ME/CFS
Severe → no benefitIll for 2.5 years
ME/CFS with constant pain and burning eyes, still exhausted despite Klonopin
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 2.5 years
- Last post
- Apr 2024
In their words
- Condition: ME/CFS
after I developed chronic fatigue (I had POTs prior)
In context ↗ - At worst: Severe
everything hurts, I can barely stand. It is like I haven’t slept at all.
In context ↗ - Now: No benefit
my eyes burn constantly like I need to close them and sleep even if I've slept 18 hours straight
In context ↗ - Began after: injury or surgery
had a colonoscopy/endoscopy (with biopsies) at the end of October, since then I’ve been so fatigued
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
A 20-year-old woman who had POTS before developing chronic fatigue in October 2021, after a colonoscopy and endoscopy with biopsies, slept 13 to 18 hours a day yet could not stay awake more than six to eight hours, with constant body pain, burning eyes and crashes after exertion. Klonopin helped her sleep and eased pain; Ativan left her foggy. By April 2024 she was still exhausted, her eyes burning constantly even after sleeping 18 hours straight.
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What they tried
Also tried
Klonopin· Helpedbeta blockers· No changeeye drops· No changecolonoscopy/endoscopy with sedation· WorseAtivan· Worse
Their words about each treatment
- colonoscopy/endoscopy with sedation · Worse
had a colonoscopy/endoscopy (with biopsies) at the end of October, since then I’ve been so fatigued I physically cannot stay up 6 hrs after sleeping
In context ↗ - Klonopin · Helped
when I take a full pill (.5) I notice my body gets very very relaxed and all the bodily stress and pains CFS gives me are significantly better
In context ↗ - Ativan · Worse
it makes my brain foggy instead of relaxed like Klonopin
In context ↗ - beta blockers · No change
I have hyperadrenergic POTs that is pretty much uncontrolled by beta blockers
In context ↗ - eye drops · No change
Have tried eye drops, etc., nothing helps the burning.
In context ↗
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 |
|---|---|---|
| late October 2021 | chronic fatigue began after colonoscopy/endoscopy with biopsieshad a colonoscopy/endoscopy (with biopsies) at the end of October, since then I’ve been so fatigued I physically cannot stay up 6 hrs after sleeping no matter how much sleep I getIn context ↗ | Severe |
| 2021-12-15 | lowest point: sleeping 10-11 hours, everything hurt, could barely stand, crying daily, sleep study cancelledeverything hurts, I can barely stand. It is like I haven’t slept at all.In context ↗ | Severe |
| 2024-04-07 | still whole-body fatigue and constantly burning eyes despite long sleepI feel fatigue in my entire body. It feels like it's weighed down by cement trying to move it.In context ↗ | Severe |
Adverse events
- “had a colonoscopy/endoscopy (with biopsies) at the end of October, since then I’ve been so fatigued I physically cannot stay up 6 hrs after sleeping” In context ↗ Made symptoms worse
- Clonazepam (Klonopin)“I did cut back and just could NOT stay awake. I did not understand it at all because everything I read said that it’d cause insomnia, and it had the absolute opposite effect on me.” In context ↗ Withdrawal problems
- Clonazepam (Klonopin), Lorazepam (Ativan)“but it makes my brain foggy instead of relaxed like Klonopin and I don’t like how it feels.” In context ↗ Side effects
Symptoms mentioned
Heart symptoms & palpitationsMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
It's a combination of PEM and POTs and it's so annoying.
In context ↗ - Sleep problems
I have slept almost 10 hours for the past 3 nights and 11 today, but it’s not enough
In context ↗ - Pain & fibromyalgia
everything hurts, I can barely stand
In context ↗ - POTS & dysautonomia
I have hyperadrenergic POTs that is pretty much uncontrolled by beta blockers
In context ↗ - Heart symptoms & palpitations
I quite often randomly wake up in the middle of the night with my heart beating at 180-200.
In context ↗ - Muscle weakness
It feels like it's weighed down by cement trying to move it.
In context ↗