ME/CFS
Moderate → no benefitIll for 7 yearsNeeds ongoing treatment
Moderate-severe ME/CFS, now moderate; fludrocortisone stopped fainting, energy unchanged
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 7 years
- Last post
- Feb 2025
In their words
- Condition: ME/CFS
without really any negative effect on my me/cfs
In context ↗ - At worst: Moderate
I'm probably moderate now, but was classified as "moderate-severe" by an OT about 3 years ago
In context ↗ - Now: No benefit
my energy levels are mostly the same, I'm just now not having to recover from frequently passing out
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Ocean 35165 was diagnosed with ME/CFS in 2018 at about 22, after starting a degree. An occupational therapist rated them moderate-severe around 2021; by 2024 they described themselves as moderate, used a wheelchair outdoors and could not work full time. Fludrocortisone, taken for three and a half years, stopped frequent fainting from orthostatic hypotension but did not change their energy levels. They also have fibromyalgia and migraines.
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What they tried
Also tried
Their words about each treatment
- fludrocortisone · Helped
I've been on fludrocortisone for maybe 3 1/2 years, and it's definitely helped to manage my orthostatic intolerance, without really any negative effect on my me/cfs
In context ↗ - wheelchair · Helped
I have a wheelchair which has helped with being able to do some things
In context ↗ - loops earplugs · Helped
I used my loops experience, which struck a good balance for me
In context ↗ - Ibuprofen gel · Helped
I also took over the counter painkillers with me (Ibuprofen gel and paracetamol) and made use of both of them throughout.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2018 | Diagnosed with ME/CFS after starting a degreeI was diagnosed in 2018, about 2 months after I had moved city and started a degreeIn context ↗ | Moderate |
| 2021 | Rated moderate-severe by an occupational therapist; needs a wheelchairwas classified as "moderate-severe" by an OT about 3 years agoIn context ↗ | Moderate |
| 2024-04 | Describes self as moderate rather than moderate-severeI'm probably moderate now, but was classified as "moderate-severe" by an OT about 3 years agoIn context ↗ | Moderate |
| 2025-02 | Blood pressure kept healthy-low with fludrocortisoneI now take fludrocortisone to help keep it at a healthy level and it's now healthy-low instead of dangerous-low.In context ↗ | Moderate |
Symptoms mentioned
Anxiety & low moodHeadaches & migraineLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgia
Their words about their symptoms
- POTS & dysautonomia
I also have Orthostatic Hypotension (which is medicated, but I still regularly experience the physical effects)
In context ↗ - Pain & fibromyalgia
Fibromyalgia (again, this is medicated, but i still experience the effects)
In context ↗ - Headaches & migraine
Migraines (for which no medication has been effective- these tend to come in waves
In context ↗ - Anxiety & low mood
depression + anxiety (not as bad as I have had in the past, but they are definitely still there)
In context ↗ - Light & noise sensitivity
it was painful even with my loops in, so if you can get some ear protection
In context ↗