Diagnosed with EDS, Now What?

By Amy L. Schulze

This is a set of advice that was compiled by a group of patients. It is meant
to help with issues other than the formal medical advice you will receive from
various doctors and therapists. Do not take this advice for something other than
friendly advice from those that have more experience than you do right now.

When a medical students is in school they are taught, “When you hear
the sound of hooves, think of horses not zebras.” Well we are the
Zebras. We look like many, many other common and not so common
conditions.

Medical Community

At the beginning you might feel that the medical appointments might never end.

If you are an adult and recently diagnosed, you might feel many different
emotions such as relief that you are not crazy! Something is wrong despite what
other doctors might have said to you for years.

It is important to let all of your doctors know about the diagnosis, be prepared
that some of them might not know what EDS is and give you incorrect
information.

Some doctors do not like to be “educated” by their patients. If you are having a
difficult time dealing with a doctor’s unwillingness to accept and learn about this
new diagnosis, it might be time to find a new doctor.

If they are open, leading them to websites such as www.cincinnatichildrens.org
where they can look up EDS written by Dr. Tinkle might help.

You also might consider finding doctors that are willing to admit that they don’t
know “everything” but are willing to learn.

One of the realizations that will come after some time is that there is no “magic”
solution. No matter how many doctors your see, or how hard you try, none of
them will be able to take away all of the symptoms of EDS.

Since many of us “Zebras” may already have a strained relationship with the
medical community, it might take some time to come to grips with the fact that
yes you finally have an answer to what is wrong with you, but unfortunately,
there is no cure. Management of symptoms is the key.

Emotional Side of the Diagnosis

One of the difficult aspects of this syndrome and a late diagnosis is that friends
and relatives around you might not have realized the amount of pain and
discomfort you have endured prior to your diagnosis, therefore, they might find it
difficult to understand why you are running to the doctor all of a sudden.

EDS can be difficult to explain and understand so give them and yourself time to
digest this information.

While it is tempting to spend hours looking up EDS on the computer and do lots
of research, try to bear one thing in mind-you are the same person you were
prior to diagnosis. You are not broken. This is just the way your genes express
themselves.

It also might be tempting to ignore or wish this diagnosis away.

Denial is more than a river in Egypt.

Don’t be surprised if you or your loved ones want to stay in this state for a
while. “But you have been fine all of your life! Why are you sick now?” Or “But
you don’t look sick!”

Many people have said that getting a life long diagnosis causes people to go
through a grieving process. We grieve over the future we thought we would
have. We grieve over the fact that there is no cure. We grieve over the fact
that we will have to deal with medical issues for the rest of our lives.

There are groups and websites that you can join to help you along the way.
Facebook is one resource that many Zebras have turned to for daily contact and
friendship of others that understand EDS. You can look up some of them, but

here is a very short list:

*Zebras for Life”

*Ehlers Danlos Awareness”

*EDS Fight for a Cure”

“EDS Teens”

All of the above groups are closed. You will need to ask to join. If you have
trouble joining a group, please contact me at caschulze@cinci.rr.com

Ehlers-Danlos National Foundation is a group you may join that has many
resources and guides to help. Once you join you can become part of “Inspire”
an on line group.

There is a local support group called the Cincy Zebras. We meet about every
three months. Meetings are open to all that are affected by EDS. It has been
very healing to me to meet others that are going through the same struggle.

Other groups in other cities are listed on the www.edsawareness.com web site.

One key for survival during this beginning phase is to realize that you are not
alone.

Not everyone in your life will take this diagnosis with open arms. Be patient with
yourself and with them.

Physical Support

One of the most difficult things for some of us to grasp is that we might need
some help from time to time. You might be very used to “getting by” and dealing
with pain by ignoring it.

There is a legitimate reason for your pain and you might consider paying
attention to your body.

There are many ways to one thing, for instance, laundry. You might consider
using a reaching tool to get the clothes out of the washer or dryer.

A different idea might be using a basket on wheels to carry the clothes to the
machines.

Better yet a way to do laundry might be getting a machine that washes and dries
the clothes all in one thus eliminating the need to deal with wet clothes.

Occupational therapists can be a great resource to help think of ways to help
protect your joints.

Consider hiring an OT to come to your home to do an evaluation of the
environment. There can be several simple, low cost things you can change in
the house that will save your energy and keep you from injury.

One such OT that is familiar with EDS is Marnie Renda. You can contact her by
her web site at www.rebuildindependence.com

There is a fine line between bracing and keeping strong. You might not have
realized that all of these years you have been dislocating or subluxing joints.

For some people with EDS, it actually might feel good to do so. Try not to
hyper-extend any of your joints. Over hyper-extension can lead to a lot of pain
later.

There are many types of braces that can keep the joints in place and a physical
therapist or OT can assist with specific recommendations.

Dr. Tinkle’s books are a good source to help understand concepts like a “pain
hangover”.

Basically when we do too much and suffer the next day or the day after with
pain.

Other Resources:

Center for Ehlers Danlos Syndrome Alliance website: www.cedsa.org

Issues and Management of Joint Hypermobility: A Guide for
the Ehlers-Danlos Syndrome Hypermobility Type and the
Hypermobility Syndrome by Dr Brad Tinkle

Joint Hypermobility Handbook- A Guide for the Issues &
Management of Ehlers-Danlos Syndrome Hypermobility Type
and the Hypermobility Syndrome by Dr Brad Tinkle

A Guide to Living with Hypermobility Syndrome: Bending
Without Breaking by Isobel Knight

The problem with books with research is that they are outdated by the
time of publication. You really need to do your homework on line to
find current research.

The horrible part about research and EDS is that we are considered
an “Orphan Disease” meaning there is little funding for research.

Most doctors like to base their treatment plan for patients on research
and documentation. They are not going to find a ton of information
out there about EDS. The group is too small. It is going to take trial
and error and bold doctors to write up their experiences in order for
there to be adequate information about the basics of EDS.

The other problem with us Zebras is that no two are identical.
We all express this problem with different symptoms. When
you have treated one Zebra, you have treated one Zebra.

Get Webinar Announcements And Our FREE Guide

Support EDS Awareness

See all upcoming events

Upcoming and Previous Webinar Speakers

  • webinar-image

    Ross A. Hauser, MD
    10 Low-cost ways to improve symptoms of peripheral joint and spinal instabilities from hEDS, including brain fatigue, pain, POTS, MCAS and more.

    Learn More

  • webinar-image

    Bonnie Nasar RDN
    “How to Build an EDS Plate: Feel Better with Food”?

    Learn More

  • webinar-image

    Presenter: Jeannie Di Bon   MA PMA-CPT
    Title: “A Pain in the Hypermobile Neck”

    Learn More

  • webinar-image

    Presenter: Dr. Eli Penn
    Title: hEDS and the Gastrointestinal Tract

    Learn More

  • webinar-image

    Pradeep Chopra, MD
    “Management of Long Covid with EDS”

    Learn More

  • webinar-image

    Eloise Stager, LMT, CST-D
    “The Role of CranioSacral Therapy in
    Pain Management and ANS Regulation”

    Learn More

  • webinar-image

    Anne Maitland, M.D., Ph.D
    “Beyond allergies- mast cell activation diseases!”

    Learn More

  • webinar-image

    Clair Francomano MD
    “EDS and Hypermobility Spectrum Disorders – Overview of Diagnosis and Management”

    Learn More

  • webinar-image

    Sonny Mullen
    “A Guide to Medical Fundraising”

    Learn More

  • webinar-image

    Karina Sturm
    New Feature-Length Ehlers-Danlos Documentary
    “We Are Visible”

    Learn More

  • webinar-image

    Podcast Interview with Karina Strum
    ‘We are Visible’ Podcast Interview

    Learn More

  • webinar-image

    Andrea Julian
    “Starting and Maintaining a Successful Support Group”

    Learn More

  • webinar-image

    Maria Dastur, M.B.A.
    Organizing and Managing your Facebook and Social Media

    Learn More

  • webinar-image

    Alan G. Pocinki M.D.
    Sleep Disorders in EDS

    Learn More

  • webinar-image

    Ross A. Hauser, MD
    Consequences and Resolution of Joint Instabilities in H- EDS

    Learn More

  • webinar-image

    Bonnie Nasar RDN
    “Optimizing nutrition to Decrease Brain Fog, Fatigue, & Pain”

    Learn More

  • webinar-image

    Jeannie Di Bon. MA, PMA-CPT
    “How can Pilates help with my EDS Symptoms”

    Learn More

  • webinar-image

    Petra Klinge MD
    “Managing Life with Neurological Symptoms and EDS”

    Learn More

  • webinar-image

    Cathy L. Pederson, Ph.D
    “Understanding the Relationship between Chronic Illness and Suicide”

    Learn More

  • webinar-image

    Patrick Agnew DPM
    “Foot and Ankle Treatments for EDS”

    Learn More

  • webinar-image

    Susan Tran, PhD
    “Partnering with Families to Improve Functioning in Youth with EDS”

    Learn More

  • webinar-image

    Paolo A Bolognese, MD
    Chiari I Malformation, EDS, and Craniocervical Instability

    Learn More

  • webinar-image

    Lauren Stiles, JD
    “Understanding the Relationship Between Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome”

    Learn More

  • webinar-image

    Jordan Tishler, MD
    Medical Cannabis – Pain Relief for EDS

    Learn More

  • webinar-image

    Jeannie Di Bon, MA, PMA-CPT
    “Strengthen and Control Your Hypermobile Core With Pilates”

    Learn More

  • webinar-image

    John Ferman
    Online EDS Physician CME Education

    Learn More

  • webinar-image

    Anne Maitland, MD, PhD
    “Mast Cell Activation Disorder”

    Learn More

  • webinar-image

    Joshua Milner, M.D.
    “Update on Tryptase Research”

    Learn More

  • webinar-image

    Delia Chiaramonte, MD
    “Practical Stress Management: A Mind-Body Approach”

    Learn More

  • webinar-image

    Manu Sood, MD
    Katja Kovacic, MD
    “Gastrointestinal Motility Disorders and Cyclic Vomiting”

    Learn More

  • webinar-image

    Gisela Chelimsky, MD
    “Hypermobile EDS and Gastrointestinal Issues”

    Learn More

  • webinar-image

    Pradeep Chopra, MD
    “Management of complex pain in children and adults with EDS”

    Learn More

  • webinar-image

    Pradeep Chopra, MD
    “EDS Pain Management – Connecting the DOTS… part 3”

    Learn More

  • webinar-image

    Dr. Ajoy Sarkar
    “Ehlers-Danlos Syndrome Hypermobility Type in the UK: Missed or Just Misunderstood?”

    Learn More

  • webinar-image

    Sara Williams, PhD
    “Biofeedback: Training your Body to Relax”

    Learn More

  • webinar-image

    Jan Dommerholt, DPT
    “Physical Therapy for EDS – Part 2”
    Why does it hurt all of the time?

    Learn More

  • webinar-image

    Markus-Frederik Bohn, PHD
    “Tenascin X and Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. Marco Castori

    “Multidisciplinary Diagnostic and Management Approach to the EDS Patient”

    Learn More

  • webinar-image

    Professor Claude Hamonet and Dr. Isabelle Brock

    “A French Perspective on Ehlers Danlos”

    Learn More

  • webinar-image

    Dr. Delia Chiaramonte

    “An Integrative Approach to Pain Management”

    Learn More

  • webinar-image

    Dan Doherty — YouScript / Genelex Corp.

    “Pharmacogenetic Testing to Assess Altered Drug Metabolism”

    Learn More

  • webinar-image

    Dr. Alan Pocinki

    “Psychiatric Misdiagnoses in EDS: When is Anxiety not Anxiety?”

    Learn More

  • webinar-image

    Dr. William Ericson

    “Orthopedic Issues in the EDS Hand, Wrist and Arm”

    Learn More

  • webinar-image

    Dr. Norman Marcus

    “EDS & Pain”

    Learn More

  • webinar-image

    Dr. Lawrence Afrin

    “Mast Cell Activation Syndrome”

    Learn More

  • webinar-image

    Diane O’Leary, PhD

    “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients

    Learn More

  • webinar-image

    John Ferman and Deanna Hamm

    “World-Wide EDS Survey Results” by EDS Awareness
    (2544 respondents from 26 countries)

    Learn More

  • webinar-image

    Sara Williams, PhD

    “Cognitive Behavioral Therapy as a Coping Skill for EDS”

    Learn More

  • webinar-image

    Dr. Anne Maitland

    “Mast Cell Activation Syndrome in EDS Patients (Part 2)”

    Learn More

  • webinar-image

    Dr. Neil Schechter

    “Chronic Pain Hypermobile Children”

    Learn More

  • webinar-image

    Karen Foulks, OTR/CHT
    Jesse Garris, Silver Ring Splint Co.

    “Anatomy and SilverRing™ Splints for Ehlers-Danlos Hands”

    Learn More

  • webinar-image

    Dr. Holly Gilmer

    “Chiari Malformation in EDS”

    Learn More

  • webinar-image

    Dr. Blair Grubb

    “Postural Orthostatic Tachycardia Syndrome (POTs)”

    Learn More

  • webinar-image

    Trish Meegan, DPT, L, ATC

    “Physical Therapy for EDS: Including how your posture and thorax/ribcage affects your PT program”

    Learn More

  • webinar-image

    Dr. Patrick Agnew

    “Soft Tissue Surgery in Collagen Disease (for EDS Feet & Ankles)”

    Learn More

  • webinar-image

    Dr. Petra Klinge

    “Tethered Cord Syndrome in Ehlers-Danlos”

    Learn More

  • webinar-image

    Kelly Clancy, OT

    “New and Emerging Manual Therapy Approaches for EDS”

    Learn More

  • webinar-image

    Dr. Clive Bridgham

    “Chronic Pain Alternatives – with focus on inflammation and nutrition”

    Learn More

  • webinar-image

    Kevin Muldowney, MSPT

    “Physical Therapy Protocol for Ehlers-Danlos Syndrome” (using the new EDS Physical Therapy Book)

    Learn More

  • webinar-image

    Dr. Mitzi Murray

    “How, Why and When: Genetic Testing in EDS for the Non-Geneticist”

    Learn More

  • webinar-image

    Ellen Lenox Smith

    “Living Life Again with Dignity Using Medical Marijuana”

    Learn More

  • webinar-image

    Dr. Joan Stoler

    “Update on Complications and Rare Forms of EDS”

    Learn More

  • webinar-image

    Jennifer Ortiz, MPT, WSC

    “Physical Therapy for Sexual Dysfunction in EDS”

    Learn More

  • webinar-image

    John Ferman

    “Support Groups for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. John Mitakides

    “Musculoskeletal Headaches in EDS”

    Learn More

  • webinar-image

    Dr. Patrick Agnew

    “Foot & Ankle Issues with EDS”

    Learn More

  • webinar-image

    Dr. Hal Dietz

    “Connective Tissue Disorder Research”

    Learn More

  • webinar-image

    Dr. Theoharis Theoharides

    “Mast Cell Disorders”

    Learn More

  • webinar-image

    Dr. Brad Tinkle

    “Introduction to Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. Ronald Jaekle

    “Ehlers-Danlos and Pregnancy”

    Learn More

  • webinar-image

    Dr. Manu Sood

    “Gastrointestinal Disorders in EDS”

    Learn More

  • webinar-image

    Dr. Forest Tennant

    “Managing Centralized Intractable Pain in Ehlers-Danlos”

    Learn More

  • webinar-image

    Cynthia Allen, GCFP, STMI

    “The Feldenkrais Method”

    Learn More

  • webinar-image

    Dr. Mark E. Lavallee

    “Exercise is Medicine”

    Learn More

  • webinar-image

    John Ferman

    “Support Groups for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. Howard R. Epps

    “Orthopaedic Considerations in EDS”

    Learn More

  • webinar-image

    Jan Dommerholt, DPT

    “Physical Therapy for Ehlers-Danlos, Part 1”

    Learn More

  • webinar-image

    Dr. Henry Burkholder

    “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”

    Learn More

  • webinar-image

    Dr. Peter Byers

    “Vascular Ehlers-Danlos Syndrome / EDS type IV”

    Learn More

  • webinar-image

    Subinoy Das, MD, FACS, FARS

    “Sinus Care for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Frank Gargano PT, DPT, OCS, CIDN, MCTA, CWT

    “Dry Needling for EDS Pain Management: Can muscle performance be improved?”

    Learn More

  • webinar-image

    Diana Lebron, MD

    “Headaches and Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Shweta Dhar, MD, MS, FACMG

    “Coordination of Care in Adults with EDS”

    Learn More

  • webinar-image

    Kathleen Kane, ESQ

    “Applying for Disability”

    Learn More

  • webinar-image

    Dr. Richard Barnum
    “EDS and Psychiatric Illness Misdiagnoses”

    Learn More

  • webinar-image

    Dr. Anne Maitland
    “Mast Cell Activation Syndrome” Part 1

    Learn More

  • webinar-image

    Dr. Alan Pocinki
    “Chronic Pain, Poor Sleep, Depression, and Fatigue in EDS”

    Learn More

  • webinar-image

    Dr. Derek Neilson
    “Proving the obvious: Next Steps for the Demystification
    of the Ehlers-Danlos Hypermobility Type”

    Learn More

  • webinar-image

    Dr. Peter Rowe
    “Managing Orthostatic Intolerance in EDS”

    Learn More

  • webinar-image

    Prof Joel Lamoure, RPh., DD., FASCP
    “Medical Psychiatry in Pain Management”

    Learn More

  • webinar-image

    Eric Palmer, Orthotist
    “Bracing for EDS”

    Learn More

  • webinar-image

    Dr. John Mitakides
    “TMJ, Cervical Instability and EDS”

    Learn More

  • webinar-image

    Dr. Staci Kallish
    “Cardiac Manifestations in EDS”

    Learn More

  • webinar-image

    “EDS and Pain… Connecting the Dots” Part 2

    Pradeep Chopra, MD

    Learn More

  • webinar-image

    Presenter: Kevin Muldowney, PT Click here for a link to the announcement page Video link is on this page

    Learn More

  • webinar-image

    Presenter: Michael, Healy, DPT Click here for a link to the announcement page  Video link is on this page

    Learn More

  • webinar-image

    Dr. Kenneth Goldschneider
    Pain Management for EDS

    Learn More

Current Poll

How long until you received a proper diagnosis for EDS?

View Results

Loading ... Loading ...