ME/CFS
Outcome unclear
ME/CFS worsening from mild to severe, cannabis eased symptoms but not the illness
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Sep 2017
In their words
- At worst: Severe
I go outside my flat and do stuff with friends maybe once a month, and don't even have energy to play computer games half the time
In context ↗
Read from 21 of their posts and comments; links to the 16 this page draws on
Summary
Crane 29832, ill with CFS since about age 15, describes a gradual 10-year course that worsened from mild to severe. They spent long periods crashing, with PEM, brain fog, flu-like symptoms, pain and headaches; colds and exercise repeatedly set them back. Cannabis eased symptoms but did not improve the illness, and a brief remission after wart removal was followed by a crash.
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What they tried
Also tried
cannabis· Helpedcrazy health diets· No changeincreasing calories to 4k/day· No changesleep hygiene tricks· No changemoving countries / cities· No changesupplements· No changeAcetyl L-Carnitine· No changeswimming· WorseAnti-Depressants· Worseexercise· Much worsewart removal· Not said
Their words about each treatment
- swimming · Worse
Even when I have managed to get into what seemed like remission swimming always took a hard toll on my body.
In context ↗ - crazy health diets · No change
I have honestly tried every single crazy health diet out there to improve my CFS ... None of it has helped my CFS at all.
In context ↗ - exercise · Much worse
exercising only made me more and more sick.
In context ↗ - increasing calories to 4k/day · No change
I did try to eat 4k calories a day when I was working out and trying to gain weight. Didn't help anything except my weight gain.
In context ↗ - sleep hygiene tricks · No change
I've tried every sleep hygiene trick in the book over the last decade, when I crash nothing helps, sadly.
In context ↗ - moving countries / cities · No change
Have moved around in different countries / cities, hasn't given any noticeable change.
In context ↗ - supplements · No change
money I wasted on supplements ... supplements that don't work!
In context ↗ - Acetyl L-Carnitine · No change
Couldn't feel any difference at all :), took it for a while.
In context ↗ - Anti-Depressants · Worse
I was completely exhausted for the 2 weeks I took them.
In context ↗ - cannabis · Helped
Cannabis is amazing for the terrible symptoms CFS gives though.
In context ↗ - wart removal · Not said
Just at the time of removal I had the best remission I had had in a years time.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were | After |
|---|---|---|---|
| 2014 | exercise threshold improvedPersonally my exercise threshold improved 2 years ago.In context ↗ | Mild | Everyday exercise and activity |
| after 2 years of exercise | lost exercise gains after 3 days pushing mentallySadly the improvement I made over the course of 2 years was completely ruined by 3 days of pushing myself too hard mentally by working and other mistakes, and am now back to 0.In context ↗ | Severe | |
| 2015 | worst year, could do nothing but restLast year which was my worst with CFS I was so fatigued I basically couldn't do anything other than rest.In context ↗ | Severe | |
| 2016-03 | prolonged crash for 8-9 monthsI have basically been crashing out for almost 8 to 9 months now. I go outside my flat and do stuff with friends maybe once a month, and don't even have energy to play computer games half the time.In context ↗ | Severe | |
| 2017-05 | spending 16 hours a day in bed or on the couchI already spend around 16 hours a day in bed / on the couch (at least!!)In context ↗ | Severe | |
| 2017-08 | reported never worse; cannabis eased symptomsI have never been worse than I am nowIn context ↗ | Severe | |
| 2017-09 | brief remission after wart removal, then crashI had the best remission I had had in a years time. ... I was back to crashville shortly afterIn context ↗ | Severe |
Adverse events
- Antidepressants (unspecified)“One of the key side effects from Anti-Depressants is that they make you more tired. Personally I was completely exhausted for the 2 weeks I took them.” In context ↗ Side effects
- Everyday exercise and activity“It wasn't until it all came crashing down like a house of cards that I realised that my cognitive abilities had slowly deteriorated as I was doing exercise.” In context ↗ Made symptoms worse
- Everyday exercise and activity“The worst part was that exercising only made me more and more sick.” In context ↗ Made symptoms worse
- “I was back to crashville shortly after x)” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogFlu-like symptomsHeadaches & migrainePain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
colds always trigger my PEM and I usually crash for 6-10 days
In context ↗ - Brain fog
I would have extreme mind fog
In context ↗ - Sleep problems
1) Sleep issues. You fall asleep easier
In context ↗ - Pain & fibromyalgia
the terrible feeling when the body aches with CFS
In context ↗ - Headaches & migraine
Head aches / Migraines. Again, works great!
In context ↗ - Flu-like symptoms
have me have flu like symptoms the next day or week
In context ↗