Moderately severe ME/CFS, now somewhat better with L-arginine and weight loss
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- 10.5 years
- Last post
- Dec 2024
In their words
- Condition: ME/CFS
I've had ME for 10-11 years now.
In context ↗ - Now: Somewhat better
I'm not talking cured levels of better, but definitely some improvement!
In context ↗ - Began after: nothing they could name
My first symptom was tachycardia, then fatigue, then weight gain.
Read from 34 of their posts and comments; links to the 21 this page draws on
Summary
Falcon 53308 had ME for about 10-11 years, calling themselves moderately severe, in between bedbound and homebound. They credit L-arginine with vitamin C for noticeably more energy within a week, and say losing weight on semaglutide left them somewhat better, though they stopped it to qualify for weight loss surgery. CPAP and thyroid replacement did not change their ME, and propranolol made them worse.
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What they tried
What they credit
Also tried
Their words about each treatment
- vitamin D3 · Not said
I take 10,000 IU of vitamin D3 and it's fine.
In context ↗ - Magnesium citrate · Not said
I also take 250 mg Magnesium citrate.
In context ↗ - therapy · Helped
Anyway, therapy might help. I kinda find it liberating.
In context ↗ - pacing/energy envelope · Not said
I use it to give myself permission to pace/energy envelope.
In context ↗ - Metoprolol and propranolol · Worse
Metoprolol did nothing for my symptoms, propranolol increased my symptoms.
In context ↗ - thyroid replacement · No change
None of this had any noticable effect on my ME, though.
In context ↗ - PT · Worse
Last PT place I went to before my current folks, who are home health, put me in bed for a fucking week.
In context ↗ - hysterectomy + bisalp + endo resection · Helped
I guess I'm a tiny bit better after my hysterectomy, but that improvement would have happened without ME since my uterus was so fucked up.
In context ↗ - steroid injection in my knee · Worse
it made the pain better ... Then it was even worse than before.
In context ↗ - l-arginine · Helped
I already take vitamin c, so I just added l-arginine. It's not a cure, but it's made a noticeable difference for me.
In context ↗ - vitamin c · Not said
I already take vitamin c, so I just added l-arginine.
In context ↗ - stimulants · Helped
I've been taking stimulants for nearly a decade now. In my opinion, they basically just quiet my warning systems.
In context ↗ - CPAP · No change
I haven't noticed any difference in my debilitating exhaustion since treating my UARS/OSA, and it's been over a year.
In context ↗ - semaglutide · Helped
Semaglutide has been overall pretty great for me.
In context ↗ - protein shakes · Not said
After CPET1 until day 5 the only things I drank were liquid IV and protein shakes. I would recommend that as well.
In context ↗
Approaches: GLP-1 drugs · Supplements · Surgery & structural
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 first step with a time is 8.7 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| ~2013 | ME onsetI've had ME for 10-11 years now.In context ↗ | Not stated | |
| early days of ME | early, most severe periodI forgot how it used to be in my early days of ME.In context ↗ | Severe | |
| summer 2022 | flare upit's nice to be able to see how improved I am from my flare up this summerIn context ↗ | Severe | |
| October 2022 | hysterectomy for adenomyosis, tiny bit betterI guess I'm a tiny bit better after my hysterectomy, but that improvement would have happened without ME since my uterus was so fucked up.In context ↗ | Severe | Other surgery (adrenal, lung, venoplasty) |
| January 2023 | more energy, first day back at workWithin a week, more energy.In context ↗ | Mild | Nitric-oxide boosters (beetroot, arginine, citrulline) |
| April 2024 | 2-day CPET showed moderately severe then severe rangeBefore testing I considered myself moderately severe: in between bed bound and home bound depending on what I do.In context ↗ | Severe | |
| December 2024 | some improvement at lower weight, now off semaglutidemy wife and I have both noticed I was doing better at the lower weight and worse at the higher weight.In context ↗ | Severe | Semaglutide (Ozempic, Wegovy) |
Adverse events
- Propranolol (Inderal)“I've got POTS and recently tried propranolol. It made me worse.” In context ↗ Made symptoms worse
- Physical therapy / physiotherapy“Last PT place I went to before my current folks, who are home health, put me in bed for a fucking week.” In context ↗ Made symptoms worse
- Other surgery (adrenal, lung, venoplasty)“One was vein thrombosis” In context ↗ Other
- Other surgery (adrenal, lung, venoplasty)“one of my incisions busted open within a few hours of coming home.” In context ↗ Other
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I have to be super careful and overly mindful or I can very easily overdo it and pay the price.
In context ↗ - Brain fog
tired af, pain, palpitations, overheating, short of breath, brain fog
In context ↗ - POTS & dysautonomia
I've got POTS and recently tried propranolol.
In context ↗ - Sleep problems
I nixed unrefreshing sleep because the answer is always yes.
In context ↗ - Pain & fibromyalgia
tired af, pain, palpitations, overheating
In context ↗ - Gut problems
I actually spent several years constantly nauseous at the beginning of my ME.
In context ↗ - Light & noise sensitivity
lightheadedness, dizzy, nausea, sensory overload
In context ↗ - Breathlessness
overheating, short of breath, brain fog
In context ↗ - Muscle weakness
I replaced GI issues with myopathy because my GI issues are pretty static, but my myopathy is not.
In context ↗ - Temperature regulation
tired af, pain, palpitations, overheating, short of breath
In context ↗
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