ME/CFS
Severe → much betterIll 2.5 years before improving or writing
Severe ME/CFS, now milder end of moderate after pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2.5 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I was given a diagnosis of ME in May after being really ill l for 2 and a half years.
In context ↗ - At worst: Severe
I was severe-very severe for the first 2.5 years.
In context ↗ - Now: Much better
It's been another 2 years, and at this point, I'm on the milder end of moderate.
In context ↗ - Began after: stress or burnout
I had a very traumatic and shocking experience the week before. So, I attribute the onset of my symptoms to that specific experience.
Read from 69 of their posts and comments; links to the 33 this page draws on
Summary
Creek 98736 fell ill overnight in January 2021 and was severe to very severe for about two and a half years, sleeping 21 hours a day and unable to write or speak at times. Around her May 2023 ME diagnosis she began pacing and stopped antidepressants that had made her worse; thyroid treatment and CPAP came earlier, and vitamin D and estrogen later. She improved slowly to the milder end of moderate by 2026, still unable to work and mostly resting.
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What they tried
What they credit
Also tried
naproxen· Helpedsodium phosphate· Helpedshower chair and home accommodations· Helpediron supplement with B and C vitamins· No changeCovid shots· No changeWellbutrin (bupropion)· WorseAdderall / ADHD meds· Worsemuscle relaxants· WorseProzac· Much worsenaturopath· Not saiddiet optimization· Not saidmold exposure avoidance· Not saidVisible app· Not saidranitidine· Not saidweekly ice skating· Not said
Their words about each treatment
- amitriptyline (Elavil) · Helped a lot
in September, my Dr bumped it up to 75mg and I felt a HUGE difference
In context ↗ - Prozac · Much worse
I lost 10 months to Prozac. Caused severe CNS depression.
In context ↗ - iron supplement with B and C vitamins · No change
I thought I was anemic, so I started a supplement. Didn't do much.
In context ↗ - Wellbutrin (bupropion) · Worse
Bupropion really messed me up. It was sedating for me.
In context ↗ - duloxetine · Helped
I probably started duloxetine a year ago ... I know how it feels to feel happy
In context ↗ - Synthroid · Helped
I was prescribed Synthroid and noticed some improvement.
In context ↗ - CPAP · Helped
CPAP therapy helped.
In context ↗ - pacing · Helped a lot
As soon as I learned about pacing I was able to increase my energy envelope.
In context ↗ - naturopath · Not said
started seeing a naturopath and have been trying to optimize rest / activity and my diet
In context ↗ - diet optimization · Not said
have been trying to optimize rest / activity and my diet
In context ↗ - mold exposure avoidance · Not said
Learned that I was being exposed to a lot of mold and stopped that from happening.
In context ↗ - Visible app · Not said
I use it twice a day. I do the HRV check in the morning and I manually enter my symptoms from the day before I go to bed.
In context ↗ - Adderall / ADHD meds · Worse
They didn't give me energy. They just made it hard to sleep during the day, which negatively affected my baseline.
In context ↗ - naproxen · Helped
I have a prescription for naproxen, another NSAID, I missed it for a few days and I felt incredibly unwell. It's one of my most helpful meds
In context ↗ - ranitidine · Not said
I take it with ranitidine and I haven't had any GI issues yet.
In context ↗ - sodium phosphate · Helped
I took a single dose of sodium phosphate over 2 days, and my next batch of labs were normal.
In context ↗ - muscle relaxants · Worse
I also became very drowsy from muscle relaxants
In context ↗ - Covid shots · No change
I actually wondered how much my Covid shots affected me. I don't think they helped with the ME
In context ↗ - shower chair and home accommodations · Helped
she got me a shower chair. It's amazing how much easier that is
In context ↗ - vitamin D supplement · Helped
I think the Vitamin D supplementation gave me a lot more energy.
In context ↗ - estrogen · Helped
started estrogen and some of the horrible symptoms I'd been living with for years improved
In context ↗ - weekly ice skating · Not said
I skated about 10 minutes out of the hour every week, and it was really hard, but I was there.
In context ↗
Approaches: SNRIs · Pacing · Sex hormones · Supplements · Thyroid hormones · Tricyclic antidepressants
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| January 2021 | Sudden overnight onset after New Year's dinnerI hosted a new year's turkey dinner on January 1st and on January 2nd I wasn't okay anymoreIn context ↗ | |
| 2021-2022 | Bedbound, sleeping around 21 hours a day, too tired to chewThere were a couple of very challenging years when I was asleep or in bed for 20 hours a day.In context ↗ | |
| May 2023 | Diagnosed with ME at last and began pacingWhen I finally got my diagnosis, I accepted that it was ME and started pacing myself. I began to feel a little better then.In context ↗ | Pacing and the energy envelope |
| August 2023 | Family member came to help simplify her homeLast month a family member came for a couple weeks to help simplify my home. It's much easier to manage now and I feel significantly better now.In context ↗ | |
| September 2023 | Deteriorated steadily once the school year startedThen my condition deteriorated pretty steadily when school started and for the entire school year.In context ↗ | |
| 2026-07 | Slow improvement to the milder end of moderateIt's been another 2 years, and at this point, I'm on the milder end of moderate.In context ↗ |
Adverse events
- Fluoxetine (Prozac)“I was asleep 21 hours a day and developed sleep apnea and a huge increase in orthostatic issues while on Prozac.” In context ↗ Side effects
- Fluoxetine (Prozac)“Prozac contributed to me being severe.” In context ↗ Made symptoms worse
- Bupropion (Wellbutrin)“Bupropion really messed me up. It was sedating for me.” In context ↗ Side effects
- Bupropion (Wellbutrin)“Wellbutrin also increased my fatigue and caused significant issues with hopelessness and SI.” In context ↗ Suicidal thoughts or attempt
- Amitriptyline (Elavil), Fluoxetine (Prozac), Bupropion (Wellbutrin), Duloxetine (Cymbalta)“there were a lot of depression treatments that were awful and made everything worse” In context ↗ Made symptoms worse
- Duloxetine (Cymbalta)“I'm pretty sure it's made me dissociate, almost as long as I've taken it” In context ↗ Mood or psychiatric effects
- “I also became very drowsy from muscle relaxants” In context ↗ Side effects
- Amphetamine salts (Adderall)“They just made it hard to sleep during the day, which negatively affected my baseline.” In context ↗ Insomnia from treatment
- Estrogen (estradiol)“I had to stop because I had a 27 day period and then started another period 7 days later” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLoss of smell or tasteMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
anytime I overdo it I end up in PEM and it sounds like the same for you?
In context ↗ - Brain fog
the brain fog was thick enough to cut with a knife
In context ↗ - POTS & dysautonomia
I still get it but I usually don't go far from my bed on those days
In context ↗ - Sleep problems
I have a lot of central apneas while sleeping, even with CPAP therapy
In context ↗ - Pain & fibromyalgia
I also have fibromyalgia and I find that when my ME is better, I notice the FM a lot more. So I've been in pain.
In context ↗ - Headaches & migraine
The migraines were absolutely hell. They'd come just before and stay until almost the end, about 5 days.
In context ↗ - Gut problems
I get fever, sore throat, dizziness, nausea, and fatigue but not like I was for the past 2 and a half years.
In context ↗ - Breathlessness
I can't do anything without dizziness and shortness of breath
In context ↗ - Heart symptoms & palpitations
an increased heart rate on exertion, (still just going to the bathroom)
In context ↗ - Muscle weakness
"well" still has muscle weakness and pain
In context ↗ - Neuropathy & tingling
I haven't had any nerve pain or numbness / tingling since then after years of suffering
In context ↗ - Anxiety & low mood
I've had depression all my life.
In context ↗ - Flu-like symptoms
I get fever, sore throat, dizziness, nausea, and fatigue
In context ↗ - Loss of smell or taste
pain and related neurological symptoms like inability to taste, visual disturbances, auditory issues
In context ↗
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