Sudden ME/CFS with fatigue and brain fog, improved then relapsed; acyclovir eases symptoms
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- 9 years
- Last post
- Feb 2018
In their words
- Condition: ME/CFS
i do have physical PEM, yeah
In context ↗ - Now: Relapsed
i got a significant improvement about 2 years in, but it was temporary ... i'm now 30 with significantly worse symptoms than when they first showed up
Read from 11 of their posts and comments; links to the 8 this page draws on
Summary
They fell ill suddenly at 21 with extreme fatigue, brain fog and physical post-exertional malaise. About two years in they improved dramatically, to almost 90% of normal, but it lasted only six to ten months; a milder lull came a few years later. At 30 they are significantly worse than at onset, unable to write for 25 minutes, with bad insomnia. Acyclovir and amantadine make their symptoms less severe but do not remove them.
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What they tried
What they credit
Also tried
Their words about each treatment
- coffee · Helped
for energy i just drink coffee, but i have to limit myself to about three times a week
In context ↗ - meditation · Helped
after the work is over i'll meditate
In context ↗ - marijuana · Helped
have some marijuana. in my experience the less time i spend stressed out the less powerful the reaction to that stress
In context ↗ - ritalin · Worse
i had a pretty bad reaction to ritalin as a kid (i also have ADD)
In context ↗ - dexedrine · Worse
tried adderall and dexedrine more recently; both caused severe crashes and ensuing PEM
In context ↗ - nuvigil · Worse
stronger stimulants (i've been prescribed dexedrine, adderall, and nuvigil) seem to have a very strong crash effect after a few hours, which leaves me weaker than i'd have been without taking them
In context ↗ - acyclovir · Helped
the meds that have helped me are acyclovir and amantadine. neither removes my symptoms but both make them significantly less severe
In context ↗ - dark chocolate · No change
i haven't noticed an effect with dark chocolate but maybe i'll try again
In context ↗ - ivig · Helped
i get way less frequent sinus infections with ivig, which is really nice, so i'd recommend giving it a shot
In context ↗
Approaches: Antivirals · Other drugs and medicines
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 2 years after onset: the story doesn’t say how ill they were before that. 1 step has no time and sits in story order between the steps around it. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| age 21 | symptoms began suddenly during a stressful timei was 21 when symptoms first startedIn context ↗ | Not stated |
| age 22 | dramatic improvement to almost 90% of normal, building over a few weeksi could tell i wasn't 100% better but i felt almost 90% of the way thereIn context ↗ | Near normal |
| age 22 | improvement ended and symptoms came backi got a significant improvement about 2 years in, but it was temporary ... 22 when they improved and when they came back | Not stated |
| a few years later | another period of relative ablebodiedness, more of a lull than a recoveryi had another period of relative ablebodiedness a few years later but it was much less dramatic, more of a lull than a recoveryIn context ↗ | Mild |
| 2018 | significantly worse than at onset, limited to about 20 minutes of mental worki'm now 30 with significantly worse symptoms than when they first showed upIn context ↗ | Moderate |
Adverse events
- Dexamfetamine (Dexedrine), Amphetamine salts (Adderall)“stronger stimulants (i've been prescribed dexedrine, adderall, and nuvigil) seem to have a very strong crash effect after a few hours, which leaves me weaker than i'd have been without taking them” In context ↗ Made symptoms worse
- Methylphenidate (Ritalin, Concerta)“i had a pretty bad reaction to ritalin as a kid (i also have ADD)” In context ↗ Side effects
- Dexamfetamine (Dexedrine), Amphetamine salts (Adderall)“tried adderall and dexedrine more recently; both caused severe crashes and ensuing PEM, unfortunately” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
i do have physical PEM, yeah
In context ↗ - Muscle weakness
negative effects for me are severe brain fog, extreme weakness and fatigue
In context ↗ - Sleep problems
i can't nap, got real bad insomnia
In context ↗ - Pain & fibromyalgia
when i suddenly developed gout i found it wasn't effective for pain since i'd built up a tolerance
In context ↗
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