Ehlers Danlos Syndrome Tracker

Subluxations and dislocations — tracking what your joints actually do

The Subluxations/Dislocations field accepts a count from 0–10 per day. This distinction matters: a subluxation is a partial displacement where the joint surfaces partially separate but return on their own or with minimal repositioning; a full dislocation requires active reduction. In hypermobile EDS, subluxations can happen dozens of times a day in severe presentations and go largely unnoticed in milder ones. Logging the count normalizes the conversation with providers who may not appreciate how frequently this happens.

Over time, the subluxation count often correlates with activity load, fatigue level, and temperature. A week of high-count days alongside high activity and low sleep reveals the cascade: insufficient rest reduces muscle tone and proprioception, increasing joint vulnerability. That pattern, documented across multiple weeks, is genuinely informative for both the individual and their physical therapist.

Bracing and support as a trackable intervention

The Bracing and Support Level field — None, Minimal, Moderate, Comprehensive, or Full Protocol — captures how much joint stabilization you used today. Bracing in EDS is not a permanent fix; it is a tool that reduces joint loading and injury risk during high-demand activities. Tracking usage helps you see whether higher bracing days correlate with lower subluxation counts, which validates the intervention — or whether you are using bracing extensively and still accumulating joint events, which suggests the brace protocol needs reassessment.

Consistency with bracing often drops during low-symptom periods, and that dip sometimes precedes an increase in subluxation events two to three weeks later. The tracker makes that lag visible so you can make more deliberate decisions about when to maintain the full protocol versus when it is safe to reduce it.

Fatigue in EDS — more than just tiredness

Fatigue is a prominent feature of hypermobile EDS and is thought to stem from multiple sources: the constant muscular work required to stabilize hypermobile joints, pain interference with sleep, autonomic dysfunction (POTS is commonly comorbid with hEDS), and sometimes nutritional deficiencies from associated GI issues. The Fatigue Level field (0–10) tracks this independently of joint pain because the two can be quite dissociated.

A high-fatigue, low-subluxation day might reflect orthostatic intolerance or a sleep-disrupted night rather than acute joint instability. A high-subluxation, moderate-fatigue day might reflect an activity-heavy day without appropriate rest breaks. Logging both daily gives you the ability to separate these patterns rather than collapsing them into a single 'bad day' description.

Sleep quality in hypermobile EDS

The Sleep Quality field uses a 1–5 numeric scale rather than a descriptive dropdown in this tracker, giving you a more precise gradient for daily logging. Sleep disruption in EDS is extremely common and stems from several sources: nocturnal subluxations waking you in pain, pain-related insomnia, restless legs (a recognized EDS comorbidity), and the non-restorative sleep pattern seen in many connective tissue disorders.

People with EDS often describe waking in pain from a position shift that displaced a joint during sleep. Logging sleep quality alongside next-day fatigue and subluxation count helps identify whether poor sleep is actually driving next-day joint instability — possibly through reduced muscle tone and impaired proprioception — which is a clinically important mechanism worth discussing with an EDS-knowledgeable physiotherapist.

Building a case for multidisciplinary care

EDS benefits most from a multidisciplinary team — physiotherapy, pain management, cardiology if POTS is present, genetic counseling, and sometimes psychology. Getting referrals often requires demonstrating the scope and consistency of the condition, which is harder with a verbal description than with documented evidence. A month of logs showing consistent 4–7 subluxations daily, joint pain of 6–8, and fatigue of 7+ makes a compelling case for comprehensive care.

The Treatment/Care Status field — None, Self-Management, Physical Therapy, or Multidisciplinary — also serves as a self-assessment of where gaps exist. Many people with EDS are managing without specialist input not because none is needed but because the referral pathway is difficult. Bringing documented data to your GP changes that conversation. Track it consistently and you will have something real to show your provider. Track 60 days of multi-system EDS data to bring real-world frequency data to your specialist team → Track 60 days of multi-system EDS data to bring real-world frequency data to your specialist team →

Important: this is a self-tracking tool, not medical advice

This tracker is a self-monitoring tool, not a diagnostic device. The information you enter and the scores it produces are for personal awareness and for sharing with your clinician — they are not a substitute for professional medical evaluation, diagnosis, or treatment. Do not change medication, dose, or treatment plan based on this tool. If you experience symptoms that concern you, contact your clinician; for emergencies in the US, call 911 or your local emergency number. Mental health crisis support in the US is available 24/7 by calling or texting 988.

Ehlers Danlos Syndrome Tracker vs. the alternatives

How to use it

1. Log Joint Pain Level (0–10) as your overall average across the day, not just the worst moment.
2. Count Subluxations and Dislocations from the day — include minor joint shifts that you self-managed along with any events requiring assistance.
3. Rate Fatigue Level (0–10) and enter Sleep Hours and Sleep Quality (1–5) from the previous night.
4. Select your Bracing and Support Level for today and your Treatment/Care Status, then enter EDS Duration in months.
5. Review the EDS Management Score and verdict, noting which inputs are scoring lowest to prioritize in your next care conversation.

Who it's for

• Person newly diagnosed with hypermobile EDS — Logs daily subluxation count and fatigue for eight weeks to establish a baseline before starting physical therapy, giving the physiotherapist a documented starting point rather than a verbal description.
• Someone with hEDS and suspected POTS — Uses the fatigue field alongside activity level and sleep quality to document the pattern of orthostatic-related fatigue, supporting a referral to cardiology for tilt table testing.
• Person post-surgery for EDS-related joint instability — Tracks subluxation count before and after surgery alongside bracing protocol to document whether surgical intervention produced measurable improvement in joint stability.
• Adult managing EDS long-term and preparing for a pain management referral — Brings three months of joint pain and functional data to their GP to demonstrate the consistent severity of unmanaged pain and request a specialist referral.

Key terms

Subluxation

A partial dislocation where the joint surfaces partially separate but do not fully come apart. Common in hypermobile EDS and often self-reducing.

hEDS (hypermobile Ehlers-Danlos Syndrome)

The most common subtype of EDS, characterized by joint hypermobility, skin features, and musculoskeletal pain. Currently diagnosed on clinical criteria; no genetic test confirms it.

Proprioception

The body's sense of joint position and movement. Often reduced in EDS, contributing to joint instability and subluxation risk — especially with fatigue.

POTS (Postural Orthostatic Tachycardia Syndrome)

A form of autonomic dysfunction frequently comorbid with hEDS, characterized by an excessive heart rate increase upon standing and associated fatigue and presyncope.

Sources & further reading

• The Ehlers-Danlos Society
• NORD — EDS
• NINDS — EDS overview
• Hypermobility Syndromes Association
• PubMed — 2017 EDS International Classification