Not Just Bendy…

…also fatigued, dizzy, anxious and bloated

…also smart and educated.

Beware: knowledge is power but everyone with hypermobility presents differently.  Try not to get too overwhelmed by all the infomation on the internet.  Take your time and let your therapist guide you on where to start your journey 

NB:  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.

This is not an extensive list but some of my favorite hypermobility links sites and a good place to begin your research.

Please note: No responsibility is taken for any information provided on this site or 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.

It’s not how many times you get knocked down that count, it’s how many times you get back up. ” —George A. Custer

General Overview Websites

General Overview Books

Common Postural Issues

Autonomic Dysfunction including Postural Orthostatic Tachycardia Syndrome(POTS)

GUTS Issues and Diet

Hormones & Periods

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

Mindfulness/Meditation

  • “Headspace”- www.headspace.com or download headspace phone app.  Ten minute mindfulness mediations made simple. First ten mediations 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

Helpful Equipment/Accessories

  • 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
  • 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 PhysioTec 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.