Largely housebound with ME/CFS after COVID, somewhat better with pacing and ivabradine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 22 months
- Last post
- Feb 2024
In their words
- Condition: ME/CFS
Covid infection in April 2022 led to POTS and ME/CFS, among other things.
In context ↗ - At worst: Severe
I use a mobility scooter on the rare occasions I leave the house. I am limited to about 15 minutes of upright activity
In context ↗ - Now: Somewhat better
I feel like I am slowly improving generally but it is still really up and down.
In context ↗ - Began after: COVID
I tested positive for covid on April 1st this year
In context ↗
Read from 22 of their posts and comments; links to the 15 this page draws on
Summary
Ill since a COVID infection in April 2022, a dentist developed POTS, ME/CFS-like fatigue, brain fog, tinnitus and sound sensitivity and stopped work. Ivabradine eased her racing heart, and a breathing physio plus careful pacing helped. A week of clear-headedness after a November 2022 hysterectomy led her to try aspirin, which helped a little. She remained largely housebound, limited to about 15 minutes upright, and was gaining only slowly.
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What they tried
What they credit
Also tried
Their words about each treatment
- ivabradine · Helped
Ivabradine is helping with my heart rate POTS issues but the rest has been pretty constant
In context ↗ - propranolol · No change
I personally have tried propranolol from my GP and ivabradine from my cardiologist to try and lower my heart rate but not much luck so far
In context ↗ - keeping hydrated and increasing salt intake · No change
Keeping hydrated and increasing my salt intake also not making a huge difference
In context ↗ - CHOP/Dallas exercise programme · Not said
I have been following the CHOP/Dallas exercise programme for the last 6 weeks ... nothing I have tried thus far has seemed to make much difference
In context ↗ - pacing · Helped
I'm grateful that I am slowly mastering pacing and feel so much better when I stay within my energy limits.
In context ↗ - breathing physio / breathing exercises · Helped
I had a few sessions with the breathing physio and it was amazing the difference in how I felt.
In context ↗ - 8 week mindfulness for health course · Helped
I am half way through an 8 week mindfulness for health course and meditation is really good for calmingy body.
In context ↗ - counselling · Helped
3 visits with a counselor has done wonders in helping guide me to stop fighting my body and accept that this is my new normal for now
In context ↗ - iron infusion · Helped
I had more bloods and was found to be really anaemic and an iron infusion has taken me from feeling super crappy with no energy, to just crappy with a little bit of energy.
In context ↗ - hysterectomy · Helped
I had a hysterectomy Nov 21st and in the week that followed I felt the best I had in months and had ZERO BRAIN FOG. By the following week the brain fog was back.
In context ↗ - blood thinning meds · Not said
I know they gave me blood thinning meds during and after surgery and maybe that might be it
In context ↗ - aspirin · Helped
we decided to try 1 x 100mg Aspirin a day for a month ... The last couple of days my brain has definately felt clearer
In context ↗ - Paxlovid · No change
I took Paxlovid when I got Covid the second time ... No better but no worse either.
In context ↗ - Paracetamol · No change
Paracetamol isn't quite doing it for me.
In context ↗ - Massage · Worse
I feel terrible. I think it was way too much stimulation. My brain fog is terrible and my body feels heavy and fatigued.
In context ↗
Approaches: POTS medication · Anticoagulants · Mind-body practices · Pacing · Supplements · Surgery & structural
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2022-04-01 | COVID infection; off work for 8 weeksI tested positive for covid on April 1st this yearIn context ↗ | Moderate | |
| 2022-08 | stopped work; on the couch most of the dayMost of the time on the couch etc as I can only be standing for short stints.In context ↗ | Severe | |
| 2022-09 | breathing physio eased breathlessness and the sense of crisisbreathing exercises pushed my body from crisis (I think I might die) to chronic illnessIn context ↗ | Moderate | Meditation, yoga, breathwork |
| 2022-11-21 | hysterectomy; one week with no brain fogin the week that followed I felt the best I had in months and had ZERO BRAIN FOGIn context ↗ | Moderate | |
| 2023-01-20 | longer activity stretches before resting; able to cook dinner againI can now sometimes do 30-45 mins of activity before resting.In context ↗ | Moderate | Pacing and the energy envelope |
| 2024-02-08 | still off work, housebound, mobility scooter for rare outingsI use a mobility scooter on the rare occasions I leave the house.In context ↗ | Moderate | Pacing and the energy envelope |
Adverse events
- Graded rehab and self-made programmes“2 days ago 10 mins was too much and I spent the rest of the day lying down when I didn't listen to my body.” In context ↗ Made symptoms worse
- Massage“I feel terrible. I think it was way too much stimulation. My brain fog is terrible and my body feels heavy and fatigued.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
if I over do it PEM strikes
In context ↗ - Brain fog
pretty crippling brain fog
In context ↗ - POTS & dysautonomia
I have been diagnosed with POTS
In context ↗ - Tinnitus
My symptoms are POTS, brain fog, fatigue and randomly tinnitus.
In context ↗ - Light & noise sensitivity
severe sensitivity to sound
In context ↗ - Breathlessness
I still get breathless going up stairs
In context ↗ - Heart symptoms & palpitations
my heart rate will be 130-140 ish
In context ↗ - Headaches & migraine
if I ignore that I get a really bad headache
In context ↗ - Vision problems
my eyes taking a long time to change focus
In context ↗ - Muscle weakness
my body feels heavy and fatigued
In context ↗
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