Ehlers-Danlos Syndrome: Letting people in, getting through

[neartpuppy]

I've been diagnosed with EDS for just less than a year. This was very helpful and encouraging! Thanks :)

[TheCassiFish]

I'm definetily wanting to take it on myself and feel i can always handle it, and i do feel ashamed to need the help since there's no.... physical observational problems, and since i haven't dislocated anything major (just my jaw... or was that a subluxation... i dont remember).

You brought up, again, a lot of things that ive been having to face dealing with lately, thank you soooooooo much for helping.

[mystery8881]

How does a person know the difference between fibromyalgia and EDS? There's some hypermobility in FMS as well... I'm just confused cause now that I think about it i do have this feeling of "loose, popping" joints although I can't do the stuff most ppl with EDS do (I'm stiff)... doctors don't seem to know if I'm hypermobile or not... some say I'm "extemely hypermobile" and some say I'm too stiff to be having that problem.

[ufo8mykat]

@mystery8881 Hiya, EDS is diagnosed in part based on the Beighton score. Look that up, take it to your doc, you may be able to answer that together. :)

Be well,

Sama

[tonnymax2004]

thank you for your video, i really learn from you and i admire you for what you are doing and faighting with this desease, you are a brave woman. all my respect.

Alex.

[ufo8mykat]

@tonnymax2004 Thank you, Alex, it's a lot to live with, but I hope we can learn from one another and get through, rather than give up and just stay home. :)

[Sock22]

Hi there! Please don't stop making videos, yours are among the most helpful for people with EDS that are out here. Your attitude and insight are great. I smiled at your apology right next to the video, because I am one of those EDSers basically "stuck" in that (electric) wheelchair for most of the time, but really: that isn't that bad either ;-) You just have to find new ways to live and enjoy life, as we all have to.

[ufo8mykat]

Hi, Sock! Thanks a lot for your reply and comments. I've not made an EDS video in a while, but I'm encouraged by your suggestions. :)

Be well,

Sama

[rachelkeira]

You have a great attitude! I have recently been diagnosed with Hypermobility EDS and I, too am wanting to learn how to manage my life so I can get the best quality with what I'm dealt. Finding the right docs and seeing what the future may have in store can be discouraging, but at the same time I'm thankful to finally have answers and put the pieces together. Keep your head up (and if we can't do that today, we use pillows!).

[ufo8mykat]

Hi Rachel,

That's exactly right! Sounds like you're in the best place to live a very good life.

[blondee84]

Thank you so much for this video! I have been dealing with a lot of these issues and have been in a pretty depressed mood lately. This video gave me a lot to think about and your optimism and outlook is extremely inspiring. Thank you so much!

[ufo8mykat]

Hiya,

Thanks for replying! I'm sorry for my late response, but I am definitely glad to hear you're working through life with EDS. It's easy to get down, so keep tight in sight of what's important to you. :)

[mayantigresa]

I have EDS type III and this video made me cry at some points because I can totally relate to everything you said. Thank you for posting this.

[ufo8mykat]

Hiya,

Thank you for sharing this with me. I'm always trying to push the envelope, but I never want to offend anybody. I'm glad to help!

What do you think was the strongest pluck on your emotions, if I may ask? Would a private message be more apropos to ask?

-Sama

Sama

[djonma]

I just found this video!

I have EDS, Type III, though have a lot of the eye and skin issues as well. I've subscribed to you and favourited this, it's brilliant advice. Exactly what I need!

I'll watch your other videos over the next couple of days, can't wait to hear your other good advice!

[ufo8mykat]

Hello! Thank you for writing in! What an encouraging comment! To be honest, I had almost decided not to make anymore videos, in case it wasn't helping anyone. So your response means a lot to me. Please do comment with anything, even disagreement. Better we should solve discrepancies and appreciate how diverse we are as a group!

[unmeasuredinstances]

You simply exude an amazing spirit and heart. How fortunate i feel to know you.

[ufo8mykat]

Thank you so much, Sarah! I'm glad you took the time to watch my video and to comment, as always. You are an inspiration. I have grown so much by your and Diana's support! Can you believe that so much of my work is because of your encouragement? :) You are wonderful.

Love,

Sama