ME/CFS symptoms for years, practically bedbound, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Apr 2022
In their words
- Condition: ME/CFS
I have ME/CFS. I am also a recovering breast cancer patient.
In context ↗ - At worst: Severe
At the moment I'm practically bedbound. I do small stuff, like feed the cats, shower, then go back to bed.
In context ↗ - Now: No benefit
Years and years and years and I only kept getting worse.
In context ↗ - Began after: nothing they could name
Years and years and years and I only kept getting worse.
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Prairie 90951 had ME/CFS symptoms for years before diagnosis; symptoms were long put down to treatment-resistant depression. She pushed herself through regular 5-8 km runs and kept getting worse, and by April 2021 was practically bedbound, doing only one small task at a time. The previous year brought chemotherapy and surgery for breast cancer, and 2021 radiotherapy left an infected radiation wound. Her last post in April 2022 noted alcohol affected her differently since getting ME.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- exercise · Worse
I think making myself exercise in that way was a very, very bad idea
In context ↗ - chemotherapy · Not said
first weekly chemotherapy (for like 16-18 weeks?)
In context ↗ - being operated · Not said
then being operated a few days before christmas
In context ↗ - radiotherapy · Not said
this year I had radiotherapy
In context ↗ - alcohol · Not said
I've noticed the effect of alcohol isn't the same it used to be before getting ME
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. 2 steps say too little to place on the scale and are only in the table. The line stops at their last step that can be placed; how they are now is in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| years before 2021 | fatigue and pain began while depressedI started getting symptoms (fatigue, pain etc) that I absolutely felt were not due to the depression.In context ↗ | Mild |
| years before diagnosis | kept getting worse while pushing through exerciseI think making myself exercise in that way was a very, very bad ideaIn context ↗ | Not stated |
| 2021-04-18 | practically bedbound after breast cancer treatmentAt the moment I'm practically bedbound. I do small stuff, like feed the cats, shower, then go back to bed.In context ↗ | Severe |
| 2022-04-19 | still ill, alcohol no longer affects her as beforeI'm not a heavy drinker, but sometimes yeah.In context ↗ | Not stated |
Adverse events
- Everyday exercise and activity“I think making myself exercise in that way was a very, very bad idea” In context ↗ Made symptoms worse
- “the radiation in turn burnt away the skin. It kind of just melted away, leaving an open wound as big as the palm of my hand. It got infected, too, of course.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Doing bigger things like shopping for groceries, going to the doctor or the lab etc drains me to the point I'm not even able to do the small things for several days.
In context ↗ - Pain & fibromyalgia
I started getting symptoms (fatigue, pain etc)
In context ↗ - Anxiety & low mood
The depression was very real. Very bad. I was hospitalized a few times.
In context ↗