Very low energy with ME/CFS, now a little better but still low energy
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Dec 2022
In their words
- Condition: ME/CFS
when cfs hit, i guess my allready bad bowlsystem went full chaos
In context ↗ - At worst: Severe
Had to get a showerchair too and does not shower as often that i want to. ... If I don't rest after a shower i will faint..
In context ↗ - Now: Somewhat better
Have finaly found some balance where i'm not TOO tired or in TOO much pain, still does not have the energy to do anything.
In context ↗
Read from 28 of their posts and comments; links to the 18 this page draws on
Summary
A father who had been ill for a few years, he described ME/CFS that left him with very low energy: he showered on a chair and needed an hour's rest afterwards or he would faint, slept 12-16 hours and lost half his weight. Rest, pacing, energy drinks, a vitamin mix and antihistamines were what he used. By early 2022 he reported a slightly better spell, breathing almost normally, but still little energy.
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What they tried
What they credit
Also tried
Their words about each treatment
- energydrinks · Helped
i used energydrinks as som sort of cushing. Just sips, no full cans!! It KINDA worked for me.
In context ↗ - rest and pacing · Helped
Rest and paceing, nothing else really works.
In context ↗ - high fat and protein diet with extra oils · Helped
By using a tablespoon of oil instead of one teaspoon in food or put some extra on my plate, i have managed to stop loosing weight. (as fast).
In context ↗ - change of mindset / accepting the illness · Helped
once it all settled and i came into mind that i CAN live with this, it all got better! I don't know if i have had any panic attack in over a year now
In context ↗ - ibuprofen · Helped
Feels like ibuprofen clears up a small amount of brainfog
In context ↗ - paracetamol · Helped
paracetamol takes care of headaches and stuff like that, more.
In context ↗ - moving router and wires away from bed · Helped
just by move my bed further away from outlets and router i got a somewhat better sleep
In context ↗ - vitamin mix · No change
But i take an vitamin mix daily and drink energydrink sometimes under the day to boost my body.
In context ↗ - semen retention / abstinence · No change
I have tried because i read in a book that retaining orgasms may help your energy levles ... But i have never felt any improvments what so ever.
In context ↗ - alfa alfa sprouts · Worse
Have tried alfa alfa sprouts (high histamines) and feelt way worse
In context ↗ - antihistamines · Helped
Bought some antihistamines a month ago and have had the best sleep in years!
In context ↗ - napping · Worse
Napping does not work for me. If anything, it makes everything worse.
In context ↗ - coffee and black tea · Worse
Coffee and black tea gives me the same reaction, tired ess, dissyness and anexty symptoms.
In context ↗ - citodon and tramadol · Not said
Used to quite high doses of citodon, tramadol and stuff with barely any mildering
In context ↗
Approaches: Pacing
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 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 |
|---|---|---|
| onset | ME/CFS began a few months after a bad breakupHad a really bad breakup a few months before this broke out for realIn context ↗ | Not stated |
| 2021-07-24 | able to keep food down and walk 8k steps onceI've got 8k steps a few weeks ago and I didn't die!! Haha. And I have manage to keep food without any puke for a few monthIn context ↗ | Moderate |
| 2021-11-21 | showers took a chair and an hour of rest afterwards or he would faintright after the shower i have like 10 - 15 minutes to get dry and dressed before the body shuts down for like an hourIn context ↗ | Severe |
| 2022-01-26 | a slightly better period, breathing almost normal againI think i have a period thats a little better right now, i just fear it will end at anytime.In context ↗ | Moderate |
Adverse events
- Caffeine and coffee“Coffee gives me anxietylike symptoms, while some energydrinks actually seems to work.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Sleep problems
It takes between 12-36 hours to finaly fall asleep, even if i am sooooo tired that it physically hurts.
In context ↗ - Gut problems
i can't eat whatever or i puke, or even eat at all when energylevel are too low or i'll puke
In context ↗ - Brain fog
Feels like ibuprofen clears up a small amount of brainfog
In context ↗ - Light & noise sensitivity
Yeah, flashing lights are the worst!
In context ↗ - POTS & dysautonomia
If I don't rest after a shower i will faint..
In context ↗ - Pain & fibromyalgia
Only "painkillers" i take are paracetamol and ibuprofen.
In context ↗ - Headaches & migraine
paracetamol takes care of headaches and stuff like that, more.
In context ↗ - Breathlessness
Before i got exausted by taking breaths so took a break once in a while by holding my breath.
In context ↗ - Anxiety & low mood
I don't know if i have had any panic attack in over a year now
In context ↗ - Mast cell (MCAS) & allergies
Allergic to latex and theese works awesome.
In context ↗
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