltrexone (x 1year), and happy to report that my baseline energy level has improved by leaps and bounds.
In context ↗
Approaches: POTS medication
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 |
|---|---|---|---|
| onset | ME/CFS with chronic pain began; ill for over two decadesI’ve been in pain for 21 years, much more than half my life now.In context ↗ | Moderate | |
| 2017 | went into an amazing remission that lasted almost an entire yearI went into an amazing remission about 4 years ago that lasted almost an entire year. It was fabulous.In context ↗ | Near normal | |
| 2018 | anaphylaxis after an allergic reaction; been a mess sinceI stayed that way until an allergic reaction triggered anaphylaxis, required multiple injections of epinephrine, and I’ve been a mess since.In context ↗ | Moderate | |
| 2022-08-16 | noticed an improvement after 8 months on Mestinon, but not perfectI’ve definitely noticed an improvement in the 8 months I’ve been on it, but not perfect.In context ↗ | Moderate | Mestinon / pyridostigmine |
| 2023-12-21 | baseline energy improved by leaps and bounds on Mestinon and low-dose naltrexone; PEM still present but lasts hours not weeksmy baseline energy level has improved by leaps and bounds. PEM is still an issue, but I can participate in some much higher-intensity exercises a few times a week (horseback riding)In context ↗ | Mild | Low-dose naltrexone |
Adverse events
- Mestinon / pyridostigmine“when we tried to increase the dose I had some of the rarer side effects (increased fatigue, worsening brain fog, slurred speech)” In context ↗ Side effects
- Mestinon / pyridostigmine“My only main (and occasional) side effect is muscle spasms in my hands and feet” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I’ve been in pain for 21 years, much more than half my life now.
In context ↗ - Pain & fibromyalgia
my hips have gotten really stiff/sore, and no amount of stretching seems to alleviate the discomfort
In context ↗ - Post-exertional malaise
PEM is still an issue
In context ↗ - Brain fog
increased fatigue, worsening brain fog, slurred speech
In context ↗ - Anxiety & low mood
I still get mild anxiety
In context ↗ - Mast cell (MCAS) & allergies
an allergic reaction triggered anaphylaxis, required multiple injections of epinephrine
In context ↗ - POTS & dysautonomia
my doc is *very* familiar with ME and dysautonomia
In context ↗
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