ME/CFS
Severe → somewhat betterIll 22 years before improving or writingNeeds ongoing treatment
ME/CFS: mostly in bed, now somewhat better but still housebound with LDN and supplements
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 22 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I’ve had ME a lot longer than Covid has been around.
In context ↗ - At worst: Severe
when I slid down to my current level, I was mostly in bed for six months
In context ↗ - Now: Somewhat better
14 months later, I am significantly better than I was. ... my energy is still severely limited.
- Began after: injury or surgery
For me, it was going off t4 medication as part of my thyroid cancer treatment.
Read from 48 of their posts and comments; links to the 26 this page draws on
Summary
Her ME/CFS began in 2004, after she came off thyroid hormone for radioactive iodine treatment for thyroid cancer. A January 2025 Covid infection caused a massive flare; she stopped working and spent about six months mostly in bed. Low-dose naltrexone eased brain fog, and from September 2026 luteolin, rutin and fish oil gave her more energy, though she remains housebound and severely limited.
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What they tried
What they credit
Also tried
not eating gluten· Helped a lotCymbalta (generic duloxetine)· Helpedlow dose naltrexone (LDN)· Helped · wore offibuprofen· HelpedTylenol (acetaminophen)· HelpedOzempic· HelpedBaclofen· HelpedCitrucel· Helpedmethotrexate· Helpedfish oil· Helpedaqua therapy· Worsetalk therapy· Worseprednisone· Not saidsulfasalazine· Not saidradical rest· Not saidpacing· Not saidcompression socks· Not saidPepcid (famotidine)· Not saidprobiotic· Not saidmesalamine tablets· Not saidSkyrizi· Not saidB12· Not saidcholesterol drug· Not saidMounjaro· Not saidlong-acting insulin· Not saidNuun sport hydration· Not said
Their words about each treatment
- thyroid hormone (T4 / Synthroid) · Helped
being hyper-thyroid through medication (previous standard for treating thyroid cancer survivors) greatly dampened my symptoms
In context ↗ - Cymbalta (generic duloxetine) · Helped
Cymbalta helps take the edge off, but my pain is still here.
In context ↗ - prednisone · Not said
I have several Rx to help with pain (cymbalta, sulfasalazine, prednisone, low dose naltrexone)
In context ↗ - sulfasalazine · Not said
I used to take sulfasalazine. My new GI doc prefers mesalamine tablets (sulfasalazine is a much older drug).
In context ↗ - low dose naltrexone (LDN) · Helped
Low dose naltrexone helped with my brain fog.
In context ↗ - ibuprofen · Helped
Yes. All help. As does lots of ibuprofen or acetaminophen.
In context ↗ - Tylenol (acetaminophen) · Helped
4 200mg Tylenol midday
In context ↗ - radical rest · Not said
I still ended up giving up my job to try radical rest.
In context ↗ - Ozempic · Helped
Ozempic helped cut the cravings for me.
In context ↗ - Baclofen · Helped
I take some Baclofen in the PM, which helps me sleep w pain
In context ↗ - aqua therapy · Worse
Heck, even aqua therapy made it worse for me.
In context ↗ - talk therapy · Worse
Personally, I’ve found talk therapy to be too much for my system to handle, causing more PEM.
In context ↗ - pacing · Not said
I wish I understood this diagnosis earlier because by the time I tried to pace myself it was a bit too late.
In context ↗ - hormone replacement therapy (HRT) · Helped
finding a doctor willing to prescribe hormone replacement therapy (HRT) has made the most difference recently
In context ↗ - compression socks · Not said
I have a lot of inflammation and my feet get bigger by the end of the day, even though I’m usually wearing compression socks.
In context ↗ - not eating gluten · Helped a lot
Not eating gluten cleared up most of my IBS.
In context ↗ - Pepcid (famotidine) · Not said
My ME clinician gave me an Rx for Pepcid (over the counter is 10mg tablets; Rx is 20mg).
In context ↗ - probiotic · Not said
I can’t tell what the probiotic does, but since I have a crappy stomach (which is a secondary brain), I give it probiotics.
In context ↗ - Citrucel · Helped
3 tablets of Citrucel (they have a different core ingredient than every other brand that helps bulk up my bowel movements)
In context ↗ - mesalamine tablets · Not said
My new GI doc prefers mesalamine tablets (sulfasalazine is a much older drug).
In context ↗ - methotrexate · Helped
It helps with my arthritis and fatigue when I use the liquid form - weekly injection with a fine needle.
In context ↗ - Skyrizi · Not said
plus Skyrizi every six weeks on Thursday
In context ↗ - B12 · Not said
vitamins including Rx of B12
In context ↗ - cholesterol drug · Not said
a cholesterol drug
In context ↗ - Mounjaro · Not said
Tuesday Mounjaro < just added for new diabetes type 2 diagnosis + obesity
In context ↗ - Luteolin with Rutin · Helped a lot
I am shocked by how much more energy I have with this simple supplement added to my LDN, Cymbalta, Pepcid AC, and other disease specific meds. Truly a game changer
In context ↗ - fish oil · Helped
I take fish oil with a Luteolin & Rutin supplement.
In context ↗ - occupational therapy (OT) · Helped
She referred me to OT for help, which did help as much as it can.
In context ↗ - long-acting insulin · Not said
I’m on methotrexate, Sulfasalazine, Skyrizi, B12, Cymbalta, Mounjaro, and long-acting insulin.
In context ↗ - Nuun sport hydration · Not said
now I’m sorting through migraines because I’m not getting enough electrolytes, so trying a diabetes friendly option without nasty fake sugar. (Nuun sport hydration)
In context ↗
Approaches: Pacing · Sex hormones · Supplements · Thyroid hormones
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 21 years after onset: the story doesn’t say how ill they were before that. 3 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 | After |
|---|---|---|---|
| 2004 | ME began after coming off thyroid hormone for radioactive iodine treatment for thyroid cancerMy ME/CFS started when I went off thyroid hormone to swallow radiation to treat thyroid cancerIn context ↗ | Not stated | |
| years after onset | over-high thyroid medication doses dampened her symptoms for a long timebeing hyper-thyroid through medication ... greatly dampened my symptomsIn context ↗ | Not stated | |
| after graduate degree | health went swiftly downhill after graduate degree and a stressful part-time jobMy health has gone swiftly down hill once I got my graduate degree and started a stressful part-time job.In context ↗ | Not stated | |
| January 2025 | Covid infection caused a massive flare; had to stop workingCatching Covid in January, 2025 created a massive flare, required me to stop workingIn context ↗ | Severe | |
| 2025 | mostly in bed for six months after sliding downI’m mostly homebound and when I slid down to my current level, I was mostly in bed for six months.In context ↗ | Severe | |
| summer 2025 | stopped working part-time and moved; mostly in bed and houseboundI stopped working part-time this summer and we had to move to a lower cost of living area.In context ↗ | Severe | |
| September 2026 | more energy after Dr Chia's luteolin and rutin with fish oil, alongside LDN and other medsI am shocked by how much more energy I have with this simple supplement added to my LDN, Cymbalta, Pepcid AC, and other disease specific meds.In context ↗ | Moderate | Luteolin and flavonoid blends |
| October 2026 | significantly better than a year earlier but still housebound with severely limited energy14 months later, I am significantly better than I was. ... my energy is still severely limited | Moderate |
Adverse events
- Low-dose naltrexone“a massive headache and insomnia either from my RA meds or my low dose naltrexone” In context ↗ Insomnia from treatment
- “Pain meds make me more tired / loopy.” In context ↗ Side effects
- Duloxetine (Cymbalta)“For me, it increased my dry mouth” In context ↗ Side effects
- Duloxetine (Cymbalta)“I had *really* bad reactions to other mood drugs and totally resisted for a long time.” In context ↗ Side effects
- Aquatic therapy / hydrotherapy“Heck, even aqua therapy made it worse for me.” In context ↗ Made symptoms worse
- CBT and psychotherapy“I’ve found talk therapy to be too much for my system to handle, causing more PEM.” In context ↗ Made symptoms worse
- “Even though it caused a PEM flare, I’d recommend a colonoscopy.” In context ↗ Made symptoms worse
- “another biological caused my colitis to flare” In context ↗ Autoimmune or inflammatory flare
- Methotrexate“It caused stomach problems when I swallowed it and didn’t help anything.” In context ↗ Gut side effects
- Hormone replacement therapy (HRT)“it’s also caused me to bleed more. I used to have a regular period.” In context ↗ Side effects
- “a rheumatologist gave me a medicine that left me bedbound for 6 months” In context ↗ Made symptoms worse
- “But now I’m sorting through migraines because I’m not getting enough electrolytes” In context ↗ Refeeding or deficiency problems
- Tirzepatide (Mounjaro, Zepbound)“Taking Mounjaro hurts more than inserting a Dexcom.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
the minimal exertion I did yesterday to attend a graduation makes me feel like staying in bed all weekend
In context ↗ - Brain fog
I’ve mostly increased the dose when the brain fog reemerges.
In context ↗ - Pain & fibromyalgia
Still in a ton of pain and exhausted all the time.
In context ↗ - Sleep problems
a massive headache and insomnia either from my RA meds or my low dose naltrexone
In context ↗ - Headaches & migraine
now I’m sorting through migraines because I’m not getting enough electrolytes
In context ↗ - Light & noise sensitivity
the noise and movement of screens gets too much for me
In context ↗ - Gut problems
Not eating gluten cleared up most of my IBS.
In context ↗ - Anxiety & low mood
I had major bouts of depression when I was younger.
In context ↗ - POTS & dysautonomia
(plus probably POTS)
In context ↗
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