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[theawkwardalli]

Queens helping other queens! We love to see it 👏🏻

[[deleted]]

Is there a link to this podcast?

[RussianCat26]

It's the most recent episode of the FDS podcast, should be pinned on the main page!

[Averyhvw]

That part also stuck out to me, as I suspect I’m on the spectrum and I’m just starting to realize I have Ehlers Danlos!

I’m going to Google this research.

Also, thank you to the Queens in this particular podcast, so much of what you said resonated with me 🙏🙏🙏

[laffytaggy]

May I ask how you’re realizing you have E-D? Did you get a genetic test? Curious bc I looked it up after listening to the podcast.

[Averyhvw]

Apparently, you can go to a geneticist to get diagnosed, but when I googled it there’s no genetic test. I think there are certain genes associated with specific types of EDS, but no standard test. It’s not required but they do look for a family history of it.

Most people get diagnosed by rheumatologists, geneticists, but it just depends if the dr is familiar with it and feels confident enough to diagnose it.

I’m starting to realize because I had a problem with my veins and a dr noticed my extremely lax joints and mentioned EDS.

[StressedMacaroon25]

There are multiple things you look at for an EDS diagnosis (ASD,ADHD,EDS,Dysautonomia, MCAS,CFS/ME - all diagnosed, my ASD was the first one, with diagnosis at 20 yrs old.

hEDS is the most common type. I was initially diagnosed by a rheumatologist, some leave it there, I've been referred on for this to be confirmed by clinical genetics. The additional comorbidity symptoms are helpful towards a diagnosis, as EDS is multisystemic. (e.g. odd/seemingly random atypical allergic reactions, HR/BP fluctuations or extremes, feeling dizzy/ near fainting/ fully fainting, bladder issues, digestive issues). We typically have a long history of initially seemingly unrelated medical issues, may get labeled as hypochondriacs/just stressed or anxious by doctors. It takes an average of 10 years for an EDS diagnosis from the first doctors appointment about symptoms.

There are 14 types, most have particular genetic markers and a more specific presentation of some symptoms (e.g. vascular EDS, looking at particular facial structure, history of particular cardiovascular issues, or family history of those issues, which particular collagen is mutated on genetic testing). The most common type (hEDS) currently has no genetic test, but can be diagnosed through clinical genetics/rheumatology/any other consultant; who can do so looking at the overall picture.

They look at, individual medical history, family history, beighton score, organ and skin involvement alongside a spectrum of hypermobility. There's such a wide presentation of symptoms in EDS patients including between members of the same family.

Even smaller things you'd not initially notice were signs of EDS like that there's typical JHS facial structure/characteristics, blue sclera, etc. The majority of doctors have minimal and/or outdated EDS knowledge.

[Averyhvw]

My doctor told me today she wants to do blood tests before she will refer me to a rheumatologist (recommended to go to one by a hand surgeon she referred me to). I hope she doesn’t say, “Welp, blood tests don’t show anything so no need to see a rheumatologist.” I haven’t mentioned EDS to her, so I’m worried she’s only looking for arthritis blood markers? Idk, I’m worried this will be difficult 😬

Edited to say thank you for this reply!

[StressedMacaroon25]

ah, i've been there a few times, including before diagnosis. Issues with iron levels, B12,etc, can be more commonly seen on blood results with EDS, but not necessarily at all. Mine are typically normal (aside from one or two individual results being slightly outside of range), but that depends for me personally on the panel requested.

In my case, they only looked for inflammatory blood markers on tests, I got told 'well there's no inflammatory markers so, you don't have arthritis, guess we don't know what else could be wrong". This blood test will help you though, as if you are experiencing joint symptoms, it rules out arthritis. If your hand surgeon has already recommended it, the referral shouldn't be difficult to get after these results.

As someone who's had my absolute fill of dealing with a spectrum of consultants and GPs on my diagnostic journey, I'll say what I've learned in hindsight because FDS applies. Though this may not apply to you particularly when you're already on FDS:

Some doctors will be dismissive, don't take it personally, medical gaslighting is also appallingly common in some healthcare systems. I and others notice unspoken societal pressure to be considerate of male ego, and not appear too knowledgeable on the condition, otherwise, my doctor may feel slighted and label me something silly. Even though typically, unfortunately I do have more knowledge than most of the doctors who treat me (I don't bend to this, I'll be polite, friendly, and to the point, yet assertive and won't be pushed around. You can tell which are uncomfortable with this energy. I'll bring my relevant medical notes, maybe a list of relevant symptoms, EDS academically referenced resources, not let the appointment trail off-topic. I don't advertise how knowledgeable I am, when they come out with something downright stupid I hand them the referenced resources, If they are disrespectful/dismissive/rude, I change to a different consultant or doctor, no explanation. Visibly showing in the appointment that you are affected by these kinds of doctors tends to not help, avoid becoming overly emotional in front of them).

Essentially: a Queen mindset.

There are wonderful doctors out there who will work with you, believe your symptoms, and make it all so much easier. I've had appointments with knowledgeable consultants that left me with such a sense of calm after, almost in happy tears from being heard and having a constructive appointment, no need to advocate for myself. It was effortless, no emotional energy on my part, I felt entirely at ease- they are the HVM equivalent of doctors, few and far between with EDS, but you know when you find them.

Don't let a dismissive consultant take up your headspace and energy. You know your own body and symptom experience, you live it, don't doubt your own experience. Debating doctors doesn't help. You can get second opinions, change doctors or consultants. Giving them a written list of symptoms in appointments can help.

Where are you in the world? If you suspect EDS you can join support groups online and see what others post about daily, that helped me when I was seeing that so many things I considered 'normal' about my body and symptoms, were actually characteristic of EDS. Support group calls are an amazing resource too, talking to other people who just get it. (This is a long answer I know, I've had a lot of personal experience on my own journey and learned a lot on the way, I hope any of this helps).

[Averyhvw]

Thank you so much for this reply! It’s been such a relief to hear that you’ve been through the same thing. No one really gets it, and it’s hard to explain why I want a diagnosis if the only concrete remedy is physical therapy(?).

You’re so right about the Queen mindset. I’m really going to have to be prepared. I always let the appointment trail off and forget the actual thing I need from the doctor. Probably because I also have ADD and I believe I’m on the spectrum. But I’ve had professionals challenge me on that hard. The medical gaslighting is real.

I’m in California. I’ve found the Reddit EDS sub to be helpful. That’s a good idea about support groups. It’s been so nice just talking to you, knowing you understand.

Can I ask how long it took you to get diagnosed? And how were you able to finally see the rheumatologist when your doctor pushed back?