Body-wide pain and debilitating fatigue with ME/CFS, somewhat better after biologics
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 28 years
- Last post
- Jul 2018
In their words
- Condition: ME/CFS
Eventually she did a questionnaire and said I met the criteria for cfs.
In context ↗ - At worst: Severe
Every time i undertook work or study i would eventually bomb out and end up bed bound with pain fatigue and terrible health.
In context ↗ - Now: Somewhat better
Biologics do help a lot but not to the point of restoring health, for me anyway. They took the suicide level pain away. But i didnt get well.
In context ↗ - Began after: injury or surgery
Backstory was that 6 months earlier I had a fall from a height and landed on my feet
Summary
Crest 86499, a 39-year-old Australian woman, fell six months before symptoms began at age 11 and from age 11 had body-wide pain, lost neck and arm movement, fatigue, poor sleep and depression. Doctors called it ME/CFS, then fibromyalgia, and only 25 years later did scans confirm ankylosing spondylitis. Biologics for the arthritis removed the worst pain but did not restore her health, and her fatigue remained utterly debilitating, worse after any exertion.
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What they tried
Also tried
Their words about each treatment
- physical therapy · Helped
I had some physical therapy and regained my movement.
In context ↗ - anti depressant · Much worse
She put me on anti depressant ... they triggered a suicide attempt
In context ↗ - Biologics · Helped
Biologics do help a lot but not to the point of restoring health, for me anyway. They took the suicide level pain away. But i didnt get well.
In context ↗ - avoiding exertion · Helped
For big stretches of time my actual pain is a lot lower now because i dont exert myself and avoid flares.
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. 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 |
|---|---|---|
| age 11 | lost neck movement, could not lift arms, body-wide painWhen I was 11 I lost range of movement in my neck, couldn't lift my arms etc and had pain body wide.In context ↗ | Not stated |
| — | bed bound after each period of work or studyEvery time i undertook work or study i would eventually bomb out and end up bed bound with pain fatigue and terrible health.In context ↗ | Severe |
| — | biologics for ankylosing spondylitis took away the worst painBiologics do help a lot but not to the point of restoring health, for me anyway.In context ↗ | Moderate |
| 2018 | pain lower when she avoids exertion, fatigue still debilitatingFor big stretches of time my actual pain is a lot lower now because i dont exert myself and avoid flares. But my fatigue is still horrible.In context ↗ | Moderate |
Adverse events
- Antidepressants (unspecified)“they triggered a suicide attempt which i never told anyone about and i just stopped taking them” In context ↗ Suicidal thoughts or attempt
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I had pain in my arms hands neck back shoulders and shins and feet.
In context ↗ - Sleep problems
I also had fatigue sleep problems and developed depression.
In context ↗ - Muscle weakness
I lost range of movement in my neck, couldn't lift my arms etc
In context ↗ - Post-exertional malaise
And the smallest exertion makes the fatigue worse too.
In context ↗ - Neuropathy & tingling
and i then developed severe sciatica that lasted 15 years.
In context ↗