Condition not stated
Severe → no benefitIll for 10 years
Housebound and in bed most of the day after ten years of declining health
- Condition
- Condition not stated
- At worst
- Severe (mostly bedbound)
- Ill for
- 10 years
- Last post
- Jul 2024
In their words
- Condition: Condition not stated
How do I know if I have ME or I’m just sick and tired?
In context ↗ - At worst: Severe
Ever since I’ve been practically house bound, fatigue and anhedonia plague my life ... I shower very infrequently and struggle to brush my teeth most days.
In context ↗ - Now: No benefit
for 10 years my health has been deteriorating with one issue after the next
In context ↗ - Began after: nothing they could name
So for 10 years my health has been deteriorating with one issue after the next.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
They described ten years of declining health: after a weeks-long cold in college and stopping psychiatric medication, they had a month of crippling fatigue, then Crohn's disease, a psychotic episode and hospitalisation, and later surgery removing a foot of small intestine. After a bad reaction to changed psychiatric medication and a suicide attempt, they have since been housebound and in bed most of the day, sleeping in two three-hour stretches, and asked whether this could be ME/CFS.
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What they tried
Also tried
Wellbutrin· Helped · wore offmedical marijuana· Helpedexercise· Worsepsych meds· Much worseantipsychotics· Not said
Their words about each treatment
- Wellbutrin · Helped
he prescribed me Wellbutrin ... I realized I didn’t struggle to wake up anymore so I took it a bit more often
In context ↗ - medical marijuana · Helped
entertained some medical marijuana, which helped with the pain
In context ↗ - antipsychotics · Not said
They put me on antipsychotics and I continued on with my life.
In context ↗ - psych meds · Much worse
due to weight gain and fatigue I changed my psych meds with Dr supervision. I guess I had a very bad reaction because I attempted suicide
In context ↗ - exercise · Worse
I feel terrible when I exercise and am very worried I will only get worse.
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. 3 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 10 years before July 2024 | health began deteriorating, one issue after anotherSo for 10 years my health has been deteriorating with one issue after the next.In context ↗ | Mild |
| in college, after my first job | weeks-long cold, then a month of crippling fatigueI caught a nasty cold, and it lasted weeks ... I suffered a month of crippling fatigue and barely did anythingIn context ↗ | Moderate |
| about 5 years later | severe psychosis and hospitalisationabout 5 years later I had a bout of pretty severe psychosis. I lost control and was rightfully hospitalized.In context ↗ | Not stated |
| a few months after the psychosis, then a year of recovery | slightly better after bowel surgeryCue a year of the most excruciatingly slow recovery but I finally felt slightly better.In context ↗ | Not stated |
| after changing psych meds | bad reaction to changed psychiatric medication, suicide attempt and hospitalisationI guess I had a very bad reaction because I attempted suicide and was hospitalized again.In context ↗ | Not stated |
| July 2024 | housebound, in bed most of the day, minimal self-careEver since I’ve been practically house bound, fatigue and anhedonia plague my life, I’m either too tired or not interested.In context ↗ | Severe |
Adverse events
- Bupropion (Wellbutrin)“After the cold my meds stopped working and would only hurt my stomach.” In context ↗ Gut side effects
- Cannabis (THC, marijuana)“about 5 years later I had a bout of pretty severe psychosis” In context ↗ Mood or psychiatric effects
- Cannabis (THC, marijuana)“I lost control and was rightfully hospitalized.” In context ↗ Hospitalisation
- “I guess I had a very bad reaction because I attempted suicide and was hospitalized again.” In context ↗ Suicidal thoughts or attempt
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I literally only eat, and lay in my bed sleeping only 3 hours twice a day.
In context ↗ - Gut problems
my stomach only got worse
In context ↗ - Pain & fibromyalgia
entertained some medical marijuana, which helped with the pain
In context ↗ - Anxiety & low mood
fatigue and anhedonia plague my life
In context ↗