ME/CFS
Severe → no benefitIll for 16 years
Mostly bedridden with ME/CFS at times, still crashing, no lasting recovery
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 16 years
- Last post
- Apr 2019
In their words
- Condition: ME/CFS
I wish I had done this from the time I was first diagnosed (I am 16 years into CFS).
In context ↗ - At worst: Severe
They all know that I can not function during winter ... I have been so fatigued that I’ve been mostly bed-ridden
- Now: No benefit
I am now almost 33 and it’s worse than ever.
In context ↗ - Began after: glandular fever or EBV
Mono (at 16) to CFS
In context ↗
Read from 27 of their posts and comments; links to the 13 this page draws on
Summary
Eagle 60666 fell ill with CFS after mono at 16 and, 16 years on, was still crashing whenever she pushed. She described periods of being mostly bedridden, 'death neck' migraine episodes, sleep lost to pain and severe cold intolerance. She relied on kratom for pain, trigger point massage, heat, magnesium oil and vitamin D, and took Adderall only at 10 mg occasionally to avoid overdoing it; she reported no lasting recovery.
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What they tried
Also tried
Adderall· HelpedKratom· Helpedmagnesium· Helpedvitamin D· Helpedtaking breaks and getting enough rest· Helpedeating healthy· Helpedtrigger point therapy· Helpedheat (hot bathroom, space heater, heating pad, house heating)· Helpedkombucha· Helpedpotassium tablets· Helpedmedical journal / medical diary· Helpedfasting· Worsemidol· Much worse
Their words about each treatment
- Adderall · Helped
For me, it’s a lifesaver, but I am obsessively careful with it to prevent worsening myself.
In context ↗ - fasting · Worse
In fact, I literally cannot fast, it makes me feel shaky and weak and extra lethargic and almost always leads to a migraine.
In context ↗ - Kratom · Helped
I use Kratom for chronic pain instead of pharmaceutical opiates. I couldn’t function without it.
In context ↗ - magnesium · Helped
I use magnesium oil and it’s awesome!
In context ↗ - vitamin D · Helped
I also use magnesium and vitamin D (keeps my depression in check).
In context ↗ - taking breaks and getting enough rest · Helped
Getting enough rest *always* and eating healthy are huge factors in my wellbeing.
In context ↗ - trigger point therapy · Helped
One thing that does help me in these worst times, taking the edge off enough to take me from suicidal to “ill get through this” is trigger point therapy.
In context ↗ - heat (hot bathroom, space heater, heating pad, house heating) · Helped
I basically create a sauna (doing it now and it made me wonder) to make my body (and mind) chill.
In context ↗ - kombucha · Helped
Helps me! My brother bought me a brew-your-own kombucha kit for Christmas.
In context ↗ - potassium tablets · Helped
I was given potassium tablets and have had them monitored since.
In context ↗ - midol · Much worse
the excessive amount of midol I had used was the most possible culprit
In context ↗ - medical journal / medical diary · Helped
Also, another huge help for me has been keeping a daily medical journal.
In context ↗
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 14 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 |
|---|---|---|
| age 16 | mono followed by CFSMono (at 16) to CFSIn context ↗ | Not stated |
| about two years before March 2019 | all-time low from potassium deficiency after Midol, near cardiac arrestThe recovery did take weeks, I was at an all-time low for almost a month while my levels were restoring.In context ↗ | Severe |
| 2019-03-22 | bedridden after one day of non-stop activityone day of non-stop activity and I haven’t been able to get out of bed other than to use the bathroom since SundayIn context ↗ | Severe |
| 2019-03-25 | 30+ hour 'death neck' migraine after screen timeI just got out of a “death neck” episode that lasted me 30+ hoursIn context ↗ | Severe |
| 2019-04-03 | still ill 16 years after diagnosis, tracking symptoms in a daily journalI am 16 years into CFSIn context ↗ | Severe |
Adverse events
- Midol (acetaminophen, caffeine, pyrilamine)“I was unknowingly potassium deficient (from taking midol daily for a week!) and my heart almost stopped.” In context ↗ Refeeding or deficiency problems
- Amphetamine salts (Adderall)“It can even cause migraines for me” In context ↗ Side effects
- Amphetamine salts (Adderall)“or even end up with severe insomnia where I am tossing and turning until 6AM” In context ↗ Insomnia from treatment
- Amphetamine salts (Adderall)“if I take a large dose or multiple doses of adderall, I completely forget to eat and then get a migraine” In context ↗ Side effects
- Intermittent fasting“I literally cannot fast, it makes me feel shaky and weak and extra lethargic and almost always leads to a migraine” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPost-exertional malaiseTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
the more I push, the harder I fall
In context ↗ - Headaches & migraine
I too have migraines and it definitely can onset them or worsen them for me
In context ↗ - Light & noise sensitivity
I need absolute quiet and darkness when this occurs
In context ↗ - POTS & dysautonomia
I get dizzy and things become blurred
In context ↗ - Vision problems
During a flare up, they become super unstable and I get dizzy and things become blurred
In context ↗ - Heart symptoms & palpitations
I had heart palpitations (not normal for me)
In context ↗ - Anxiety & low mood
keeps my depression in check
In context ↗ - Temperature regulation
I am literally intolerant to the cold
In context ↗ - Muscle weakness
I even have trouble walking after sex because my legs become very shaky
In context ↗ - Flu-like symptoms
I was feverish (could have been CFS)
In context ↗