Hypermobility/Ehlers-Danlos Syndrome Educational Handouts

Handouts created by Prof. Russek.

General Information

"Overview of Hypermobility Spectrum Disorder": Overview of HSD/hEDS signs and symptoms, diagnosis and PT management.

"Why Zebras are not Horses": leaflet explaining why people with HSD cannot be treated the same as everyone else.

HSD in children and adolescents: Overview of issues that can present in children and teenagers with HSD/hEDS.

Checklist of physical therapy treatment approaches for HSD/hEDS. It is sometimes helpful to know what a PT might be able to help with.

Surgical precautions for people with HSD/hEDS. A good discussion to have with your health care team before (and after) surgery.

List of HSD and POTS disability/accommodations resources. Resources with information about accommodations and disability for people with HSD/hEDS and POTS.

Self-Care Strategies

• Breathing.Breathing incorrectly can increase pain sensitivity, lumbar instability, headaches, jaw pain, and more.
• Posture. Good posture decreases strain on muscles and joints, and can prevent many problems.
• Joint Protection Strategies Learning to protect your joints and muscles is the first step towards healthier and stronger joints.
• Braces and Splints Braces and splints can help protect joints..
• Sleep Hygiene and Positioning. People with HSD often struggle to get a good night's sleep. There are strategies for positioning and protecting your body in bed to minimize pain, and sleep hygiene strategies to enhance sleep.
• Sleep Checklist. Sleep is critical to good health. This checklist of sleep promoting strategies can make sure you don't overlook any options.
• Headache Trigger Points. Many headaches are caused by trigger points, especially when muscles are overworked due to HSD.
• Headache Diary. A headache diary can help you identify what might be causing or aggravating your headaches.
• Temporomandibular Disorder (TMD).TMD, or TMJ problems, are common in HSD. There are many things you can do to care for your jaw.
• Upper cervical Instability. (UCI).People with hypermobility can sometimes have upper cervical instability. This handout is based on the recent article I co-authored. You can access the full article at Full text of UCI article. ..
• A very comprehensive patient guide to EDS cervical instability by EDSawareness.

Pain Management

• Pain self-care plan. Create a pain self-care plan to improve your pain management.
• Flare self-management plan. Create a flare management plan so you know what works when you have a flare.
• Heart-rate variability biofeedback. Biofeedback to increase activation of your parasympathetic nervous system can help quiet sensitive nerves and decrease pain.
• Free chronic pain management apps for teens There are several good pain self-management apps for teens that teach self-care principles in fun and age-appropriate ways.
• Nociplastic pain. Explains pain mechanisms, including nociplastic pain. If you want to harness the power of the mind-body connection, the Curable(TM) app provides evidence-based strategies and guidance. Note - patients can get 6 weeks of free access to Curable through a participating clinician. Contact Dr. Russek if you are interested: Lrussek@clarkson.edu.
• Topicals for pain management. Topicals can be a helpful addition to your pain management toolkit. Different topicals tend to work best for different problems, but trial and error is a good way to figure out what works for you.

Exercise Handouts

• Starting to Exercise Ideas. Some ideas to help you get started on exercise: how to deal with fatigue, pain, and fear of movement.
• Starting to Exercise Worksheet. It can be difficult to exercise or be active when you have HSD. This worksheet helps people identify and overcome roadblocks to being more active.
• Augmented Reality Activities for Fitness. Staying stable and strong doesn't need to be boring. Some augmented reality games, using free apps on your smartphone, tablet, or projected on your TV can be healthy and fun!
• Ways to keep younger kids active while having fun.

Managing Dysautonomia/Postural Orthostatic Tachycardia (POTS) and Mast Cell Activation Disorder (MCAD)

Note: This is information I share with my physical therapy patients to help them use self-care strategies. I am neither a physician nor researcher in the areas of POTS or MCAD. However, this information is based on published research when available. See links, below, for expert info about POTS and MCAD.
• Checklist for POTS self-care management.
• Flow charts for POTS management, including fatigue and sleep.
• Suggestions for managing MCAS.
• How to check your medications for (MCAS) sensitivities.

Helpful HSD/EDS Links for both patients and health care providers. (These are not handouts created by me, but are helpful links):

• The Ehlers-Danlos Society, Has many excellent resources for all forms of EDS. It also has a list of EDS healthcare providers, and support groups in the US. Based in the US.
• Hypermobility Syndromes Association (HMSA). This site has an excellent section for hypermobile kids and teens. Based in the UK.
• Educator's and Parent's Guide to Children with EDS, includes suggested modifications and accommodations for children in school.
• School Toolkit for HSD/EDS. Great ideas to help kids succeed in school.
• The Ehlers-Danlos Syndrome Toolkit. Information about diagnosis, management and available resources intended for primary care and other health providers.
• NASEM Report on HSD/EDS and disability. The National Academy of Science, Engineering and Medicine report that I helped create is a comprehensive overview of functional limitations that may lead to disability people with HSD/EDS. It also lists many potential accommodations.
• "Hypermobility Syndromes" booklet for patients. 27 pages discussing all aspects of hypermobility.
• Inspire is an on-line support network for people with EDS
• EDS-Support is another on-line support network for people with EDS

Postural Orthostatic Tachycardia Syndrome (POTS) resources. POTS is common in HSD, and not always diagnosed. It presents as severe fatigue, poor tolerance to exercise, headaches, heart palpitations, anxiety (even panic attacks), brain-fog, fainting, nausea, GI problems and more.

• www.potsuk.org POTS-UK
• http://www.dysautonomiainternational.org Dysautonomia International.
• The Disautonomia Support Network, Has many excellent resources about management of and accommodations for dysautonomia. Click on the Resources tab.

Mast Cell Activation Syndrome/Disorder (MCAS/D) resources. MCAS is also common in people with HSD/EDS. MCAS presents as migraines, hives, itching, flushing, severe allergies, irritable bowel, chronic fatigue, chronic pain, medication sensitivity, chemical sensitivity, brain-fog and more.

• https://tmsforacure.org The Mast Cell Disease Society.
• https://www.mastzellaktivierung.info/en/introduction.html. Mastzellactivierung.info is one of the original MCAS resources. It is in English.
• The Validated Mast Cell Action Questionnaire. can be used to diagnose MCAS if your score is ≥14. You do not need to know the answers to lab or imaging tests to use this. This questionnaire can be helpful if you are unable to see an MCAS specialist - bring the completed questionnaire to your primary care, allergist, etc. to begin a discussion about MCAS.
• The Quick Environmental Exposure and Sensitivity Inventory, or QEESI©. is a questionnaire to assess chemical sensitivity, which is commonly seen in MCAS. The spider web drawing can help you identify what systems (e.g., GI, skin, brain) are most affected by your MCAS. This questionnaire can also be helpful if you are unable to see an MCAS specialist - bring the completed questionnaire to your primary care, allergist, etc. to begin a discussion about MCAS.