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[Steenygirl1]

Hello everyone, after many years of health problems I think I might be getting somewhere in understanding what's going on. As a child, flat feet, hallux valgus, knee problems "growing pains," thumbs that could touch the forearm, my party piece , physio! 20s low back pain, physio again (privately) told I have lax ligaments 30s the back pain extends to the thoracic area, told there is slight scoliosis. Digestion starts to slow down, food just sits in my stomach, constipation, fatigue, nothing found with gp, I struggle on. Late 40s my circulation terrible, raynauds and chilblains at times, feet start to hurt, bone erosion and bone fragments, osteotomy performed, digestion means I struggle to eat, the fatigue and weight loss is awful, my joints start to cease up and I have increasing pain, especially between ribs, a loss of 1" in height with significant bone density loss and osteopenia L3 & 4 and now at the grand old age of 54 hypermobility and EDS is mentioned, with some marfan traits thrown in and I can see it all in my eldest son and mother! Awaiting formal diagnosis but all advice warmly welcomed especially with dealing with pain. I find yogalates (mix of yoga and Pilates) helps and try to avoid the nsaids but needs must sometimes. Sorry for long post

[Tillyray]

Hi and welcome🙂. I am sorry to hear you have suffered with health problems for so long.Sadly It is the plight of us all. But a corner seems to be turned when we begin realising what is going on with us...

After years of illness, symptoms and increasing disability I began piecing the puzzles together. The rheumatologists fobbed me off because they couldn't understand it, and it was easy for them to put it all down to fibromyalgia 😬.I knew more was going on with me. I did my research and decided to seek the opinion of a private Hypermobility, EDS specialist for me and my son -he also suffered similar symptoms and illness since a young boy- and finally we were both diagnosed with hEDS...Me at 52 and my son at 21.

Having an actual diagnosis has allowed other tests to be done on the NHS to check for heart problems associated with EDS, and referrals to other specialist consultants for other body system problems. Also access is available to physiotherapist, podiatrist, OT. Having a diagnosis on our medical records will also be able to be considered in the event of an emergency medical problem.I have experienced an emergency in the past that Doctors didn't understand the cause of, it became serious and I bled excessively.A surgical team also need to safeguard against skin fragility, excessive bleeds and anaesthetic's. All of this knowledge also gives piece of mind, as a plan can then be put in place if ever there is such an event..Managing pain isn't easy and works differently for different people. I use hot and cold bottles, sprays. Prescribed meds and paracetomol. I have an 'Actipatch' for muscle pain, sold in Boots. Strapping my ankles is better than not doing, and I await splints...

I hope you have a knowledgeable consultant who can diagnose and further advise you.Good luck and Best wishes 🙂 x

[Steenygirl1 in reply to Tillyray]

Thank you for taking the time to reply. I have been drawn to a diagnosis of EDS myself many times but wasn't sure. Also found I have a sliding hiatus hernia. Have been managing my digestive and joint problems myself but like you say believe the formal diagnosis will help not only myself but also my mum and 30yr old son get the help they need and prevent him from going through this unsupported

[Tillyray in reply to Steenygirl1]

I sincerely wish you and your son all the very best 🙂 Please ask any questions. This is a supportive community and everyone is happy to help and share their knowledge.xx