Chronic Insights

Trying to start your own business as a spoonie is hard. But it can also lead to the freedom and flexibility we need to be able to work while being chronically ill. James and Emma discuss their experiences in spoonie entrepreneurship!

James talks to Emma Reilly, a spoonie with an amazing story of living with endometriosis and growing up with social anxiety

If you have chronic pain, you need to listen to this chat I had with Ian Young, a somatic movement coach who lives with axial spondyloarthritis, about somatics: a gentle system of simple movements designed to relieve stress and tension in muscles and joints which can lead to less pain, less fatigue, and an opportunity to feel more comfortable and relaxed in our own bodies.

Also, get the latest updates about the Chronic Insights app - there are some great features coming in the next beta release!

It's been a long break because of more chronic illness, but this time it's not just me! Join me as I refect on what it's like being the one caring for others with chronic illness for a change, and get the latest news on my symptom diary app Chronic Insights.

If you have an autoimmune disease this episode is a must-listen! Today we look at how the immune system works, what it does, why it goes wrong and why autoimmune disease happens, learning amazing facts about how our bodies work along the way!

This is really empowering stuff to know for anyone with an autoimmune condition like rheumatoid arthritis, axial spondyloarthritis / ankylosing spondylitis, MS, ME / chronic fatigue syndrome, fibromyalgia, lupus, Graves, crohns or any of the 100+ autoimmune diseases we know about: by learning how our diseases work, we can more easily come to terms with them, accept what is happening, and learn to appreciate just how amazing our bodies really are.

A sneek peak into the future for the Chronic Insights symptom diary app! After a flareup of pain and fatigue from my axial spondyloarthritis, I didn't have time to prep a normal episode this week, so instead I take you behind the scenes and list all the exciting features on my whiteboard - including food diaries, air quality and support for people with amputations.

If you have chronic pain, you need to listen to this episode! Did you know that the body creates it's own opioids? Learn what they are, how they work, how they relate to synthetic opioids, why tolerance and dependence happens and what the future might have in store for next-generation pain medicines

References:

Treating Pain without Pills - Scientific American 

Opioid crisis: powerful but non-addictive drug could replace morphine | New Scientist 

The new pain treatments that may finally stem the need for opioids | New Scientist 

Body’s 'Natural Opioids' Affect Brain Cells Much Differently than Morphine | UC San Francisco (ucsf.edu) 

Frontiers | Endogenous opioid systems alterations in pain and opioid use disorder (frontiersin.org) 

Scientists Take Another Step Toward Creating Better Pain Medications | Newsroom (unchealthcare.org) 

Endocannabinoids and exercise - PMC (nih.gov) 

Wired to run: exercise-induced endocannabinoid signaling in humans and cursorial mammals with implications for the ‘runner’s high’ | Journal of Experimental Biology | The Company of Biologists 

Anthrax toxins regulate pain signaling and can deliver molecular cargoes into ANTXR2+ DRG sensory neurons | Nature Neuroscience 

Mutations in SCN9A, encoding a sodium channel alpha subunit, in patients with primary erythermalgia | Journal of Medical Genetics (bmj.com) 

If you have chronic pain, anxiety or stress, the parasympathetic nervous system is probably the most important part of your nervous system. Learn how it works and how it can be used to calm you down, reduce your anxiety and maybe even help you to live better with chronic illness. Plus, a short meditation to help us practice!

How does the brain process pain and what factors can change your experience of pain? Continuing from last week's episode, we learn more about nocireceptors (pain receptors), and how emotion, stress and thought can alter the processing of pain in the brain. Also, some feedback from a user of the Chronic Insights symptom diary app, and a poem about living with chronic pain.

Studies show that learning how chronic pain works can actually make it easier to cope? The first of a series of episodes explaining the science behind pain, chronic pain, why pain goes wrong, why it doesn't go away, how emotion, anxiety, expectations and other things can affect how we experience chronic pain, and what we can do to feel more empowered over it. Plus, some updates about the Chronic Insights symptom diary, and my upcoming book Poetry for Spoonies.

A great class lecture for chronic pain patients:

Explain Pain | Mid-Columbia Medical Center (mcmc.net) 

Studies which showed Pain Neuroscience Education (PNE) did NOT help:

Effect of Additional Pain Neuroscience Education in Interdisciplinary Multimodal Pain Therapy on Current Pain. A Non-Randomized, Controlled Intervention Study - PubMed (nih.gov) 

Studies which showed that it DID help: 

Embedding pain neuroscience education in the physical therapy management of patients with chronic plantar fasciitis: a prospective case series - PubMed (nih.gov) 

[Effectiveness of pain neuroscience education in patients with fibromyalgia: Structured group intervention in Primary Care] - PubMed (nih.gov) 

Pain Neuroscience Education Combined with Therapeutic Exercises Provides Added Benefit in the Treatment of Chronic Neck Pain - PubMed (nih.gov) 

Effects of combining manual therapy, neck muscle exercises, and therapeutic pain neuroscience education in patients with migraine: a study protocol for a randomized clinical trial - PubMed (nih.gov) 

Effectiveness of a structured group intervention based on pain neuroscience education for patients with fibromyalgia in primary care: A multicentre randomized open-label controlled trial - PubMed (nih.gov) 

Effect of Pain Neuroscience Education Combined With Cognition-Targeted Motor Control Training on Chronic Spinal Pain: A Randomized Clinical Trial - PubMed (nih.gov) 

[Effectiveness of education based on neuroscience in the treatment of musculoskeletal chronic pain] - PubMed (nih.gov) 

The effectiveness of training physical therapists in pain neuroscience education on patient reported outcomes for patients with chronic spinal pain: a study protocol for a cluster randomized controlled trial - PubMed (nih.gov) 

Pain Neuroscience Education and Physical Therapeutic Exercise for Patients with Chronic Spinal Pain in Spanish Physiotherapy Primary Care: A Pragmatic Randomized Controlled Trial - PubMed (nih.gov) 

Pain Neuroscience Education Plus Usual Care Is More Effective Than Usual Care Alone to Improve Self-Efficacy Beliefs in People with Chronic Musculoskeletal Pain: A Non-Randomized Controlled Trial - PubMed (nih.gov)