Mostly housebound with ME/CFS and pain, sometimes bedbound; no overall improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Jul 2024
In their words
- Condition: ME/CFS
I have CFS and Fibromyalgia
In context ↗ - At worst: Moderate
I’m mostly housebound, sometimes bed bound
In context ↗ - Now: No benefit
I’m mostly housebound, sometimes bed bound
In context ↗
Read from 7 of their posts and comments; links to the 7 this page draws on
Summary
Glade 66324 had CFS and fibromyalgia, and by late 2023 was mostly housebound, sometimes bedbound, with pain, crashes and chemical sensitivities. CBD and THC oil eased pain, and a cane helped on better days, though cannabis rubs gave no noticeable relief and they had to avoid overdoing it. A wisdom tooth extraction in early 2024 was followed by a crash despite adrenaline-free anaesthetic and noise-reducing earplugs. No overall improvement was reported.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- CBD and THC oil · Helped
CBD and THC oil help take the edge off for me.
In context ↗ - topical gels · Worse
I’ve tried a bunch of different topical gels but can’t stand the tingly feeling specially with sensitive skin.
In context ↗ - cannabis rubs · No change
I’ve tried some cannabis rubs but haven’t had any noticeable pain relief from them
In context ↗ - Low Dose Naltrexone · Not said
I was able to trial Low Dose Naltrexone through them as my Dr didn’t know anything about it.
In context ↗ - cane · Helped
My cane has been so helpful on days where I’m mostly baseline but have more to do then usual.
In context ↗ - walkers · Not said
I’ve started using a combination of canes and walkers
In context ↗ - wisdom tooth extraction with local anesthetic without adrenaline · Not said
But all worked out in the end, no idea if it made a huge difference to lessening the crash afterwards.
In context ↗ - noise reducing earbuds · Not said
I also used noise reducing earbuds to lessen sensory input.
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. 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 |
|---|---|---|
| — | CFS onset; timing and trigger not statedI also spend huge chunks of my day on my phone when I’m too tired/sick to do anything else.In context ↗ | Not stated |
| 2023-12-06 | mostly housebound, sometimes bedbound, tail end of a crashI’m mostly housebound, sometimes bed boundIn context ↗ | Moderate |
| 2024-07-08 | wisdom tooth extraction followed by a crash; still pacing to avoid overdoing itno idea if it made a huge difference to lessening the crash afterwardsIn context ↗ | Moderate |
Adverse events
- “I’ve tried a bunch of different topical gels but can’t stand the tingly feeling specially with sensitive skin.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I have CFS and Fibromyalgia and just started using a cane in the last couple of months. The idea was to help reduce pain and fatigue.
In context ↗ - Post-exertional malaise
I had one earlier this year while in the tail end of a crash.
In context ↗ - Light & noise sensitivity
I also used noise reducing earbuds to lessen sensory input.
In context ↗