“It’s not how many times you get knocked down that count, it’s how many times you get back up. ” —George A. Custer
Not Just Bendy…
…also fatigued, dizzy, anxious and bloated.
…but 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 links 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 info sites and a good place to begin your research.
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 Websites
- 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:
- http://hypermobility.org/ – 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)
- https://drchenphysio.com/ – blog of Not Just Bendy physiotherapist Dr Chen
General Overview Books
- “Joint Hypermobility Handbook” by Dr Brad Tinkle (USA Geneticist) is an simple general guide and easy to understand handbook that discusses 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 done an EDS society webinar titled – Movement Therapy and EDS Well being.
Common Postural Issues
- Increased Lumbar Lordosis (low back arch) – https://hippainhelp.com/causes-affects-exercise-for-lordosis-and-hip-and-back-pain/
- Hip Hanging – https://hippainhelp.com/are-you-a-hip-hanger-ideas-on-how-not-how-to-stand-for-hip-pain-relief/
- How to Use a Walking Stick – https://hippainhelp.com/how-to-use-a-walking-stick-why/
- Pain with walking – https://hippainhelp.com/3-simple-strategies-to-reduce-hip-pain-with-walking-and-running/
Autonomic Dysfunction including Postural Orthostatic Tachycardia Syndrome(POTS)
- Dr Peter C. Rowe – Managing Life with Autonomic Symptoms. Excellent summary of the conservative and medical management of POTS
- Teens & Autonomic Dysfunction . A useful workbook focusing on salt, fluids and pacing. Includes diary for problem solving & geared at teens although also useful for adults: https://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
- http://www.mycoolingstore.com/ – wide range of products to assist with keeping cool
- https://www.cooldownaustralia.com.au/ – Australian website with products to help you keep cool
GUTS Issues and Diet
- “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: https://ehlers-danlos.com/pdf/Collins-EDS-You-are-NOT-what-you-eat-S.pdf
- Allergies and intolerance (including IBS symptoms)
- Monash low FODMAP- https://www.monashfodmap.com/
- “The Complete Low FODMAP diet” book by Sue Shepherd
- Lower inflammation
- NB: It is important to discuss dietary changes with your specialist medical team
Hormones & Periods
- Hypermobility Happy Hour – Podcast on Menses, Mast Cells and Migraines https://soundcloud.com/user-676536371/interview-with-dr-lila-rosenthal
- Book by Laren Briden: Period Repair Manual https://www.larabriden.com/period-repair-manual/
- Scientific Journal Article: Successful mast-cell-targeted treatment of chronic dyspareunia, vaginitis, and dysfunctional uterine bleeding. https://www.ncbi.nlm.nih.gov/pubmed/30964355
Fatigue, Activity Tracking & Pacing
- Cresta Fatigue Guide – excellent workbook for problem solving fatigue
- Pacing activity ideas – 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 (look in the health app) of you can get one 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?”
- Recognise app by NOI group. For training laterality (distinguishing left from right) which can be helpful in chronic pain https://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 https://ecentreclinic.org/?q=CCCourse
- App: Curable – app that includes pain education, problem solving and meditation https://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 by Australian physiotherapists Dr Alison Grimaldi, Sharon Hennessey & Kirsty McNab https://hippainhelp.com
- Free Podcasts by PhysioTec practice principle Dr Alison Grimaldi on lateral (outer thigh) hip pain and hamstring tendinopathy (buttock pain) http://dralisongrimaldi.com/resources/podcasts/
- 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 of etsy. Oval 8 splints are a plastic version that can be fitted at PhysioTec
- Wrist Widgits; wrist braces that also allow good hand function while being supportive. Available at our clinic or https://wristwidget.com.au/
- 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 Graham General Purpose Massager – is a hand help device which is very helpful is reducing muscle tightness and joint stiffness. Available from our clinic or https://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. Please consult your own medical practitioner for advice to suit your personal circumstances.