Sjögren's and Dizziness on Standing: A Standing Symptom Diary

Updated 10 October 2026

Dizziness on standing can pass in a moment and then be hard to describe at a visit. Whether it came with a racing heart, blurred vision or a need to sit, and how long it lasted, tends to be forgotten by the time a clinician asks.

This guide sets out what the Sjögren's Foundation and Dysautonomia International say about dizziness on standing, then offers a table of the statements, a standing symptom diary, a list of words, four steps and a one-page summary. The guide records what you notice and what you were told. A clinician decides what a symptom means, and nothing here diagnoses a cause or recommends a treatment.

What the Sjögren's Foundation and Dysautonomia International report about dizziness on standing

The Sjögren's Foundation says that when Sjögren's affects a part of the nervous system called the autonomic nervous system (ANS), which is part of the peripheral nervous system, it can cause a problem called autonomic dysfunction, often called dysautonomia. Its page on the nervous system adds that dysautonomia can cause a wide range of symptoms, including dizziness or lightheadedness, such as after you stand up from lying down, brain fog, problems digesting food and problems with the glands that produce moisture.

The Foundation's page on dysautonomia and Sjögren's disease names orthostatic intolerance: when a person experiences symptoms such as dizziness, feeling faint, blurry vision or lightheadedness when they stand or sit up. It says these symptoms usually go away or get better when a person lies down, and that POTS is a type of orthostatic intolerance that some people with Sjögren's have.

On how common this is, a Foundation blog post says its experts state that approximately 50% of patients with Sjögren's present with some form of dysautonomia. A guest post on Dysautonomia International by a physician with POTS and Sjogren's says most people with Sjogren's disease have dysautonomia, which can cause conditions such as POTS, orthostatic hypotension, stomach, gut and bladder problems and unusual sweating.

These sources describe a recognized overlap between Sjögren's and autonomic symptoms. They describe groups and give no way to tell what any one episode of dizziness means. That judgment belongs to a clinician, who may ask when it happens, how long it lasts and what comes with it, and a diary lets you answer from dated entries.

Questions for the clinician can be written in the Daily Journal of Sjögren's Journey (by Health Journey Labs), so they are on your phone in your own words when the appointment begins.

Two estimates that differ: about 50% and most people, and who each describes

The sources do not give one figure for how many people with Sjögren's have autonomic symptoms. The table sets out what each says and where it comes from.

Two estimates that differ table, by Sjögren’s Journey

The Foundation's estimate and the guest post give different proportions, and they come from different speakers: experts quoted by a patient organization, and one physician writing for a dysautonomia charity. Neither is a count from a single study. The honest reading is that autonomic symptoms are described as common in Sjögren's, with the exact share unsettled in these sources.

For note-keeping, a proportion does not say whether your own dizziness belongs to this overlap. Dated entries of what happened when you stood are what a clinician can work with. The guide to starting to track Sjögren's symptoms describes a light way to begin the wider history.

Dates of tests a clinician orders can be kept in My Labs of Sjögren's Journey, so the results sit in one list beside your standing entries.

A standing symptom diary for the clinician: time, trigger, feeling and duration

One row for each episode lets a clinician read your pattern at a glance. The columns below are for what you noticed and nothing more.

Standing symptom table, by Sjögren’s Journey

Write the day and hour, what you were doing, what you felt in your own words and how long it lasted. Add the day's fatigue on a 0 to 10 scale, because a clinician may want to read standing episodes and fatigue together. If a clinician has asked you to record your pulse or blood pressure, add a column for the figure and the time, using the device and method they showed you.

After several weeks, read through the rows from top to bottom. A clinician may see whether episodes cluster in the morning, after standing for long, or on high-fatigue days, which a single visit cannot show. The diary records what you noticed. What it means is for the clinician. The guide to coping with Sjögren's fatigue when you look fine covers the fatigue side.

Every column of the diary can be placed in Sjögren's Journey: the Daily check-in for the day's fatigue, the Daily Journal for how an episode felt and My Care Team for what each clinician said.

Words for dizziness, faintness and vision changes on standing

A clinician will ask what the episode felt like, and a short list of words helps you answer in the same terms each time.

Words for standing symptoms

Sjögren’s Journey offers words for standing symptoms.

• Dizziness words: dizzy, lightheaded, unsteady, spinning, no change.
• Faintness words: felt faint, nearly passed out, greyed out, needed to sit.
• Vision words: blurry, dimmed, spots, back to normal.
• Heartbeat words: racing, pounding, felt normal.
• Settling words: eased when I lay down, eased when I sat, lasted until I moved on.
• Your own words: any term that matches how it felt.

Choose the words that match what happened and write them with the time. For a word that suits only in part, place it in quotation marks to show it was a best guess.

These words follow the symptoms the Foundation's page lists for orthostatic intolerance: dizziness, feeling faint, blurry vision and lightheadedness on standing, and the way they usually ease on lying down. Some clinicians prefer other terms and can say which. Note when an episode ended differently, such as lasting longer than usual, because such changes are what a clinician most needs to hear about. The guide to tracking Sjögren's labs beside dryness and fatigue weeks shows how dated results sit alongside symptom notes.

The terms you settle on, with the hour of the episode, can be saved in the Daily Journal of Sjögren's Journey, so a clinician hears it as you put it.

Before a visit about dizziness on standing in Sjögren's: four steps

A visit about dizziness is usually short. Four steps help your diary take a clear place in it.

Standing dizziness steps, by Sjögren’s Journey

1. Fill the diary for at least two weeks, one row per episode.
2. Underline the episodes that were longest or that came with a fall, near-faint or racing heart.
3. Write a three-line summary: how often, when it happens and what comes with it.
4. Write two or three questions and lead with the most important one.

From Sjögren's Journey, we recommend finishing the summary the day before the visit (Sjögren's Journey checklist), so the diary is current.

Say at the start that you have Sjögren's and have been noting standing symptoms, and hand over the page. Mention any other symptoms that the Foundation links with dysautonomia, such as digestive trouble or unusual sweating, only if you have noticed them, with the dates. The clinician can then decide what to look at first.

Keep the summary short. A page with the pattern and three lines is easier to read than every row, and the full diary stays available if the clinician wants more. Add any answers to the page, with the date, so the next visit starts from what was said.

On the morning of the visit, Sjögren's Journey shows standing episodes, fatigue days and questions in one history, so the three lines come from entries you already made.

One summary page for the clinician: standing entries beside fatigue days

A single page lets a clinician see your pattern before the first question is asked.

Summary of standing episodes and fatigue

Sjögren’s Journey uses this summary to place standing episodes next to fatigue scores on the same days.

• The period covered and the number of episodes.
• When episodes happen: time of day and what you were doing.
• What you felt, in your words, and how long each lasted.
• Fatigue scores on the same days.
• Anything else a clinician said, with the date it was said.
• Two or three questions for this visit.

Slide the page across the desk at the beginning and suggest reading it together. If the clinician suggests a test or a plan, add it to the page with the date, so it travels with you. Keep a copy and note each answer on it, with the clinician's name beside it.

The page records what you noticed. What is behind the dizziness, whether any test is needed and what should be done are for your clinician to decide, and the sources here describe groups and an overlap without giving instructions. A clear diary is the most useful thing to bring, and it keeps its value whatever the clinician decides. If a fall, fainting or chest pain occurs, seek care promptly and add it to the page afterward.

Shown from a phone or printed, the Doctor Report in Sjögren's Journey puts dates, episodes and questions on one page, and My Care Team holds what each clinician said.

How Sjögren's Journey can help

A standing diary on a sheet of paper is enough to begin. If you want episodes, fatigue days and visit questions in one dated history, the best Sjögren's apps guide compares the options.

Sjögren's Journey is a personal sjogrens tracker from Health Journey Labs on the App Store and Google Play. Before the next appointment, two weeks of standing entries are worth more than a good memory. Leave the interpreting to the clinician, and keep the times, the words and the durations on one sheet. Below is what you can use and how each part helps.

• Daily check-in — Logs physical symptoms, emotional state, nutrition, sleep, exercise, meds, external factors; app-specific items: eye dryness, mouth dryness, fatigue; read together with the rest of the logged history.
• Flare Tracker — Logs flag a day clearly worse than the usual hard week, onset, intensity, short note; app-specific items: grit, cotton mouth, pain, a crash; read together with history across weeks (one-off spike vs repeating pattern).
• Daily Journal — Logs free-text notes, voice entry; app-specific items: what the day limited, AC/screens/wind context, partner talks, visit debriefs, leftover guilt after you canceled; read together with scores and other logged history (adds context).
• Learn — Logs short education topics, prompts; app-specific items: dryness, fatigue, pacing, visit prep, dryness on days that look fine; read together with your own logged weeks.
• AI companions — Logs Clara (general chat), specialist companions; app-specific items: knowledge, fitness, nutrition, relationships; read together with your logged history (companions already see it); used for: visit wording; a calm partner script; a soft rain-check line; a listening ear after a hard dryness day.
• Weekly Goals — Logs one small aim, whether it held; read together with real check-ins.
• My Meds — Logs medicine names, timing, dose; app-specific items: artificial tears, gels, saliva substitutes, other options you actually use; read together with dryness weeks, sleep, energy, the rest of the tracked history.
• My Labs — Logs result dates; app-specific items: antibody panels, inflammatory markers, imaging, other tests; read together with dryness, fatigue, function.
• My Care Team — Logs clinicians, short visit notes; app-specific items: tends to ask mainly about tears rather than function; read together with logged history; used for: visit prep (what to ask and bring); notes during the visit; review afterward.
• Doctor Report — Logs one-page summary exported from logged history; app-specific items: dates, dryness, fatigue, how you functioned; read together with the history already logged; visit type: clinic.
• My Assessments — Logs structured check-ins beyond daily scores, onboarding life and social context; read together with ongoing history.
• Food Tracker — Logs meal or drink lines, caffeine, alcohol; read together with dryness.
• Period Tracker — Logs start and stop dates, flow, how heavy or light bleeding felt; read together with flares, dryness, sleep, energy, everything else logged.
• Weight Tracker — Logs scale or body notes; read together with energy, sleep, dryness.

Everything you log builds one history, and insights get stronger as it grows. Custom symptoms let you add your own labels.

Sources

• Sjögren's Foundation: signs and symptoms
• Sjögren's Foundation: dysautonomia and Sjögren's disease
• Sjögren's Foundation: nervous system and Sjögren's disease
• Sjögren's Foundation: dysautonomia in Sjögren's
• Dysautonomia International: Sjogren's and dysautonomia

FAQ

The answers below draw on the sources cited in this guide, and the app they mention is Sjögren's Journey (by Health Journey Labs).