Fibromyalgia: Your Pain and Fatigue Records Are Research Data

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 7 November 2026.

Fibromyalgia has no blood test and no scan. It is diagnosed from what a person describes, widespread pain, exhaustion, poor sleep, trouble thinking, and it is treated by trying things: exercise, sleep changes, therapy, medicines, pacing. Because so little of it shows up in a lab, the person's own record, kept over weeks and months, is the main evidence there is. Research on what helps people with fibromyalgia depends on exactly that.

How many people live with it

A 2026 meta-analysis of 188 studies across 38 countries found a pooled fibromyalgia prevalence in the general population of 1.40%. An earlier review found values between 0.2 and 6.6% depending on the study. In UK primary care, recorded diagnoses run at 33.3 per 100,000 people a year.

The records worth keeping

A comparison of fibromyalgia guidelines from Canada, Germany and Israel describes the steps that leave records:

• A diagnostic checklist: the modified ACR 2010 diagnostic criteria, which do not need a tender point exam.
• A symptom questionnaire: the German guideline recommends the fibromyalgia survey questionnaire to assess symptoms and severity. Repeated scores show change over time.
• Selected blood tests to exclude another disease, and screening for anxiety and depression at the first evaluation.
• A written explanation of the diagnosis and plan, which guidelines say patients should get after initial diagnosis.

A diary of pain, energy and sleep, and steps or sleep data from a phone or wearable, show the pattern between appointments. If you do not have your clinic letters, ask your practice for a copy.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete fibromyalgia story with the records the guidelines list comes to about $98 per licence on the benchmark today. With 60 days of symptom diary entries added, it comes to about $283 per licence, and with 90 days of sleep and activity data from a wearable about $208 per licence. Every line and its source is on the fibromyalgia page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

How to share it

You start by writing what you live with in your own words; a few quick questions follow, then an AI interviewer asks about the details only you know, and you rate every treatment you tried. You can add clinic letters, questionnaire results and pages of a pain diary as PDFs or photos, and the AI reads them into your own medical file. Before anything is shared, you read the de-identified summary and decide.

Start your story, or read what your health data is worth first.