Not Just Bendy – also smart, educated and mighty
Hypermobile-Ehlers-Danlos Syndrome, Joint Hypermobility Syndrome and Hypermobility Spectrum Disorder – can all have hypermobile joints (now or in the past) and sometimes other issues related to connective tissue issues.
Knowledge IS power but everyone with hypermobility presents differently. Try not to get too overwhelmed by all the information on the internet (including the hypermobility links and hypermobility references below).
Take your time and let your therapist guide you on where to start and how to continue on your journey.
This is not an extensive list but some of Not Just Bendy’s favorite hypermobility links to info sites and a good place to begin your research. Please ask your Not Just Bendy Hypermobility Services Physiotherapist for guidance on your priority areas to focus on initially.
Please note: No responsibility is taken for any information provided on any of the links listed. This is not to be considered to be medical advice. Please consult your own medical practitioner for advice to suit your personal circumstances.
General Overview Hypermobility Links & Websites
- What is hypermobility? Blog by Not Just Bendy Principal Physiotherapist Sharon Hennessey.
- Ehlers-Danlos Society. https://www.ehlers-danlos.com Comprehensive site includes full text published journal articles and internationally agreed classifications. Very good YouTube channel with lectures recorded from patient focused global learning conference. A good one about how to approach rehab is:
- https://www.hypermobility.org/ HMSA – Hypermobility Syndrome Association (UK)
- www.hypermobilityconnect.com – Australian blog, Facebook page and positive patient support group
- Podcast series: Hypermobility Happy Hour
- www.notjustbendy.com – blog and website of Not Just Bendy Hypermobility Services Physiotherapist Sharon Hennessey (don’t go anywhere you are already here)
- Podcast interview with Physiotherapist Sharon Hennessey about connective tissue disorders and working with hypermobile patients (recorded by Insight Osteopathy).
- https://drchenphysio.com/ – insight filled blog of Not Just Bendy Physiotherapist Dr Chen
General Overview Books
- “Joint Hypermobility Handbook” by Dr Brad Tinkle (USA Geneticist) is a general guide and easy to understand handbook discussing many symptoms associated with hypermobility.
- “Understanding Hypermobile-Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder”, by Claire Smith. A very comprehensive book with detailed medical information and references to an extensive list of scientific papers. A useful guide to share with your medical practitioner.
- Hypermobility without Tears: Moving Pain-Free with Hypermobility and EDS by Jeannie Di Bonn. A good introduction to the importance of posture, breathing and letting go of muscle tension. Jeannie Di Bonn has also given an EDS society webinar titled – Movement Therapy and EDS Well being.
Common Postural Issues and Hypermobility References
- Increased Lumbar Lordosis (low back arch) – hippainhelp.com/causes-affects-exercise-for-lordosis-and-hip-and-back-pain/
- Hip Hanging – hippainhelp.com/are-you-a-hip-hanger-ideas-on-how-not-how-to-stand-for-hip-pain-relief/
- How to Use a Walking Stick – hippainhelp.com/how-to-use-a-walking-stick-why/
- Pain with walking – hippainhelp.com/3-simple-strategies-to-reduce-hip-pain-with-walking-and-running/
- Why is rehabilitation of the hip/pelvis so important in Hypermobility? www.hypermobilityconnect.com/rehabilitation-of-the-hip-and-pelvis-in-hypermobile-individuals/
Autonomic Dysfunction (Dysautonomia) including Postural Orthostatic Tachycardia Syndrome(POTS)
- What is POTS? Dysautonomia Society. 4 minute summary video.
- Dr Peter C. Rowe – Managing Life with Autonomic Symptoms. Excellent summary of the conservative and medical management of POTS
- Teens & Autonomic Dysfunction [PDF] – A useful workbook focusing on salt, fluids and pacing. Includes diary for problem solving & geared at teens although also useful for adults. www.ehlers-danlos.org/wp-content/uploads/2017/07/MAYO_Clinic_Teens_Dysautonomia_copy.pdf
- “The Dysautonomia Project” – book, website, articles, Facebook page and videos: thedysautonomiaproject.org
- www.mycoolingstore.com – wide range of products to assist with keeping cool
- www.cooldownaustralia.com.au – Australian website with products to help you keep cool
GUTS Issues and Diet Hypermobility References
- “Association between EDS and gut problems” EDS society lecture presented by world leader in this field – Dr Qasim Aziz
- Heidi Collins EDS society presentation notes: ehlers-danlos.com/pdf/Collins-EDS-You-are-NOT-what-you-eat-S.pdf
- Allergies and intolerance (including IBS symptoms)
- The Monash University Low FODMAP Diet™ – www.monashfodmap.com
- Books by Dr Sue Shepherd – shepherdworks.com.au/shop/#wrapper-wdp554ed61d23b6f, includes:
- “The Two-Step Low-FODMAP Diet and Recipe Book”
- “Low FODMAP Recipes”
- “Gluten Free Cooking”
- “Allergy-Free Cooking Recipe Book”
- “The Complete Low FODMAP diet” (booktopia) by Dr Sue Shepherd
- Lower inflammation
- NB: It is important to discuss dietary changes with your specialist medical team, GP, gastroenterologist or dietician.
Hormones & Periods
- Disorders of Bladder Function hypermobility/EDS by Prof Vik Khullar www.youtube.com/watch?v=bqqRQYCvOkI
- Hypermobility Happy Hour – Podcast on Menses, Mast Cells and Migraines soundcloud.com/user-676536371/interview-with-dr-lila-rosenthal
- Book by Laren Briden: Period Repair Manual www.larabriden.com/period-repair-manual/
- Scientific Journal Article: Successful mast-cell-targeted treatment of chronic dyspareunia, vaginitis, and dysfunctional uterine bleeding. www.ncbi.nlm.nih.gov/pubmed/30964355
- www.PelvicPain.Org – free website with info on pelvic pain for women, men and teens: Link to the teen page including period pain management
Fatigue, Activity Tracking & Pacing
- Cresta Fatigue Guide – excellent workbook for problem solving fatigue
- Pacing activity ideas from www.PainManagement.org
- Runkeeper app – measures distances walked.
- Fitbit/ Apple Watch/Garmin etc– worn on the wrist these devices can measures daily steps, heart rate and sleep cycles.
- Pedometer – to measure daily steps. Many smart phones have a built in pedometer (for iPhone: look in the Health app) and you can get more advanced options from the app store.
- Sleep Tracker app
- Activity Diary – can be used to record your activity, sleep and pain level. You can make your own, choose an app or download worksheets
- Fall Detection – Apple Watch (on series 4 & 5)
Chronic Pain Management
- “Explain Pain” book by David Butler & Lorimer Moseley
- TED talk by Lorimer Moseley “Why Things Hurt?”
- A quick but useful guide to chronic pain – www.noigroup.com/noijam/a-glittery-free-pain-resource/
- “Recognise” – Smartphone App by NOI group. For training laterality (distinguishing left from right) which can be helpful in chronic pain www.noigroup.com/product/recogniseapp/
- What is chronic pain – Blazin guns – video explaining the many factors that contribute to chronic pain.
- Free online course for those with chronic medical conditions – develop good emotional well being despite having a chronic condition ecentreclinic.org/?q=CCCourse
- PainBytes; Free online pain course for kids & adolescents www.aci.health.nsw.gov.au/chronic-pain/painbytes
- App: Curable – app that includes pain education, problem solving and meditation www.curablehealth.com
- See also Mindfulness/Meditation section
- “Headspace” – www.headspace.com or download headspace phone app. Ten minute mindfulness meditations made simple. First ten meditations are free. Useful animations about the brain and negative thoughts.
- Buddhify app
- Smiling Mind app – also has meditations for children and adolescents
- 1 Giant Mind app
- “The Happiness Trap” or the comic version “The Happiness Trap Pocketbook” by Russ Harris are excellent publications that cover the basics of ACT (acceptance and commitment therapy) and mindfulness. www.actmindfully.com.au
- Spotify music app – search for mindfulness, meditation or relaxation.
- Hip Pain Help – Hip & Pelvic pain website founded by Australian physiotherapists Sharon Hennessey, Kirsty McNab & Alison Grimaldi, PhD – hippainhelp.com
- Silver Ring Splints – can be worn on fingers/thumb joints to stabilize them. They can help with hand pain/fatigue with writing/use and decrease dislocations. Cheaper variants often found online eg. www.zebrasplints.org/. Oval 8 splints are a plastic version that can be fitted at Not Just Bendy.
- Wrist Widgets; wrist braces that also allow good hand function while being supportive. Available at our clinic or wristwidget.com.au/
- Body Braid – arm braid bodybraid.com/products/h An innovative elastic brace to assist with shoulder instability. We have one in our clinic as a demo product.
- Therapeutic Pillows – stock a wide range of pillows to support the hypermobile body in every position. Good quality and durable products.
- Eggshell Mattress Overlay. Available from Clarke Rubber and often Target/spotlight – pressure relief for hips and shoulders can decrease pain and improve sleep quality
- Dr Graeme General Purpose Massager – is a hand help device which is very helpful is reducing muscle tightness and joint stiffness. Available from our clinic or www.drgraeme.com/products/general-purpose-massager
Please note: No responsibility is taken for any information provided on this site or any of the links listed. These links are not and do not imply specific individual medical advice. Please consult your own medical practitioner for advice to suit your personal circumstances.
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“It’s not how many times you get knocked down that count, it’s how many times you get back up. ” —George A. Custer