Undiagnosed and rare conditions
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Undiagnosed EDS?

jennieojennieo Member Posts: 2 Listener
I think that I have been suffering with undiagnoised E-D for decades. I am almost 60. People tell me I look not barely 40. I have stretchy skin, super soft skin and no wrinkles, weird cigarette scaring on wounds, keloid syndrome, curvature of my thoracic and L-S spine, an abnormal heart value, a history of tachycardia, 'double joint' ability, migraines, fibromyalgia, a hiatal hernia, IBS, weak bladder, joint pain since I was 12, endometriosis, and a slue of other odd symptoms. I am pretty sure my mother had EDS. Anybody else have this array of symptoms? 


  • jennieojennieo Member Posts: 2 Listener
    Just reaching out to a community that does have what I may have. Just hoping for support. No judgement. Just curious. 
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello @jennieo and welcome to the community. I am very glad you found us.
    I know that we have members who have or are familiar with Ehler Danlos and have no doubt that some of them will be in touch with you. Things do tend to be a little quiet on a Sunday though :smile:
    You've found a safe place here, are among friends and we are very glad to have you with us. The whole group is friendly and anything but judgemental, so please don't be afraid of sharing anything.
    I'm going to 'name drop' someone here who I know has posted on EDS before and who may be drawn to your post @timoglock
    Bear with us and I am sure others will be along to chat with you, and if you want to rant, rave or anything else, there's always me :smile:
    Warmest best wishes to you,
  • timoglocktimoglock Member Posts: 27 Courageous
    @jennieo Hi,  your description does sound familiar.  EDS is genetic and there is a genetic blood test for all but the most common type of hypermobility EDS, hEDS.  You could have a look at EDS UK SUPPORT, the charity. They also have meetup support groups.  Also, if you haven’t done so ask your GP for a referral to a rheumatologist. I would suggest just to list your symptoms rather than say you think you have EDS. Do let me know how you get on, best wishes
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @jennieo, and welcome to the community! Thanks for sharing this with us- hopefully our community members will be able to share their own experiences, but as @timoglock says, do discuss your symptoms with your GP. 
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