ME/CFS
Severe → no benefitIll for 3.5 years
ME/CFS worsening since diagnosis, bed all day after outings; swimming and cannabis tried
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 3.5 years
- Last post
- Mar 2024
In their words
- Condition: ME/CFS
cfs (and pem!) suck.
In context ↗ - At worst: Severe
Instead i’m laying in bed all day while my boyfriend takes on the financial and physical burdens.
In context ↗ - Now: No benefit
my health has been taking a downward spiral since ... literally the only thing that helps me feel “normal” and not like a zombie
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Island 84195 was diagnosed with CFS at 18, three years before posting, and said their health had spiralled downward since. In August 2023 they spent a few hours out with friends in a wheelchair, which still caused PEM and left them in bed all day. Swimming was the only exercise they could do and eased joint pain and OI; cannabis was the only thing that made them feel normal, and an unnamed medication briefly helped fatigue by killing their appetite before GI side effects ended it.
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What they tried
Also tried
Their words about each treatment
- resting and staying housebound · No change
I stayed housebound for the whole week prior and rested so much physically and mentally
In context ↗ - Swimming · Helped
Swimming is the only exercise I can do now, and it’s my favorite thing in the world!! It feels so much less painful in my joints, helpful for OI
In context ↗ - weed · Helped a lot
weed works wonders for me too! literally the only thing that helps me feel “normal” and not like a zombie
In context ↗ - Metformin · Worse
ive tried it and the only thing it did was kill my appetite which helped me a bit with fatigue ... ended up stopping it because the gi side effects weren’t worth it.
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 |
|---|---|---|
| 2020 (age 18, diagnosed) | diagnosed with CFS at 18; health declining sinceI got diagnosed when I was 18 (three years ago) and my health has been taking a downward spiral since.In context ↗ | Not stated |
| 2023-08-01 | mostly in bed all day; housebound for a week beforehand; wheelchair for outingsI’ve been in bed all day unable to move a finger.In context ↗ | Severe |
| 2024-03-27 | still ill; cannabis the only thing that helps them feel normalweed works wonders for me too! literally the only thing that helps me feel “normal” and not like a zombieIn context ↗ | Not stated |
Adverse events
- Metformin“ended up stopping it because the gi side effects weren’t worth it.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
even during my visit PEM started kicking in.
In context ↗ - POTS & dysautonomia
It feels so much less painful in my joints, helpful for OI, all those things.
In context ↗ - Pain & fibromyalgia
It feels so much less painful in my joints
In context ↗