by Jeannie Di Bon, July 27th, 2020
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”
“Blancmange”
“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
19 Comments
Nicola - 15th November 2023
My son has multiple joint hypermobility syndrome. He suffers a lot with pains and also catching bugs and being poorly a lot come winter. He has lot of time off school ..does anyone else struggle with school understanding
jeannie-admin - 16th November 2023
Yes this is quite common. You may want to look up the School Toolkit which was designed exactly for this to help explain to schools about the needs of hypermobile children.
Teacher - 10th November 2023
Thank you for this space. I am currently havin g a flare up. Which I now finally recognize as a flare up. I have dealt with symptoms since I was a kid, now 35, just diagnosed with EDS last winter.
I feel like a guitar that has all of the clamps loosened to different degrees. Now my tone is all off. my joints are not as taunt. Not as stable. There are small fires burning in various areas of my body. I am trying to keep positive and focus on how to support/ make it through flare ups. I’m new to even the idea that I am hypermobile, even though I have taught exercises which keep hypermobility in mind, so I am trying to learn a lot in my own body. I am a pilates instructor and signed up for your course through ECHo, and I am very excited!
jeannie-admin - 14th November 2023
Thank you so much for signing up for my Echo course. I look forward to working with you on this issue during the course.
HAZEL CATCHPOLE - 5th December 2022
I KNEW THAT I HAD SOMETHING THE MEDICAL PROFFESSION WAS MISSING I HAVE READ THESE SYMPTOMS FROM OTHER PEOPLE AND I AM EXPERIENCING ALL IOF THE SAME BUT G.P ARE LOOKING FOR MEDICATION NOT THE ROOT OF THE PROBLEM AND I NOW BELEIVE I AM SUFFERING DAILY WITH EVERY PAIN FUL JOINT AND MUSCLE IN MY BODY AND ITS VERY HARD TO EXPLAIN TO AMNY ONE WHAT I AM EXPERIENCE ALL AT THE SAME TIME DAILY AND ALL THROUGH THE NIGHT I DONT WANT TO WAKE UP cant take any more
Jeannie Di Bon - 8th December 2022
I am sorry to hear your are struggling Hazel. Please feel free to email me and I can give you details of the helplines run by the charities for EDS so you can speak to someone in confidence who understands. My email is .
Troubled Soul - 14th March 2022
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 - 15th March 2022
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.
jayne - 17th June 2021
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 - 22nd June 2021
Yes, I am a huge fan of Isometric exercises. We need to work isometrically, eccentrically and concentrically to get full benefits.
Jamie Browne - 6th April 2021
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 - 12th April 2021
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.
Julie - 4th April 2021
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,
Paula - 11th March 2021
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 - 17th March 2021
Thank you for your comment. I’m so glad it was helpful for you.
Roshanna Stewart - 30th December 2020
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.
Amy Rosengren - 28th July 2020
I feel like my spine is crumbling.
Thanks for all you do! It’s so nice to not feel so alone!!
Martina Ingemarsson - 28th July 2020
My Mom – who never got to know she had hEDS – used to say she felt like a rag doll.
Thanks for this post …
linda davies - 27th July 2020
All of the above, having one of those days today <3