Moderate ME/CFS for years, somewhat better with levothyroxine and graded exercise
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- May 2021
In their words
- Condition: ME/CFS
My CFS is moderate (sometimes mild tho!)
In context ↗ - At worst: Moderate
My CFS is moderate (sometimes mild tho!)
In context ↗ - Now: Somewhat better
a year later I am able to manage more activity.
In context ↗
Read from 15 of their posts and comments; links to the 8 this page draws on
Summary
Fjord 59963 has had ME/CFS for years, which they called moderate though sometimes mild, plus hypothyroidism. They credited levothyroxine with making a big difference and said long-term graded exercise with an occupational therapist helped them manage more activity over a year or two; CBT and Headspace also helped. The first Oxford/AstraZeneca COVID vaccine made them crash hard for some time after. They still described moderate ME in March 2021.
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What they tried
What they credit
Their words about each treatment
- levothyroxine · Helped a lot
Made a big difference. I saw an endocrine specialist who started me on 25mg and worked me up to 100mg so that I could adjust properly
In context ↗ - combined pill · Helped
I've been taking the combined pill for a good year or two and I feel best when on it.
In context ↗ - GET · Helped
long term GET has helped me ... over a year or two I slowly started upping my activity level. Very slowly to reduce the PEM but a year later I am able to manage more activity
In context ↗ - CBT · Helped
CBT helped me too.
In context ↗ - Headspace · Helped
have found that over time it has really helped my mental health and the way I approach things
In context ↗ - Oxford AstraZeneca vaccine · Worse
The first one made me crash hard and I felt awful for some time after.
In context ↗
Approaches: CBT & mindset · Sex hormones · Thyroid hormones
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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | ongoing ME/CFS alongside hypothyroidismI've had a hypothyroidism diagnosis for years in addition to CFSIn context ↗ | Moderate | |
| 2018-07-31 | thyroid treatment worked up to 100mgAbsolutely! Made a big difference. I saw an endocrine specialist who started me on 25mg and worked me up to 100mg so that I could adjust properly :)In context ↗ | Not stated | Levothyroxine (Synthroid) |
| 2019-07-07 | slowly built up activity with an occupational therapistover a year or two I slowly started upping my activity level. Very slowly to reduce the PEM but a year later I am able to manage more activity.In context ↗ | Mild | Graded exercise therapy (GET) |
| 2021-03-13 | crashed after first Oxford/AstraZeneca COVID vaccineThe first one made me crash hard and I felt awful for some time after.In context ↗ | Moderate | |
| 2021-05-31 | still moderate ME, second vaccine bookedI have my second one booked for tomorrow and am pretty nervous about it.In context ↗ | Moderate |
Adverse events
- COVID vaccination as treatment“Woke up at 2am ish feeling awful- bad headache and body pain, sore arm, nausea, very sore chest.” In context ↗ Side effects
- COVID vaccination as treatment“The first one made me crash hard and I felt awful for some time after.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Very slowly to reduce the PEM but a year later I am able to manage more activity.
In context ↗ - Anxiety & low mood
I think it's really easy to feel depressed and shitty about having this disease
In context ↗ - Pain & fibromyalgia
my muscles are a bit stronger which helps reduce pain when exhausted
In context ↗
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