Exploring the Relationship Between Sleep, Stress, and Physical Functioning in Individuals with Fibromyalgia: A Patient-Reported Survey Study

By Nishant Narayanan – Lead Author

With Special Thanks to Ms. Necie Edwards – CEO of Fibromyalgia Patient Education & Support

1. Abstract:

Fibromyalgia is a long-term condition that causes chronic full-body pain and is often accompanied by non-restorative sleep and high psychological stress. Many individuals with Fibromyalgia report difficulties obtaining adequate clinical support, highlighting gaps in symptom management and care delivery. The interaction between these factors may intensify symptom severity and reduce quality of life. 

This exploratory survey examined the relationships between self-reported sleep duration, perceived stress, and physical functioning among individuals with Fibromyalgia, using a patient-driven approach that reflects real-world experiences, conceptually aligned with the Pittsburgh Sleep Quality Index (PSQI), Perceived Stress Scale (PSS), and Fibromyalgia Impact Questionnaire (FIQ) frameworks. Although prior studies have examined sleep, stress, and functioning in clinical settings, fewer have explored these domains using patient-generated real-world data. 

The objective of this study was to evaluate sleep duration, perceived stress, and physical functioning among individuals with clinically diagnosed Fibromyalgia, and to compare these patterns conceptually with established survey instruments. Through a combination of Fibromyalgia support groups and in-person interviews, this study  gathered data on real-world patient experiences related to physical activity, stress, and sleep in a community-based, patient-centered context. 

Fifty two respondents completed an online survey posted in Fibromyalgia support groups. Participants averaged 5.56 ± 1.9 hours of sleep per night, a perceived stress level of 7.10 ± 2.17 (0–10 scale), and a physical-ability rating of 4.44 ± 1.86. Correlation analysis revealed a modest negative association between sleep hours and stress (r = –0.10) and a weak positive association between sleep and physical ability (r = 0.29). Those sleeping < 6 hours reported higher stress (7.38) and lower ability (4.08) than those sleeping ≥ 6 hours (stress = 6.74; ability = 4.83). Qualitative responses highlighted pain, fatigue, and emotional distress as leading causes of poor sleep. 

These findings underscore the interdependence of sleep and stress in Fibromyalgia and the importance of addressing both physiological and psychosocial dimensions in treatment. While the conclusion did support the hypothesis of the study that showed a negative trend in abilities correlated with their ratings, there are also further limitations in the study that should be taken into account for future research.

1. Introduction:

Fibromyalgia is a long-term condition that causes full-body pain, affects an estimated 2-4 % of adults and is characterized by widespread musculoskeletal pain, fatigue, and cognitive impairment. While the pain itself hinders the ability for everyday actions like walking or opening jars, Fibromyalgia has been speculated to also cause issues with sleep and stress. Although validated tools such as the PSQI, PSS, and FIQ have clarified each domain individually, few studies have captured these experiences directly from patients in community settings.

For many patients, symptoms occur after a triggering event. This can be due to injuries, surgeries, infections or general stress. Interviews with patients suggest that many experience substantial barriers to adequate care.  Many respondents from Fibromyalgia support groups highlight severe disparities in medical access, limited guidance on coping strategies as well as many firsthand struggles on a day-to-day basis that are unaccounted for. These patients do not receive the medical care, counselling or support to manage their health and quality of life. Hence, these communities provide an opportunity to collect authentic, patient-driven data that can complement clinical findings and help identify gaps in care.

This project aims to explore how self-reported sleep duration, perceived stress, and physical ability interrelate, offering a real-world perspective on Fibromyalgia symptom dynamics

2. Review of Literature:

                2.1.        Pittsburgh Sleep Quality Index (PSQI)

The PSQI is a self-administered survey to monitor areas like sleep patterns over a one-month period. The purpose of it is to evaluate sleep quality especially in clinical settings. Its ability to factor in several components like duration, medication, latency and more make the survey very appealing to researchers. However, its self-reporting style makes the survey susceptible to limitations like response bias as well as voluntary bias.

                2.2.        Perceived Stress Scale (PSS)

The PSS is a stress scale that objectively analyzes stress on a scale through multiple questions ranging from emotions to thoughts about current and past experiences. It is widely used in chronic illness research and provides a quantitative framework for understanding stress in Fibromyalgia.

                2.3.        Fibromyalgia Impact Questionnaire (FIQ)

The survey questionnaire used for this research study is similar to Fibromyalgia impact questionnaire which sought to understand the patients’ status in terms of Fibromyalgia. The survey highlights several questions like the ability to do day to day activities like shopping which allows for further work to be done in both research and clinical settings once the patient’s conditions are understood.  However, this survey (although designed for real-world experience) has primarily been used in a clinical or research study helping researchers understand certain effects. While these tools are validated, fewer studies utilize patient-generated community data that capture real-world challenges outside clinical environments

                2.4.        Sleep Disturbances in Fibromyalgia Syndrome: Relationship to Pain and Depression

Conducted by the National Institute of Health the study was an examination of sleep, pain, depression, and physical functioning. The participants consisted of 600 members where many were mostly middle-aged and self-reported experiencing Fibromyalgia for at least a decade. The patients were subjected to a baseline assessment where nearly 500 of them completed an additional assessment a year later. Measurements used for these assessments included the Center for Epidemiologic Studies, Depression Scale, the McGill Pain Questionnaire, Pittsburgh Sleep Quality Index, and the Fibromyalgia Impact Questionnaire. early 95% of members reported problems with sleep, depression, pain, and physical functioning which displays the high prevalence of sleep being key to exacerbating Fibromyalgia symptoms. Furthermore, the study also provides insights into the effects of sleep on pain, depression, and physical functioning. The findings provide context suggesting that poor sleep may exacerbate pain and functional impairment, consistent with trends observed in the present study.

3. Purpose:

This study aimed to examine the relationship between self-reported sleep duration, perceived stress, and physical functioning among individuals with Fibromyalgia, and to assess how these domains align conceptually with established instruments such as the PSQI, PSS, and FIQ.

4. Measures:

The following measures were included in the survey to capture data related to patients diagnosed with and without Fibromyalgia

1. –Preliminary Measure–

Are you currently diagnosed with Fibromyalgia?

2. –Non-FMS Measures–

Rate your physical abilities. On average how many hours of sleep do you get? Have there been any health-related reasons that you might get less sleep? On average how stressed are you? Is there anything else we should know?

3. –FMS Measures–

How has Fibromyalgia affected your physical activity? Rate your physical abilities currently. On average how many hours of sleep do you get? Has Fibromyalgia affected your sleep patterns? If yes please elaborate below. On average how stressed are you? Do you think Fibromyalgia has affected your stress levels in any way? If yes, please elaborate below. Is there anything else we should know?

5. Method:

This study included voluntary participants through various online support groups to reach out to as many Fibromyalgia patients as possible. The inclusion criteria involved anyone experiencing fibromyalgia-like symptoms as well as anyone without Fibromyalgia for comparison purposes. As of November 2025, 52 participants had responded. The survey asked them to rate their current sleep schedule, stress levels, and physical abilities and also accounted for various lurking variables by accounting for their opinions on alternative causes for their ratings. Participants in the survey were asked to rate their sleep, stress, and physical function on a scale of 1-10 in order to quantitatively analyze the effects of Fibromyalgia on sleep and stress. Additionally, participants had the option to further elaborate on real-world experiences as there were open-ended questions to account for lurking variables that might confound the data. This study involved interviews with both Fibromyalgia patients and health experts who specialize in this area in order to understand the issue more extensively. The questions in the survey were self developed but they were conceptually aligned with renowned surveys like the PSS, PSQI, and FIQ. This was an observational statistical study in attempts to identify a statistically significant correlation between certain variables. A voluntary response sampling method was used where certain social media groups with Fibromyalgia members were randomly surveyed and participants self-selected into the survey. Responses were anonymous and participation was voluntary.

6. Results:

Descriptive Statistics:

	Mean	Standard Deviation	Range
Sleep Duration (1-10)	5.56	1.90	8
Perceived Stress (1-10)	7.10	2.17	8
Physical Abilities (1-10)	4.44	1.86	8

Most respondents reported suboptimal sleep and high stress, with moderate impairment in physical functioning.

Correlational Findings:

Variable Pair	r	Interpretation
Sleep ↔ Stress	–0.10	Slight negative trend: shorter sleep → higher stress
Sleep ↔ Physical ability	+0.29	Weak positive trend: longer sleep → better functioning
Stress ↔ Physical ability	+0.10	Slightly positive trend

Although the correlations were small, these directional trends align with established research linking poor sleep and elevated stress to symptom exacerbation. These findings highlight meaningful trends in real-world patient-reported experiences.

Group Comparison: Sleep Duration

	Mean – Stress Levels	Mean – Physical Abilities
Less than 6 Hours of Sleep	7.38	4.08
More than 6 Hours of Sleep	6.74	4.83

Participants sleeping less than six hours nightly reported higher stress (+0.64) and lower physical ability (–0.75) compared with those sleeping longer.

7. Qualitative Themes:

This section of the results summarizes the struggles and feedback given by participants of the survey. Analysis of open-ended responses yielded four recurring themes:

●        Lack of medical expertise or care at all

○        Patients usually have to rely on self-guided research

○        Lack of awareness

●        Usually traditional practice leads to worse outcomes

●        Some participants noted symptoms beginning in adolescence or early adulthood

●        Depression, Anxiety, and mental health are really affected

●        More help, care, and treatments are needed

●        Some of this is further corroborated with other illnesses

●        Led to early retirements

●     Impacted social relationships

8. Discussion:

This study highlights the effects of Fibromyalgia on Sleep, Stress, and Physical Abilities. Not only did respondents report lower averages than individuals without Fibromyalgia but also within this sample, lower sleep was associated with higher stress and lower physical abilities.

These findings are notable as  few studies to date have examined these relationships at a community, patient-reported level, particularly from organizations like Fibromyalgia Patient and Education Support. However, compared to the NIH data, this study is consistent with the observation that poor sleep can have further detrimental effects on individuals with Fibromyalgia.

This can be applied to areas like therapy where therapists focus on creating consistent sleep patterns, goals, and  other strategies in order to ensure a better well-being and overall health outcomes. Additionally, this study also stands as a call to the medical field to expand attention, awareness, and care towards the millions struggling with Fibromyalgia, while also demonstrating the simplicity of certain studies and their profound impact on understanding the experiences of unrepresented groups.

Why These Findings Are Important

This study responds to three gaps in the existing literature:

1. Real-world data – It captures lived experiences from online communities rather than controlled clinic environments.

2. Integrative focus – It simultaneously examines sleep, stress, and function instead of treating them as isolated symptoms.

3. Patient voice – It gives participants agency in describing how these domains interact day-to-day.

By situating patient experiences within validated conceptual frameworks, the study strengthens both clinical relevance and ecological validity.

9. Limitations:

While this study does conclude profound impacts in the area of Fibromyalgia there are certain limitations including measurement limitations as the data was self reported and it is not clinically measured through consistent research. Additionally, compared to the population of 5 million Americans with Fibromyalgia, the sample size of 52 people might not be 100% certain as lurking variables and confounding variables can be present (ie. other chronic illnesses, or conditions present in the patient). Finally, design constraints including voluntary bias, where the people who responded to this survey might have stronger opinions on each extreme, response bias where the sample size might have been solely outliers rather than a true measurement and self-report vs clinical data. Nevertheless, the clear conceptual alignment with validated tools lends credibility to the observed trends.

10. Broader Impact:

Clinical practice: The results encourage clinicians to assess stress and sleep jointly when managing Fibromyalgia. Routine sleep screening and stress-management interventions (mindfulness, pacing strategies) could improve outcomes.

Policy and advocacy: Patient-generated data can highlight unmet needs and justify integrated care programs. Sharing these findings with support organizations can empower advocacy for holistic treatment access.

Research culture: Demonstrating that community-collected data reflect established patterns promotes collaboration between researchers and patient communities, advancing participatory health science.

11. Future Directions:

●     Applications of AI – Medical practitioners could explore the use of remote patient monitoring, AI and wearables including recommendation chatbots and precautionary measurements of sleep, stress and physical activity based on vitals to manage the health and quality of life of Fibromyalgia patients

●     Present at medical research conferences to spread awareness and enable medical practitioners to take action to help Fibromyalgia patients

●    

●     Scale Up the Sample – Aim for ≥150 responses to allow inferential testing and subgroup analysis (e.g., gender, comorbidity).

●     Incorporate Validated Instruments – Include official PSQI, PSS-10, and FIQR items to confirm construct validity of your self-developed questions.

●     Mixed-Methods Design – Combine quantitative scales with qualitative interviews to capture lived experience depth.

●     Longitudinal Tracking – Re-survey participants over several months to examine how fluctuations in stress or sleep predict symptom change.

●     Intervention Pilot – Test a brief stress-management or sleep-hygiene program to observe functional improvements.

12. Conclusion:

This study concludes that there are modest but meaningful trends linking lower sleep duration with higher stress and reduced physical functioning among individuals with Fibromyalgia. These directional patterns, supported by qualitative patient experiences, reinforce the importance of addressing sleep and stress together as part of holistic Fibromyalgia care management.

13. Works Cited:

1. Bigatti, S. M., Hernandez, A. M., Cronan, T. A., & Rand, K. L. (2008). Sleep disturbances in fibromyalgia syndrome: Relationship to pain and depression. Arthritis & Rheumatism. Retrieved from https://pmc.ncbi.nlm.nih.gov/articles/PMC3691959/ PMC

2. National Fibromyalgia Association. (n.d.). Fibromyalgia and chronic pain. Retrieved [Date you accessed it], from https://www.fmaware.org/ The National Fibromyalgia Association

3. American Fibromyalgia Syndrome Association. (n.d.). Fibromyalgia overview. Retrieved [Date you accessed it], from https://www.fibromyalgiafund.org/ AFSA

4. Sleep Foundation. (n.d.). Fibromyalgia and sleep. Retrieved [Date you accessed it], from https://www.sleepfoundation.org/physical-health/fibromyalgia-and-sleep Sleep Foundation

5. Mayo Clinic. (2025). Fibromyalgia — Symptoms & causes. Mayo Clinic. Retrieved [Date you accessed it], from https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780