ME/CFS worsened lately, now somewhat better with extended-release propranolol
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 20 years
- Last post
- Dec 2022
In their words
- Condition: ME/CFS
I have relatively mild CFS with few pains but it has become worse in the past year
In context ↗ - At worst: Moderate
I'm moderate and still exercise. Very slowly, when I feel I can, doing half of what I could.
In context ↗ - Now: Somewhat better
It seems that my physical symptoms are less pronounced and I crash less deeply but I'd say the brain fog and emotional incontinence are the same.
In context ↗ - Began after: nothing they could name
I was always tired as a kid already.
In context ↗
Read from 39 of their posts and comments; links to the 23 this page draws on
Summary
A long-time CFS patient, tired since childhood, who worsened through a couple of really bad years recently. They tried pacing therapy, sertraline, ibuprofen, levothyroxine, electrolytes, propranolol, CoQ10 and desloratadine with mixed results; propranolol had once gone badly but an extended-release form now helps. Their COVID booster caused two weeks of PEM. By mid-2022 physical symptoms were less pronounced but brain fog persisted.
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What they tried
What they credit
Also tried
Their words about each treatment
- mould-free environment · No change
Currently I am somewhere with deffo no mould for a few weeks and haven't noticed any improvements so far
In context ↗ - sertraline · No change
Also taking sertraline but that hasn't helped either, or certainly not enough to warrant the side effects.
In context ↗ - electrolytes · Helped
It makes the difference between being able to get up and not, while reducing the need to snack on crap
In context ↗ - psychological treatment to learn pacing · No change
currently in psychological treatment to learn pacing. Can't say any level of pacing has been successful yet
In context ↗ - ibuprofen · Helped
400mg of ibuprofen will normally shift migraine pains
In context ↗ - Mg · Not said
I'm also supplementing with Mg, N-ACC and vitamins C and D just to be safe.
In context ↗ - N-ACC · Not said
I also add N-ACC to the drink once a day.
In context ↗ - intermittent fasting (5-2) · Worse
I tried intermittent fasting (5-2) but the fasting days were impossible for me. Zero energy.
In context ↗ - all sorts of diets · No change
I've tried all sorts of diets on my cfs journey, I don't think food has a major impact.
In context ↗ - levothyroxine · No change
I did a trial for levothyroxine on my own for a few months but I can't say it helped energy. It was low however.
In context ↗ - propranolol · Helped
Started again half a year ago with an extended release one (not sure why I didn't start on these) for pots and it really helps.
In context ↗ - exercise keeping pulse below 120bpm · Helped
Keeping the pulse below 120bpm. It deffo helps my mental and physical health unless I overdo it which is a risk.
In context ↗ - gargling aspirine · Helped
my doc recommended gargling aspirine (make up from powder or dispersible tablets). To be expelled not swallowed. It's by far the most effective treatment for me
In context ↗ - diphenhydramine · Helped
I take a 1st gen antihistamine (diphenhydramine) when I really feel the need to get a good night sleep and it's working so far
In context ↗ - contraceptive implant · Helped
Got the implant for the migraines and never looked back.
In context ↗ - Q10 · Helped
I've been on 300mg of Q10 for 2 months or so and so far find it hard to make conclusion.
In context ↗ - desloratadine · Helped
I started desloratadine the same time (both on advice on a ME/CFS specialist who runs a long covid clinic now). It seems that my physical symptoms are less pronounced and I crash less deeply
In context ↗ - sun · Helped
I dunno what it is but it might be the sun. It really helps.
In context ↗ - COVID vaccination as treatment · Worse
Booster sent me into 2 weeks of pem but I'd do it again.
In context ↗
Approaches: H1 antihistamines · POTS medication · Exercise and activity
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 16 years after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| childhood | always tired as a child; gradual onsetI was always tired as a kid already.In context ↗ | Not stated | |
| 2017 | life upheaval; CFS got worseit has gotten worse lately (lots of upheaval in my life from 2017)In context ↗ | Mild | |
| 2020 | a couple of really bad years, mostly mental fatiguehad a couple of really bad years CFS wise -mostly mental fatigue, very little muscle issues-In context ↗ | Moderate | |
| April 2021 | electrolytes helped a bitI'm experimenting with electrolytes myself in different concentrations and it really seems to help a bit.In context ↗ | Mild | Salt, electrolytes and fluids |
| October 2021 | propranolol prescription helpful for POTSI got my propranolol prescription that way and it's been helpfulIn context ↗ | Mild | Propranolol (Inderal) |
| December 2021 | two weeks of PEM after COVID boosterBooster sent me into 2 weeks of pem but I'd do it again.In context ↗ | Not stated | |
| July 2022 | physical symptoms less pronounced and crashes less deep; brain fog unchangedIt seems that my physical symptoms are less pronounced and I crash less deeply but I'd say the brain fog and emotional incontinence are the same.In context ↗ | Mild | CoQ10 / ubiquinol |
Adverse events
- COVID vaccination as treatment“I had the 1st shot a few days ago and did not experience any symptoms past a little soreness in the shoulder as is usual with vaccines.” In context ↗ Side effects
- COVID vaccination as treatment“Booster sent me into 2 weeks of pem but I'd do it again.” In context ↗ Made symptoms worse
- Sertraline (Zoloft)“not even when I had a near total loss of appetite under sertraline for 3 months” In context ↗ Side effects
- Sertraline (Zoloft)“It was very bad as I was weaning off sertraline but now I get it when tired” In context ↗ Withdrawal problems
- Sertraline (Zoloft)“Alcohol only started fucking me up when I went on SSRI. I'm long off the crap but the drink intolerant has stuck around.” In context ↗ Side effects
- Intermittent fasting“I tried intermittent fasting (5-2) but the fasting days were impossible for me. Zero energy.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Booster sent me into 2 weeks of pem but I'd do it again.
In context ↗ - Brain fog
Brain fog, memory and heavy head/eyes/limbs are near constant.
In context ↗ - POTS & dysautonomia
I also take propranolol for prevention and for pots with moderate success.
In context ↗ - Headaches & migraine
Light sensitivity and generally migraine type symptoms are frequent (often but not always minus the headaches).
In context ↗ - Light & noise sensitivity
Light sensitivity and generally migraine type symptoms are frequent
In context ↗ - Muscle weakness
I get tired muscles but not soreness.
In context ↗ - Gut problems
I'm often experiencing a super bloated feeling and IBS (stress/hormonal).
In context ↗ - Temperature regulation
What doesn't help is living in the north and generally being sensitive to the cold.
In context ↗ - Neuropathy & tingling
I call it the zaps and feel it mostly in my skull/behind my eyes.
In context ↗
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