ME/CFS
Moderate → no benefitIll for 8 years
ME/CFS flare left them at home, off sport and schoolwork; no benefit from acupuncture
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 8 years
- Last post
- Apr 2019
In their words
- Condition: ME/CFS
I was diagnosed with CFS after having mono at 13, as my symptoms would not subdue
In context ↗ - At worst: Moderate
keeping me from doing anything but rest ... Now I can do none of it
In context ↗ - Now: No benefit
Now I can do none of it, as this disease is still finding ways to ruin my life.
In context ↗ - Began after: glandular fever or EBV
I was diagnosed with CFS after having mono at 13, as my symptoms would not subdue.
Summary
A 16-year-old who developed joint and muscle pain at age eight, was diagnosed with fibromyalgia at ten and with CFS after mono at thirteen. In April 2019 a month-long flare left them resting at home and unable to do sport or schoolwork. Antibiotics gave slight relief and acyclovir did nothing; they had just started valacyclovir. Weekly cold laser therapy dulled their knee pain; acupuncture and ondamed gave none.
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What they tried
Also tried
Their words about each treatment
- antibiotics · Not said
I had been given antibiotics repeatedly for a reoccurring strep infection, 8x in a single year to be exact
In context ↗ - antibiotics (to rule out Lyme disease) · Helped
I was put on more antibiotics to rule out Lyme disease. I did feel a little better while taking them
In context ↗ - acyclovir · No change
after acyclovir didn’t seem to do much for me
In context ↗ - Valacyclovir (valtrex) · Not said
I am also starting to take Valacyclovir (valtrex)
In context ↗ - acupuncture · No change
tried many other seemingly ridiculous treatments, such as acupuncture, ondamed etc, and got relief with none of them
In context ↗ - ondamed · No change
such as acupuncture, ondamed etc, and got relief with none of them
In context ↗ - cold laser therapy · Helped
It’s called cold laser therapy, and I was shocked that it helped my joint pain at all
In context ↗ - physical therapy · Not said
I have the treatment done when I go to my weekly physical therapy
In context ↗ - Flu vaccine · Worse
up until a separate flare about a year ago (possibly caused by a flu shot)
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. The chart starts 5 years after onset: the story doesn’t say how ill they were before that. 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 8 | joint and muscle pain beganIt really started with joint and muscle pain when I was about 8In context ↗ | Not stated |
| age 13 | mono, then CFS diagnosedI was diagnosed with CFS after having mono at 13, as my symptoms would not subdueIn context ↗ | Mild |
| about a year before April 2019 | separate flare after a flu shot, stopped gym and sportup until a separate flare about a year ago (possibly caused by a flu shot) I was lifting at my local gymIn context ↗ | Moderate |
| April 2019 | month-long flare, only able to rest at homea flare up that has lasted a little over a month now, keeping me from doing anything but restIn context ↗ | Moderate |
| 2019-04-28 | weekly cold laser therapy dulled knee painIt’s called cold laser therapy, and I was shocked that it helped my joint pain at all.In context ↗ | Moderate |
Adverse events
- Antibiotics (unspecified)“Prior to this I had been given antibiotics repeatedly for a reoccurring strep infection, 8x in a single year to be exact — I believe I have developed Candida from this.” In context ↗ Gut side effects
- Antibiotics (unspecified)“I did feel a little better while taking them, but after I discontinued my immune system weakened and I had gotten pneumonia, and after healing from that — bronchitis.” In context ↗ Other
- Flu vaccine“up until a separate flare about a year ago (possibly caused by a flu shot)” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogHeadaches & migraineHeart symptoms & palpitationsPOTS & dysautonomiaPain & fibromyalgiaTemperature regulationVision problems
Their words about their symptoms
- Pain & fibromyalgia
muscle/joint pain and swelling
In context ↗ - POTS & dysautonomia
occasional fainting
In context ↗ - Temperature regulation
low grade fevers
In context ↗ - Heart symptoms & palpitations
heart palpitations (my heart rate is often around 120bpm+)
In context ↗