I am sorry you feel that way. Hopefully that will continue to improve and evolve for you! - 💜 Alyssa

Mine would be a dog, because I love dogs and when I am feeling down or hurting, they will try to comfort me.

Aria! Thank you so much for sharing, since making this video, my hips have become a problem area for me as well. You are a hero too! There are no "who-has-it-worse Olympics" and you are amazing for handling your pain and still living your life. Thank you for stopping by; I am sending you lots of gentle hugs! - 💜 Alyssa

Hi Julie, I am so glad this was helpful fur you! I find compression garments are some of my favorite braces. I hope this winter is treating you well! - 💜 Alyssa

Yeah, my wrist is a common problem spot for me as well.

Yep! That is an excellent point, thanks for adding it to the conversation!!

Skin symptoms are the worst. I deal with a lot of itching (I think due to MCAS, but we are still looking into it), I hope you find some relief, and I hope others will let us know down below what they have found that helps them. 💜 - Alyssa

Hi noctoi, I feel you there; I think finger subluxations/dislocations are the worst. My knees have also been a little unsteady this week. Hopefully our joints will be happier next week! - 💜 Alyssa

It could be EDS, but those symptoms sound like POTS to me, and they are often comorbidities (meaning they go together for a lot of patients). Have you been tested for POTS?

Alyssa Layne I mean they tested my blood pressure from sitting to standing but that was it. But there were no changes from it so he then changed it to Eds after testing my my thumb and wrist. It’s really been so hard for me. I just want to be able to walk in a store and do my own shopping again. I’ve become a complete loner lol

If you think he might be open to it, ask for a full tilt-table test, it is possible that even though the sitting to standing change may not have been significant, you could still have POTS. You could also do your own test at home. In short, you lie down for as long as it takes to get a resting heart rate and then you stand using as little movement as possible (no excess bending of knees, fidgeting, etc.) and in 10 minutes, take your heart rate again. A good rule of thumb is that an increase of 30 beats per minute or more is indicative of POTS. I would also, just based on your symptoms, start doing some of the things used to manage POTS. Increase your salt and fluid intake and maybe try compression socks or leggings to keep the blood from pooling in your legs. I hope this helps and let me know how it goes!! Hugs 💜 Alyssa

Alyssa Layne thank you I’ll get back to you soon!

Hypermobility does not necessarily mean you have EDS, but it could. There is also a diagnosis of Hypermobility Spectrum Disorder (HSD) that can have a lot of overlap with EDS. Most rheumatologists are familiar with EDS and could perform the Beighton scale test, which can help lead to a diagnosis either way. Here is a starting point for learning about the diagnostic criteria for EDS and HSD. www.ehlers-danlos.com/eds-diagnostics/ If you think you might have it, it might be worth bringing it back up with your rheumatologist and seeing if they can diagnose you or rule it out, or if they can refer you to someone who can. Thank you so much for your question! I hope you get both answers and relief soon! 💜 - Alyssa

Unless you have systemic symptoms as well, it is most likely hypermobility spectrum disorder. I’m more than happy to answer questions.

thank you so much for tagging in on this question @Maya! I appreciate you watching and helping others in the community! 💜 Alyssa

Hi Mel! It is entirely possible or as Maya says you could have a hypermobility spectrum disorder (which is similar to hEDS). Here is a website with the diagnostic criteria www.ehlers-danlos.com/heds-diagnostic-checklist/ it can be helpful information for you or to take to your doctor if you are still pursuing a diagnosis. My fingers and wrists are problem areas of mine as well, and now that it is cooling off where I live, they are really becoming more difficult. Thank you so much for watching and for commenting. I hope you are feeling better and that you are on the path to ever-better health!! With much 💜 - Alyssa

Alyssa Layne Thank you so much for the criteria list. It was so helpful. I definitly have to bring that to my doctor to diagons me officaly but I passed all the criteria.

I'm so glad it was helpful! I hope are able to get that official diagnosis, but in the meantime, it is good information to have! 💜 - Alyssa

I'm sorry to hear you are sick, but it's good to hear that your doctors know about EDS and have a direction they are looking in! Big joints are the worst to have out, so I hope your shoulder feels better soon! Hugs 💜 Alyssa

Alyssa Layne thank you’ve helped a lot with understanding what I’m going through as I don’t understand myself. The only thing holding back is they want me to get blood drawn to rule out any deficiencies however I’m absolutely terrified of needles.

I'm so glad I can help! Remember that it is a good thing they are looking into deficiencies. My best tips for dealing with needles is to not watch, so you don't know when it is going to happen, take calm even breaths, and walk in knowing and thinking of a place that makes you happy. Sometimes I like to picture the ocean with my breaths matching the waves - visualizing the waves slowing to give me a calm breathing pace. I hope everything goes well and that they find the perfect answers that will bring you an explanation and healing!! Much love, Alyssa

Hi Daphne! I love the idea of a panda as a mascot! I have always loved panda bears, and this just gives a whole other reason to love them even more. Thank you so much for stopping by and sharing! - 💜Alyssa

It is so great that you know that! I actually know several people with cEDS. Other than hypermobile, it seems to be the most common amongst people I know. It is also good that it is not one of the super dangerous ones. Thank you so much for stopping to watch and to comment! 💜 - Alyssa

yes absolutely!! I love seeing people educating about EDS! it goes so unnoticed all the time! #invisibledisability

It truly does go unnoticed! Even many of my doctors just gloss over it and don't seem to realize how big of an impact it has on my health. Hopefully things are starting to change as more awareness about lots of invisible illnesses increases! 💜 - Alyssa