Howdy, everyone.

[Andy]

Hello, everyone. I am obviously new here. You may call me Andy. I am a 21 year old male and I have not been diagnosed but I highly suspect I may have HEDS. Right now it is more a matter of how to bring the possibility up with my doctor without him immediately labeling it as it "all being in my head" or thinking I am just some hypochondriac (this is a new doctor that knows little about my full medical history, though I cannot see my old doctor because of an unrelated medical issue she is not knowledgeable on).

I suppose I should tell my personal story here if nowhere else (I apologize in advance for the length). And after reading I would like to know if it would be reasonable to bring up the possibility with my doctor.

Anyway, when I was 11 years old I was running across the gym floor before PE class when my knee subluxed for the first time. By the age of 15 I had been diagnosed with flat feet, patella subluxation in both knees, TMJ, as well as irritable bowel syndrome. Since then I have been diagnosed with/acquired carpal tunnel syndrome, plantar fasciitis in both feet, and Achilles tendonitis in my left ankle (or at least I have something that presents itself very similarly). This is discounting any injuries (detailed next) I've had or any undiagnosed pains I experience.

I can barely write more than a paragraph before my hand cramps up so horribly that I have to take breaks constantly, and this has been an issue since I started writing more in school (so essentially since I was in elementary school).

In the last year and a half alone I've sprained my lower back, my ankle twice, as well as my right wrist and elbow. My left knee (which is the worst of the two) has subluxed 6 times and my right knee 3 times, mostly while simply walking or lightly bumping them into something. Once while just standing there (though this has occured in the past on a few occasions as well)!

As far as general pain goes, I experience constant pain in my knees, hips, ankles, feet and toes, and my lower back. I also experience pain (to a lesser degree) in my hands, wrists, elbows, fingers and thumbs, and the middle and upper portions of my back, as well as my neck.

Chronic fatigue is a constant issue, and I am regularly plagued by on and off diarrhea and constipation due to the IBS, which at times gets so severe that I end up vomiting.

It should also be noted that I came across EDS when researching causes for what appeared to be poor circulation in the hands (my hands are a few shades darker than the rest of me, as if I've cut off the circulation to them) which led me to Raynaud's which led me to EDS.

I've tried various pain medications: 1300mg of Tylenol arthritis (two 650mg tabs), 800mg Ibuprofen, Tylenol 3 with Codeine, and 750mg Vicodin. None of these even take the edge off, much less relieve me of the pain.

The pain in my left leg, especially my left ankle, is getting so severe that my mobility is incredibly hindered, which is a major issue considering the nature of my work (I am currently a direct care worker for the elderly with Alzheimer's and dementia -- not the right job for me to have given my physical condition!). Nearly every day after work now I spend the entire evening crawling through my house because I cannot bear hardly any weight on my ankle and have no method of support to help.

I spend many nights crying not only because the pain is so great but because so few people believe me! I cannot tell you how often my seniors make comments like "how do you think I feel? I'm old enough to be your mother!", or I'm often told to just "take some tylenol and deal with it". One co-worker is constantly telling me that I need to start going for walks/runs, and accuses me of making excuses to be lazy when I tell her such activities worsens the issues and pain significantly!

I have spent years with doctors and those around me invalidating what I am experiencing, so now that it is becoming a MAJOR issue and I NEED to talk to a doctor about it, I'm scared. I'm scared that if I bring it up with this doctor that he won't believe me, just like everyone else. The only person in my life who offers any real support is my girlfriend (bless her heart).

So I find myself here, in hopes to find support and advice, and perhaps a little bit of validation.

[SophieeBabessxo]

Welcomee

[ReineDeLaSeine14]

Welcome to EDSKids.

While none of us can diagnose you as we aren't doctors I see you are over 21 and can make your own decisions (I'm 22).

My question for you is: Do you notice this stuff in any of your family members? It is very possible to have EDS without having family members with it but it certainly helped me get diagnosed. If you suspect EDS (and I think it's reasonable) then I suggest you make an appointment with a geneticist.

May I ask what the other medical problem is?????

Good luck...hope to hear from you soon!

[Andy]

Yes, I indeed am capable of making my own decisions, however because of my insurance I need a referral from my primary care physician in order to go see any specialists or any other doctors.

I know my family on my mother's side has a history of joint (especially knees) and bowel issues to varying degrees, as well as a heavy history of endometriosis, though none have been diagnosed with EDS. I am, however, unsure when it comes to my father's side of the family. I'll have to talk to him about it.

I am not quite yet comfortable disclosing the entire nature of the other issue at this point. It is not something a lot of people are accepting of, so I don't go around advertising it.

[ReineDeLaSeine14]

If you want to PM me about it please feel free...I've dealt with some pretty stigmatizing mental illnesses so I can sort of relate...I'm really open.

As for the EDS, talk to your family and then talk to your primary and let them know that you have family members with all these problems and that's why you suspect you have something that is genetic (EDS or otherwise).

[Andy]

Ok, thank you. I will PM.

But, I just spoke to my mom about family history, any clumsiness, skin issues, easy bruising, etc., in addition to the known joint and stomach issues.

My mom bruises incredibly easy and has always been extremely clumsy (frequently stumbling, twisting her ankles, etc.), and bruises incredibly easy (she also has early onset arthritis, though I'm not sure that is relevant). My grandpa cut and bled very easily in addition to his joint issues. On my grandmother's side, both her and her mother (great grandmother) have clumsiness (same as my mother) as well as diverticulitis, which my mom has the beginnings of.

Can family members have a more mild form of EDS and others have a more severe form?

[ReineDeLaSeine14]

Yep. My sister has a normal life whereas I'm more severely impaired.

Your mom's arthritis is relevant. Wear and tear we have and injuries can make it crop up early. I got rheumatoid arthritis at nine.

[Katherine]

Hey *waves*

It is possible to have EDS without any of your family having it, I have it but my mum and sister don't and my dad didn't either.

[Katherine]

Hey *waves*

It is possible to have EDS without any of your family having it, I have it but my mum and sister don't and my dad didn't either.

[TinyBrooke]

Welcome! *waves*
It is definitely possible for you to not have any family members at all with issues. We suspect my EDS came from my mom's side, but the only things we can back that up with is my grandma's supersoft skin and the fact that my mom's hips are way messed up and have been since birth (they were dislocated when she was born). My dad's side of the family shows nothing at all except hearing loss, which my sister and I both have, though my dad's and grandma's (on my dad's side) was caused by aging, not hypermobility (like mine and my sister's). My sister and I are the only ones in our family with EDS.

Hmm... That was a lot longer than I intended. Anyways, back to my original point.
We're glad to have you here! Don't hesitate to message me or just about anyone else if you have questions.

: spoon: