Good morning Jeannie, When I asked my neurologist, who actually diagnosed me with EDS after my brain surgery for Chiari malformation, Does EDS get worse with age? He said no, because as you age your joints stiffen up so you’re less likely to have subluxations or dislocations. I have definitely experienced more stiff joints, however, Not only do I still experience subluxations, but my pain has grown increasingly worse as I age. I try to stay active daily and I do go to work. At the end of the day, when I try to relax on the couch, my body stiffness up rather quickly. As I try to get up after a short rest, I can barely walk. Same thing happens when I get up in the middle of the night to use the bathroom. Every joint in my body is painfully stiff, I can’t even close my hands until I’m up for a good 7 minutes. So yes I agree that statement is sooo false. Thank you for all you do, you help us validate what we go through every day! God Bless You! 🙏🏼🤗🥰 💕Dee
I think I have osteoarthritis in hands and knees and x-ray diagnosis of OA in hips as well at 69. Still as flexible though. Stiffness since it first kicked off at 23yrs old.
I was diagnosed (hEDS) a few years ago when I was in my early 40s. My mom now thinks she has/had it too, but at 73 with arthritis in all her major joints she's way too stiff for anyone to diagnose her.
My symptoms started being stiff and lack of movement then pt happened and apparently it really loosened shit up because my limbs feel like they trying to break off. It’s becoming quite painful ugh
I got an HSD diagnosis a few years ago and was given a 7/9 Beighton score back then, but from self assessment I don't meet that in my fingers anymore, and I'm not sure about my knees? I have an hEDS assessment coming up and I'm scared they won't take me seriously because of this. What would you suggest? My PT says I'm very clearly hypermobile, particularly in my shoulders and hips, but the Beighton score doesn't give a full picture of that at all.
@@JeannieDiBonHypermobility Thank you for your response! I absolutely meet the other criteria, it is just the Beighton bit I'm concerned about. It seems as though the point of that section is to determine objectively whether someone is hypermobile in joints that can be measured, but it really doesn't cover much and doctors don't seem to be able to look beyond it.
Good morning Jeannie,
When I asked my neurologist, who actually diagnosed me with EDS after my brain surgery for Chiari malformation, Does EDS get worse with age? He said no, because as you age your joints stiffen up so you’re less likely to have subluxations or dislocations. I have definitely experienced more stiff joints, however, Not only do I still experience subluxations, but my pain has grown increasingly worse as I age. I try to stay active daily and I do go to work. At the end of the day, when I try to relax on the couch, my body stiffness up rather quickly. As I try to get up after a short rest, I can barely walk. Same thing happens when I get up in the middle of the night to use the bathroom.
Every joint in my body is painfully stiff, I can’t even close my hands until I’m up for a good 7 minutes. So yes I agree that statement is sooo false.
Thank you for all you do, you help us validate what we go through every day! God Bless You! 🙏🏼🤗🥰
💕Dee
Thank you for sharing your experience 🙏🏻. Yes I don’t think people really understand our reality.
I think I have osteoarthritis in hands and knees and x-ray diagnosis of OA in hips as well at 69. Still as flexible though. Stiffness since it first kicked off at 23yrs old.
I've heard doctors say this!
Yes - so wrong 😑
I was diagnosed (hEDS) a few years ago when I was in my early 40s. My mom now thinks she has/had it too, but at 73 with arthritis in all her major joints she's way too stiff for anyone to diagnose her.
Yes that can happen. She may be a stiff Hypermobile.
My symptoms started being stiff and lack of movement then pt happened and apparently it really loosened shit up because my limbs feel like they trying to break off. It’s becoming quite painful ugh
My husband stiff due to Parkinson's Disease. Yes, momentarily feel great when give into a stretch.
🙏🏻
My docs are honestly completely useless
🥲
What do you do with stiff leg muscles, and loose knees?
Very common - all about the balance of the whole structure.
@@JeannieDiBonHypermobility Do you mean whole body?
I got an HSD diagnosis a few years ago and was given a 7/9 Beighton score back then, but from self assessment I don't meet that in my fingers anymore, and I'm not sure about my knees? I have an hEDS assessment coming up and I'm scared they won't take me seriously because of this. What would you suggest? My PT says I'm very clearly hypermobile, particularly in my shoulders and hips, but the Beighton score doesn't give a full picture of that at all.
Diagnosis shouldn’t just be based on Beighton score as it only looks at a few joints. Make sure they assess all.
@@JeannieDiBonHypermobility Thank you for your response! I absolutely meet the other criteria, it is just the Beighton bit I'm concerned about. It seems as though the point of that section is to determine objectively whether someone is hypermobile in joints that can be measured, but it really doesn't cover much and doctors don't seem to be able to look beyond it.