EDS Back Pain: What to Log

Updated 29 Oct 2026

The NHS describes Ehlers-Danlos syndromes as a group of rare inherited conditions that affect connective tissue, which supports skin, tendons, ligaments, blood vessels, internal organs, and bones (NHS EDS guidance). Back pain is one place joint symptoms can show up, and it is easier to discuss with a dated record.

This guide covers what to log about back pain with EDS: where and when it hurts, daily activity, home care, exercises and treatments, and the signs that need urgent help.

Why back pain is worth logging with EDS

Ehlers-Danlos Journey (part of Health Journey Labs) reviewed the NHS guidance. The NHS lists joint hypermobility, loose, unstable joints that dislocate easily, joint pain and clicking joints, and extreme tiredness (fatigue) among the features of hypermobile EDS (NHS EDS guidance). It notes that kyphoscoliotic EDS, a rare type, can cause curvature of the spine (NHS EDS guidance), and that EDS can affect people in different ways (NHS EDS guidance).

The NHS back pain page says back pain can have many causes, that the cause is not always obvious, and that a common cause is an injury like a pulled muscle (strain) (NHS back pain guidance). It says it usually improves within a few weeks but can sometimes last longer or keep coming back (NHS back pain guidance).

With EDS, a log helps you tell a new back strain apart from pain that keeps returning, and shows your team how long each spell lasts.

For joint events, see what to log on EDS subluxation days.

In Ehlers-Danlos Journey, the Daily check-in keeps back pain on the same day as other joint symptoms.

What to log about where and when it hurts

The NHS advises seeing a GP for back pain that does not improve after resting or is worse at night, is worse when sneezing, coughing, or pooing, or is coming from the top of your back, between your shoulders, rather than your lower back (NHS back pain guidance). It also lists a lump or swelling in your back, or your back changing shape (NHS back pain guidance).

Those points tell you what to write down. Log where the pain sits (lower back, between the shoulders, one side or both), whether it is worse at night or after rest, and whether coughing, sneezing, or pooing makes it worse.

Note when each spell started, and whether it followed a clear event, such as lifting, a twist, or a joint slipping, or came on without one. If you notice any change in the shape of your back or a new lump, write the date and raise it with a GP.

In Ehlers-Danlos Journey, the Daily Journal keeps each description in your own words, with its date.

What to log about daily activity

The NHS advises seeing a GP if back pain is stopping you doing your day-to-day activities, or if you are worried about the pain or struggling to cope (NHS back pain guidance). Its advice for easing back pain is to stay active and try to continue with your daily activities, and not to stay in bed for long periods of time (NHS back pain guidance).

For EDS, the NHS says an occupational therapist can help you manage daily activities and give advice on equipment that may help you (NHS EDS guidance).

So log what the pain stopped you doing, not only how much it hurt: work, chores, sitting at a desk, walking, or sleep. Note what you still managed. A week of these lines shows a GP or therapist the real effect of the pain, which a single pain number does not.

For busy weeks, see how to plan a busy week with EDS.

In Ehlers-Danlos Journey, the Flare Tracker marks heavy days so they stand out in the history.

What to log about home care

The NHS suggests using an ice pack (or bag of frozen peas) wrapped in a tea towel to reduce pain and swelling, and a heat pack (or hot water bottle) wrapped in a tea towel to relieve joint stiffness or muscle spasms (NHS back pain guidance).

It says you can take anti-inflammatory medicine like ibuprofen, which may not be suitable for everyone, that paracetamol on its own is not recommended for back pain but may be used with another painkiller, and to check with a pharmacist or GP if you are unsure which painkiller is suitable for you (NHS back pain guidance).

Log what you tried, when, and how the next few hours went. If you use a painkiller, note its name, dose, and time, and check with a pharmacist first if you take other medicines. Over a few spells, the log shows which home care helped you most, and that is useful to bring to a visit.

In Ehlers-Danlos Journey, My Meds keeps each medicine with its dates, so painkiller use is easy to review.

What to log about exercises and treatments

The NHS says there are specific exercises and stretches you can do to help with back pain, but to stop if your pain gets worse and see a GP for advice (NHS back pain guidance). It says activities like walking, swimming, yoga, and pilates may also help ease back pain (NHS back pain guidance). For EDS, it says a physiotherapist can teach you exercises to help strengthen your joints, avoid injuries, and manage pain (NHS EDS guidance).

If back pain does not get better after a few weeks, the NHS lists other treatments, including group exercise sessions and physiotherapy, manual therapy, and cognitive behavioural therapy (CBT) to help you cope with the pain (NHS back pain guidance). It notes that in many areas you may be able to get physiotherapy from NHS community musculoskeletal (MSK) services without a GP referral (NHS back pain guidance).

Log each exercise session, what you did, and how your back and other joints felt that evening and the next day. Write down any exercise you stopped because pain got worse, and bring that to your physiotherapist.

For physio homework, see how to pace exercise and PT homework with EDS.

In Ehlers-Danlos Journey, Weekly Goals sets one small exercise aim and shows whether it held.

When to get help

The NHS says to ask for an urgent GP appointment or get help from 111 if you have back pain and feel hot, cold, shivery, or generally unwell, or if it is severe pain that starts suddenly or is getting worse quickly (NHS back pain guidance).

It says to call 999 or go to A&E if you have back pain with pain, tingling, weakness, or numbness in both legs; a loss of feeling around your genitals or anus; changes in your bladder or bowels, such as difficulty peeing, or peeing or pooing yourself; chest pain; or if it started after a serious accident, such as a car accident (NHS back pain guidance). It says not to drive yourself to A&E and to bring any medicines you take (NHS back pain guidance). In the US, call 911 or go to the ER for these signs, and use urgent care or your primary care doctor where the NHS mentions a GP.

It also advises seeing a GP if back pain does not improve after a few weeks of treating it at home, or you have lost weight without trying (NHS back pain guidance). A log never replaces that help; it only makes the conversation quicker.

In Ehlers-Danlos Journey, the Doctor Report brings your dated back pain notes to the appointment.

How Ehlers-Danlos Journey can help

One bad back day is easy to describe vaguely. The harder part is keeping where it hurt, what it stopped you doing, home care, and exercise in one dated record, so your team can see how they connect.

Ehlers-Danlos Journey is a personal EDS tracker from Health Journey Labs on the App Store and Google Play. It records symptoms, joint events, medicines, and tests in one dated history. For a side-by-side look at EDS trackers, see the best Ehlers-Danlos apps in 2026. Below is what you can use and how each part helps:

• My Meds — Medicine names and timing, including pain relief and supplements, so you can see how a start date lines up with joint weeks.
• Daily check-in — A short guided pass across symptoms, mood, nutrition, sleep, exercise, meds, and external factors, including joint pain, instability, fatigue, and activity.
• Flare Tracker — Mark a subluxation, dislocation, pain flare, or bruising episode, with its intensity and duration.
• Daily Journal — Freer notes, including voice when typing or gripping is sore, such as what the day limited or physiotherapy homework.
• Weekly Goals — Set one small aim, such as a 10-minute rest between chores or three short physiotherapy sessions, and see whether it held.
• My Labs — Result dates for blood counts, imaging, genetic tests, or other workups, so each result sits next to how you felt that month.
• AI companions — Clara and specialist companions already see your logged history, which helps with visit wording or pacing ideas.
• Doctor Report — Two views: the Appointment Planning Report, a list of questions to prepare before a visit, and Generate Report, a dated summary of your recent progress to show a doctor saved in My Care Team.
• Learn — Short education topics on pacing, instability, fatigue, visit preparation, and invisible pain.
• My Assessments — Structured check-ins that add context about you across weeks.
• My Care Team — A profile for each clinician, plus visit notes used before, during, and after appointments.
• Food Tracker — Meal or drink lines when food comes with worse pain, energy, or gut days.
• Weight Tracker — Weight entries when weight is part of what you and your clinician are watching.
• Period Tracker — Cycle dates and flow, so you can line up cycle timing with pain, instability, or energy.

Everything you log builds one history. Guided forms include the key questions, and you can add custom symptoms when you need your own labels. Ehlers-Danlos Journey is free to download.

Sources

• NHS — Ehlers-Danlos syndromes
• NHS — Back pain

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