Hypermobility Flare-Ups

I would describe my flare-ups as

“feeling like I have no bones in my body”

I asked on social media recently how do you describe your flare-ups. Here is the most amazing compilation of what you said. They were so good and descriptive I decided to pull them all together in one place. This is valuable – it certainly made me feel like I wasn’t alone in these strange feelings that are so hard to explain to someone who does not experience flare-ups.

Print it out and hand it to someone next time they ask how you are feeling on a flare day.

“I feel like my limbs are so heavy, I cannot move”

“I have no arm bones today”

“I’m having a spaghetti day”

“My joints are wonky today”

“I feel like an old outstretched rubber band”

“It feels like a hangover in my entire body”

“My brain feels like cotton wool”

“I’m wearing lead boots”

“It hurts to speak”

“My sternum has an elephant pushing down on it”

“Jellyfish nerve bundle of pain”

“A body migraine”

“Feeling like a bad bout of the flu”

“I feel like my legs are full of concrete”

“My spine has turned into spaghetti”

“I feel like I’ve been unplugged”


“My bones can no longer hold my body up”

“My bones are soft and jelly like”

“Feels like my whole body is 80 years old”

“My face feels weirdly heavy”

I hope this is helpful. You are not alone. You are not strange. This is how a hypermobile flare-up can feel. Notice the common themes running through the words chosen.

Wishing you a flare-free day.

Visit my YouTube Channel to discover exercise tips and solutions to move pain-free and avoid flare-ups

  • linda davies
    Posted at 17:41h, 27 July Reply

    All of the above, having one of those days today <3

  • Martina Ingemarsson
    Posted at 09:49h, 28 July Reply

    My Mom – who never got to know she had hEDS – used to say she felt like a rag doll.
    Thanks for this post …

  • Amy Rosengren
    Posted at 17:16h, 28 July Reply

    I feel like my spine is crumbling.
    Thanks for all you do! It’s so nice to not feel so alone!!

  • Roshanna Stewart
    Posted at 14:12h, 30 December Reply

    I feel like nothing belongs to me, not even my heart beat. Everything feels disconnected and hurts like the pain of thousands in all my muscles moving every time I do. My body shuts down and puts me to sleep. It’s fighting a invisible force that’s in you trying to take you out from within. Heart, lungs, eyes, ears, stomach, I have to use oxygen during flare ups. I didn’t get it til someone said chest pains. I have stage 3 heart failure sometimes my chest pains aren’t heart related and they couldn’t find the source til I was diagnosed with Ehler Danlos. Thank you for sharing your symptoms it helped me a lot.

  • Paula
    Posted at 20:26h, 11 March Reply

    I cried when i read this, still trying to understand the way i feel and the pain i experience. Have always had joint problems from birth, but was told in 2018 that i had joint hypermobility syndrome. No explanation or advise was provided.
    Have been researching ever since as my flare-ups are becoming more regular and don’t seem to have many normal days anymore, so thank you ..

    • Jeannie Di Bon
      Posted at 08:58h, 17 March Reply

      Thank you for your comment. I’m so glad it was helpful for you.

  • Julie
    Posted at 22:14h, 04 April Reply

    Thank you for this post. I had the worst flare up yesterday, yet wasn’t sure if that’s what it was… but reading this; it absolutely was. Felt like an elephant was sitting on my whole body and I had no bones at all. I couldn’t even hold up my arm. Does anyone get extremely dizzy… I always get dizzy with a flare.. like Virtigo,

  • Jamie Browne
    Posted at 12:37h, 06 April Reply

    Thank you all for sharing your stories. I have felt alone in many ways. I was formally diagnosed with EDS hyper mobile type, 2 years ago. Before that, I was treated fir Rheumatoid Arthritis. I’m having a flare up currently. My right foot is very swollen, so it’s very painful to walk. Thank goodness for Prednisone:) my right thumb and middle finger are destroyed from all the subluxations that have happened. They want to fuse my bones of the right fingers. Does anyone here have the same issues with subluxations? If so, did anyone have the fusion? I’m only 38 years old, and I have a 9 year old son. I just don’t to do something that will never be reversed, ,yet the pain is excruciating:(
    Any advice would be wonderful, and very much appreciated.

    • Jeannie Di Bon
      Posted at 10:58h, 12 April Reply

      Thank you – I am glad my blogs and information are useful. It is difficult to give any personal guidance however as I do not know your history.

  • jayne
    Posted at 13:57h, 17 June Reply

    Isometric exercises can be done almost anywhere, in any position. Even while reading or watching a screen. Large muscle groups can benefit alot, such as tensing your butt cheeks one at a time for just 15 mins per day, can help support the spine, hips and reduce pain.

    • Jeannie Di Bon
      Posted at 10:27h, 22 June Reply

      Yes, I am a huge fan of Isometric exercises. We need to work isometrically, eccentrically and concentrically to get full benefits.

  • Troubled Soul
    Posted at 23:39h, 14 March Reply

    I recently been diagnosed with EDS, which explains a lot of how I’ve been feeling the last year. My body feels like a 90-year old trying to move like a young person. Every step I take feels like two “leaning towers of pizza” slipping and sliding from one another. It has been the most brutal and relentless physical ailment I’ve ever experienced. PLS HELP, DON’T WANT TO LIVE LIKE THIS ANYMORE..

    • Jeannie Di Bon
      Posted at 09:53h, 15 March Reply

      Thank you for your comment and sorry to hear you have been struggling with your diagnosis. There is support available so please don’t feel alone or give up hope. I would recommend you phone one of the helplines for EDS run by the charities. Ehlers-Danlos Support UK, The HMSA and The EDS Society all have helplines that you can speak to a real person for support. Online there are also lots of resources. The EDS Society YouTube channel has a whole host of videos from different EDS experts that can give you information and education about how to manage this condition. From a movement perspective to help with pain, I have a YouTube channel with classes and tips on how to manage pain with EDS. I do hope this helps. It can be a challenging condition but there are people who are able to support.

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