Colorado Care Network

3. Dysautonomia after a normal workup

Clinicians with complex patients Planned episode, outlier patients in primary care. Fatigue, pain, orthostatic and cognitive symptoms after a standard workup has come back unrevealing.

Listener title: Dysautonomia after a normal workup

Listener description: A physician who runs autonomic testing talks about adults with fatigue, pain, orthostatic and cognitive symptoms whose standard workup has come back unrevealing. The conversation covers how much workup is enough, how to keep the clinical relationship without a label, and which specialty referrals have helped. For primary care clinicians who care for these patients over time.

Run of show (about 40 minutes)

Time Segment What happens
0:00 to 2:00 Opening The host introduces the topic and the guest's role. The guest states any industry relationships. The host notes that no patient information is discussed and that the guest speaks for themselves, not for the network.
2:00 to 7:00 What an autonomic laboratory does The guest explains what their laboratory tests, what a referral should ask, and what comes back. The host asks what office postural vital signs can and cannot settle before a referral.
7:00 to 16:00 How much workup is enough What workup is enough before you stop looking? The guest explains how they decide a search has reached its endpoint. The host notes two findings the CCN nonspecific symptoms page cites: Oaklander 2013 found small-fiber polyneuropathy on skin biopsy in 41% of a fibromyalgia cohort against 3% of controls (the page notes it was a small study), and the Undiagnosed Diseases Network reached a diagnosis in 35% (132 of 382) of patients who had already had extensive workups (Splinter 2018). The guest says how findings like these affect when they keep looking and when they stop.
16:00 to 25:00 Keeping the relationship without a label How do you keep the relationship when there is no label? The guest explains the language they use, how they report normal results, and how they set a plan with an endpoint and functional goals. The host asks how behavioral health fits into the plan without ending the search.
25:00 to 33:00 Referrals that helped Where has a specialty referral actually helped? The guest explains which referrals have changed care (autonomic testing, neurology for suspected small-fiber neuropathy, gastroenterology, cardiology) and which rarely do. The host asks how the 2019 NIH expert consensus on POTS (Vernino 2021) and the American Autonomic Society statement on long-COVID postural tachycardia syndrome (Raj 2021) shape what the guest's laboratory looks for, and what a useful referral question looks like.
33:00 to 37:00 Composite scenario, not a real patient Several years of fatigue, lightheadedness on standing, burning pain in the feet and trouble concentrating, beginning after a viral illness; standard labs, imaging and a cardiology visit were normal, and the patient carries prior labels of anxiety and fibromyalgia. The guest walks through what they would want primary care to have done before referral and what question they would want written on it.
37:00 to 40:00 Closing Takeaway: give every referral one written question and a return date, and keep a written search plan with an endpoint that the patient also holds. The nonspecific symptoms cohort is forming and needs a lead; its page is coloradocarenetwork.com/cohorts/nonspecific-symptoms/ and members discuss it in #cohort-nonspecific-symptoms. Listeners reach the network at coloradocarenetwork.com/join/ or hello@coloradocarenetwork.com.

Guest prep questions (sent to the guest a week ahead)

  1. What does your autonomic laboratory test, and what should a primary care referral include so the results answer the question asked?
  2. Before referral, what should primary care already have done: office postural vital signs, particular labs, a trial of nonpharmacologic measures? What can be skipped?
  3. How do you decide that a workup has gone far enough, and how do you tell the patient?
  4. When do you test for small-fiber neuropathy, and how often has the result changed management in your experience?
  5. Since post-infectious onset became common in your referrals, what has changed in how you evaluate these patients? Please send any sources you plan to cite (PubMed, DOI, GeneReviews or guideline) before recording.

Show notes

A physician who runs autonomic testing discusses adults whose fatigue, pain, orthostatic and cognitive symptoms persist after a standard workup has come back unrevealing. The conversation covers how to decide when a workup is enough, how to keep the clinical relationship when there is no diagnosis, and which specialty referrals have changed care. A composite scenario, not a real patient, shows what a useful referral to an autonomic laboratory contains. The episode draws on the CCN nonspecific symptoms care map.

  • Sources:
  • Oaklander AL, Herzog ZD, Downs HM, Klein MM. Objective evidence that small-fiber polyneuropathy underlies some illnesses currently labeled as fibromyalgia. Pain. 2013;154(11):2310-2316. doi:10.1016/j.pain.2013.06.001
  • Vernino S, Bourne KM, Stiles LE, et al. Postural orthostatic tachycardia syndrome (POTS): state of the science and clinical care from a 2019 National Institutes of Health expert consensus meeting, part 1. Auton Neurosci. 2021;235:102828. doi:10.1016/j.autneu.2021.102828
  • Raj SR, Arnold AC, Barboi A, et al. Long-COVID postural tachycardia syndrome: an American Autonomic Society statement. Clin Auton Res. 2021;31(3):365-368. doi:10.1007/s10286-021-00798-2
  • Splinter K, Adams DR, Bacino CA, et al. Effect of genetic diagnosis on patients with previously undiagnosed disease. N Engl J Med. 2018;379(22):2131-2139. doi:10.1056/NEJMoa1714458
  • No patient information is discussed on this episode.

All planned episodes. To be the guest for this episode, email hello@coloradocarenetwork.com with the episode number.

Colorado Care Network. 3. Dysautonomia after a normal workup. Version 2026-10-30.