Sleeping for the first time in 20 years! Quetiapine for Fibromyalgia and Chronic Insomnia

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Last Updated on January 7, 2023 by melissanreynolds

It’s finally time to share about quetiapine for fibromyalgia, CFS and chronic insomnia. All three of which I’ve battled for more than 15 years.

the medicine that helps me with chronic insomnia. person sleeping in bed.

Spoiler alert: I am NOW SLEEPING MOST OF THE TIME. That deserves all caps. Let’s dig in…

Insomnia in fibromyalgia and CFS is a serious issue. Quetiapine is the medicine that finally enabled me to get some deep sleep.

In this post I’ll share my history with insomnia (long), the experiment with quetiapine, and then the information about what it is.

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My History of Insomnia

I’ve experienced around 20 years of consistent sleep issues. Every time I met a new doctor I’ve told them how terribly I sleep. They’d throw me on amitriptyline or ask me to increase the dose. Despite it clearly not helping.

In 2022, I explained to my new doctor exactly how I sleep. That despite excellent sleep hygiene practices (I know all the things), it took ages to get to sleep, I woke frequently, and slept poorly. I never woke feeling refreshed. I rarely achieved even the bottom of the ranges of normal percentages for deep sleep in a night. In a word – poorly.

This was after the low dose naltrexone helped improve the pain and I no longer spent hours awake across the night in too much pain to be able to continue lying down and be shocked out of bed in the morning with a migraine and nausea.

She said, straight up, that that level of sleep issue was a medical emergency.

I felt heard. At last.

quetiapine and fibromyalgia. sleep mask on a bed

My Quetiapine for Fibromyalgia Experiment

She asked me to try 12.5mg of quetiapine for four nights to see if it would reset my sleep.

For two nights I slept well, then poorly. So I stopped on the fifth night and slept terribly. On the sixth night I tried again and slept well again! By the time our follow up rolled around the next month I had found a pattern of two days on (with good sleep) and then two days off (with poor sleep).

We agreed that I’d trial 25mg every night.

What a wonderful experience to finally sleep. Most nights I get the normal range of REM and deep sleep! After 20 years!

I have been quietly ecstatic, without wanting to jinx it. For a while I was nervous that it would suddenly stop working.

But the fact that I don’t rely solely on it may be helping.

I take the quetiapine around 8.45pm. Recovery Factors and low dose naltrexone around 9.15pm. Hop into bed about 9.30pm. Read for a while. Do a body scan meditation. And drop right off to sleep.

What Life is Like on Quetiapine

I also don’t pee all night anymore! I may go once. But often not at all. This is big. Huge.

Some mornings I wake naturally at 6.30am, because I’ve had enough sleep.

Let’s be clear here – there are bad nights. It still takes me a while to shake off sleep in the morning. And I still need my yoga nidra rest after lunch. I also still have impeccable sleep hygiene. This is not a stand alone intervention. But rather the final piece that enables me to achieve deep sleep.

I still have chronic fatigue syndrome.

But life is so much better with sleep.

If you haven’t experienced 20 years of EVERY SINGLE NIGHT not sleeping well, you will never understand. Sleep changes everything.

sleeping for the first time in 20 years. woman asleep on a bed

Quetiapine for Fibromyalgia Information

So let’s talk about quetiapine. It’s an antipsychotic, known as an atypical antipsychotic, that is prescribed “off label” (outside of usual use) to help with insomnia. It’s usually prescribed at around 25mg for sleep. When functioning as an antipsychotic it is taken in much higher doses.

One Google search and you’ll find a scary list of potential side effects. However there’s a scary list of side effects of extreme sleep deprivation!

We must always do our research, discuss with our doctors and make an informed cost vs benefit analysis.

Quetiapine is mentioned in Dr Liptan’s The FibroManual (2016) and Dr Valling’s Chronic Fatigue Syndrome ME: Symptoms, Diagnosis, Management (2021) for sleep. So there’s a history of its use for fibromyalgia and chronic fatigue syndrome.

There is also some research about the use of quetiapine for pain management happening:

“AAs [atypical antipsychotics] likely help reduce central sensitization as well, particularly in brain-based pain processing areas such as paralimbic structures.”
https://www.clinicalpainadvisor.com/chronic-pain/atypical-antipsychotics-as-adjuncts-in-chronic-pain-management-how-effective-are-they/

This follows my theory that it is quieting my central nervous system enough to be able to relax into deep sleep. That I no longer “sleep with one eye open” so to speak.

If you want to research it, I highly recommend reading the above books. And doing a simple Google search before talking with your doctor.

Have you tried quetiapine for fibromyalgia or chronic insomnia? What was your experience?

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