ME/CFS
Moderate → somewhat betterNeeds ongoing treatment
ME/CFS with 15-hour sleep and hard crashes, somewhat better after a year or two
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Sep 2023
In their words
- Condition: ME/CFS
who then diagnosed me with me/cfs at 23
In context ↗ - At worst: Moderate
Sleeping upwards of 15 hours a day. I just could not wake up.
In context ↗ - Now: Somewhat better
My condition improved after a year or two where I could leave the house more ... and my health has decreased since.
In context ↗ - Began after: stress or burnout
A lot of stress in my life with my boyfriend (now husband)‘s parents.
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Their ME/CFS began at 22 while finishing studying amid family stress; they slept 15 hours a day and could not wake. Low B12 and vitamin D led to a pernicious anaemia diagnosis and lifelong injections; ME/CFS was diagnosed at 23. A long specialist appointment caused a three-week crash, and ritalin helped only briefly before hard crashes. Their condition improved after a year or two, then declined.
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What they tried
Also tried
Their words about each treatment
- B12 injections · No change
Diagnosed with pernicious anaemia and ongoing B12 injections required for life. ... Still little to no improvement.
In context ↗ - vitamin D · Not said
Vitamin D better, Vitamin B12 not enough.
In context ↗ - r*talin · Worse
He prescribed me r*talin and I took it maybe 30 times total, because I found it would help initially but once the day was over, I was worse and would crash hard.
In context ↗ - Methylphenidate (Ritalin, Concerta) · Worse
I found it would help initially but once the day was over, I was worse and would crash hard.
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| age 22 | onset while finishing studying: exhaustion, sleeping 15 hours a dayI’d just turned 22 and was finishing up studying. ... I was so, so tired. Sleeping upwards of 15 hours a day. I just could not wake up.In context ↗ |
| age 23 | crashed for three weeks after the diagnostic appointmentWent home and crashed for 3 weeks after that appointment.In context ↗ |
| a year or two after onset | condition improved enough to leave the house moreMy condition improved after a year or two where I could leave the house moreIn context ↗ |
| 2023-09-13 | health declined after developing more autoimmune conditionsmy health has decreased sinceIn context ↗ |
Adverse events
- Methylphenidate (Ritalin, Concerta)“I found it would help initially but once the day was over, I was worse and would crash hard.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Sleep problems
Sleeping upwards of 15 hours a day. I just could not wake up.
In context ↗ - Post-exertional malaise
Went home and crashed for 3 weeks after that appointment.
In context ↗