ME/CFS
Moderate → no benefit
ME/CFS with constant headache, sound sensitivity and slow digestion; symptoms persisted
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Nov 2023
In their words
- Condition: ME/CFS
One of the leading hypotheses for me/cfs at the moment is that it is caused by mitochondrial dysfunction.
In context ↗ - At worst: Moderate
I know liberty caps can be found in the wild here in the UK, but I'm in no state to go out hunting for mushrooms.
In context ↗ - Now: No benefit
Yes I still have symptoms. ... 24/7 I have a background headache, which gets worse as I do more.
In context ↗
Read from 17 of their posts and comments; links to the 14 this page draws on
Summary
A UK user with ME/CFS had a 24/7 headache that worsened with activity, aches and pains, sound sensitivity and slow digestion. Prescribed high-CBD cannabis helped mentally and physically and Emgality was 'bloody fantastic'. Amitriptyline 10 mg 'worked wonders', metoclopramide made digestion much better, and intermittent fasting and a steam room helped. Symptoms persisted.
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What they tried
Also tried
Their words about each treatment
- prescription cannabis · Helped
I get high CBD stuff on prescription, 10/10.
In context ↗ - intermittent fasting · Helped
I know it's a joke, but I've had some success with IF.
In context ↗ - high protein diet · Not said
eat a high protein diet, aiming for 150g a day.
In context ↗ - Emgality · Helped a lot
Yep Emgality here. It is bloody fantastic.
In context ↗ - steam room / hot baths · Helped
Effect has lasted even now to Tuesday after I went to the spa on Sunday.
In context ↗ - amitriptyline · Helped a lot
Yes 10mg amitriptyline worked wonders for me.
In context ↗ - meditation · Helped
I do meditation every day, and I find that really helps me.
In context ↗ - restorative yoga · Not said
I find I can do restorative yoga as it's slow and mostly floor-based.
In context ↗ - Botox · Helped
Best things for me: Botox
In context ↗ - metoclopramide · Helped a lot
I take one of these after dinner and things are much better.
In context ↗
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 | After |
|---|---|---|
| — | ME/CFS of unstated onset and duration; constant symptoms limiting activityI'm in no state to go out hunting for mushrooms.In context ↗ | |
| 2023-10-31 | felt much better for days after a 20-minute steam room at a spaEffect has lasted even now to Tuesday after I went to the spa on Sunday.In context ↗ | Hyperthermia and sauna |
| 2023-11-13 | still symptomatic; migraines and digestion much better on treatmentMine is really slow and I take one of these after dinner and things are much better.In context ↗ |
Symptoms mentioned
Gut problemsHeadaches & migraineLight & noise sensitivityPain & fibromyalgiaSleep problemsTemperature regulation
Their words about their symptoms
- Headaches & migraine
24/7 I have a background headache, which gets worse as I do more.
In context ↗ - Pain & fibromyalgia
Usually I have aches and pains in places but keeping really warm helps this.
In context ↗ - Light & noise sensitivity
Cannabis is the only medicine I've found that helps with my phonophobia.
In context ↗ - Gut problems
Mine is really slow and I take one of these after dinner and things are much better.
In context ↗ - Sleep problems
My prescription is to take 1ml a day, 2 hours before sleep.
In context ↗ - Temperature regulation
I have fingerless gloves I wear indoors.
In context ↗