ME/CFS
Moderate → no benefitIll for 30 yearsNeeds ongoing treatment
30 years of chronic pain and ME/CFS, no ME/CFS improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 30 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
If I want to go to a friend’s birthday dinner for 2 hours, I need to spend at least one entire day before and after resting.
In context ↗ - At worst: Moderate
I go to a few concerts a year for artists I really love. For 2-3 days before the concert, I do nothing but rest, hydrate, and eat well.
In context ↗ - Now: No benefit
My illness got worse.
In context ↗
Read from 32 of their posts and comments; links to the 18 this page draws on
Summary
She had chronic pain for about 30 years, with ME/CFS, fibromyalgia, chronic migraine and severe light sensitivity, and severe depression and anxiety that finally eased on a combination of antidepressants after 20 years of trial and error. She coped with pacing, resting at least a full day before and after a two-hour outing, and 200 mg of sleep medication. She lost 17 lbs in three months on Zepbound, which cost $50 a month.
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What they tried
Also tried
Zepbound (tirzepatide)· Helped a lotcannabis (weed)· Helpedmuscle relaxer· HelpedTheraSpecs· Helpedantidepressants· Helpedmindfulness· Helpedmassage· Helpedstretching· Helpedtrigger point injections· HelpedLactaid pill· Helpedwaking-up routine· HelpedSeroquel (quetiapine)· Helpedpacing· Helpedtherapy· No changepain killers· Worsemigraine medication· WorseAllegra· WorseSavella· WorseShingles vaccine (Shingrix)· Not said
Their words about each treatment
- cannabis (weed) · Helped
I’ve tried so many strains & different delivery methods and they don’t touch my pain. It helps my anxiety though.
In context ↗ - pain killers · Worse
This usually happens as a Medication Overuse Headache after I take pain killers too many days in a row.
In context ↗ - muscle relaxer · Helped
Muscle relaxers, massage, stretching, and trigger point injections help some, but I still always have a tight, painful neck.
In context ↗ - TheraSpecs · Helped
TheraSpecs are the best sunglasses I’ve ever used. ... they’re great for bright sunlight, they also make indoor ones for fluorescent lights.
In context ↗ - antidepressants · Helped
what really is effective, for me, is medication. And it has taken 20 years and trial-and-error of at least a dozen different antidepressants for me to get the right combination
In context ↗ - mindfulness · Helped
Mindfulness helps some, but what really is effective, for me, is medication.
In context ↗ - massage · Helped
massages are really beneficial for that
In context ↗ - Lactaid pill · Helped
if I take a Lactaid pill I can eat small amounts of dairy with no problems
In context ↗ - therapy · No change
Therapy never really helped.
In context ↗ - waking-up routine · Helped
I start waking up by first wiggling my fingers and toes, then moving my feet and hands, then arms, etc. ... That seems to help me.
In context ↗ - migraine medication · Worse
I’ve gotten that symptom as a side effect from migraine medication.
In context ↗ - Allegra · Worse
Everyone says Allegra is non-drowsy but it knocks me out.
In context ↗ - Savella · Worse
The only time I sweat a lot was when I was taking Savella.
In context ↗ - Seroquel (quetiapine) · Helped
I take 200mg for sleep and it works great. It’s pretty much the only way I can get to sleep.
In context ↗ - pacing · Helped
I am better off picking and choosing my activities, based on how important they are to me and how awful I’ll feel afterward.
In context ↗ - Zepbound (tirzepatide) · Helped a lot
I’ve been on Zepbound for 3 months and have lost 17lbs. It’s a frigging wonder drug. Seriously it’s amazing.
In context ↗ - Shingles vaccine (Shingrix) · Not said
I was *slightly* more fatigued than usual and that was it.
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 30.2 years after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| onset | chronic pain began, later with severe depression and anxietyI have pretty severe depression and anxiety after having chronic pain for 30 years.In context ↗ | Not stated |
| 2020 | finally found a combination of antidepressants that worked for depression and anxietyit has taken 20 years and trial-and-error of at least a dozen different antidepressants for me to get the right combination, which I’ve been on for about 2 yearsIn context ↗ | Not stated |
| 2022-08-17 | illness got worse; husband leftMy illness got worse. My husband left.In context ↗ | Moderate |
| 2026-08-05 | still pacing; started Zepbound for weight lossIf I want to go to a friend’s birthday dinner for 2 hours, I need to spend at least one entire day before and after resting.In context ↗ | Moderate |
Adverse events
- “I get an awful burning feeling like my head is full of acid. This usually happens as a Medication Overuse Headache after I take pain killers too many days in a row.” In context ↗ Side effects
- “I’ve gotten that symptom as a side effect from migraine medication.” In context ↗ Side effects
- Fexofenadine (Allegra)“No, but Allegra does, I swear it does! Everyone says Allegra is non-drowsy but it knocks me out.” In context ↗ Side effects
- Shingles vaccine (Shingrix)“I was *slightly* more fatigued than usual and that was it.” In context ↗ Side effects
- Milnacipran (Savella)“I rarely sweat. The only time I sweat a lot was when I was taking Savella.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodHeadaches & migraineLight & noise sensitivityPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
And I always plan to have a few days after the show to crash.
In context ↗ - Pain & fibromyalgia
I also have fibromyalgia, and massages are really beneficial for that.
In context ↗ - Headaches & migraine
I have chronic migraine also and severe photophobia.
In context ↗ - Light & noise sensitivity
I’m extremely sensitive to the sun
In context ↗ - Sleep problems
It’s pretty much the only way I can get to sleep.
In context ↗ - Anxiety & low mood
I have pretty severe depression and anxiety after having chronic pain for 30 years.
In context ↗