ME/CFS
Moderate → somewhat betterIll 5 years before improving or writing
Barely enough energy to climb stairs over a year with ME/CFS, somewhat better after Botox
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 5 years
- Last post
- Feb 2023
In their words
- Condition: ME/CFS
Finally they diagnosed me with CFS
In context ↗ - At worst: Moderate
I've been in horrible burning, itching scalding pain with barely enough energy to climb the stairs for over a year
In context ↗ - Now: Somewhat better
They've helped with a lot of it but the fatigue is still an issue
In context ↗
Read from 47 of their posts and comments; links to the 23 this page draws on
Summary
Crane 68102 had muscle pain, sleepiness, fatigue and headaches for years before a CFS diagnosis around 2014. Reflux surgery in 2017 stopped his reflux and sinus trouble but left a severe unrelenting headache and did not cure his fatigue; he later had repeated sinus infections and for over a year barely enough energy to climb stairs. Diagnosed with Behcet's disease, he said his sinus infections were actually autoimmune attacks; Botox injections only kind of worked.
Ask Miruvor AI
What they tried
What they credit
Also tried
probiotics· Helped a lotWelbutrin· Helpedfood elimination diet· Helpedprotopump inhibitors· Helpedeating better (more greens, yogurt)· Helpedbeta blockers· HelpedNSAIDs (Aleve)· HelpedBenadryl· Helpednissen fundoplication· Helpedballoon dilation during endoscopy· Helpedadenoidectomy· Helpedballoon sinoplasty· Helpedone of the basic meds for the disease· HelpedGeneric Neutrogena T/Gel (coal tar shampoo)· Helpedantibiotics· No changeBotox· No changecaffeine· WorseOxycontin· Worse
Their words about each treatment
- psychiatric stimulants · Helped
The biggest help I've had has been with simple psychiatric stimulants.
In context ↗ - Welbutrin · Helped
She put me on welbutrin, and that's helped a bit with the fatigue.
In context ↗ - therapy · Helped a lot
I've been going since the 3rd grade and it works wonders.
In context ↗ - mindfulness, meditation, Buddhism · Helped a lot
Of all the things that I've tried, mindfulness, meditation, Buddhism (the philosophy, not the religion) have helped the most.
In context ↗ - food elimination diet · Helped
I've found that avoiding Garlic and Onions has helped immensely with that.
In context ↗ - probiotics · Helped a lot
Those worked... in about 2 days by IBS suddenly changed in a major way.
In context ↗ - protopump inhibitors · Helped
I'm on the max dosage of protopump inhibitors and I'm not having frequent heartburn
In context ↗ - eating better (more greens, yogurt) · Helped
to try and eat better... More greens, yogurt, etc... That's helped me a lot.
In context ↗ - caffeine · Worse
I would drink a lot of caffeine trying to alleviate the exhaustion and would just make myself sicker.
In context ↗ - beta blockers · Helped
I've been on beta blockers. They're great!
In context ↗ - NSAIDs (Aleve) · Helped
And yes, NSAIDS help my symptoms.
In context ↗ - Benadryl · Helped
I took a bunch of Alieve, and Benadryl before bed...
In context ↗ - nissen fundoplication · Helped
I had this in February, and it worked! My reflux stopped, and my sinus problems along with it.
In context ↗ - balloon dilation during endoscopy · Helped
They were able to correct the ring problem with a simple balloon dilation during the endoscopy.
In context ↗ - adenoidectomy · Helped
The pain went from 10 to 1 instantly.
In context ↗ - balloon sinoplasty · Helped
After the surgery the impacted pressure was relieved, but not the infection.
In context ↗ - antibiotics · No change
I've been on antibiotics continuously since last April.
In context ↗ - Botox · No change
the Botox did nothing.
In context ↗ - Oxycontin · Worse
The withdrawl from being on Oxycontin for even a few months can be soul crushing (I went through it myself)
In context ↗ - one of the basic meds for the disease · Helped
Within **hours** of taking the first pill a few of the symptoms I'd had for decades cleared up
In context ↗ - Generic Neutrogena T/Gel (coal tar shampoo) · Helped
Generic Neutrogena T/Gel (any shampoo made from coal tar) is by far the best.
In context ↗
Approaches: CBT & mindset · Mind-body practices · Stimulants
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 |
|---|---|---|
| onset | onset of muscle pain, sleepiness, fatigue and headachesI've had muscle pain, sleepiness, fatigue and headaches for years.In context ↗ | Mild |
| February 2017 | severe headache after reflux surgerywhen I woke up from the general anesthesia, I was in excruciating painIn context ↗ | Moderate |
| 2019 | repeated sinus infections and surgeries, barely able to climb stairsI've been in horrible burning, itching scalding pain with barely enough energy to climb the stairs for over a year.In context ↗ | Moderate |
| September 2019 | some long-standing symptoms cleared on treatment for Behcet's diseaseWithin **hours** of taking the first pill a few of the symptoms I'd had for decades cleared upIn context ↗ | Mild |
| February 2023 | fatigue remained, Botox did nothing, diagnosed with autismThey've helped with a lot of it but the fatigue is still an issue.In context ↗ | Mild |
Adverse events
- Stimulants (unspecified)“It took me 2 years to get off them. I had to take a week off work, go cold turkey, and at points was hallucinating.” In context ↗ Withdrawal problems
- Bupropion (Wellbutrin)“it can increased anxiety in those that suffer from anxiety disorders (which I do) but the effect is moderate” In context ↗ Mood or psychiatric effects
- Caffeine and coffee“I would drink a lot of caffeine trying to alleviate the exhaustion and would just make myself sicker.” In context ↗ Made symptoms worse
- Caffeine and coffee“I became dependent on it, and I'd eventually drink so much of it trying to make myself feel better that I'd just get ill from it.” In context ↗ Made symptoms worse
- Other surgery (adrenal, lung, venoplasty)“when I woke up from the general anesthesia, I was in excruciating pain. I had a splitting headache and my left shoulder hurt horribly.” In context ↗ Made symptoms worse
- Oxycodone (OxyContin, Endone)“they updated my narcotics until I started to break out into a rash” In context ↗ Allergic reaction / anaphylaxis
- Sinus, jaw and tonsil surgery“They removed the adenoids which lead to a massive infection and complete opacification of **all** of left sinuses. That landed me in the emergency room” In context ↗ Made symptoms worse
- Oxycodone (OxyContin, Endone)“the withdrawl from being on Oxycontin for even a few months can be soul crushing (I went through it myself)” In context ↗ Withdrawal problems
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Pain & fibromyalgia
I've had muscle pain, sleepiness, fatigue and headaches for years.
In context ↗ - Headaches & migraine
I've had a unexplained 7/10 headache for almost 5 years
In context ↗ - Gut problems
I've pretty bad IBS.
In context ↗ - Brain fog
I couldn't think strait, I couldn't remember anything.
In context ↗ - Anxiety & low mood
it can increased anxiety in those that suffer from anxiety disorders (which I do)
In context ↗ - Post-exertional malaise
if I exert myself physically or emotionally it'll flair just like someone with Lupus or another autoimmune disease
In context ↗ - Vision problems
I've developed double vision, dizziness
In context ↗ - Muscle weakness
it also actually weakens the muscles so it takes more effort to use them
In context ↗ - Sleep problems
they think may be disturbing my sleep
In context ↗
Ask Miruvor AI
Similar stories
-
ME/CFS with pain and fatigue, could only walk, somewhat better on low-dose stimulant
A Reddit user, a mental health counselor with chronic pain and fatigue, said a low-dose stimulant raised their quality of life 100-fold, letting them feel normal for the first time in years, though they still crashed to baseline each early evening. They…
-
Housebound with long COVID, now much better and back at work after rest and acupuncture
An Australian academic in their forties got long COVID in May 2024 after a third infection: brain fog first, then crippling fatigue that left them housebound and crashing daily for months. Rest, time and treatments including acupuncture greatly improved…
-
Bedridden or housebound with long COVID, now much better with pacing and LDN
Ill from February 2020, they were often bedridden or housebound with severe pain, headaches, diarrhoea and suicidal depression. They credit diet changes, rest and pacing, LDN and Celebrex for slow gains, and Auvelity for their depression, though flare-ups…
-
Long COVID crashes and wrecked gut, now near normal on antihistamines and diet
Badger 97535 developed long COVID after a covid infection in early 2021. He worked through months of 2-4 hours' sleep early on, a wrecked gut, mast cell reactions and flu-like crashes after exercise. Antihistamines, keto and very-low-calorie diets, PEA,…