ME/CFS
Mild → no benefit
Years of ME/CFS exhaustion, unrefreshing naps, no improvement after CPAP and testosterone
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- years
- Last post
- Apr 2023
In their words
- Condition: ME/CFS
I am looking to find out if there have been any treatments that have helped you manage cfs.
In context ↗ - At worst: Mild
Ive struggled for years to make it through the day both from physical and mental exhaustion. Most days I feel like I’m on autopilot and about to crash.
In context ↗ - Now: No benefit
I’ve tried a few day time sleeping medicines and have been using a cpap to help with sleep quality but I’m still at my wits end
In context ↗
Summary
In 2023 the user wrote that they had struggled for years with physical and mental exhaustion, needing naps that did not help, and were still looking for treatments after daytime sleep medicines and a CPAP. They also reported five-plus years on testosterone: it felt great for the first year, then came high oestradiol, sore joints and a wired, unrested feeling, calming later but without their former energy.
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What they tried
Also tried
trt / testosterone· Helped · wore offhormones to suppress e2· Worseday time sleeping medicines· Not saidcpap· Not said
Their words about each treatment
- day time sleeping medicines · Not said
I’ve tried a few day time sleeping medicines
In context ↗ - cpap · Not said
have been using a cpap to help with sleep quality
In context ↗ - trt / testosterone · Helped
testosterone actually made me feel great for the first year on it
In context ↗ - hormones to suppress e2 · Worse
then we used hormones to suppress it ... my joints started hurting
In context ↗
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 |
|---|---|---|
| — | CFS-like illness began, trigger not identifiedIve struggled for years to make it through the day both from physical and mental exhaustion.In context ↗ | |
| first year on testosterone (before April 2023) | felt great during the first year on testosteronetestosterone actually made me feel great for the first year on itIn context ↗ | Testosterone |
| about two years on testosterone | hormone levels went wrong: moon face, aching joints, restless unrefreshed nightsmy e2 got too high and I began getting moon face then we used hormones to suppress it and it then my joints started hurtingIn context ↗ | Testosterone |
| January 2023 | still exhausted every day, seeking more invasive treatmentsI’m still at my wits end and just looking to see if anyone out there has dealt with this and beat it.In context ↗ |
Adverse events
- Testosterone“my e2 got too high and I began getting moon face” In context ↗ Side effects
- Testosterone“then we used hormones to suppress it and it then my joints started hurting” In context ↗ Side effects
- Testosterone“I felt like I had stayed awake all night and wasn’t tired but not alert” In context ↗ Insomnia from treatment
- Testosterone“I then forgot to donate blood so my rbc got too high” In context ↗ Blood count problems
- Testosterone“I never had acne and now I also still get them” In context ↗ Side effects
- Testosterone“I’d constantly be like huh maybe in a bit hungry. And then once you start the cycle it’s just a constant wanting food.” In context ↗ Other
Symptoms mentioned
Their words about their symptoms
- Sleep problems
napping doesn't work or I’m tired not sleepy enough to nap
In context ↗ - Brain fog
Most days I feel like I’m on autopilot and about to crash.
In context ↗ - Pain & fibromyalgia
my joints started hurting
In context ↗ - Hair loss
libido, hairloss, energy, ed
In context ↗