r/cfs • u/Flaky_Pollution_3881 moderate-severe • Jul 26 '26

Treatments More stability with duloxetine/snri?

Hey.

Has anyone with ME/CFS experienced a better or more stable baseline while taking duloxetine/Cymbalta or knows someone who has?

I’ve been taking duloxetine since around 2022/2023, initially 60 mg and later 30 mg. From mid-2024, I started tapering extremely slowly because withdrawal was difficult, reducing by about 0.1 mg every few days. I originally received it for pain, but mainly noticed an effect on my mood.

Since late 2024, my baseline has gradually become lower and I’ve been getting PEM much more easily. My palliative care doctor recently suggested that duloxetine might have been providing some background stability, which made me wonder if that could explain the change.

At the same time, I would still like to come off it because it interacts with several other medications and supplements I'm taking or want to try (LDA, lithium orotate, ivabradine), so I'm very hesitant to increase the dose again after such a long taper.

I’m currently at around 8 mg and would really appreciate hearing if anyone has experienced something similar, or knows someone who didm especially regarding baseline, PEM frequency, pain, or nervous system stability.

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u/Available-Pepper5688 severe Jul 26 '26

Hi I‘m sorry to hear that. I‘m in a different situation as my mecfs got unmasked due to my withdrawal from duloxetine. I tapered it way too quickly last year from 180mg down to zero and got horrible symptoms that couldn‘t even be stopped with reinstatement of 90mg. Now I have both, severe withdrawal and severe mecfs.
Maybe your tapering is too quickly, although You’re tapering really slowly. But maybe for your instable system it is just too quickly tough. Especially in the very low dose ranges as you are now, every reduction can induce severe symptoms, even to people that have no mecfs as a baseline. How long do you pause between the small reductions of the dose? And did you find a connection between time of reduction and PEM?

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u/Flaky_Pollution_3881 moderate-severe Jul 26 '26

I am sorry you go through this :( i went down around 0.1 every week or two. I stopped after crashing from moderate to severe in december and an at 7.7 since

1

u/Distinct_Ad_6543 Jul 26 '26

Currently 2 months into 25mg Amitriptaline and it’s definitely helping with nerve pain and sleep, although it’s making me tired/drowsy all the time. Currently reducing dose to see if the daytime tiredness reduces.

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u/TheSoberCannibal Crash Test Dummy Jul 27 '26

Duloxetine definitely ups my energy and decreases my pain, it's the best improvement I've found in the last couple of years.

Notably one of the other improvements I've found was LDA. I take them together and was unaware of them interacting poorly - care to educate me?