Arms exhausted by slight activity with ME/CFS, somewhat better after bed rest and caffeine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6.5 years
- Last post
- Dec 2022
In their words
- Condition: ME/CFS
I've had CFS since I was around 16 or 17 (or possibly before then, but that's when it really started to affect me)
In context ↗ - At worst: Severe
I've started limiting my activity to essentially being in bed all day, and only getting up in the evening for a few hours to play some online games with my long-distance partner.
In context ↗ - Now: Somewhat better
I've been doing a lot better lately overall, but I'm still in the process of figuring out my symptoms, what causes them to flare up, etc.
In context ↗
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
Bramble 35931 had had CFS since age 16 or 17, and by age 23 their ability to draw had deteriorated completely, with arms exhausted and sore from slight activity. Moving back with their parents, quitting art and limiting activity to bed all day brought slow, unsteady improvement, helped by a tabletop drawing tablet and a little caffeine for brain fog. Months later they were doing better overall but still had near-constant chest tightness and breathlessness.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- limiting my activity to essentially being in bed all day · Helped
This has been what's made the most drastic change- pretty much immediately after I started doing this I began to feel a tiny bit better.
In context ↗ - pacing · Helped
I've been noticing progress- slow and unsteady, but progress nonetheless
In context ↗ - high-protein, high-calorie diet · Helped
Trying my best to eat at least 1300 calories a day has been another big factor in starting to feel better
In context ↗ - Enof vegetable powder · Not said
I don't really have any hard evidence on whether it's making a difference for me or not, but at the very least it can't hurt
In context ↗ - protein powder · Not said
with a huge scoop of protein powder and two scoops of Enof vegetable powder
In context ↗ - caffeine · Helped
I've found that a little bit helps a *ton* with my brain fog
In context ↗ - gentle stretching routine · Helped
which has helped a fair bit with muscle pain
In context ↗ - energy tracking app (Daylio) · Helped
I've also been keeping careful track of how I'm feeling with an energy tracking app, and it's been extremely helpful
In context ↗
Approaches: Pacing · Radical rest
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 | After |
|---|---|---|---|
| age 16-17 | CFS began; could draw for hours a dayI've had CFS since I was around 16 or 17In context ↗ | Mild | |
| 2022 (about a year before Sept 2022) | deteriorated until barely able to draw; in bed all dayover the last year my ability to even draw at all has deteriorated completelyIn context ↗ | Severe | |
| October 2022 | resting most of the day brought slow progress, could draw two hours a dayIt's a slow start, but for the first time in years I feel like I'm getting better rather than getting worse.In context ↗ | Moderate | Radical rest |
| December 2022 | doing a lot better overall but constant tight chest and breathlessnessI've been doing a lot better lately overall, but I'm still in the process of figuring out my symptomsIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Muscle weakness
My arms feel exhausted and sore from even the slightest bit of activity.
In context ↗ - Pain & fibromyalgia
a gentle stretching routine at least once a day as well, which has helped a fair bit with muscle pain
In context ↗ - Brain fog
my brain fog was so bad for a while that I could barely maintain a conversation with my partner
In context ↗ - Anxiety & low mood
struggling with a horrible anxiety disorder
In context ↗ - Breathlessness
how it feels like it's impossible to get a full breath of air
In context ↗ - Heart symptoms & palpitations
how fast it feels like my heart is beating most of the time
In context ↗
Ask Miruvor AI
Similar stories
-
Long COVID at its worst mostly lying down, now nearly back to normal with Zepbound
Ill with long COVID from July 2024; at worst sleeping or lying down most of the day, barely functioning, with fatigue, PEM, brain fog, palpitations and POTS. Antihistamines and supplements raised energy within a week, and nattokinase, bromelain and curcumin…
-
Severe ME/CFS, housebound and often bedbound; walking better after physio, then relapsed
Pebble 29054, in the UK, has suspected ME/CFS and describes a decline from mild to severe after NHS GET/CBT and exercise, now housebound and often bedbound with crashes, sleep disruption, headaches, dizziness, GI/IBS and electrolyte problems. A private…
-
Housebound with ME/CFS, improved on LDN and memantine then relapsed
After COVID in August 2024 they were housebound for months with severe GI flares, then fatigue, body and joint pain and brain fog. They credited low-dose naltrexone and memantine for lifting them from housebound to roughly 75–80% recovered, with semaglutide…
-
Housebound with long COVID, now much better with pacing and rest
She caught COVID in 2022 while burnt out and got progressively worse for two years, ending up housebound after a medication and a functional medicine provider she says made her far sicker and cost thousands. From mid-2025 she improved slowly, crediting…