Welcome!

Thanks for being here.

26 Years In: Lessons and Resources I’ve Learned Along the Way: Part 2

—

by

Abby Poulter

Finding the right resources can be just as challenging as managing chronic illness itself. The tools, providers, organizations, and support shared here aren’t meant to be exhaustive or prescriptive. They reflect what I haev learned through my experiences, research, and advocacy. This is meant to be a starting point and adding additional resources is the…

A continuation from Lessons Learned Part 1.

Learning How to Find and Use Resources

One of the biggest challenges I’ve learned is that finding resources is a skill in itself. Early on, I assumed there would be a roadmap, someone to hand me the right information at the right time. In reality, learning where to look, who to trust, and what applies to me took time.

Not every resource is accurate, helpful, or relevant, and not everything needs to be consumed at once. Over the years, I’ve learned to approach information thoughtfully, to research, ask questions, and use resources as support rather than instruction. What helped most was learning to filter information through my own experience and care team, instead of taking everything at face value.

The resources below aren’t everything I’ve encountered, but they are ones I’ve personally used, trusted, and returned to over time. Some come directly from my own experience, while others have been shared by people I’ve known and trusted for years, individuals who also live with chronic illness and understand its complexities. This list includes a mix of specific resources, such as medical practices, physicians, and organizations, as well as tools and items that may be supportive or worth exploring. Take what’s helpful, leave what isn’t, and trust yourself along the way.

If you have reputable resources, organizations, or providers that have supported you along the way, I always welcome thoughtful additions and shared recommendations! I will also add all of these resources to my linktree and share in my Instagram bio.

Resources by Illness (My Core Co-Morbidities)

  1. Complex Regional Pain Syndrome (CRPS)/Chronic Pain
    • Pain Management Specialists and Clinics, Neurologists, and Other Providers
      • Mayo Clinic (Rochester, MN, Jacksonville, FL, Phoenix, AZ): offers multidisciplinary pain management, neurology, and headache care with integrated teams
      • Cleveland Clinic: known for comprehensive pain programs, neurology, and headache specialty clinics
      • Riverhills Neuroscience (Cincinnati, OH): features neurologists, pain specialists, and physiatrists for integrated CRPS care
      • The Spero Clinic (Fayetteville, AR): focuses on restoring immediate normal flow, tone, and function, to the vagus nerve
      • Delaware Valley Pain & Spine Institute (PA and NJ): full-service center focused on CRPS treatment
      • Barolat Neuroscience (Denver, CO): pioneer in spinal cord stimulation and is one of the largest in the country (my surgeon)
      • Pascal Health Institute (Cary, NC): known for Dr. Pascal’s unique, advanced CRPS Method, accepting patients at specific times
      • Colorado Pain Care (Dr. Jason Krutsch in Denver, CO)
      • Denver Pain Management Clinic (Dr. Andrew Hong in Denver, CO)
      • CRPS Treatment Italy (Vicenza, Italy): newer treatment of Neridronate IV infusions
      • Mike High Regenerative and Pain Therapy (Dr. Robert Brown in Denver, CO)
      • UCHealth Neurology Clinic (Dr. Cori Millen in Denver, CO): Headache and Pain Specialist
      • Colorado Neurology Specialists (Dr. Simon Oh in Denver, CO): Neurologist with a focus on neuromuscular
    • Nonprofit Organizations and Educational Resources
      • RSDSA (Milford, CT): a leading nonprofit for CRPS education, advocacy, research, funding, and patient support
      • RSD Foundation (Tampa, FL): International research foundation dedicated to educating and researching CRPS/RSD
      • American Academy of Pain Medicine (AAPM): Helpful for understanding evidence-based pain management and identifying pain specialists
      • American Chronic Pain Association (ACPA): self-help and peer support
      • U.S. Pain Foundation (Hartford, CT): created by people with pain for people with pain; educating on CRPS, headaches/migraines, MS, fibromyalgia, Arthritis, Cancer Pain, Lupus, and more
        • Nonprofit Organizations and Educational Resources
          • Treatments, Medications, and Therapies
            • Medical Treatments: Sympathetic nerve blocks, peripheral nerve stimulation, spinal cord stimulation, deep brain stimulation
            • Medications: NSAIDs, anticonvulsants (gabapentin, lyrica), antidepressants (cymbalta, amitriptyline), corticosteroids (prednisone), biphosphonates, topical agents (lidocaine), opioids, IV infusions (ketamine, neridronate), muscle relaxants, low dose naltrexone
            • Therapies: physical therapy/occupational therapy, scrambler therapy, heat therapy, desensitization therapy, TENS, biofeedback, pain pumps
  2. POTS and Dysautonomia
    • Clinics, Dysautonomia Specialists, and Clinics
      • Vanderbilt Autonomic Dysfunction Center (Nashville, TN): one of the leading autonomic centers for diagnosis and treatment of POTS and related conditions.
      • Mayo Clinic: provides autonomic testing, cardiology, neurology, and multidisciplinary care.
      • Denver Neurological Clinic (Denver, CO): evaluates overlap between the brain, the ear, dizziness, and migraines
      • The POTS Treatment Center (Dallas, TX): dedicated to treating patients worldwide who suffer from POTS Syndrome, Long Covid and Dysautonomia by focusing on imbalance of the Autonomic Nervous System
      • Axon Integrative Health (Denver, CO): chiropractic neurology, functional medicine & neurometabolic/human performance
      • National Organizations and Education Hubs
        • Dysautonomia International: the most widely recognized organization for dysautonomia education, diagnostic criteria, research, and physician directories
        • The Dysautonomia Project (Clearwater, FL): dedicated to helping healthcare professionals, patients and communities learn about dysautonomia. 
        • The Mississippi Dysautonomia Center: non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, education, public awareness and patient empowerment programs.
        • Standing Up to POTS: patient-centered education, advocacy, and practical guidance for living with POTS
      • Treatments, Medications, and Therapies
        • Medical Treatments: N/A
        • Medications: beta blockers (propranolol, metoprolol, bisoprolol), ivabradine, calcium channel blockers (verapamil), volume-expanding agents (clonidine), cholinesterase inhibitors (pyridostigmine bromide), mineralocorticoids, vasoconstrictors, other options for brain fog and fatigue available
        • Therapies: IV (saline) infusions, nutritional/diet changes, lifestyle changes, electrolyte options (Buoy drops, Liquid IV, LMNT), salt intake
  3. Gastroparesis, IBS, and GI Motility/Pelvic Floor Dysfunction
    • Gastroenterologists, Motility Specialists, and Clinics
      • South Denver Gastroenterology (Denver, CO): leading clinic with for locations in Denver; Dr. Cary Patt is a specialist in GI disorders that may be connected to other illnesses (EDS, MCAS, POTS)
      • Enterra Medical (Device company): first and only implantable device for Gastroparesis
      • Oshi Health (virtual first company): whole person, collaborative care for many GI conditions
      • Temple Health (Dr. Henry Parkman; ): world-renowned gastroparesis specialist
      • John Hopkins Medicine (Maryland, many other locations)
      • Mayo Clinic: Top motility clinic
      • Cleveland Clinic (Dr. Michael Cline): world-renowned GI specialist
      • Gatrointestinal Motility Lab (Mass General, Boston, MA)
      • Neurogastroenterology and Motility Center (UPMC; Pittsburgh, PA)
    • Patient Advocacy and NPOs
      • International Foundation for Functional Gastrointestinal Disorders (IFFGD): education, research, support for chronic GI disorders
      • American Gastroenterological Association (AGA): focus on advancing the field of GI through funding, research, and educational tools
      • G-Pact (Etters, PA): supporting individuals affected by gastroparesis and related conditions
      • Gastroparesis Awareness Fund
      • Treatments, Medications, and Therapies
        • Medical Treatments: Feeding tubes, Botox, G-POEM, Pyloroplasty, gastric stimulator, Pylorectomy
        • Medications: prokinetics (reglan, gimoti nasal spray), antiemetics (zofran, Benadryl, Phenergan), motilium, antibiotics (erythromycin), serotonin antagonists (Motegrity, zelnorm), cholinergic agonists (bethanechol, neostigmine), laxatives (amitiza, linzess), miralax, bisocodyl, magnesium citrate, milk of magnesia, bowel preps
        • Therapies: IV infusions, hydration and salt intake, diet changes, lifestyle changes, physical therapy, colon hydrotherapy
  4. Vascular Conditions (May Thurner Syndrome, Jugular Vein Compression, etc)
    • Vascular Specialists, Clinics, and Surgeons (includes Interventional Radiology)
      • Minimally Invasive Procedure Specialists (MIPS; Denver, CO): specialized in using image-guided techniques to treat complex vascular disorders
      • Vascular Institute of the Rockies (Denver, CO): vascular treatment and surgical options based on statistically proven safe and effective practices
      • Denver Sinus Care (jugular compressions, CSF leaks; Denver, CO): restoration of vascular insufficiency/venous flow complexities
      • Diagnostic Imaging Centers
        • MIPS
        • Artemis
        • Swift Institute
        • Inova
      • Treatments, Medications, and Therapies
        • Medical Treatments: stent placement/angioplasty, embolization, sclerotherapy, blood clot removal, IVC filter
        • Medications: anticoagulants (heparin, warfarin), thrombolytics)
        • Therapies: compression socks and clothing, thrombolysis
      • Important note: specialization matters here, not all providers are equipped for rare compressions
  5. Connective Tissue Disorders and EDS
    • Rheumatologists, Geneticists, Allergists, Immunologists, EDS-Aware Specialists
      • The Spero Clinic (Fayetteville, AR): treatment is focused on supporting the central nervous system and optimizing the body’s ability to heal from within
      • The EDS Clinic (Denver, CO): evaluations for the diagnosis and treatment of Ehlers Danlos Syndrome with EDS specialists
      • Gates Institute (CU Anschutz, Aurora, CO) : robust research and clinical program focused on EDS
      • Carle Health (Dr. Laukaitis; Urbana, IL): elite geneticist specializing in various EDS types, including brittle cornea and vascular EDS (VEDS)
      • Invitae: genetic testing
      • Ambry Genetics
      • Blueprint Genetics
    • Educational Organizations
      • The Ehlers Danos Society: finding knowledgeable healthcare professionals for EDS and HSD (improve access to care, we offer a global directory of providers)
      • The Fitness Lab: physical therapists with a personalized approach to EDS care
    • Treatments, Medications, and Therapies
      • Treatments: surgery (severe instability),
      • Medications: pain management (NSAIDs, lidocaine, opioids), muscle relaxants, SNRIs (Cymbalta, venlafaxine), anticonvulsants (gabapentin, lyrica), low-dose TCAs (amitriptyline), blood pressure assistance, calcium channel blockers for connective tissue
      • Therapies: physical/occupational therapy, bracing/orthotics, lifestyle and diet changes
    • Important note: Not everyone fits neatly into diagnostic boxes here; EDS and other connective tissue disorders are some of the most rare and challenging to diagnose
  6. Multi-Disease/Whole Body Illness (Co-Morbidities)
    • Spero Clinic (Dr. Katinka van der Merwe; Fayetteville, AR): treats linked conditions such as CRPS, EDS, Fibromyalgia, Long Covid, Dysautonomia, MCAS, Gastroparesis, etc
    • Center for Multi-System Disease (Dr. Jill Schofield; Denver, CO): evaluates links between CRPS, Dysautonomia, Long Covid, EDS, MCAS, Celiac Disease, Sjogren’s Syndrome, etc.
  7. General Chronic Illness Support
    • Mental Health Support and Therapy
      • SonderMind
      • Therapy Den
      • National Institute of Mental Health
      • Mental Health America
      • Lindner Center for HOPE
    • Support Groups
      • The Center for Chronic Illness
      • Patients Like Me
      • Global Autoimmune Institute
    • Advocacy Tools
      • Advocacy Denver
      • Chronic Disease Coalition
      • Patient Advocacy Foundation
      • The Arc of the United States
    • Educational Platforms/Organizations
      • The Center for Chronic Illness: promotes well-being and decreases isolation for those impacted by chronic illness through support and education
      • Chronic Care Collaborative
      • National Organization of Rare Disorders
    • Financial Services
      • Patient Advocacy Foundation Financial Resources Directory
      • PAN Foundation
      • National Disability Institute