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Chronic illness Resources

This resource page is a living list. I add to it as I find things worth sharing. Everything here is something I’ve read, used, watched, or honestly think is worth your time. No fluff, no filler.

Whether you’re newly diagnosed, a seasoned Spoonie, or a caregiver trying to be supportive, I hope something here helps.

💜— Lyn

This post contains affiliate links. If you purchase through my links I may earn a small commission at no extra cost to you. I only recommend products I actually use and trust. As always, please check with your care team before trying new tools — especially heat, cold, or any physical therapy modalities. What works for me may not be right for your specific conditions.

If you’re newly diagnosed or still chasing a diagnosis, start here. This is the “day one” list — the things I wish someone had handed me early on.

The Dysautonomia Project, 2nd edition — by Kelly Freeman, MSM, David S. Goldstein, MD, PhD, and Charles R. Thompson, MD — Written for patients, families, and clinicians to read together. If you buy one book, make it this one.
The Dysautonomia Project
Dysautonomia International
DINET (Dysautonomia Information Network)
Living Well with Orthostatic Intolerance: A Guide to Diagnosis and Treatment (A Johns Hopkins Press Health Book) — by Peter C. Rowe, MD
What Is Dysautonomia?

The umbrella term for autonomic nervous system dysfunction. If you’re trying to understand the big picture or explain it to someone else, start here.

Organizations & Websites

Dysautonomia International
DINET (Dysautonomia Information Network)
Cleveland Clinic & Mayo Clinic — clevelandclinic.org | mayoclinic.org
The Dysautonomia Project, 2nd edition — by Kelly Freeman, MSM, David S. Goldstein, MD, PhD, and Charles R. Thompson, MD — Written for patients, families, and clinicians to read together. If you buy one book, make it this one.
The Dysautonomia Project
Dysautonomia Youth Network of America, Inc.
Familial Dysautonomia Foundation, Inc.
The Mighty — A large digital health community where patients share personal essays and tips. You can filter by condition to find relevant stories.
What Is Dysautonomia?
NORD (National Organization for Rare Disorders) – Their mission is improving the health and well-being of people with rare diseases by driving advances in care, research, and policy.

Blogs

Chronically Salty — Focuses on the lifestyle aspect of dysautonomia, providing humor and relatable content for those navigating a “salty” life.
Better By the Beat — A well-regarded blog specifically focused on living with POTS. It offers practical advice on topics like “POTS-friendly” recipes and managing “brain fog.”

The most common form of dysautonomia — and one of the most misunderstood. These resources break it down clearly and compassionately.

Organizations & Websites

Standing Up to POTS — Research, patient support, and detailed guides on salt intake, compression, and exercise protocols.
Dysautonomia International — POTS-specific resources.
The Mighty — A large digital health community where patients share personal essays and tips. You can filter by condition to find relevant stories.
What POTS Feels Like

Books

POTS —Together We Stand: Riding the Waves of Dysautonomia — by Jodi Epstein Rhum — One of the most comprehensive guides for the POTS community.
The Dysautonomia Project, 2nd edition — by Kelly Freeman, MSM, David S. Goldstein, MD, PhD, and Charles R. Thompson, MD — Written for patients, families, and clinicians to read together. If you buy one book, make it this one.
The Complete POTS & Dysautonomia Handbook: A Guide to Diagnosis, Treatment, and Daily Management of Postural Orthostatic Tachycardia Syndrome — by Clemence Jemma Scott
The POTS Compass — by Donna Stradley. A more recent resource focused on empowering strategies and navigating the complexities of the healthcare system.

Blogs

Better By the Beat — A well-regarded blog specifically focused on living with POTS. It offers practical advice on topics like “POTS-friendly” recipes and managing “brain fog.”

Small Fiber Neuropathy is small enough to go undetected on most standard tests, which is why so many of us get dismissed before we get answers. These resources really help capture the nuance — the stuff you only understand once you’ve actually lived it.

Organizations & Websites

Foundation for Peripheral Neuropathy (FPN) — Premier resource for all neuropathy types with a dedicated SFN section.
Neuropathy Commons — Run by Dr. Anne Oaklander at Harvard/Mass General Brigham — Evidence-based, patient-focused, specifically designed for SFN. (Dr. Oaklander is one of my specialists.)
Dysautonomia International — Related Conditions page explains the connection between SFN and dysautonomia.

Books

Small Nerves, Big Problems — by Todd Levine MD et al. — The clinical resource for SFN patients who want the full picture.
The Dysautonomia Project, 2nd edition — by Kelly Freeman, MSM, David S. Goldstein, MD, PhD, and Charles R. Thompson, MD — Written for patients, families, and clinicians to read together. Includes the skin biopsy process and how SFN leads to autonomic failure.
Living with Small Fiber Neuropathy Book: Understanding, Managing, and Thriving Beyond the Pain — by Antoine Chamberie, LC
Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop (American Academy of Neurology Press Quality of Life Guides) — by Norman Latov, MD, PhD

Community

r/SmallFiberNeuropathy — Research-heavy. Members share studies, biopsy results, treatment protocols including IVIG.
Foundation for Peripheral Neuropathy Virtual Support Groups — Moderated virtual meetings for patients and caregivers.

Delayed gastric emptying. Eating becomes a full‑time job — these resources get it and won’t minimize your symptoms

Organizations & Websites

IFFGD — International Foundation for Gastrointestinal Disorders — Top-tier resource for motility testing, diet modifications, and treatment options.
G‑PACT — Gastroparesis Patient Association for Cures and Treatments — Patient-centric resources, nutritional support, and advocacy.
Cleveland Clinic — Dedicated motility center.
Mayo Clinic —Dedicated motility center
Mayo Clinic’s Gastroparesis Diet Guidelines
Oley Foundation — The Oley Foundation is a non-profit home nutrition therapy community and advocacy group whose mission is to enrich the lives of those living with home IV nutrition or tube feeding through advocacy, education, community and innovation.

Books

Eating for Gastroparesis — by Crystal Zaborowski Saltrelli, CHC — The gold standard for managing gastroparesis through diet.
Living (Well!) with Gastroparesis — by Crystal Saltrelli, CHC — Lifestyle, management, tips, and recipes.
The Gastroparesis Cookbook — by Karen Frazier — 102 recipes designed for gastroparesis

Community

G-PACT Support Groups — Specific support for patients and family members.

Pain is its own condition — physical, neurological, emotional, and exhausting. These resources take it seriously.

Organizations & Websites

U.S. Pain Foundation — Advocacy, education, and the Pain Connection support group network.
American Chronic Pain Association (ACPA) — theacpa.org — One of the oldest and most respected chronic pain organizations.
Tame the Beast — Pain neuroscience in plain language.
Curable App — Pain science education combined with behavioral tools.
Pain Psychology Center — Directory of therapists specializing in chronic pain.

Books

The Way Out — by Alan Gordon, LICSW & Alon Ziv— The primary text for Pain Reprocessing Therapy (PRT).
Explain Pain — by David Butler & Lorimer Moseley — The gold standard text for pain science.
The Pain Management Workbook — by Rachel Zoffness — CBT-based, hands-on, actionable.
Living Beyond Your Pain — by JoAnne Dahl, et al — Uses ACT to help build a meaningful life alongside pain.
Managing Pain Before It Manages You — by Margaret Caudill — Self-regulation skills for flares and long-term discomfort.

Community

Pain Connection — U.S. Pain Foundation’s support group network.
Chronic Pain Anonymous (CPA) — 12-step style program focused on emotional acceptance of chronic pain.
The Mighty (Chronic Pain) — Community-driven, great for caregivers too.

Not tired — fatigued. These resources explain the difference and help you protect your spoons without guilt.

Organizations & Websites

Solve ME/CFS Initiative — Leading research and advocacy for ME/CFS.
ME Association — Comprehensive patient guides and research updates on myalgic encephalomyelitis
National Fibromyalgia Association — Education, advocacy, and support.

Key Concepts

Spoon Theory — written by Christine Miserandino — The foundational language of the chronic illness community.
Post-Exertional Malaise (PEM) — Delayed worsening of symptoms that occurs after minimal physical or mental activity.

Chronic illness affects your mind as much as your body. These resources support the emotional, psychological, and trauma‑related sides of being sick.

Organizations & Websites

NAMI (National Alliance on Mental Illness) — Dedicated to building better lives for millions of Americans affected by mental illness. Includes a disabilities-specific resources page and therapist finder.
Mental Health America (MHA) — Community-based nonprofit dedicated to addressing the needs of those living with mental illness. Includes free mental health screenings.
ADAA (Anxiety & Depression Association of America) — Therapist directory, monthly webinars, and online support groups. Dedicated to prevention, treatment, and cure of anxiety and depressive disorders.
HelpGuide —Trusted, medically reviewed information for recognizing and managing anxiety, depression, PTSD, stress, grief, and more. Practical, accessible, and ad-free.
SAMHSA — The federal agency leading public health efforts for behavioral health. National Helpline: 1-800-662-4357 (free, confidential, 24/7).
The Center for Chronic Illness — Support groups and counseling resources focused on the emotional impact of life-altering diagnoses.
Mindfulness for Health (Breathworks) — Founded by Vidyamala Burch, who lives with chronic pain. Courses on uncoupling physical sensation from emotional suffering.
Psychology Today Directory — Filter by ‘Chronic Illness’ under Specialties..

Therapeutic Approaches

ACT (Acceptance and Commitment Therapy) — Helps you move toward your values even in the presence of pain or limitation.
Pain Reprocessing Therapy (PRT) — Retrains the brain to interpret body signals more accurately.
Health Psychology — Look for providers specifically labeled Health Psychologists.
Medical Trauma-Informed Therapy — For processing difficult diagnoses, invasive testing, and interactions with skeptical providers.
Vagus Nerve Stimulation Exercises — Breathing patterns and self-regulation tools that work with your autonomic nervous system

Books

The Body Keeps the Score — by Bessel van der Kolk, MD — Essential for understanding how the autonomic nervous system stores stress.
Full Catastrophe Living — by Jon Kabat-Zinn — Foundational text on using mindfulness to navigate chronic pain without toxic positivity.
How to Live Well with Chronic Pain and Illness — by Toni Bernhard — Social isolation, guilt, and the behavioral side of being sick.
How to Be Sick — by Toni Bernhard — Finding peace and purpose when your physical life is limited.
The Happiness Trap — by Russ Harris — The leading book on ACT. Practical and accessible.
The Chronic Illness Workbook — by Patricia Fennell — Structured tool moving through the Fennell Phases.
Chronic Resilience — by Danea Horn — Maintaining your sense of self when your body feels like it’s failing you.

Podcasts & Meditation Teachers

Tara Brach — Podcasts and guided meditations on mindfulness and radical acceptance. A go-to for the chronic illness community.
Jack Kornfield — jackkornfield.com — Podcasts and guided meditations on meditation and emotional healing.
Greater Good Science Center — Based at UC Berkeley. Science-based insights for a meaningful life — articles, practices, and research on happiness, resilience, and emotional well-being.

Apps

Curable — Pain science education combined with behavioral tools.
Insight Timer — Yoga Nidra and NSDR tracks. Great for days when you’re too symptomatic to move.
The Tapping Solution — EFT for managing anxiety during high-heart-rate flares.
Calm — The #1 app for sleep, meditation and relaxation
Headspace — the leading everyday mental health companion, helping people care for their minds anytime, anywhere.

Movement with chronic illness isn’t about pushing through — it’s about working with your body, not against it.

Organizations & Websites

NCHPAD MENTOR Program — Worth a special callout. MENTOR (Mindfulness, Exercise and Nutrition to Optimize Resilience) is a FREE, virtual, 8-week wellness program designed specifically for people with disabilities and chronic conditions. Covers adapted exercise, mindfulness, nutrition, and health coaching. Contact: nchpad@uab.edu | 866-866-8896.
Standing Up to POTS — Detailed guides on safe exercise protocols for dysautonomia including the Levine Protocol.
Spaulding Adaptive Sports Center — Adaptive sports and fitness programs for people with physical disabilities and chronic conditions. Excellent virtual program.
Move United — On-demand virtual workouts including adaptive stretching options. OnDemand — Move United

YouTube

SeniorShape Fitness — Don’t let the name fool you. PT-recommended, low impact, perfectly suited for chronic illness and disabilities. One of the best kept secrets out there.
SeniorShape 10-Minute Stretch Videos — Video 1 | Video 2
Yoga with Adriene — Videos specifically for when you’re sick, fatigued, or housebound. Floor-based and chair options available.

Journals

Habit Nest Journals —Exercise, health, wellbeing, gratitude, yoga, and Pilates journals. (I own several.)
Erin Condren — Beautiful, customizable planners, notepads, journals and accessories. Perfect for tracking symptoms and appointments. (I have tons of her stuff – love it!.)

Key Concepts

CHOP Protocol, Dallas Protocol, and The Levine Protocol — Structured, gradual exercise programs developed specifically for POTS patients. Ask your cardiologist or PT.
Pacing — Not giving up — strategizing.

Food is complicated when your body doesn’t cooperate. These resources focus on eating for your conditions — not diet culture.

Organizations & Websites

IFFGD — International Foundation for Gastrointestinal Disorders — Top-tier resource for motility testing, diet modifications, and treatment options.
G‑PACT — Gastroparesis Patient Association for Cures and Treatments — Patient-centric resources, nutritional support, and advocacy
A Practical Guide to Lifestyle & Diet Changes for Managing POTS by Buoy, the makers of Buoy Hydration Drops. Great information.

Books

Eating for Gastroparesis — by Crystal Zaborowski Saltrelli, CHC — The gold standard for managing gastroparesis through diet
Living (Well!) with Gastroparesis — by Crystal Saltrelli, CHC — Lifestyle, management, tips, and recipes.
The Gastroparesis Cookbook — by Karen Frazier — 102 recipes designed for gastroparesis.

Key Concepts

Low FODMAP Diet — Often helpful for motility issues and gut symptoms.
Salt & Fluid Loading for POTS — An actual treatment protocol, not a diet trend. Your autonomic specialist should guide this one.

Loving someone with a chronic illness is its own kind of hard. These resources help caregivers support without burning out.

Organizations & Websites

Family Caregiver Alliance (FCA) — Fact sheets on caregiving and depression, self-care guides, and webinars.
Caregiver Action Network (CAN) — Caregiver Help Desk, forums, and community connection.
The Well Spouse Association — Specifically for partners of the chronically ill. Support groups and the Mainstay newsletter.
Take Them A Meal — Simple tool for friends to coordinate meal delivery

Books

Passages in Caregiving: Essential Strategies for Caring for a Loved One — by Gail Sheehy
Passages in Caregiving: Turning Chaos into Confidence — by Gail Sheehy
Mainstay: For the Well Spouse of the Chronically Ill — by Maggie Strong

Tools & Concepts

Spoon Theory — written by Christine Miserandino — The foundational language of the chronic illness community. Share this with anyone who doesn’t get it yet.
The Ring Theory (Comfort In, Dump Out) — from Mental Health @ Home helps caregivers understand where to direct their own frustrations so they don’t inadvertently overwhelm the patient.
The Mighty – chronic illness – resources for caregivers

The roadmap I wish someone had handed me when I left my job and had no idea where to start.

Organizations & Websites

The Sleepy Girl’s Guide to Social Security Disability — The Bible for the chronic illness community. Step-by-step roadmap for POTS, ME/CFS, and related conditions.
How to Get On — Disability Library with actual successful application examples from people with dysautonomia.
Social Security Intelligence — Run by former SSA employees. How the SSA views brain fog, chronic fatigue, and syncope.
Nolo’s Guide to Social Security Disability — Blue Book listings and how to equal a listing when your condition isn’t listed directly.
Patient Advocate Foundation (PAF) — Legal aid, case managers, and financial assistance navigation.
NOSSCR — Best place to find a disability attorney. Most work on contingency.
HealthWell Foundation — Financial assistance and navigation support
Disability Secrets

Key Documents

Residual Functional Capacity (RFC) Form — from DisabilitySecrets.com. The most important document in your application. Must be completed by a specialist.
Attending Physician Statement (APS) — from the Department of Labor. Dysautonomia International provides templates and guidance on wording to meet SSA’s legal language.

Many of us don’t have just one diagnosis. These conditions frequently travel together.

Ehlers-Danlos Syndrome (EDS) & Hypermobility

The Ehlers-Danlos Society — Essential for understanding the ‘trifecta’ of EDS, POTS, and gastroparesis.

Mast Cell Activation Syndrome (MCAS)

The Mast Cell Disease Society — Patient education, physician finder, and research updates.
Mast Cell 360 — Practical, patient-focused resource for MCAS management.

Autoimmune Conditions

American Autoimmune Related Diseases Association (AARDA) — Advocacy, education, and physician resources.

Guillain-Barré Syndrome (GBS) & CIDP (In honor of my mom💜)

GBS | CIDP Foundation International — Support groups, physician finder, and patient guides.

Chronic Fatigue Syndrome / ME

Solve ME/CFS Initiative — Leading research and advocacy.

Fibromyalgia

National Fibromyalgia Association — Education, advocacy, and support.

Complex Regional Pain Syndrome (CRPS)

RSDSA — The go-to resource for CRPS patients and caregivers.

These are things I actually use. Everything here has earned its spot.

🔥 Flare Kit

SacksyThyme Microwave Heating Pad – flaxseed filled, moist heat, made in the USA by a woman-owned small business whose founder created it for her own chronic pain.
iEco Cold Massage Roller Ball— perfect for ice massage without having to hold an actual ice cube. Game changer for nerve pain and tight muscles
Fitballz Massage Ball Set — tennis ball massage, lacrosse ball, peanut roller — everything Spaulding taught me to use, in one set
OPTP PRO-Roller Foam Roller — soft density, which matters when you’re already in pain. Not the punishing kind
Gaiam Exercise Ball — gentle movement, active sitting, core work on good days. By the way, the ball is also great to use for gentle stretching as well
Sonno Zona Weighted Blanket
Sealy Electric Throw Blanket

💙 POTS Survival Kit

🪴 Gastroparesis Kit

🧤 SFN Kit

✈️ Travel Kit

🛡️ Safety Kit

🏠 Daily Living Kit

Things I’ve found, loved, or just think are really cool. No particular rhyme or reason — just stuff worth knowing about.

Habit Nest Journals — Exercise, health, wellbeing, gratitude, yoga, and Pilates journals. (I own several.)
Erin Condren — Beautiful, customizable planners, notepads, and journals. Perfect for tracking symptoms and appointments. (I have tons of her stuff.)
Stickman Communications — Communication cards and badges that help you explain your needs without using your precious energy.
The Tapping Solution — app for managing anxiety and flares.
Curable — curablehealth.com – Pain science meets behavioral tools. I
InsightTimer— Yoga Nidra and NSDR tracks for total rest.