ME/CFS
Severe → no benefitIll for 23 yearsNeeds ongoing treatment
ME/CFS exhaustion preventing work for 23 years, no benefit from Provigil
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 23 years
- Last post
- Mar 2018
In their words
- Condition: ME/CFS
I've not been formally diagnosed with CFS but have been battling chronic fatigue of some sort since age 12.
In context ↗ - At worst: Severe
Without taking a stimulant daily I would not be able to leave my bed.
In context ↗ - Now: No benefit
have been battling chronic fatigue of some sort since age 12. Without taking a stimulant daily I would not be able to leave my bed.
In context ↗ - Began after: another virus
12 was a rough year in which I got my first period & my first bout of influenza, after which I never quite recovered.
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Her chronic fatigue dated to age 12-13, after her first period and first influenza, and had lasted 23 years by 2017. She was never formally diagnosed with CFS and described cyclic exhaustion preventing work, dating or a normal life, plus insomnia, chronic migraine, IBS and GERD. Daily stimulants, Adderall preferred, let her leave her bed; Provigil did not help. She felt better in a desert climate than back in Oklahoma.
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What they tried
Also tried
oral antihistamines (Benadryl)· HelpedFlonase· Helpedhormonal birth control· Helpedstimulant (Adderall, Vyvanse, Dexedrine, Ritalin)· Helpedstimulant (Adderall, Vyvanse, Dexedrine, Ritalin)· Helpedstimulant (Adderall, Vyvanse, Dexedrine, Ritalin)· Helpedstimulant (Adderall, Vyvanse, Dexedrine, Ritalin)· Helpedbalanced smaller meals, fewer pure carbs· Helpedgluten elimination· No changeprobiotics· WorseProvigil· Worse
Their words about each treatment
- oral antihistamines (Benadryl) · Helped
I take Flonase & oral antihistamines nightly (to sleep) ... I'll take a sedating antihistamine like Benadryl to sleep
- Flonase · Helped
I take Flonase & oral antihistamines nightly (to sleep) so my allergies should be well under control.
In context ↗ - hormonal birth control · Helped
it gets noticeably WORSE when I go off my hormonal birth control for any length of time
In context ↗ - probiotics · Worse
it gets noticeably WORSE when I go off my hormonal birth control for any length of time or take probiotics.
In context ↗ - stimulant (Adderall, Vyvanse, Dexedrine, Ritalin) · Helped
Without taking a stimulant daily I would not be able to leave my bed.
In context ↗ - Provigil · Worse
Provigil doesn't lift the fatigue at all; it just prevents me from sleeping which is even worse.
In context ↗ - gluten elimination · No change
As for gluten, I never found that it was a particular problem for me.
In context ↗ - balanced smaller meals, fewer pure carbs · Helped
I definitely feel less exhausted after eating a balanced meal than pure carbs.
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 20 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 13 (1994) | chronic fatigue began after influenza and first periodEver since I was 13 I've been dealing with chronic fatigue.In context ↗ | Not stated |
| a few years before 2017 | on a stimulant could exercise dailyWhen I was taking a stimulant a few years ago I could exercise daily in the gym with no repercussions aside from muscle soreness.In context ↗ | Mild |
| 2017-12 | month-long attack of exhaustion, sleeping 13 hours plus napsI can sleep 13 hours & still need a nap around 6 p.m. on bad days.In context ↗ | Moderate |
| 2018-03-10 | still needed a daily stimulant to get out of bedWithout taking a stimulant daily I would not be able to leave my bed.In context ↗ | Severe |
Adverse events
- Modafinil / armodafinil“Provigil doesn't lift the fatigue at all; it just prevents me from sleeping which is even worse.” In context ↗ Insomnia from treatment
- Probiotics and fermented foods“it gets noticeably WORSE when I go off my hormonal birth control for any length of time or take probiotics” In context ↗ Made symptoms worse
- Diphenhydramine (Benadryl)“There's definitely a hangover effect, but without it I just lie awake all night.” In context ↗ Side effects
- Amphetamine salts (Adderall), Lisdexamfetamine (Vyvanse, Elvanse), Dexamfetamine (Dexedrine), Methylphenidate (Ritalin, Concerta)“Ritalin is too jittery for my taste but some people prefer it.” In context ↗ Side effects
Symptoms mentioned
Gut problemsHeadaches & migraineMast cell (MCAS) & allergiesMuscle weaknessPain & fibromyalgiaSleep problems
Their words about their symptoms
- Sleep problems
I've had insomnia since I had a bedtime in kindergarten
In context ↗ - Headaches & migraine
I also have GERD, chronic migraine & IBS
In context ↗ - Mast cell (MCAS) & allergies
I take Flonase & oral antihistamines nightly (to sleep) so my allergies should be well under control.
In context ↗ - Muscle weakness
exhausted & weak all the time
In context ↗ - Pain & fibromyalgia
I was told I had arthritis in my knee when I was 10 years old
In context ↗