ME/CFS
Outcome unclear
ME/CFS with pain and unbearable cognitive decline; several treatments tried
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- Not stated
- Last post
- Mar 2024
In their words
- Condition: ME/CFS
Not for my cfs.
In context ↗
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
Crocus 15675 described ME/CFS with pains and treatment-resistant depression. By 2022 they reported unbearable cognitive decline and memory loss, and a medication at 120 mg only somewhat helped their depression. Wellbutrin, they said, set off body-wide problems and a resting heart rate in the 180s; ivabradine (Corlanor) helped but it stayed in the 120s, and ECT left them feeling worse 2.5 years later.
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What they tried
Their words about each treatment
- abilify · No change
I have been on abilify maybe a decade ago or more for about a year? I don’t remember it doing anything to me.
In context ↗ - duloxetine (cymbalta) · Helped
Been on it for roughly 6 years. 120mg. Doesn’t help with any of my pains. Somewhat helps my depression
In context ↗ - ect · Much worse
I did for my treatment resistant depression and I’ve never felt worse 2.5 years out from my last session.
In context ↗ - Reglan · Much worse
Reglan is fucking terrifying and awful ... I had crawling out of my skin type reactions and slight TD type tics happening
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| — | ME/CFS onset (date not given)I’ve never taken anything specifically for my cfs so I can’t speak to thatIn context ↗ |
| — | Wellbutrin set off body-wide problems and a high resting heart rateWellbutrin was the catalyst to everything wrong with my bodyIn context ↗ |
| 2020 | ECT for depression; never felt worseI did for my treatment resistant depression and I’ve never felt worse 2.5 years out from my last session.In context ↗ |
| 2020-2021 | serious cognitive declineBut I have had a serious cognitive decline in the last year or two and it’s unbearable.In context ↗ |
| 2021-2022 | ivabradine finally covered by insurance and helpedIvabradine is a damn godsendIn context ↗ |
| 2024-03-30 | still on ivabradine with resting heart rate in the 120seven on corlanor now, is in the 120sIn context ↗ |
Adverse events
- Electroconvulsive therapy (ECT)“I did for my treatment resistant depression and I’ve never felt worse 2.5 years out from my last session.” In context ↗ Made symptoms worse
- Metoclopramide (Reglan, Maxolon)“I had crawling out of my skin type reactions and slight TD type tics happening and was able to get it added as my first medical allergy.” In context ↗ Side effects
- “Wellbutrin was the catalyst to everything wrong with my body and the reason my resting heart rate, even on corlanor now, is in the 120s (180s Unmedicated)” In context ↗ Heart rhythm problems
Symptoms mentioned
Their words about their symptoms
- Brain fog
Can’t remember conversations I had half a day ago, can’t keep up with plots in tv and movies
In context ↗ - Pain & fibromyalgia
Doesn’t help with any of my pains.
In context ↗ - Anxiety & low mood
Somewhat helps my depression but I’m med resistant so not much.
In context ↗ - Heart symptoms & palpitations
my resting heart rate, even on corlanor now, is in the 120s (180s Unmedicated)
In context ↗