ME/CFS at 50% function, now somewhat better after sleep scheduling and diet
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 8 years
- Last post
- Jan 2015
In their words
- Condition: ME/CFS
Next month is 7 years since I got my viral-onset CFS.
In context ↗ - At worst: Mild
Never progressed to less than 50% functionality so I was able to continue school and later on work--barely.
In context ↗ - Now: Somewhat better
I realized I feel better than I have since getting sick. I still get crashes but my daily energy levels are a bit steadier
In context ↗ - Began after: another virus
viral-onset CFS
- Says they never had: POTS & dysautonomia
We did the POTS tests where your BP is checked upon lying, sitting & standing, and those were clear results too
Read from 14 of their posts and comments; links to the 10 this page draws on
Summary
Ocean 87221 developed viral-onset ME/CFS around 2007 and never fell below about 50% function, though school and work were barely manageable and they had a low point with frequent crying. Sleep scheduling, vitamins and a low-carb/Whole30 diet followed; by January 2015 they felt better than since onset and could exercise a little, but still crashed. Stopping Adderall caused withdrawal and worse brain fog before it improved.
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What they tried
Also tried
Their words about each treatment
- rigid scheduling · Helped
In 2011 I got my sleep back in order with some luck and rigid scheduling
In context ↗ - Adderall · Not said
getting off of Adderall, but it was worse before it got better
In context ↗ - loosely Paleo diet · Not said
I started on a loosely Paleo diet last year
In context ↗ - Whole30 · Helped
I went through 4 rounds of Whole30. Progress was gradual, but looking back at my logs last week I realized I feel better than I have since getting sick.
In context ↗ - Tapping · Helped
I just started this method called Tapping that focuses on acupressure ... but so far it's helped a little
In context ↗ - D-ribose · Helped
D-ribose (this is #1 priority and got me off Adderall)
In context ↗ - B-complex powder · Not said
B-complex powder designed for energy by a doc who wrote a book about CFS treatment
In context ↗ - blue-green algae · Not said
blue-green algae
In context ↗ - caffeine · Helped
getting off of caffeine completely helped a lot. I had none of it for 6 hard months.
In context ↗ - sleeping pills · Helped
1/2 a dose of some mild non-rx sleeping pill
In context ↗ - grapefruit seed extract · Not said
grapefruit seed extract
In context ↗ - low-carb · Helped
I've had some success with the Whole30 program, and even more with low-carb in general.
In context ↗ - Antibiotics (unspecified) · Not said
I had chronic candida infections after an idiot doctor put me on antibiotics for 2 years to clear up my acne.
In context ↗
Approaches: Diet · Other drugs and medicines · Supplements
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2007 | viral-onset ME/CFSNext month is 7 years since I got my viral-onset CFS.In context ↗ | Mild |
| end of 4th year | low point, sobbing in car and showerAt the end of the 4th I hit a low point--I was basically sobbing through half the time I spent in the car or the shower.In context ↗ | Mild |
| 2011 | sleep restored with rigid schedulingIn 2011 I got my sleep back in order with some luck and rigid schedulingIn context ↗ | Mild |
| 2012 | stopped Adderall; worse before betterMy first big effort to help myself was getting off of Adderall, but it was worse before it got better.In context ↗ | Mild |
| around 2013-2014 | huge crash led to workplace accommodationsOne huge crash changed thatIn context ↗ | Mild |
| 2014-02-18 | vitamin schedule, doctor, tests and diet overhaul; about 75% functionin 2013 I got onto a vitamin schedule ... I'd say I'm operating at 75%.In context ↗ | Mild |
| 2014-04-14 | started Whole30 and low-carb dietI've had some success with the Whole30 program, and even more with low-carb in general.In context ↗ | Mild |
| 2015-01-12 | better than since onset; still crashes and can exercise a littleI feel better than I have since getting sick. I still get crashes but my daily energy levels are a bit steadier, I can exercise a littleIn context ↗ | Mild |
Adverse events
- Amphetamine salts (Adderall)“getting off of Adderall, but it was worse before it got better ... the withdrawal was enough to take out a normal person WITHOUT M.E.” Withdrawal problems
- Antibiotics (unspecified)“I had chronic candida infections after an idiot doctor put me on antibiotics for 2 years to clear up my acne.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still get crashes but my daily energy levels are a bit steadier
In context ↗ - Brain fog
My brain fog was worse when I finally got off of it than it ever was beforehand.
In context ↗ - Sleep problems
My insomnia lasted through my first 4-ish years of illness.
In context ↗ - Anxiety & low mood
I was basically sobbing through half the time I spent in the car or the shower.
In context ↗ - Temperature regulation
my heat/cold intolerance is slightly better
In context ↗
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