How we separate experience from evidence

A personal story and a medical study can both be worth reading. They answer different questions.

This is the editorial method behind Living Through the Pain. The aim is to be clear about what is remembered, what is recorded, what published information supports, and what remains unknown. We want people to understand the experience without being asked to accept a personal account as proof of a treatment.

Four kinds of information

1. Personal experience. What someone remembers, felt, tried, or reported at the time. We preserve the source and its date, and we avoid turning an individual experience into a promise for others.
2. Clinical information. Definitions, diagnostic approaches, treatment considerations, and safety information from qualified medical sources. We link to the source and distinguish broad clinical guidance from individual decisions.
3. Research evidence. Published studies and reviews, with relevant questions about participants, outcomes, study limitations and whether findings apply specifically to CRPS.
4. Working ideas. Personal questions or patterns worth exploring. These remain labeled as questions or hypotheses, not findings.

What goes into an article

A historic treatment article describes the time period, the context of other treatments and activities, and what the author reported. A newer educational summary names its outside sources and should make clear when evidence for CRPS itself is different from evidence for other pain conditions.

The dates matter. Original writing may contain language that reflected an older understanding of a treatment or device. We may preserve that statement as history while correcting it separately when current safety information is different. For example, MRI eligibility for an implanted stimulator cannot be established from a blanket statement in an old personal blog.

We do not silently invent missing records, unverified dates, direct quotations, or treatment outcomes to make a cleaner story. If a key detail is uncertain, the page should say so.

What stays private

The original website backup and raw medical, sleep, and journal records are preserved separately from the public site. A record does not become approved for publication just because it exists in an archive. Family members and other contributors control whether their own words or photographs appear here.

The public Knowledge Library uses explicit publication metadata. Only approved, published, public resources are listed; draft and private source records are not included.

How we handle updates and corrections

Our pages may be improved as original sources are recovered or more reliable information becomes available. Changes to safety guidance should be described as updates rather than rewriting the historical experience. If a previously stated fact cannot be supported, we should correct or qualify it.

Begin with the human story: My Story. For educational questions, Start Here links to patient-facing medical resources. Treatment accounts are collected in Treatments & Tools.

This project is educational and personal. It does not provide diagnosis, urgent assessment, or individualized treatment advice.