ME/CFS from mild to severe, now somewhat better with pacing and CBD
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 14 years
- Last post
- Jun 2020
In their words
- Condition: ME/CFS
I have suffered with CFS symptoms since I had glandular fever (mono) when I was 14
In context ↗ - At worst: Severe
succumbed to CFS after that (from mild to severe. Now moderate)
In context ↗ - Now: Somewhat better
Pneumonia at 27, followed by tonsillitis whilst in my final year of university and succumbed to CFS after that (from mild to severe. Now moderate)
In context ↗ - Began after: glandular fever or EBV
I had glandular fever at fourteen and was never the same.
Read from 11 of their posts and comments; links to the 9 this page draws on
Summary
Developed CFS symptoms at 14 after glandular fever and was still seeking diagnosis at 27. Pneumonia at the end of 2017 and tonsillitis in April 2018 took the illness from mild to severe; by December 2019 it was moderate. OTC painkillers, melatonin, CBD and pacing help pain, throat flares and sleep; pregabalin and amitriptyline worsened mental health.
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What they tried
What they credit
Also tried
Their words about each treatment
- hot water bottle · Not said
I've taken to holding a hot water bottle against it to ease the discomfort.
In context ↗ - OTC painkillers · Helped
I rely on OTC painkillers and melatonin for sleep
In context ↗ - melatonin · Helped
I rely on OTC painkillers and melatonin for sleep (not legally prescribed in the UK often, so I bought it online).
In context ↗ - pregabalin · Worse
I have tried pregabalin and amytriptaline, but both give my mental health a serious knock (I have history of manic episodes which they trigger).
In context ↗ - pacing · Helped
I feel more functional without prescribed medication, as long as I pace and listen to my body
In context ↗ - soluble paracetamol · Helped
When I overdo it, my throat flares and so soluble paracetamol helps.
In context ↗ - codeine · Not said
On migraine days I take codeine and ibuprofen, and for muscle pain I take a combination depending on severity.
In context ↗ - Naproxen · Not said
Ah I forgot about Naproxen, need to get some more for muscle pain.
In context ↗ - chiropractor · Helped
I sometimes see a chiropractor, which helps with tension and back pain
In context ↗ - Duloxetine · Not said
Coming off Duloxetine made me very, very sick
In context ↗ - CBD · Helped
I’ve noticed a reduction in my pain levels to the point where I’m not needing daily pain relief.
In context ↗
Approaches: Pacing
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 |
|---|---|---|
| age 14 | CFS symptoms began after glandular feverI have suffered with CFS symptoms since I had glandular fever (mono) when I was 14In context ↗ | Mild |
| end of 2017 | pneumoniaAt the end of last year I had pneumoniaIn context ↗ | Mild |
| April 2018 | tonsillitis; CFS went from mild to severeApril this year I had tonsillitis ... succumbed to CFS after that (from mild to severe. Now moderate) | Severe |
| 2019-12-06 | improved from severe to moderate(from mild to severe. Now moderate)In context ↗ | Moderate |
| 2020-06-30 | CBD eased pain; anxious during lockdownI’ve noticed a reduction in my pain levels to the point where I’m not needing daily pain relief.In context ↗ | Moderate |
Adverse events
- Pregabalin (Lyrica), Amitriptyline (Elavil), Duloxetine (Cymbalta)“I have tried pregabalin and amytriptaline, but both give my mental health a serious knock (I have history of manic episodes which they trigger).” In context ↗ Mood or psychiatric effects
- Amitriptyline (Elavil)“I have tried pregabalin and amytriptaline, but both give my mental health a serious knock (I have history of manic episodes which they trigger).” In context ↗ Mood or psychiatric effects
- Duloxetine (Cymbalta)“Coming off Duloxetine made me very, very sick. ... Took me about a month before I lost withdrawal effects” In context ↗ Withdrawal problems
- CBD (cannabidiol)“But on foggy days, CBD has made cognition 10x worse.” In context ↗ Made symptoms worse
- CBD (cannabidiol)“I had a similar issue, sometimes it the oil they use (if you get CBD oil). ... my stomach is completely fine with CBD drinks instead of oils” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
When I overdo it, my throat flares and so soluble paracetamol helps.
In context ↗ - Brain fog
on foggy days, CBD has made cognition 10x worse
In context ↗ - Sleep problems
I rely on OTC painkillers and melatonin for sleep
In context ↗ - Pain & fibromyalgia
Whole body soreness/muscle aches (the flu-like kind)
In context ↗ - Headaches & migraine
On migraine days I take codeine and ibuprofen
In context ↗ - Neuropathy & tingling
Random shooting, stabbing or nerve pain (usually in my legs)
In context ↗ - Muscle weakness
goes into spasm where I can’t turn my head either way or lift my arms
In context ↗ - Anxiety & low mood
I’ve been heavily relying on it during lockdown due to anxiety
In context ↗ - Flu-like symptoms
I also have a chronic sore throat, it has never gone away.
In context ↗
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