ME/CFS
Severe → much betterIll 20 years before improving or writingNeeds ongoing treatment
Homebound and in bed 20 hours a day with ME/CFS, now mild, credits pacing and acupuncture
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 20 years
- Last post
- Sep 2025
In their words
- Condition: ME/CFS
I've had CFS since 2006
In context ↗ - At worst: Severe
I started out as moderate/severe and was homebound, bedbound 20 hours a day, for the first two years.
In context ↗ - Now: Much better
I was severe for 2 years then paced myself back to moderate and now I'm mild/intermittent.
In context ↗ - Began after: nothing they could name
diagnosed in college at age 20 after a few years of symptoms that got gradually worse
Read from 43 of their posts and comments; links to the 29 this page draws on
Summary
Ocean 40702 was diagnosed in 2006 at age 20 and was severe for two years, homebound and in bed 20 hours a day. She paced herself back to moderate, has been mild since 2016, and has worked full-time. She credits pacing as the gold standard and acupuncture as another help; medications and supplements helped sleep, pain and fatigue. During pregnancy she felt better than before she fell ill, especially in the second trimester; she remains mild and intermittent.
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What they tried
What they credit
Also tried
vitamin D· Helped a lotN-acetyl cysteine· Helped a lothot baths / hot Epsom salt baths· Helpedfish oil· Helpedturmeric· Helpedcyclobenzaprine· Helpedibuprofen· Helpedchiropractic· Helpedelectrolyte powder· HelpedTENS unit· Helpedcervical traction device· Helpedmassages with scraping· Helpedgabapentin· Helpedmodafinil (Provigil)· Helpedeating meat (omnivore diet)· Helped · wore offOTC GABA supplements· Helpednorethindrone (progestin-only mini-pill)· Helped · wore offTCAs· No changemelatonin· Worsevenlafaxine (Effexor)· WorseSSRIs· Worsecaffeine· Worsecombined pills (estrogen) and drospirenone (Slynd)· Worsecombined pills (estrogen) and drospirenone (Slynd)· Worsecopper and hormonal IUDs· WorseAdderall· Much worseBenadryl· Not saidCOVID vaccination as treatment· Not saidIUD (hormonal or copper)· Not said
Their words about each treatment
- hot baths / hot Epsom salt baths · Helped
Hot baths are the only sure-fire way for me to warm up.
In context ↗ - 5-HTP · Helped
5-HTP and SAM-e help me a lot if I take them religiously
In context ↗ - fish oil · Helped
(along with fish oil, turmeric, and multi-strain probiotics)
In context ↗ - turmeric · Helped
I think turmeric helps me, as well as chiropractic and acupuncture, and hot Epsom salt baths.
In context ↗ - multi-strain probiotics · Helped
The supplements that seem to make a difference for me are NAC, CoQ10, acetyl-l-carnitine, colostrum, and probiotics.
In context ↗ - melatonin · Worse
melatonin gives me a jittery feeling, vivid dreams, and I wake frequently in the night
In context ↗ - cyclobenzaprine · Helped
For deeper, better sleep the only thing I have found to work without grogginess or weird side effects is cyclobenzaprine.
In context ↗ - Benadryl · Not said
just makes me sleep some of them away on Benadryl
In context ↗ - ibuprofen · Helped
taking ibuprofen during these times cuts down on my symptoms
In context ↗ - chiropractic · Helped
as well as chiropractic and acupuncture
In context ↗ - acupuncture · Helped
The only other thing that has ever helped is acupuncture
In context ↗ - pacing · Helped a lot
Pacing is really the gold standard.
In context ↗ - electrolyte powder · Helped
Electrolyte powder is our friend :)
In context ↗ - venlafaxine (Effexor) · Worse
I had such a negative experience with venlafaxine
In context ↗ - SSRIs · Worse
I don't tolerate SSRIs, which I learned by trialing about three of them
In context ↗ - TENS unit · Helped
A TENS unit has been an important part of managing my pain/spasms
In context ↗ - cervical traction device · Helped
along with a cervical traction device (only with clearance from a provider)
In context ↗ - massages with scraping · Helped
regular massages with scraping
In context ↗ - gabapentin · Helped
I have experienced improvement in nerve-related pain and more refreshing sleep on a low bedtime dose of gabapentin
In context ↗ - bupropion (Wellbutrin) · Helped
I also feel better on bupropion 300 mg
In context ↗ - modafinil (Provigil) · Helped
I also use modafinil 100 mg on days I am going to have a lot of cognitive demands
In context ↗ - Adderall · Much worse
Adderall helped me at first but eventually made everything much worse
In context ↗ - caffeine · Worse
I can't even handle too much caffeine.
In context ↗ - eating meat (omnivore diet) · Helped
I ate a slice of ham and within an hour I had color to my face, felt a little bit of energy, and generally felt well.
In context ↗ - OTC GABA supplements · Helped
I've noticed some improvement from taking OTC GABA supplements as a stop-gap
In context ↗ - vitamin D · Helped a lot
After supplementation and getting above a level of 50 my pain was gone.
In context ↗ - N-acetyl cysteine · Helped a lot
N-acetyl cysteine has helped tremendously with that and anxiety without causing any side effects
In context ↗ - norethindrone (progestin-only mini-pill) · Helped
never caused me any problems and actually helped me feel less wiped out by my cycle and bleeding
In context ↗ - TCAs · No change
TCAs also don't help me
In context ↗ - combined pills (estrogen) and drospirenone (Slynd) · Worse
Combined pills (containing estrogen) and also the progestin-only mini-pill drospirenone (Slynd) really messed me up.
In context ↗ - copper and hormonal IUDs · Worse
Both IUDs caused pelvic swelling, constant discharge, fatigue, and pain.
In context ↗ - COVID vaccination as treatment · Not said
My 2nd dose gave me 2 days of full-body aches, debilitating fatigue, chills, low-grade fever, and that general prickly skin pain that comes with a full-artillery immune response.
In context ↗
Approaches: Alternative therapies · Amino acids and carnitine · Other antidepressants · Pacing · 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 | After |
|---|---|---|---|
| 2006 | ME/CFS began in college with lingering viral illnessesSecond semester I started getting viral illnesses that lingered, and never seemed rested.In context ↗ | Severe | |
| 2006-2008 | two years severe, homebound and in bed 20 hours a dayI started out as moderate/severe and was homebound, bedbound 20 hours a day, for the first two years.In context ↗ | Severe | |
| 2008 | paced back from severe to moderateI was severe for 2 years then paced myself back to moderate and now I'm mild/intermittent.In context ↗ | Moderate | Pacing and the energy envelope |
| 2016 | became mild and able to work full-timeI then became mild and over time learned my triggers and how to pace and how to climb out of a crash ASAP. I was able to work full-timeIn context ↗ | Mild | Pacing and the energy envelope |
| 2020-2022 | more frequent relapses with new or worse symptomsnow age 37 mild with more frequent relapsing with new/worse symptoms in the last couple yearsIn context ↗ | Mild | |
| 2023 | pregnancy; felt better than before she fell illThe second trimester was like a dream. I felt better than before I got sick.In context ↗ | Recovered | |
| 2025 | mild and intermittent, pacing to avoid crashes | Mild | Pacing and the energy envelope |
Adverse events
- Melatonin“melatonin gives me a jittery feeling, vivid dreams, and I wake frequently in the night.” In context ↗ Insomnia from treatment
- COVID vaccination as treatment“My 2nd dose gave me 2 days of full-body aches, debilitating fatigue, chills, low-grade fever, and that general prickly skin pain that comes with a full-artillery immune response.” In context ↗ Side effects
- COVID vaccination as treatment“I absolutely could not sleep a wink, and found myself totally obsessed with useless tasks.” In context ↗ Insomnia from treatment
- Progestin-only birth control (mini pill, implant or shot), Combined birth control (pill, patch or ring)“come with fun new side effects like 0 libido, acne” In context ↗ Side effects
- Bupropion (Wellbutrin)“I flew too close to the sun and tried going to 450 but it caused intolerable headaches” In context ↗ Side effects
- Amphetamine salts (Adderall)“high doses of Adderall made my CFS so much worse. It helped at first, then caused one of the worst crashes of my life.” In context ↗ Made symptoms worse
- Amphetamine salts (Adderall)“I was always tachycardic and ended up with a BMI of 17.” In context ↗ Heart rhythm problems
- Venlafaxine (Effexor), Antidepressants (unspecified), Bupropion (Wellbutrin)“it makes my heart race and makes me dizzy and nauseous” In context ↗ Heart rhythm problems
- Venlafaxine (Effexor), Antidepressants (unspecified), Bupropion (Wellbutrin)“All SSRIs make me feel more tired, plus achy.” In context ↗ Side effects
- Venlafaxine (Effexor), Antidepressants (unspecified), Bupropion (Wellbutrin)“an SNRI made me very symptomatic after only one dose.” In context ↗ Side effects
- Progestin-only birth control (mini pill, implant or shot)“Combined pills (containing estrogen) and also the progestin-only mini-pill drospirenone (Slynd) really messed me up.” In context ↗ Side effects
- IUD (hormonal or copper)“Both IUDs caused pelvic swelling, constant discharge, fatigue, and pain.” In context ↗ Side effects
- “with the copper one, I lost a staggering amount of blood each cycle, and bleeding lasted about 2 weeks each time. It made my fatigue much worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodFlu-like symptomsGut problemsHeadaches & migraineNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
learned my triggers and how to pace and how to climb out of a crash ASAP
In context ↗ - Sleep problems
My light, unrefreshing sleep has been improved immensely with cyclobenzaprine 10 mg
In context ↗ - Temperature regulation
Hot baths are the only sure-fire way for me to warm up.
In context ↗ - POTS & dysautonomia
it makes my heart race and makes me dizzy and nauseous, which are already symptoms I'm trying to treat
In context ↗ - Pain & fibromyalgia
After supplementation and getting above a level of 50 my pain was gone.
In context ↗ - Headaches & migraine
new headaches that are now starting to throb on exertion
In context ↗ - Flu-like symptoms
swollen lymph nodes, low grade fevers, and sleeping 20+ hours with no relief
In context ↗ - Vision problems
my vision went black while I was in the shower, and when my vision returned the white shampoo in my hand had turned blue
In context ↗ - Neuropathy & tingling
I have experienced improvement in nerve-related pain and more refreshing sleep on a low bedtime dose of gabapentin
In context ↗ - Anxiety & low mood
A lot of my despair and shame about getting sick
In context ↗ - Gut problems
makes me dizzy and nauseous, which are already symptoms I'm trying to treat
In context ↗
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