ME/CFS
No benefit
Worsening fatigue and burnout with ME/CFS, no benefit from therapy programmes
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- Not stated
- Last post
- Mar 2021
In their words
- Condition: ME/CFS
i have cfs and fibro diagnosed a few years ago
In context ↗ - Now: No benefit
The hospital cfs clinic program and treatment protocols really didn’t help me, iv gotten worse since.
In context ↗ - Began after: nothing they could name
i also don’t think I had viral onset?
Summary
Fatigue and struggles dated from childhood; an underactive thyroid was found a decade before 2020 at dangerously low levels and symptoms kept increasing. Symptoms rose further after a bike accident, which led to CFS and fibromyalgia diagnoses. A three-month occupational therapy and physiotherapy CFS programme and a hospital CFS clinic left them worse, and by March 2021 they said they had got worse since, with varying levels of burnout.
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What they tried
Also tried
Their words about each treatment
- psych drugs · Much worse
i have been put on way too many psych drugs, some really made my physical and mental health plummet
In context ↗ - 3 month cfs program with an occupational therapist and physiotherapist · Worse
i feel like it just made me more unwell though, it was too much work.
In context ↗ - dbt and certain kinds of therapy · No change
I feel the same with certain kinds of therapy and dbt, that they don’t seem to help the way they might for NTs
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| about a decade before 2020 | underactive thyroid diagnosed at dangerously low levelsmy hypothyroidism(decade ago) wasnt diagnosed until i had dangerously low levelsIn context ↗ |
| before 2020 | bike accident; symptoms increased a lot, then CFS and fibromyalgia diagnosesthen increased a lot more after the bike accident, which eventually led to cfs/fibro diagnosesIn context ↗ |
| 2020, before October | three-month occupational therapist and physiotherapist CFS programme made them more unwelli feel like it just made me more unwell though, it was too much workIn context ↗ |
| 2021-03-06 | worse since hospital CFS clinic; constantly varying levels of burnoutThe hospital cfs clinic program and treatment protocols really didn’t help me, iv gotten worse since.In context ↗ |
Adverse events
- Antidepressants (unspecified)“i have been put on way too many psych drugs, some really made my physical and mental health plummet” In context ↗ Made symptoms worse
- Graded rehab and self-made programmes“i have done a 3 month cfs program that was with an occupational therapist and physiotherapist , i feel like it just made me more unwell though, it was too much work ... The hospital cfs clinic program and treatment protocols really didn’t help me, iv gotten worse since” Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
i have cfs and fibro diagnosed a few years ago
In context ↗ - Brain fog
more debilitating fatigue and other health problems/cognitive function the older I get
In context ↗ - Light & noise sensitivity
when i got my first pair in 2017 i cried with relief at how life changing they were instantly
In context ↗ - Post-exertional malaise
i feel like it just made me more unwell though, it was too much work
In context ↗