ME/CFS
Severe → no benefitNeeds ongoing treatment
Mostly bedbound with ME/CFS and fibromyalgia, no improvement from medications
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- May 2026
In their words
- Condition: ME/CFS
I have fibromyalgia and cfs.
In context ↗ - At worst: Severe
I know I'm mostly bed bound with CFS
In context ↗ - Now: No benefit
I used to get sore and yeah it sucked, but it wasn't debilitating like this.
In context ↗
Read from 10 of their posts and comments; links to the 8 this page draws on
Summary
A 32-year-old woman with CFS and fibromyalgia, mostly bed bound but walks to many appointments and tries short walks. In May 2026 she reported severe soreness and restlessness after walking up a one-level incline—glutes the next day, then whole body—or doing very light physical therapy, bad enough to consider the ER. She has been on benzodiazepines about nine years; Klonopin helps calm restlessness, many other medications and supplements gave no relief, and only Ambien seemed to help her CFS/PEM symptoms.
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What they tried
Also tried
klonopin· Helpedambien· Helpedponstel· No changesavella· No changebaclofen· No changesupplements and remedies· No changephysical therapy· Worsebenedryl· Worsegabapentin· Worseseroquel· Worsepromethazine· Worseamitriptyline· Worsepot· Worse
Their words about each treatment
- klonopin · Helped
klonopin helps calm it
In context ↗ - ponstel · No change
I just kept moaning after taking ponstel (I have adenomyosis) and klonopin.
In context ↗ - physical therapy · Worse
Even after very light physical therapy it happens.
In context ↗ - ambien · Helped
One med that could only make my cfs/pem symptoms better was ambien.
In context ↗ - benedryl · Worse
Antihistamines I don’t do well with such as benedryl.
In context ↗ - gabapentin · Worse
Gabapentin intensifies my pain for some reason.
In context ↗ - seroquel · Worse
Same with anything similar medications that cause sedative effects, examples gabapentin, seroquel, promethazine, amitriptyline.
In context ↗ - savella · No change
I’ve taken everything but I think savella with no relief.
In context ↗ - pot · Worse
Pot I just can’t do. It makes me paranoid.
In context ↗ - baclofen · No change
I tried baclofen but unfortunately did not help.
In context ↗ - supplements and remedies · No change
I’ve tried so many supplements and remedies that never helped I think I’m done with that route.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2026-05-05 | mostly bed bound; severe whole-body soreness and restlessness after light activityTo where I couldn’t move, so restless and moaning in pain.In context ↗ | Severe |
| 2026-05-14 | still mostly bed bound; gabapentin intensifies her painI know I'm mostly bed bound with CFSIn context ↗ | Severe |
Adverse events
- Physical therapy / physiotherapy“Even after very light physical therapy it happens. I end up restless, and am moaning and klonopin helps calm it.” In context ↗ Made symptoms worse
- Diphenhydramine (Benadryl)“Antihistamines I don’t do well with such as benedryl. I am completely out it, somewhat hallucinate and have panic attacks off it.” In context ↗ Mood or psychiatric effects
- Gabapentin (Neurontin)“I don’t do well with gabapentin and I’ve read it has same properties. Gabapentin intensifies my pain for some reason.” In context ↗ Made symptoms worse
- Gabapentin (Neurontin), Quetiapine (Seroquel), Promethazine (Phenergan), Amitriptyline (Elavil), Milnacipran (Savella)“Same with anything similar medications that cause sedative effects, examples gabapentin, seroquel, promethazine, amitriptyline. Reminds me of smoking weed and becoming paranoid.” In context ↗ Side effects
- Cannabis (THC, marijuana)“Pot I just can’t do. It makes me paranoid.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I have fibromyalgia and cfs.
In context ↗ - Post-exertional malaise
Severe soreness after doing activities that I didn't think would even make me sore.
In context ↗ - Sleep problems
always wake up in the middle of the night at the same exact time each night.
In context ↗ - Headaches & migraine
vulvodynia/anxiety/panic disorder/migraines/adenoymyosis
In context ↗