I tweet about Ehlers-Danlos, hypermobility, dogs and flowers in that order.🦓💪🐶🌹.

If you’re like me and hold off taking migraine meds, here’s why we shouldn’t do that from Dr Katy Munro, migraine specialist. She spoke at our Zebra Club members meet up this week. “If you do get a migraine attack, get on it quickly. The trouble with waiting to see if it's a.

Some days it’s strength. Some days it’s rest. Both are valid. It’s unpredictable with chronic illness. I’ve found listening to what my body needs is the most important thing.

✨What does normal even feel like?. When your baseline is daily pain, fatigue, and instability, it’s easy to forget that most people don’t feel like this.

Excited to catch up with the London Hypermobility Network next week at this event, plus a catch up with @BendyBrain 🙌.

EDS can be called called rare, but 🧐. It might not be as rare as we think—many people go undiagnosed for years. We still don’t know the actual prevalence of hEDS & HSD. We have estimates. Lack of awareness doesn’t mean lack of existence. Just because the doctors aren’t aware of.

My blog explores safe travel with chronic illness.

It’s holiday season for many. Airports can be overwhelming and.triggering for many of us. The lights, noises, crowds, long lines (not great for POTS!), and don't get me started on the duty-free perfume walk-through with MCAS! There are things we can do to help navigate it.

We need to hear comments like this more often in our chronic illness community.

But you look fine…. Why are you in a disabled parking space?.Why do you need to use the lift?.Why can’t you walk that far? . Too many questions that we should not have to answer. We don’t need visible bruises or scans to prove your pain. Even if others don’t understand it, my.

RT @AChVoice: “EDS comprises a group of #genetic conditions with different types of genetic causes due to altered #genes within the extrace….

Does your skin itch at the slightest touch of a clothing label? You’re not imagining it. In EDS, even tiny irritants like seams or tags can feel unbearable — because our skin and nervous system are extra sensitive. Anyone else been cutting off their labels in this heat?.

Have you ever shared something deeply personal… and then been met with silence?. Earlier this year, I reconnected with a colleague from my old corporate life. When they asked what I do now, I decided to be totally open and honest — not just about my work, but the chronic illness.

Headache has been characterized as "one of the most common and disabling types of pain in hEDS according to one study. It is often the first presenting symptom and cause of disability in EDS/HSD. My headaches started at a young age. Migraines at aged 19 - I’d just started work.

Anyone else had the EDS Tricks You Moment. We’ve pushed through pain or gone beyond our limits, maybe without realising it at the time, only to find we pay the price a couple of days later. The number of people who have said to me, “I felt OK at the time, it didn’t hurt, but.

When I was growing up, my mum used to say to me “you’re just creating your symptoms. You’re thinking about it so much, you’ve created it”. So I created IBS, pain, migraines, POTS and so on. Another way to tell me it’s all in my head! . Words like ‘just’ and ‘only’ minimize real.

In a recent study:. 66% of people with hEDS/HSD (and other forms of EDS had head and neck problems.• headaches.• neck pain.• facial pain.• neck instability.• or a combination of these. Yep - had headaches and migraines my whole life.

This week I explore deconditioning.

Just get stronger” is advice often thrown at people with EDS or hypermobility. But what if movement feels unsafe… or impossible?. In the context of hypermobility and deconditioning, it is rarely just about being inactive. We are not deconditioned because we are not trying hard.

Many years ago before I knew I had EDS, I would struggle with exercise & didn’t understand why it hurt so much and made me feel worse. I stopped doing it. Because pushing through got me into flares and setbacks I couldn’t afford physically or emotionally. Resting isn’t.

For years, I was told my symptoms—racing heart, fainting, dizziness—were just anxiety. I was offered counselling when what I really needed was a diagnosis. Eventually, I discovered it was Postural Orthostatic Tachycardia Syndrome (POTS)—a form of dysautonomia. And I wasn’t.