Decades of ME/CFS crashes and severe bouts, now much better with hydroxychloroquine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 30 years
- Last post
- Jun 2024
In their words
- Condition: ME/CFS
I was diagnosed with CFS 30 years ago (!)
In context ↗ - At worst: Severe
I was diagnosed in my early 20s and had off and on bouts of severe illness for a number of years.
In context ↗ - Now: Much better
I can lead a fairly normal life (within the accommodations I've made.)
In context ↗ - Began after: nothing they could name
It manifested as slow decline, then periods of awful crashes and then recovery, sometimes lasting years.
Read from 19 of their posts and comments; links to the 12 this page draws on
Summary
Diagnosed with CFS in their early 20s around 1993, they had a slow decline and decades of awful crashes that came and went, with bouts of severe illness. Hydroxychloroquine, prescribed for Sjögren's, took them out of a major crash after six months. By 2023 the CFS was quiet and they could do a lot and hold a good career, though cardio still caused crashes; in 2024 they said their health had been mostly good for eight years.
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What they tried
What they credit
Also tried
Their words about each treatment
- Wellbutrin · Helped
I could not make it without my Wellbutrin; I need it to stop feeling sad and bleak.
In context ↗ - fasting · Worse
my own experience (with another postviral syndrome) is that fasting leads to crashing
In context ↗ - eliminating foods for histamine intolerance · No change
I had a bad histamine intolerance for a few years and had to eliminate several things--I was so hoping it would help but it did nothing.
In context ↗ - cardio exercise program · Much worse
every time I start a cardio exercise program I have a severe crash
In context ↗ - Plaquenil · Helped a lot
it took over 6 mos to work ... It did take me out of a major crash.
In context ↗ - Trazodone · Helped
I take Trazadone for sleep which has helped me a good deal.
In context ↗ - Florinef · Helped a lot
Florinef has been life changing for me.
In context ↗ - Biotène products · Helped
Biotène products work really well. ... The gel in particular helps me.
In context ↗ - Extended water fasting (3+ days) · Worse
my own experience (with another postviral syndrome) is that fasting leads to crashing.
In context ↗
Approaches: POTS medication · 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 first step with a time is 30 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 | After |
|---|---|---|---|
| around 1993 (early 20s) | CFS onset, slow declineI was diagnosed with CFS 30 years ago (!). It manifested as slow decline, then periods of awful crashes and then recovery, sometimes lasting years.In context ↗ | Not stated | |
| before 2023 | major crashIt did take me out of a major crash.In context ↗ | Severe | |
| 2023 | taken out of the major crash after six months on Plaquenilit took over 6 mos to work ... It did take me out of a major crash.In context ↗ | Moderate | Hydroxychloroquine / Plaquenil |
| June 2023 | CFS quiet, good career, no severe crash in yearsThe CFS stuff is still there, but it’s quiet, so I can do a lot of things and I have a good career.In context ↗ | Mild | |
| 2024-06-29 | health mostly good for the last eight yearsmy health has been mostly pretty good for the last eight years; I’ve been very luckyIn context ↗ | Mild |
Adverse events
- Bupropion (Wellbutrin)“the clinic I was in took me off my antidepressants (Wellbutrin) for that reason and it was a nightmare.” In context ↗ Withdrawal problems
- Extended water fasting (3+ days)“my own experience (with another postviral syndrome) is that fasting leads to crashing.” In context ↗ Made symptoms worse
- Cardio / aerobic exercise“I know if I start an exercise program I'll crash for four months” In context ↗ Made symptoms worse
- Cardio / aerobic exercise“every time I start a cardio exercise program I have a severe crash.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I know if I start an exercise program I'll crash for four months
In context ↗ - POTS & dysautonomia
I have orthostatic hypotension but I believe the theory is the same.
In context ↗ - Mast cell (MCAS) & allergies
I had a bad histamine intolerance for a few years and had to eliminate several things
In context ↗ - Sleep problems
I take Trazadone for sleep which has helped me a good deal.
In context ↗ - Anxiety & low mood
I could not make it without my Wellbutrin; I need it to stop feeling sad and bleak.
In context ↗
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