Top products from r/Hypermobility

Bless your heat kiddo! I'm 45 and didn't get my dx until two years ago. Always had issues but not nearly as bad as yours. Could you use a bag on wheels like for groceries and moving things around the house? I've a foldable plastic cart that looks like this and you could use it to sit on when you get winded perhaps? Mine doesn't have a lid but it sure would be handy.

Sex life is possible!! Granted it's not like when I was younger but is still possible to have those fun randy moments!! And, there are therapists out there that can help you find positions that won't hurt quite so bad.

My youngest has it worse than I and Lyrica + Cymbalta has helped her so much for the day to day pains if back, neck ... life?? You might have to start out with gabapentin as it is cheaper but not everyone responds to it.

The best advice I can give you is to Advocate for yourself. Make a binder with a timeline of all your dislocations, diagnosis, medications tried and which doctor prescribed them. This gives a physician an overview quickly and piques their interest I find. Take a friend with you to your appointments! I forget to tell my doc so much and my husband will often times have to remind to tell the doc. Also, does your healthcare system have patient advocates? They can be extremely helpful as a liaison between you and your medical team.

Gosh, sorry if I overwhelmed you by rambling. Feel to PM anytime. I'm nit able to work anymore due to the EDS&POTS and taking care if my kiddos so I'm online almost every day. <hugs!!>

Edited:broken link

I would recommend seeing a physiotherapist who is knowledgeable about hypermobility. They'll be able to advise you on any bracing and exercises you'll need based on your daily life, and specific issues. They'll also be able to tell if other parts of your body are involved in causing the pain and instability (often issues with the lower back and hips excerbates ankle and foot pain).

Be sure to let them know that you are wanting to build up your long-term strength and stability, or they may simply release spasms in your muscles that are actually spasming in order to protect your joints. Be prepared for it to take a year or so for your muscles to be strong enough to protect your joints without spasming.

You may want to take a look at this book. While it's written specifically for people with EDS, it's helpful for any of us on the hypermobility spectrum.

It’s called stenosis of the spin and you can correct it with exercise/PT and making sure you get and maintain good posture. Also I got these bc I read a lot and it actually helps 🤓

vinmax Bed Prism Spectacles Horizontal Lazy Glasses for Reading and Watching TV Unisex https://www.amazon.com/dp/B01MXF4QXP/ref=cm_sw_r_cp_api_i_oHB1Db28QZK1D

Pilates instructor here, not sure I can offer any serious advice without seeing you in-person. From what you've said, I wouldn't be surprised to see a kyphosis and a slight scoliosis and getting you pain-free would involve focusing more on your hips/core and breathing technique to get permanent pain-free results. Consider a lesson at a Clinical/Classical Pilates studio (avoid the cheaper mat classes offered in gyms and the like).

This book might interest you, it's by a Pilates teacher with hypermobility : Hypermobility Without Tears: Moving Pain-Free with Hypermobility and EDS by Jeannie Di Bon

When you feel stressed, try practicing lateral (Pilates) breathing. Long, gentle exhales will relax the Parasympathetic nervous system, taking your mind out of Fight or Flight mode and lessening pain sensations. Here's a link to a Pilates breathing Playlist, you might like to practice some of the other Pilates exercises on her channel.

I'm late to this party, but the two exercises that made a huge difference for my ankle were circles on a baps board (similar to this) and balancing on the leg with the problem ankle while I brush my teeth. I use the balance board when things are really bad, but I don't brush my teeth on two feet anymore. Building up those stabilization muscles have helped SO much.