Me too… I’m 42…. I never thought I had anything wrong- I just thought I had a fucked up body and was maybe imagining things, related to injuries, pain, different illnesses etc…. Turns out it’s likely EDS….

33 and got my EDS diagnosis last year and then Covid shut the world down for everyone. But getting through lockdowns was so hard but with a diagnosis it made getting through that tiny bit easier. When people are in limbo it is the same pain, same frustration, same feelings, same despair every day. With a diagnosis those days get slightly easier. Take care April and be gentle with you. :)

@@gabrielstone8548 - not funny, but, I too was diagnosed in April! My doc brought it up June 2020 and said she felt very confident I had it… but I was not interested in more medical stuff so didn’t do the testing til this past April… I def have a mild case, but it explains so much!

@@kecrn4132 A mild case can be just as devastating imho, it is still life altering and soooo interfering and hard. Your doctor should not have dismissed you like that, EDS and HSD are severe and chronic (even the milder cases :)) I would try and find a specialist through your GP and get some true answers (beware the waiting lists are horrific but at least you'll be on the road to some help if you ever need more than you have now.) The EDS and HSD community have been amazing though boosting knowledge and confidence on an illness that is so complex. Much like Fibro and ME/Cfs it needs more research and more education. Wishing both you fabulous folks all the best. 🙂

@@gabrielstone8548 thank you so much for your response! I so appreciate it! Definitely it has had a huge impact on my life… I’m an RN but because of some serious injuries, the likelihood of me being able to do bedside nursing again is none, really… and I have the immune compromise components and malabsorption components as well…. Thank you…. Honestly. I’ve always kind of felt that I have nothing to complain about because others have it so much worse. But your response really made me think and validated how I sometimes feel. I am in Canada and I am currently on a waitlist for an EDS clinic in my province a number of hours away… The wait is apparently about two years!! I hope that where you are, you have been connected with a team and supportive people?? I definitely agree that way more research needs to be done and so few people have even heard of it. Thank you, again!

I also had an elective lbka for an infection I chased for a year.jo was a great source of unbiased info.unfortunately I didn't find you and many others in my new community of amputees! We can all learn from each other.every case is different but all have similar struggles to overcome

@@davidjtefft jo has been an incredibly encouraging source for me. She gave me the courage to have my LBKA. Thank you Jo! I started my channel since I was going through decision making. I didn’t see a lot of decision making info when I desperately needed answers. Maybe all of us together can help people make informed decisions 💖

Doctors do not care anymore.

@@julians7268 I still think they genuinely care. But maybe are you restricted and /or busy. They can’t care how they want. At least I hope they still care. 🥺

@@ElectiveAmputation Jo helped you and now you're helping me and others. Experiences gain value when they are shared.

It really is it just usually doesn't feel like that. Especially when you've been searching for answers for years. And test after test, you get told everything is fine. It's frustrating and at a certain point you start to question if you're making it up or not

It is but there’s this frustration and depression you can’t explain to those who haven’t had to deal with chronic illness and be told over and over that this or that has been ruled out because while yea it is great it isn’t this or that. You are still struggling and have no answers. Not having the answer, no matter how awful or not that might be, is extremely difficult.

@@kirstenornelas881 this is true too

@@gymnastic_queen6711 i know that feeling too

I second this - except I also know Jo has had trauma in the past that would make that kind of therapy difficult. I know my therapist specifically asked about trauma, I would hope a good one would be able to accommodate and minimize discomfort... I can't imagine how difficult that would be after trauma though.

@@kellylarsen1668 That’s a VERY good point! Definitely a must to find a sensitive and understanding PT. I would happily give information for mine if requested!

Fibromyalgia also doesn't help. I noticed for me being under weakened my bladder for awhile after ankle surgery. I do think pelvic floor therapy could help. But you could also do it by yourself Hannah Witton does a video on kegals. 😁 I am so very happy that your surgery went good and the recovery is going great also! I was so concerned for you. Woohoo you are healing! 🎉🥳

I recently started pelvic floor therapy for trauma and pain. I also recommend! It’s uncomfortable, but it makes you feel like you actually have control over something so debilitating.

@@JuicyPricklePeach Please talk with a specialist before starting kegels. They can do more harm than good depending on your situation

Lol, me too, as soon as she said something I couldn't look away... 😆

Yup. From the beginning of the video I was just staring at the tea, waiting for the inevitable splash. The anxiety 😳

So very true! Those are excellent points.

PT can reduce so much pain!

Exactly. I’m not an amputee but I go have a 1 inch shorter leg on my left side and scoliosis which meant I had shocking back, pelvic, hip and knee pain. First thing my physio did with get me was helping me strengthen and condition my pelvic floor as well as the other muscles. Now I’m back working in aged care and over the moon.

Also considering Chiari, does she have an EDS diagnosis?

Tocophodermis is also really good for scars.

omg this is litteral me :o

This is me too. I have extensive medical problems and even doctors I have who are notorious for bad bedside manner (like my neurologist) have assured me that my problems are genetic and nothing I've done to myself. And yet I get the occasional rando doc who likes to tell me losing weight will solve all my problems. I feel you. Sending love ❤

I’m so sorry this happens to other people!! And this doctor straight up told me “yea I didn’t bother to read your medical history” 🤨. We just have to stay strong!

Lmfao

I'm having a colonoscopy in the next days and I'm really glad I read this comment lol I don't think the procedure is done exactly the same here in Brazil, but I'll look forward to finding out how will it go 😂😂

Gotta say it, been there done that. Those toots are a hoot indeed!! LOL 😂

Well, update: yeah, they used it and they did not drain it lol but I was asked to take a big dose of that medicine that's supposed to dissolve it. It's a really funny feeling indeed

Oh, an in addition - due to various things around my personal circumstances, the PT should be entirely external for me. That IS an option.

I couldn’t agree more!!

Aww, sorry to hear that Layla. I hope you get help🙏 I'm 16, and I absolutely understand with me being a young athlete.

@@heathergeorge6411 yea I'm not a athlete i just hurt it one time and didn't do anything about it

@@layla4294 yes I get it, that's what one of my on going injuries is. It really sucks too

@@layla4294 wow I'm sorry. That's scary, to me at least. If dysfunction in one area isn't treated, it spreads to other areas over time due to the body overcompensating in ways it wasn't meant to do long term. My twin sister severely sprained her ankle (and also jolted her spine) when we were young teens, and she's always had some issues with it after it healed, but it didn't **seem** like much because her body compensated using other areas to guard the weakened part, which we were unaware of(and also developed other areas of pain like in her back and pelvic region that **seemed** unconnected to that injury as the years went by.). Until it couldn't compensate anymore. A little over a year ago, in early-mid 30s now, it all came crashing down. there is so much dysfunction in her muscles, joints, and alignment (in her entire body) from years of overcompenasting and extra wear and tear that they weren't meant to do, that she is now in constant pain, had to stop working, often can't walk, can't drive anymore, and had to move back in with our parents due to not being able to work or drive and for help taking care of her daughter when she is incapacitated by the pain(which is quite often). If she had gone to physical therapy after the injury as a young teen, she might be okay today. Instead, now in her 30s she is significantly disabled and in constant pain, which frequently gets so bad that it's unbearable, had the endo lap surgery like Jo, just to be told 'no it's not that, *now* we'll look into physical therapy,' and will be spending who knows how long in physical therapy now to treat the wide spread and much more severe dysfunction that never should have been allowed to happen in the first place. And there is no way of knowing if it even has a chance to be fully resolved. While I'm sure some improvement will happen with physical therapy, she may still be disabled for the rest of her life from all the years of progressively worsening damage, basically because our parents said "walk it off" so many years ago.. Maybe have your parents read this. [Layla's parents, if you are reading this, it may not seem like much now, but like I said, untreated musculoskeletal dysfunction in one area will continuously spread to more and more areas, in a vicious (and insidious because it's usually unseen) perpetuating cycle. I'm absolutely certain you don't want Layla to end up like my sister years down the road, so now that you are aware of this risk, please listen to her and get her knee looked at and treated🙏 ❤. ]

@layla I can get that. My friend is 38, and her knee has been messed up for about a decade at this point. She's been told they WON'T do a knee replacement until she's 60. 😭