27 Jul 2020 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”
“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
linda davies
Posted at 17:41h, 27 JulyAll of the above, having one of those days today <3
Martina Ingemarsson
Posted at 09:49h, 28 JulyMy 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 JulyI 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 DecemberI 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 MarchI 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 MarchThank you for your comment. I’m so glad it was helpful for you.
Julie
Posted at 22:14h, 04 AprilThank 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 AprilThank 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 AprilThank 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 JuneIsometric 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 JuneYes, 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 MarchI 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 MarchThank 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.
HAZEL CATCHPOLE
Posted at 21:39h, 05 DecemberI 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
Posted at 12:32h, 08 DecemberI 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 jeannie@jeanniedibon.com.