Severely ill with ME/CFS and housebound at times, now somewhat better after acupuncture and massage
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4.5 years
- Last post
- Jun 2024
In their words
- Condition: ME/CFS
I took everything you take before I even got CFS and I developed it while taking those.
In context ↗ - At worst: Severe
5 months post-covid I was severely ill with long covid. I could not move or eat or anything. It was dire.
In context ↗ - Now: Somewhat better
And I did get better. ... 3k steps is a very good day for me
- Began after: COVID
I got covid in early 2020
Read from 13 of their posts and comments; links to the 9 this page draws on
Summary
They had mild POTS before COVID-19 in early 2020; dysautonomia was primary for two years and PEM began in September 2022. Five months post-COVID they were severely ill and could not move or eat. They improved enough to move country within a year, but PEM worsened, leaving them housebound at times. By mid-2024 a cold or stressor could still trigger a full crash and 3,000 steps was a very good day. Acupuncture, craniosacral therapy and massage kept them feeling better.
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What they tried
What they credit
Also tried
Their words about each treatment
- deep breathing exercises · No change
Doesn't matter if I do deep breathing exercises, it doesn't affect it at all.
In context ↗ - Garmin watch / heart rate monitor · Helped
I use the heart rate monitor to keep my heart rate under 50-60% of maximum HR (challenging with POTS!) as much as possible, and the "stress" metric is also pretty useful.
In context ↗ - staying within her energy envelope · Helped
I feel ok if I stay very very carefully within my energy envelope
In context ↗ - acupuncture · Helped
weekly acupuncture & craniosacral therapy, and also massage sometimes, keeps me feeling a lot better
In context ↗ - massage · Helped
and also massage sometimes, keeps me feeling a lot better
In context ↗ - lying down and fully resting during the day · Helped
I actually sleep better if I make sure to lie down during the day a little bit and fully rest (eyes closed).
In context ↗ - dragon bone-oyster shell mixture · Not said
I took this medicine to help make me *more* tired when I had hyperthyroid symptoms.
In context ↗ - therapist who is familiar with chronic illness · Helped
I found it very helpful to have someone to talk to once a week who understood chronic illness
In context ↗ - antihistamine · Not said
I was on another antihistamine then, now I can't tolerate any.
In context ↗
Approaches: CBT & mindset · Alternative therapies · Pacing
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| early 2020 | COVID-19 infection; dysautonomia for two yearsI got covid in early 2020 (already had mild POTS but it was very manageable). I had primarily dysautonomia for the first 2 yearsIn context ↗ |
| mid 2020 | Severely ill with long COVID, could not move or eat5 months post-covid I was severely ill with long covid. I could not move or eat or anything.In context ↗ |
| within another year | Improved enough to move to another country with helpWithin another year I was moving to another country (a long-planned move and with a lot of help, but I did it).In context ↗ |
| September 2022 | PEM began and worsened over winter; housebound at timesthen the PEM started hitting me last September and got worse over winter.In context ↗ |
| October 2023 | Acupuncture, craniosacral therapy and massage kept them feeling betterweekly acupuncture & craniosacral therapy, and also massage sometimes, keeps me feeling a lot better.In context ↗ |
| June 2024 | Still has PEM and crashes after colds or stressors; 3,000 steps is a very good dayI can avoid PEM for months and then get a cold or have some other stressor out of my control knock me right into a full on crash ... 3k steps is a very good day for meIn context ↗ |
Adverse events
- H1 antihistamines (unspecified)“now I can’t tolerate any.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I can avoid PEM for months and then get a cold or have some other stressor out of my control knock me right into a full on crash.
In context ↗ - POTS & dysautonomia
I do have POTS, though it’s well controlled
In context ↗ - Sleep problems
I cant sleep well if I’m over tired.
In context ↗ - Pain & fibromyalgia
body aches, headache, fatigue
In context ↗
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