Bedbound with ME/CFS, now much better, crediting codeine and other medication
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 3 years
- Last post
- Aug 2020
In their words
- Condition: ME/CFS
I got a diagnosis of CFS
In context ↗ - At worst: Very severe
I was bedbound, couldn’t lift up a glass of water to drink and couldn’t use a knife and fork.
In context ↗ - Now: Much better
most of the time I’m functioning at about 50% capacity
In context ↗ - Began after: another virus
I (F26) was diagnosed with an inner ear infection at the age of 18 and then when the symptoms didn’t go away it was stress
In context ↗
Read from 16 of their posts and comments; links to the 9 this page draws on
Summary
Puffin 87926 fell ill at 18 after an inner ear infection and was bedbound within two years. She later improved enough to study and work part time, mostly from home, crediting codeine and other medication for giving her more of a life. By 2019 she was declining again and feared having to quit work; by 2020 she put herself at about 50% capacity, with pregnancy easing pain and fatigue while dizziness and POTS flared. Heavy caffeine use brought palpitations, headaches and IBS, while pushing herself led to hard crashes.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- energy drinks · Worse
I was drinking up to 6 cans of energy drink a day... Got seriously addicted. Palpitations increased, weird headaches and horrific IBS
In context ↗ - glucose tabs · Not said
Used to eat those glucose tabs by the packet too which is really stupid.
In context ↗ - codeine · Helped a lot
I’ve been taking codeine for over a year now and it’s worked wonders for my pain and IBS.
In context ↗ - antidepressants · Not said
I’m also on numerous other meds including antidepressants and antipsychotics
In context ↗ - tea · Worse
when I drink tea I feel super nauseous, headachey and odd
In context ↗ - rest · Helped
Resting more and cutting down on caffeine helped.
In context ↗ - anti-inflammatories · Helped
Usually relieved by rest, anti inflammatories and a warm bath.
In context ↗ - posture work · Helped
Researching about posture and applying that helped my back a lot too
In context ↗ - coming to terms with my new life · Helped
One of the things that really helped me was coming to terms with my “new life”.
In context ↗
Approaches: Other drugs and medicines
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 2 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2011 | diagnosed with an inner ear infection at 18; symptoms never went awayI (F26) was diagnosed with an inner ear infection at the age of 18 and then when the symptoms didn’t go away it was stressIn context ↗ | Not stated |
| 2013 | bedbound, could not lift a glass of water or use a knife and forkI was bedbound, couldn’t lift up a glass of water to drink and couldn’t use a knife and fork.In context ↗ | Very severe |
| 2014 | began to get better, then mostly housebound for a few yearsstarted to get better about 5 years agoIn context ↗ | Moderate |
| 2017 | returned to work part time and started part-time universityI managed to return to work two years ago, part timeIn context ↗ | Mild |
| 2018 | codeine and other medication gave her much more of a lifeI’ve been taking codeine for over a year now and it’s worked wonders for my pain and IBSIn context ↗ | Mild |
| 2019-08 | declining again with a big crash, feared losing workRecently I’ve been declining again and I’m terrified of going back to my severe daysIn context ↗ | Mild |
| 2020-08 | about 50% capacity; pregnancy eased pain and fatigue while dizziness and POTS flaredmost of the time I’m functioning at about 50% capacityIn context ↗ | Mild |
Adverse events
- Energy drinks (Red Bull)“up to 6 cans of energy drink a day... Palpitations increased” In context ↗ Heart rhythm problems
- Energy drinks (Red Bull)“Palpitations increased, weird headaches and horrific IBS” In context ↗ Side effects
- Energy drinks (Red Bull)“Palpitations increased, weird headaches and horrific IBS” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
the PEM that comes from doing so much in so little time
In context ↗ - POTS & dysautonomia
More dizziness and the POTS was really bad for a while
In context ↗ - Pain & fibromyalgia
Way less pain and less fatigue
In context ↗ - Gut problems
it’s worked wonders for my pain and IBS
In context ↗ - Headaches & migraine
Yes I used to get it down the left side of my head.
In context ↗ - Heart symptoms & palpitations
Palpitations increased
In context ↗ - Muscle weakness
couldn’t lift up a glass of water to drink and couldn’t use a knife and fork
In context ↗ - Neuropathy & tingling
The tingling and random numbness is something I do suffer with
In context ↗ - Anxiety & low mood
the major anxiety that comes after a high episode and the inevitable crash into depression after that
In context ↗
Ask Miruvor AI
Similar stories
-
Almost bedridden with ME/CFS, now somewhat better and mostly housebound after pacing
They fell ill suddenly after a virus, were immediately moderate and gave up work. Crashes lowered their baseline, and in 2023 they became almost bedridden and unable to tolerate light or sound. Better pacing, a progesterone-only pill that stopped their…
-
Not enough detail to draw a path
ME/CFS that left them badly affected for over two years, now somewhat better with codeine
Orchid 14487 dates their ME/CFS to a single COVID booster dose, which they say left them badly affected for over two years and which they regret. From mid-2024 they reported taking codeine daily at 60-70 mg, crediting it with keeping them alive and turning…
-
Long bedbound periods with ME/CFS, now much better on a medication routine
Hill 55051 had CFS for 13 years plus Chrons disease, with pain and daily sickness. After long bedbound periods, they credited a medication routine—mirtazapine for sleep, cyclizine for sickness and rotating tramadol, codeine or morphine for pain—with enabling…
-
Long COVID fever and breathlessness meant 11 and a half weeks off work, now back part-time
A 50-year-old woman tested positive for COVID on 20 January 2021 and was out of work 11 and a half weeks with fever spikes, breathlessness, body and back pain and lost smell and taste; she was diagnosed with Post Covid Syndrome. Benzonatate and codeine eased…