Newly Diagnosed with Hypermobile EDS - Seeking Tips and Resources

I know how overwhelming it is must be a little sense of relief. I was diagnosed back in August. Did the doctor put you on any medication to help? On my good days I try to take walks so I don’t get too stiff. Don’t overdue it though know when it’s ok to relax.

Everyone will tell you to try yoga, you might have people who have already been telling you this for a lot of other reasons, but don’t. Yoga is actually not good for people with hEDS bc it is so focused of the flexibility of your body, it’s way too easy to overdo a pose and end up causing more harm than not. If you are an exercise person or looking to get into something Pilates is actually fantastic for hEDS bc its all about strength building in practical ways- especially building muscle around joints.

My main thing would to make sure every doctor you see, whether PCP or specialist has at least some understanding of EDS. Something like GI or Rheum or Surgeon needing more knowledge than like Dermatology Figure out what your biggest EDS problems are find solutions now that you know the cause. For me a major issue was that I had bad issues with my feet my entire life, when I got my EDS diagnosis I went to a podiatrist who specializes in EDS- my Ritchie Braces have changed my walking game completely. There is no medication or treatment, but little changes or different mobility aids can make an enormous impact in your quality of life now that you know what the issue is

Oh I just remembered this too! ehlers danlos makes you more resistant to local anesthetics so if you get any dentist work done or need stitches or anything let the doctor or dentist know cause they’ll probably have to use a LOT.

I was diagnosed this March, and the pain specialist that diagnosed me put me on low dose naltrexone. It’s for addiction, but a low dose can help with pain management

Have printouts of info on eds for doctors. Also look up physical therapy exercises and have braces for the joints that give you the most issues but only use as needed. Also if you aren’t allergic KT tape is a great resource

The diagnostic process is the worst. I feel you. It's overwhelming. Especially when Noone in your life understands. I don't have a lot of tips because I'm recently diagnosed myself but just know you're not alone!

Congratulations! I don't have the money to go private and I'm on the NHS waiting list and currently sitting at 7 years to see a rhumetologist