80% sure I have EDS

I’m fairly sure I have elhers danlos syndrome and no, i’m not a hypochondriac and I don’t think google can be just as good as a medical degree. While I don’t think I’m more knowledgeable than a doctor, I do know my body best and know how to research. It would just make so much sense, especially looking back at my childhood. So many symptoms just line up and If I get it confirmed, it would just be a relief to finally have a name and reason that explains so many issues I have. I mean, my mom and siblings have many of the symptoms too.

[Badbessie]

My family as a strong history of EDS. Sadly as you probably know there are thirteen different conditions linked to the EDS syndromes. They are often not diagnosed or worse misdiagnosed. Are there any other family members with EDS?

[Hidden in reply to Badbessie]

i’ve read about that and someone told me that it can take years for doctors to diagnose since no two cases are exactly alike and doctors often dismiss women’s pain as less serious than it is. It’s possible, but they haven’t been diagnosed and they didn’t even know about eds until I told them about it.

[Badbessie in reply to Hidden]

In my wife's families case 3 of 4 children have EDS in one family. Nearly all the females have Joint Hypermobility syndrome type 3 to some degree. Due to the family history it was fairly easy for the Doctors to make a diagnosis. Personally I would make a family tree listing the type of symptoms each person as and give to your GP. GPs can often ignore a lone individuals problems as being anxiety related. However if your present it as a family problem affecting all they cannot say it is in the mind of one person.

[johnsmith]

You say: "it would just be a relief to finally have a name and reason that explains so many issues I have." I share that viewpoint. However, has you have found out having a diagnosis is the not the same as having viable treatment. You must do your own investigation to develop the management skills to get the best quality of life possible.

Your doctor only knows a snapshot of the condition. The snapshot may not be the same as what you experience.

[Hidden in reply to johnsmith]

where did I say having a diagnosis is the same as having a viable treatment? because I didn’t.

[johnsmith in reply to Hidden]

As you say you didn't. I was not intending to imply you did. It appears what I intended to mean got misinterpreted. The trouble with language sometimes. I know what I meant, but I don't always use the right words to convey that meaning.

[Cb1963 in reply to johnsmith]

Yep I understand what you mean, and it's a fine line typing a simple message that can easily be misconstrued, or misunderstood, sometimes when I'm texting you have to be so careful in how things are worded, and even telling a joke in the form of a message doesn't always seem funny, and the other problem is that the you then have to try and think how the other person is going to read the messages, I find messaging can sometimes create more problems than solve them,oh well I'm pretty sure the world will keep on spinning around, the least of our worries lol, ttfn.

[Hidden in reply to johnsmith]

I totally get “saying the wrong thing” and i’m not mad but the way it ‘was’ worded, implied what I thought and the overall tone of the message just felt like a lecture with unhelpful information and no clear point.

[Busybeelady]

I know what you mean about finding out what is causing your symptoms! When you dont know , you just feel like people think you're making it up !!

[Barbara-41]

I could have written the exact words you posted!

[Itsallinthehips]

Have you been to a rheumatologist? Or your gp to refer you?

[Hidden in reply to Itsallinthehips]

i won’t have health insurance until june an the insurance i can afford doesn’t cover specialists unless it’s to treat a life threatening issue.

[Itsallinthehips in reply to Hidden]

Oh ok sorry I thought you were in the uk x

[Hidden in reply to Itsallinthehips]

you don’t need to apologize

[cyberbarn]

GPs can now diagnose hypermobile EDS themselves with the RCGP EDS Toolkit. Take the link in with you to your GP and they should be able to help you. Some rheumatologists know about EDS but most don't and are more likely to fob you off with a fibromyalgia diagnoses, which is doctor shorthand for 'probably all in her head'. rcgp.org.uk/clinical-and-re...