Moderate ME/CFS for four years, now much better after quitting nicotine
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 4 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
Ive had MECFS for four years, and have been moderate for most of the time.
In context ↗ - At worst: Moderate
Ive had MECFS for four years, and have been moderate for most of the time.
In context ↗ - Now: Much better
Just recently, its been alot more mild.
In context ↗
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
The user had ME/CFS for four years, moderate most of that time, with chronic nerve pain in the neck and face, migraines and rolling PEM after each job. Gabapentin with light physical therapy eased the nerve pain, and quitting nicotine after nine years of vaping substantially improved symptoms. By May 2026 the illness had become more mild, though by February 2026 jaw pain and facial swelling had worsened.
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What they tried
What they credit
Also tried
Their words about each treatment
- zyprexa (olanzapine) · Not said
even on the lowest dose of zyprexa i slept 16+ hours ... They will worsen fatigue but have helped me in the past for helping my pain
- quitting nicotine (vaping) · Helped
quitting nicotine substantially improved my symptoms but that first month of withdrawals was pretty hard
In context ↗ - on!s nicotine pouches · Not said
i used on!s nicotine pouches to quit. they are quite nasty but help you relate nicotine to a bad experience while also curbing your cravings
In context ↗ - gabapentin · Helped
Once I found what worked for my nerve pain in my neck and face (gabapentin and SUPER LIGHT physical therapy,) the pain has been alot better. ... I attribute this mostly to the gabapentin
In context ↗ - physical therapy · Helped
SUPER LIGHT physical therapy ... I find these helpful for me along with physical therapy, if you can make it out of the house
- Advil · No change
I’ve tried Advil, cold presses, hot presses, night guards and muscle relaxers- but nothing helps
In context ↗ - effexor · Helped
Right now I am taking gabapentin, effexor, ativan, sumatriptan, and supplements for mitochondrial function (NAC and CoQ10. ... I find these helpful for me
In context ↗ - NAC · Helped
supplements for mitochondrial function (NAC and CoQ10. ... I find these helpful for me
In context ↗ - antihistamines · Helped
like others have said antihistamines and famotidine have been really helpful
In context ↗ - ajovy · Helped
Treating my migraines have been the most helpful for me personally. Im on ajovy now.
In context ↗
Approaches: H1 antihistamines · H2 blockers · SNRIs · Benzodiazepines · Biologics & antibodies · Other drugs and medicines · Physiotherapy and rehab · Supplements
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 |
|---|---|---|
| 2022 | ME/CFS beganIve had MECFS for four years, and have been moderate for most of the time.In context ↗ | Moderate |
| 2025-11-17 | quit vaping after 9 years; symptoms improvedi am two months sober (been vaping for 9 years!!) and quitting nicotine substantially improved my symptomsIn context ↗ | Moderate |
| 2026-02-04 | nerve pain in neck and face much betterOnce I found what worked for my nerve pain in my neck and face (gabapentin and SUPER LIGHT physical therapy,) the pain has been alot better.In context ↗ | Moderate |
| 2026-02-07 | jaw pain worsened, face swollennow the right side of my face is swollen, my jaw clicks, and it constantly hurts.In context ↗ | Moderate |
| 2026-05-06 | illness became a lot more mildJust recently, its been alot more mild.In context ↗ | Mild |
Adverse events
- Olanzapine (Zyprexa)“even on the lowest dose of zyprexa i slept 16+ hours ):” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
every job ive had so far has sent me into rolling PEM episodes that have lasted atleast 6 months.
In context ↗ - Neuropathy & tingling
I struggle with a-lot of chronic nerve pain in my neck and face
In context ↗ - Pain & fibromyalgia
Ive always had jaw pain, but now the right side of my face is swollen, my jaw clicks, and it constantly hurts.
In context ↗ - Headaches & migraine
Treating my migraines have been the most helpful for me personally.
In context ↗ - Sleep problems
Im on gabapentin but it doesnt help me sleep.
In context ↗
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