Bedbound with ME/CFS, now much better after moving in with parents and lowering stress
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2 years
- Last post
- Sep 2024
In their words
- Condition: ME/CFS
we might have very mild MECFS
In context ↗ - At worst: Severe
At my worst, I couldn't remember what I ate earlier in the day and I needed to have my eyes closed in the dark for 90% of the day.
In context ↗ - Now: Much better
The good news: I do think i am very slowly getting better. I no longer have light sensitivity and I generally feel "ok" throughout the day. I still get tired faster than before.
In context ↗ - Began after: glandular fever or EBV
Ever since my mono in January, my medication for Ulcerative Colitis has been keeping me in a revolving door of debilitating fatigue.
- Says they never had: Muscle weakness
I have zero muscle pain, PEM or muscle fatigue.
- Says they never had: Pain & fibromyalgia
I have zero muscle pain, PEM or muscle fatigue.
- Says they never had: Post-exertional malaise
I still haven't been able to effectively produce PEM
Read from 12 of their posts and comments; links to the 8 this page draws on
Summary
Wave 16595 dates their fatigue to mono in January 2022, when ulcerative colitis infusions left them bedbound about three weeks in four. Diagnosed with POTS and sleep apnoea, at their worst they needed their eyes closed in a dark room 90% of the day. After moving in with their parents and keeping stress low they say they are very slowly getting better: no light sensitivity now, working remotely and taking classes, but tiring faster than before.
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What they tried
What they credit
Also tried
Their words about each treatment
- medication for Ulcerative Colitis (infusions) · Much worse
Each infusion now keeps me bedbound for the better part of 3 weeks.
In context ↗ - salty liquids / water · Helped
I drink 120 ounces of salty liquids a day and drink plenty of potassium/vitamin c.
In context ↗ - not standing in one place, keep moving · Helped
One thing that helped me is to not stand in one place, but keep moving if I up.
In context ↗ - lifting weights, running, walks · Worse
Lifting weights would also make me tired for a chunk of the rest of the day. I've stopped lifting.
In context ↗ - depression medication · Helped
I also got on a depression medication that helps with the nervous system and I actually surprisingly get more restful sleep.
In context ↗ - hiking / nature walks · Helped
Hiking (in non hot areas) has been a life saver. ... gives me more energy.
In context ↗ - melatonin · Helped
Melatonin helps me feel more rested, but doesn't help me fall asleep.
In context ↗ - trazodone · Helped
I take trazodone. Nothing else helps me fall asleep.
In context ↗ - eating smaller meals · Helped
if I eat smaller meals, drink a ton of water, and weirdly enough, wearing my glasses instead of my contacts helps a lot
In context ↗ - glasses instead of contacts · Helped
wearing my glasses instead of my contacts helps a lot
In context ↗
Approaches: Diet · Exercise and activity
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 8 months 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 |
|---|---|---|
| January 2022 | mono, then fatigue beganEver since my mono in January ... keeping me in a revolving door of debilitating fatigueIn context ↗ | Not stated |
| 2022 | bedbound three weeks out of every four after infusionsEach infusion now keeps me bedbound for the better part of 3 weeks.In context ↗ | Severe |
| 2023-05-28 | stopped lifting, took up nature walks; small improvementsI still can't run or lift, but I'm seeing small improvements.In context ↗ | Mild |
| 2023-06-23 | moved in with parents; stress down, hunger backFinally after 9 months of being at home, my stress is a lot better and my hunger came back.In context ↗ | Mild |
| 2024-09-11 | no light sensitivity, feels ok most of the day, still tires fasterI do think i am very slowly getting better. I no longer have light sensitivity and I generally feel "ok" throughout the day.In context ↗ | Mild |
Adverse events
- “Each infusion now keeps me bedbound for the better part of 3 weeks.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
Yup mines POTS with sleep apnea.
In context ↗ - Sleep problems
My internal clock from my autonomic dysfunction is literally night and day as far as when my body thinks I should be asleep.
In context ↗ - Brain fog
At my worst, I couldn't remember what I ate earlier in the day
In context ↗ - Light & noise sensitivity
I no longer have light sensitivity
In context ↗ - Vision problems
now I'm back to tunnel vision when I walk
In context ↗
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