20 Comments
User's avatar
Tara's avatar

thank you so much for this conversation! I learned that I have hypermobile eds about a year ago. I had spent almost 10 years in and out of different doctors for GI distress and joint pain. at some point a doctor recommended seeing a special rheumatologist so I got on a 2-year wait list. I still hadn't heard of hypermobility or EDS but the intake blew my mind. the diagnosis made everything make sense and I was finally able to get the appropriate treatment. I work with a specialized physical therapist and she has helped me bring my pain from a 10 (I wasn't even able to sleep through the night!) to a 1. I feel so lucky that I found a knowledgeable PT and if anybody is listening to this and thinking this is them I encourage you to find a person who specializes. it makes all the difference! for me now I'm doing a lot of work trying to think of movement as my medicine and not diet culture.

Diana Fox Tilson, LICSW's avatar

Chiming back in to say how deeply I appreciated this interview. It helped me understand that I need to gain greater clarity on my diagnosis. I was told I am hypermobile but have not had genetic testing and have chronic GI issues, pelvic organ prolapse, joint pain, everything named here. One follow up question I had: does Estella have any recommendations for finding a PT who is knowledgeable about hypermobility? I have had some really bad experiences with PTs who seemed to come from the Jillian Michaels school of thought and have injured me further by taking a no pain, no gain, give it 110% approach. It was SO validating to hear Estella saying that less is more with hypermobility.

Anna Maltby's avatar

Thanks Diana! I’ll ask Estella if she has any suggestions. My tip here would be to check the Ehlers-Danlos Society website — they have a big directory of PTs who specialize in this. (It’s how I found her!!)

Diana Fox Tilson, LICSW's avatar

Amazing resource, thank you!

Anna Maltby's avatar

Hi Diana! Estella confirmed that the EDS website is probably the best way to go :-)

Diana Fox Tilson, LICSW's avatar

I'm so grateful you shared this resource! I used the directory and found a PT near me who can see both me and my son. 🥳🎉

Anna Maltby's avatar

That’s so great! Hope it goes really well

Lisa Sibbett's avatar

Thank you so much for this, Anna!

Diana Fox Tilson, LICSW's avatar

I love that you're doing this! I second the request for how to move with RA/psoriatic arthritis, as well as diastasis recti.

Rachel's avatar

I love the idea for the series! I'd really love one on how to move with RA (rheumatoid arthritis)

Anna Maltby's avatar

Rachel, I may have found someone to speak to about RA! If you have any specific questions please feel free to DM me.

Anna Maltby's avatar

That is very high on my list!

Hannah Harshe's avatar

LOVE this! Requesting How to Move with sciatica - although that might be specific depending on what causes the sciatica :)

Jenny's avatar

I'd love to know if there are folks out there who specialize in movement to help with symptoms of menopause. Thank you for doing this!!

Anna Maltby's avatar

Oooh such a big and good one! Adding to the list!

Dacy Gillespie's avatar

in the process of getting an EDS diagnosis, can't wait to listen!

Alisoncaryl's avatar

Excited about this!

Cynthia Gormezano's avatar

Amazing Estella! This is wonderful!!

hill's avatar

This is a great idea! Request for moving with endometriosis and/or ulcerative colitis/crohns. Thanks!

Sim's avatar
Jan 14Edited

This is amazing! Such a great idea, thank you. I have hypermobility, so excited for this. Also can I please request an episode on lymphoedema as I have this too 🙏🏻(secondary in lower body caused by cancer surgery)