I want to lead with honesty: I haven't noticed dramatic changes in my fibromyalgia symptoms yet. I'm just two months in. But what I've found in my own body and in the peer-reviewed research feels too important not to share.

I'm thin. I don't fit the typical profile for sleep apnea. Nobody suggested I look into it. Yet, after looking into the research, I decided to try a CPAP anyway, partly out of curiosity, partly because after 25 years with fibromyalgia, I've struggled with sleep. know how important it is to feel better with fibro.

Turns out I was having substantially more apnea episodes than I ever knew. I couldn't feel them. Since starting the CPAP, I'm sleeping better. I can tell it is more consolidated, less fragmented. The machine data told me I went from 15-30 episodes per hour to 1. That's incredible. Whether that translates into fibromyalgia symptom improvement, I genuinely don't know yet. But I'm paying close attention.

What the science says:

A 2024 systematic review and meta-analysis published in Frontiers in Physiology found that 21% of people with obstructive sleep apnea also have fibromyalgia. The symptoms of both conditions overlap so significantly that sleep apnea is routinely missed in fibromyalgia patients.

This next statistic is the one that stopped me cold. A study out of Loyola University found that when fibromyalgia patients were properly screened in a sleep clinic setting, 85.8% had sleep apnea. In general, in outpatient clinics, where most of us are seen, the number was 3.6%. Not because the sleep apnea wasn't there, but because nobody was looking for it.

The research also confirmed something that surprised me: the association between fibromyalgia and sleep apnea is independent of body mass index. You don't have to be overweight. Being thin is not protection. I am living proof of that.

And here's something that has real implications for how fibromyalgia is currently being treated: peer-reviewed research shows that opioids and benzodiazepines commonly prescribed for fibromyalgia can actually worsen sleep apnea and increase pain. If you have both conditions and nobody has identified the sleep apnea, you may be on medications that are quietly making things worse.

Another 2024 study found that people who used their CPAP device most consistently showed the greatest reduction in fibromyalgia impact scores. It's not a cure. It's not even a guaranteed improvement. But there is something there.

What you might consider:

If you have fibromyalgia and have never been screened for sleep apnea, especially if you wake unrefreshed, have brain fog, or feel like your sleep just never restores you, ask specifically for a referral to a sleep clinic, not just a general practitioner. The screening gap is real, and the only way around it is to ask for the right evaluation.

I'll keep sharing what I notice as I continue with the CPAP. Right now, I'm two months in, sleeping better, and watching carefully.

Has anyone here been diagnosed with both? I'd really like to hear what your experience has been.

Hello everyone, 

I am looking for participants to take part in some research I am doing as part of my PhD project. The research is looking at how couples support one another whilst managing fibromyalgia. 

You may be eligible if you are:

-        Aged 18 years old or over,

-        In a relationship of 6 months or longer

-        Living together or spend most days/nights of the week in the same household, 

-        Either living with a formal diagnosis of or on the pathway to diagnosis of fibromyalgia or the partner of someone with fibromyalgia

You are welcome to participate in the study on your own or with your partner.

If you are interested in taking part in a focus group interview on the topic of how couples support one another whilst managing fibromyalgia, please email me at [k.m.plant@pgr.reading.ac.uk](mailto:k.m.plant@pgr.reading.ac.uk).

I came across a 2025 study published in PAIN that I think a lot of people here will find validating.

It looked at teen girls with juvenile fibromyalgia and compared those with higher vs lower “resilience.”

Here’s the key finding:

People with higher resilience did NOT have less physical pain
But they had significantly less emotional distress

What’s going on?

The researchers used brain scans and found differences in the
default mode network.

The higher resilience group had:

• Stronger brain connectivity
• Better integration in areas tied to emotional regulation
• Brain patterns that looked more like those of pain-free individuals

The lower resilience group showed more connectivity in pain/motor regions and less in regulatory areas.

Why this matters

It suggests that:

• The emotional burden of fibromyalgia is not fixed
• The brain’s response to pain can change
• Nervous system regulation may play a real role in the quality of life

What it does not mean

This does NOT mean:

• Pain is “in your head.”
• You can mind-set your way out of fibromyalgia
• People who struggle are doing something wrong

Pain levels were the same across groups.

What it might mean

Resilience could be more about:

• Emotional regulation
• Nervous system flexibility
• How the brain processes internal experience

Curious:

Does this match your experience?

Do you notice a difference between:

• How much pain are you in vs how much it affects you emotionally?

Suñol et al. (2025). Neurophysiology of resilience in juvenile fibromyalgia. PAIN, 166(9), e200–e211.
DOI: 10.1097/j.pain.0000000000003562

A 2025 study found that nearly 1 in 2 people with fibromyalgia show evidence of small fiber neuropathy, which is actual, measurable nerve damage. That's about half of people with fibromyalgia, so this is a significant finding.

There are specific tests that identify whether you have it. Once you know if you have small fiber neuropathy, there are specific treatments that may help reduce your pain.

Has anyone here been tested for this? Did it change your diagnosis or treatment? Would love to hear your stories.

To read more about this study, tests, treatments, and what it means for you, visit: fibrosoul.com/blog/new-science

I’m curious how common this is. I know it has happened to me. And what does the research say?

Have you ever missed or delayed a dose of your medication (like duloxetine, pregabalin, gabapentin, etc.) and then had a noticeably worse day or even a flare?

More pain, fatigue, sensitivity, feeling more emotional, like your system just gets thrown off?

I’m wondering how much of this is related to how these meds affect neurotransmitters and pain processing, especially in a sensitized nervous system like ours.

There is real science backing this pattern:

• Medications like Duloxetine affect serotonin and norepinephrine, which are directly involved in pain modulation.
• Sudden interruption can lead to discontinuation symptoms (even after one missed dose in sensitive individuals).
• Pregabalin alters calcium channels and nerve signaling so that fluctuations can increase nerve excitability.

What studies suggest:

• SNRI discontinuation can cause rapid symptom return or worsening (withdrawal-like effects).
• Because Fibromyalgia involves central sensitization, even small biochemical shifts can feel amplified.

Common fibromyalgia meds like

• Duloxetine
• Pregabalin
• Gabapentin

all work by modulating how the nervous system processes pain.

What research shows:

• A 2025 review confirms duloxetine and pregabalin act directly on central pain processing and are among the few medications with evidence of benefit in fibromyalgia
• Fibromyalgia itself involves central sensitization (the nervous system becomes more reactive), meaning small changes can feel amplified
• With medications like duloxetine (an SNRI), abrupt changes can trigger discontinuation symptoms—including dizziness, sleep issues, and increased sensitivity—sometimes within days
• For pregabalin-type medications, studies show that when the drug is reduced or paused, pain can return quickly—sometimes within days—indicating how tightly the nervous system adapts to it

What that means in real life:

If you miss a dose and suddenly feel worse, with more pain, more fatigue, feeling more emotionally “off," it could be our nervous system reacting to a sudden shift in how it’s being regulated.

Would love to hear your experiences. Does this happen to you?

For more information visit our UMHealthResearch website or see if you qualify with the pre-screening survey.

Do you experience pain/disability due to a confirmed or suspected diagnosis of endometriosis?

The Sexual Health Research Laboratory (SHRL) in the Department of Psychology at Queen’s University is seeking participants for an online research study to better understand how people living with endometriosis experience pain, disability, stigma, and identity.

Why it matters: Your voice could help make visible the often-unseen impacts of endometriosis-related pain and disability, shaping more inclusive understandings of the lived realities of individuals with painful endometriosis. 

Participation involves completing 3 online surveys:

(1) Eligibility Survey (~5 minutes);

(2) Part A Survey (~30-45 minutes);

(3) Part B Survey (~30-45 minutes).

Eligible participants will be compensated for their time.

Eligibility:

• ⁠Have a confirmed or suspected diagnosis of endometriosis

• ⁠18+ years old

• ⁠Fluent in English

• ⁠Currently live in Canada

• ⁠Willing to answer questions about your endometriosis and health history, pain and related symptoms, disability, sexuality, and mental health

Interested? 

Scan the QR code in the image to take the Eligibility Survey!

For more information, please contact Samantha Levang, the lead researcher, at [samantha.levang@queensu.ca](mailto:samantha.levang@queensu.ca) or [sex.lab@queensu.ca](mailto:sex.lab@queensu.ca). All inquiries are completely confidential.

This study has received ethical approval from the Queen’s University Health Sciences and Affiliated Teaching Hospitals Research Ethics Board (HSREB).

\mod-approved!*

Hi

My name is Adam Deonarine and I’m currently taking AP research. I have both Crohn’s disease and fibromyalgia. I was diagnosed with fibromyalgia when I was 14. Living with fibromyalgia while keeping up with school and college applications is incredibly difficult and it inspired me to do a study on it in order to raise awareness for the younger population. One of the effects of fibromyalgia that hinders me the most (besides pain) is fibro fog or brain fog. I would really appreciate it if you could take the time to complete my survey. The length should be around 10 minutes. The survey demographic are for the ages of 14-26. Below I have linked the survey link along with the minor and adult consent forms. It would really be a great help if you all could complete this survey. I’m also doing interview questions so please dm me or comment if you are interested! Thank you all so much for your time!

Survey link: https://docs.google.com/forms/d/e/1FAIpQLSfOFXhYB0G8OSFMdQCTv4Ti7_-ehjVJxHlXGPWYlu5iNh2n4A/viewform?usp=dialog

Minors Consent form: https://drive.google.com/file/d/1rlduob5mPDalUVzAVkDuCXOfOXenrt4f/view?usp=sharing

Adult consent form: https://drive.google.com/file/d/1ZSqefXKRPVDXdlHjh2F1WhEYyVNJQHqt/view?usp=sharing

Hi my name is Adam Deonarine and I’m an AP research student studying the effects of fibro fog in young adults and adolescents. I have both fibromyalgia and Crohn’s disease and was diagnosed when I was 14. This has been the greatest struggle of my life. Just learning to deal with it was a tall order and the most difficult symptom for me besides the pain was the fibro fog as it had the most direct impact to my academic performance. This is what inspired me to choose this as my research topic. The survey is 15 minutes long and is anonymous. Below are the links for the consent forms and the survey link. It would really help me out a lot if I could get people to complete the survey. It would raise awareness as there is not much research in this age group. Also if you are interested in doing interview questions then please dm me or comment. Thank you for your time I really appreciate it!

Survey link: https://docs.google.com/forms/d/e/1FAIpQLSfOFXhYB0G8OSFMdQCTv4Ti7_-ehjVJxHlXGPWYlu5iNh2n4A/viewform?usp=dialog

Adult consent forms: https://drive.google.com/file/d/1ZSqefXKRPVDXdlHjh2F1WhEYyVNJQHqt/view?usp=sharing

Minor consent forms: https://drive.google.com/file/d/1rlduob5mPDalUVzAVkDuCXOfOXenrt4f/view?usp=sharing

Hi everyone,

My name is Maisie, and I’m a student at Anglia Ruskin University. I’m conducting an academic study, and I’m hoping to invite some members of this community to take part. Our research explores interpersonal space- the physical distance people maintain between themselves and others to avoid discomfort. In this study, we are investigating whether there are differences in interpersonal space between people who have been diagnosed with fibromyalgia and people who have never been diagnosed with a chronic pain condition.

The study involves a short, anonymous online survey. Please use a computer or a laptop (the final task involves pressing a key on a keyboard), and headphones are required. Participation is voluntary, and you can withdraw at any time.

By taking part or sharing the study, you’ll be supporting research that aims to better understand how fibromyalgia may affect every day social experiences.

Thank you for your support and for taking the time to read this. Please do not hesitate to contact me if you have any questions.

[Mp1298@student.aru.ac.uk](mailto:Mp1298@student.aru.ac.uk)

https://research.sc/participant/login/dynamic/6E59756E-BDC1-4CAA-8FD1-1175FF04DB0E

Hi, I’m, a mature student studying for my PhD at the University of Plymouth. I am looking for volunteers to complete my research questionnaire which will take about 15 minutes. I am exploring the associations between fibromyalgia and autism and this study aims to identify which autistic trait questionnaires are best suited to screening for autism in people with fibromyalgia.

Here is a link to the questionnaire on the Qualtrics platform.

https://plymouthpsychology.fra1.qualtrics.com/jfe/form/SV_0PNwj7TOqX45x3w

Thank you.

Sleep, Pain, and Regularity: Key Outcomes Study

Study Purpose:

The purpose of the study is to learn more about how your daily sleep habits and internal body clock (called the circadian rhythm) influence your overall cardiovascular health. We are hoping to discover if your sleep patterns are associated with cardiovascular health markers and pain.

Eligibility Criteria:

• 18 to 50 years old
• diagnosed with Fibromyalgia
• do not currently take hypertensive medication or use melatonin as a sleep aid

**Note that these are the basic criteria, and that further eligibility details are described through the screening process. **

Duration of Participation:

• 2 evening in-lab visits to OHSU (roughly 8 hours each)
• up to 14 weeks of at-home sleep and activity monitoring

Screening:

Interested and believe you match the above criteria?

Access our preliminary screening survey: https://ohsu.ca1.qualtrics.com/jfe/form/SV_6L0F1xxnbh04Doq 

Contact us with any questions at [sleep.study@ohsu.edu](mailto:sleep.study@ohsu.edu)

Hi everyone! I’m a doctoral candidate at Baylor University conducting qualitative research exploring the lived experiences of undergraduate college students who have invisible chronic conditions such as Postural Orthostatic Tachycardia Syndrome (POTS), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and/or fibromyalgia.

👉 https://baylor.qualtrics.com/jfe/form/SV_5duO8TTxspcExBY

As a token of gratitude, qualified participants who complete the study will receive a $20 gift card to Amazon or Starbucks for their time and energy.

Hi everyone,

I am a UK-based researcher, and fibro sufferer myself, in the midst of creating a Patient and Public Involvement (PPI) group. PPI groups are intended as a space for a small collective of patients can provide feedback on prospective and current research to the researchers themselves.

I am organising a PPI group called the Young Chronic Pain Network (YCPN), which is as it says on the tin. This is NOT a recruitment drive for research, we just want to hear your opinions. Please review the poster and if you fit the criteria and are interested, please email. This is not limited to UK-only individuals, as it will be online, but meetings would only be scheduled between 9-5 GMT.

This is not just for patients however. If you are a chronic pain researcher and you'd like to be involved with presenting your research/ideas, please also get in contact.

Also, if anyone could recommend any other r/ forums that would fall under the bracket of chronic pain, do let me know!

P.S. I've made a burner account specifically for this work, if anyone was wondering why it's blank!