Happy #InternationalWheelchairDay I didn't know this was a thing until earlier today, but as a new active wheelchair user it felt quite poignant. I knew that using a wheelchair as a pacing tool would give me freedom, independence and lessen the increase of pain I get from walking & subluxations. But it felt like I had to convince some of the people around me that this was a positive thing. I guess that unless you have experienced the fear of falls (I had 4 bad falls in 5 months last year) or severe post activity pain that can last months in worst case scenarios, it must be harder to see wh ..read more

Dysautonomia is the medical term given to a disorder of the Autonomic Nervous System (ANS). The ANS is responsible for the parasympathetic and sympathetic nervous systems. Their function is to control the bodily functions we do not consciously need to think about including breathing, digestion, blood pressure and temperature regulation, and kidney and sexual function. People living with different forms of dysautonomia can display a wide variety of symptoms including dizziness, fainting, palpitations, disturbed bladder function, and bowel dysmotility sometimes leading to malnutrition. Although ..read more

I was curious when the HMSA and EDS UK shared a call out for participants in a study to evaluate the effect of mindfulness meditation on pain. I met the criteria and passed the initial survey with my willingness to commit to listening to a six minute mp3 recording, one to three times every day for 2 weeks. Emails soon followed introducing mindfulness practice as focussing on the present in an open and accepting way. Clear easy instructions, a simple mp3 recording with a lovely voice (if a little quiet), check-ins and feedback requests that made me feel a valued participant. I experimented with ..read more

As a 14-year-old girl who suffers with hypermobility, I have found living with pain quite difficult at times, but I have found many ways to deal/cope with it. I’ve learned that medication isn’t the only answer, as it doesn’t take my pain away completely and has some side effects. Alongside painkillers, I use heat packs and Epsom salts to ease the pain a bit more. With an injury, I use KT tape to hold the joint in place and relieve the pain. I find it difficult sometimes, both with pain and adaptations because I don’t like looking different from other people, so I try to adapt it in ways that a ..read more

Editors note: Anne, our Nottingham Local Group Leader suffered a bout of painsomnia recently, which led to this rather marvellous artwork. She shared it with the group, and we thought it deserved a much wider audience, so with Anne's kind permission we present, pain - pictured! We are tempted to use it as the basis for a new game, 'Pin what ails thee on the wonky!' I couldn't sleep a few nights ago because my knees were hurting, and I thought "it's like they're made of rusty steel", and an image started to grow in my mind of all the different things that my body feels like. So, I drew it. This ..read more

Two of the HMSA's Clinical Advisors, Philip Bull and Alan Hakim, in partnership with Long Covid advocate, Gez Medinger have conducted some fascinating research into the links between Long Covid and generalised joint hypermobility (GHD). This research is in its early stages and so has not been peer-reviewed but has very interesting initial findings and illustrates the need for more research and investigation to be carried out in this rapidly evolving field. The HMSA is delighted to host this research on our website. From the authors: ",This study found that widespread / generalised joint hyper ..read more

I have a hypermobility syndrome (probably hypermobility Ehlers Danlos syndrome). The Hypermobility Syndromes Association’s (HMSA) topic for the month is Exercise. So, I thought I'd write this blog that I have been thinking about for ages. I've seen loads of physiotherapists and been told in many different ways that I need to exercise. Which is true, but also not helpful. It took me a long time to discover these little nuggets, which made 'exercise' both possible and helpful for me - I share them in case they help you too: 1. Housework can count as exercise. But only if it's done with poise and ..read more

These winds were obviously sent by witchcraft and wanted my suitcase to turn into an unmanned aerial vehicle. A drone ready for take-off. With all my bodyweight, I held down my trolley suitcase from flying away. “It’s a tornado, you had better go home”, one of the men in work overalls called out to me. He belonged to a gardening team. Half a dozen men were cutting branches from the trees. But the storm had its own rules and made branches jump in the air like acrobats doing dangerous somersaults. “Excuse me, I can’t find the A&O hostel”, I shouted above the roaring wind. “Don’t worry, it’s ..read more

I recently went to a genetics appointment for my 7-month-old little boy. When he was having his new born check, the doctor started asking me lots of questions which I assumed was the normal thing they did - apparently not! To cut a long story short they weren't massively happy with some of my symptoms not matching my current diagnosis and asked if Samuel could be referred to the genetics team for him but also for myself and obviously, I said yes. This appointment was one of the best I'd ever experienced in my life. Lots of things were discussed and I'm actually now getting tested for a couple ..read more

In December 2008, my partner proposed to me, and I was absolutely over the moon. I started planning my dream wedding for that July, only 7 months away, as we didn’t want to hang about. I was really enjoying the wedding planning, but my right hand was really sore and causing problems for me at work. Painful joints were no stranger to me, I had struggled with pain since I was a child. Spraining my ankles so frequently, that one school year I didn’t do PE at all, and the teacher was convinced that I was lying to get out of PE. At 16, my back started to become really sore, and I tried dihydrocodei ..read more