Homebound with ME/CFS, too weak to shower, still using a rollator, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 20 years
- Last post
- Aug 2024
In their words
- Condition: ME/CFS
I have chronic pain on top of my CFS/ME
In context ↗ - At worst: Severe
I’ve been homebound for 5 years and I live in my bed. I get up only to go to the bathroom and to grab delivery food from my front porch.
In context ↗ - Now: No benefit
I’m getting worse with no hope in sight.
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
This person described long-standing CFS/ME with chronic pain and fibromyalgia, and said they kept getting worse despite over 20 years of countless prescriptions, physical therapy, herbal remedies and thousands of dollars spent. By 2023 they had been homebound for five years, living in bed and too weak to shower, and by 2024 still used a rollator for weakness, fatigue, balance and pain. They said recommended treatments did not help and they kept worsening, though stockpiled hydrocodone helped their worst pain but knocked them out.
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What they tried
Also tried
Their words about each treatment
- PT · No change
have tried countless prescriptions, PT, everything doctors recommended for over 20 years. Nothing helped
In context ↗ - herbal remedies · No change
I’ve tried everything numerous times over, believe me. I’ve spent countless years and thousands of dollars on doctors, medications, PT, herbal remedies, you name it.
In context ↗ - sleep meds · Worse
every sleep med I’ve taken has either knocked me out for 24+ hours so that I turn zombie-like and unable to cope with life responsibilities
In context ↗ - melatonin · Worse
like melatonin, which gives me sleep paralysis, which is terrifying and worse than insomnia, in my opinion
In context ↗ - hydrocodone · Worse
just one hydrocodone pill knocks me out and I’m pretty much worthless for up to two days after I take one. I hate that, but when the pain gets too bad I am so grateful to have them.
In context ↗ - shower routine with rests · Helped
I have a routine now. ... It helps to have places to rest throughout the whole ordeal!
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/ME onset with chronic painI have chronic pain on top of my CFS/ME (diagnosed with fibromyalgia many years ago).In context ↗ | Not stated |
| 2023-07-24 | homebound and living in bedI’ve been homebound for 5 years and I live in my bed. I get up only to go to the bathroomIn context ↗ | Severe |
| 2024-08-05 | still using a rollator, no recoveryI personally have trouble with weakness, fatigue, balance, and pain, and I found a cane would not help with any of those things. So I use a my rollator.In context ↗ | Severe |
Adverse events
- “every sleep med I’ve taken has either knocked me out for 24+ hours so that I turn zombie-like and unable to cope with life responsibilities” In context ↗ Side effects
- Melatonin“like melatonin, which gives me sleep paralysis, which is terrifying and worse than insomnia, in my opinion.” In context ↗ Side effects
- Hydrocodone (Vicodin, Norco)“just one hydrocodone pill knocks me out and I’m pretty much worthless for up to two days after I take one” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I have chronic pain on top of my CFS/ME (diagnosed with fibromyalgia many years ago).
In context ↗ - Sleep problems
what’s keeping me awake is pain from fibro, arthritis, god knows what else, restless legs, anxiety, gastric problems, neuropathy, etc.
In context ↗ - Anxiety & low mood
restless legs, anxiety, gastric problems, neuropathy, etc.
In context ↗ - Gut problems
gastric problems
In context ↗ - Muscle weakness
I’m too weak to shower, even with a chair
In context ↗