What are my hEDS Symptoms?

[@ehlersdanlosandi]

What are your main EDS symptoms?

[@shannongreenwell1278]

My cEDS pain is joint pain and Migraines, I have Dysautonomia. I have GERD.

[@ehlersdanlosandi]

I just realized I forgot to mention TMJ pain! I only get it maybe once or twice a month, but it's terrible 😣

[@Truerealism747]

Use a mouth guard for that

[@ehlersdanlosandi]

@@Truerealism747 I've heard that helps a lot of people! I might have to give it a try, but I don't have any issues with teeth grinding or jaw clenching at night, so I'm not sure it would be of help for me.

[@keirapendragon5486]

@@ehlersdanlosandi I also have TMJ issues and don't grind my teeth or anything. Mostly it's a non-issue - unless I yawn too big because I'm not paying enough attention to make sure I don't do that. Also avoiding candy like candy canes because I compulsively chew them and that once I'm pretty sure I subluxed my jaw, the pain and stiffness after was bad enough I couldn't hardly close my mouth or eat for nearly three days x.x

[@ehlersdanlosandi]

@@keirapendragon5486 BLT's are what do it for me! I still love them anyways.

[@teresareinert8271]

I have not gotten a diagnosis as of yet. I watch these videos and realize they talk about my life in general. I live in pain most of my life, my spine and joints are the Bain of my existence. I struggle putting on shoes because my smaller toes will bend backwards while slipping the shoe on. It’s like I don’t have the normal cartilage to hold them in place anymore. If I turn my head to the left wrong it can be so painful I fear I’m about to pass out. I think my head isn’t attached as it should be. I have scoliosis/ degenerative disk disease and a broken long prehensile tail bone. It looks gnarly on X-ray. It’s painful to set for long so I get shifty quit often. At night I wake up with either hand aching asleep but it’s never on the side I’m sleeping on. Definitely a side sleeper. My pots like symptoms I think are from an electrical accident I had where I burnt my sinus wave in my heart. I have a pacemaker now. My veins are apt to bust when using them with larger needles so now I have a port for access. I’m a hot mess, oh I score 7 on the brieghton scale very flexible.

[@ehlersdanlosandi]

You definitely sound like a fellow EDSer. I hope you can someday get a diagnosis and find treatments that help you

[@chalcedony6858]

This is a really nice video, and you look good, too. I appreciate that you go into detail about your issues. It's so easy to forget things.. out of sight, out of mind.. until the next time!

[@ehlersdanlosandi]

Thank you!

[@Cozy_Kitsune]

Oh my gosh. The joint popping! My joints do this all the time. Either my knees/ankles/hips/sternum/neck feel like they need to pop and I can get them to, or they do it on their own. I also go through everything else you mentioned. I’m not diagnosed with hEDS, but I did meet a diagnosed friend earlier this year who first brought it up as everything I’m going through she did as well. Maybe I need to book an appointment with a specialist!

[@ehlersdanlosandi]

@@Cozy_Kitsune it definitely sounds like you should book that appointment!

[@michaelaalonzo5546]

Right now my symptoms are muscles pain in my leg and frequent subluxation in that leg. Just found a support group for north east America!!!

[@ehlersdanlosandi]

That's awesome! The support group, not the symptoms, I mean!

[@toph7]

Thank you so much for sharing! I can relate to most of these symptoms too. I’m going to be starting pelvic floor PT in hopes of improving some of my lower back/pelvis pain.

[@ehlersdanlosandi]

You're welcome! I hope the PT helps!

[@Truerealism747]

HAd it since a fall 26 years internal physical therapy does help strength training

[@badbadmoon37]

Damn, at 23 I decided to Google it, and now I’m panicking. My brother and I are twins, we both have a typical Marfanoid body type and have been hypermobile since childhood. I was also diagnosed with scoliosis in early childhood. And most importantly, at the age of 10, one doctor saw my hypermobility and wrote a diagnosis of EDS. But the family somehow didn’t attach any importance to this and I even forgot about the diagnosis. I worry that it could be Marfan syndrome, because my mother had vision problems and a rare heart defect, from which she passed away at 41. I’m running to a cardiologist...

[@ehlersdanlosandi]

That does sound concerning! I hope you get it figured out soon! If I were you, I'd mention your concern for Marfan Syndrome because it's more serious than hEDS and can be genetically tested for, so it's more likely that you would get seen and much quicker than if you were to just say you were concerned about hEDS. Good luck to you!

[@badbadmoon37]

I have excellent eyesight and my heart doesn’t bother me, although... Could there be a Slender body type with hEDS?

[@ehlersdanlosandi]

@badbadmoon37 the marfanoid body habitus is seen more commonly in EDS than in the regular population, but people with EDS can come in all shapes and sizes. I'm short and thin for example.

[@Truerealism747]

​@@badbadmoon37I have this just tested my heart ok at 43 to you have pain everyday

[@badbadmoon37]

@@Truerealism747 I had an echocardiogram of my heart, everything is fine, and I am not bothered by any joint pain, so I calmed down a little about this

[@Catlily5]

POTS, Muscle aches, hot and cold flashes and migraines.

[@jemimalamb78]

Does anyone else get muscle spasms or twitching?

[@ehlersdanlosandi]

Almost every day, yes! I've been like that for as long as I can remember, I kind of forgot about it as a symptom.

[@Hannah-Elise-23]

Yes and they’re really painful at least 50% of the time & mildly painful the other 50%. It is one of my most bothersome symptoms besides fatigue and just widespread joint pain, when it flares.