Seeking advice on EDS diagnosis

It took me until I was 20 to get diagnosed after dealing with symptoms for my whole life. Using cbd roll ons, braces, physical therapy, heat and cold therapy, lots of rest, and epsom salt baths are great. Listen to your body and what it needs and be gentle with yourself, even if the doctors aren’t saying the same thing.

Aqua therapy is a life saver

I use splints and braces everywhere. I dislocate doing nothing.

Diagnosis is the hardest part

Right after receiving the diagnosis, I suffered from severe wrist pain. It turns out that over the years, the tendons and ligaments were damaged from hypermobility, which resulted in hand pain. They recommended I use finger splints that help reduce pain and prevent hyperextension.

Braces can be great for quality of life but you have to be careful, using them constantly without working the joint will lead to the muscles deteriorating and make the issue worse. The muscles have to hold your joints together with EDS because the tendons aren't doing it so the best long term advice is lots of physical therapy. You have to very carefully build up muscle without putting too much strain on the joint. Finding a good physical therapist is hard but sooooo worth it!

After I was diagnosed with EDS I started to exercise, especially pilates and cycling. The exercises helped me strengthen my muscles and stabilize joints. And one more tip from me is using cold compression if you suffer from any pain.

Unfortunately, EDS is a slowly progressive syndrome, which needs routine monitoring and management. Eventually, EDS can be quite debilitating, but it usually takes many years. If you're young and well I wouldn't stress about a few months of delay, but if you feel any rapidly worsening symptoms, maybe see another specialist in the meantime.

Definitely use braces, also any other mobility aid that helps. It took me a long time to start using mobility support and makes a huge positive difference. Personally I have more complications with commorbidities than EDS itself so make sure you take care of your whole body not just the joints.

I'm waiting on a diagnosis too, it's hard. My main advice is to get good braces that support your joints. I experience lots of subluxations and it's not fun, so be kind and gentle with yourself.