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  1. #71
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    Do any of the EDSers have early onset arthritis as a symptom?

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    Quote Originally Posted by beebs View Post
    Do any of the EDSers have early onset arthritis as a symptom?
    Yep sure do. I dislocate about 30 times a day so my joints are now riddled with arthritis!

    Sent from my SM-G900I using The Bub Hub mobile app

  3. #73
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    Oh wow, that must be awful!

    I haven't been diagnosed, but am being investigated, I've never had a dislocation, but had lots of tendon injuries and stuff. So not sure I have EDS at all, still looking for answers!

    Quote Originally Posted by PurpleLove View Post
    Yep sure do. I dislocate about 30 times a day so my joints are now riddled with arthritis!

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  4. The Following User Says Thank You to beebs For This Useful Post:

    PurpleLove  (23-05-2014)

  5. #74
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    Quote Originally Posted by beebs View Post
    Oh wow, that must be awful!

    I haven't been diagnosed, but am being investigated, I've never had a dislocation, but had lots of tendon injuries and stuff. So not sure I have EDS at all, still looking for answers!
    Its certainly not fun! although I am gradually getting used to it. (as weird as that seems, its now just a part of my life)
    I really hope you dont have EDS, its a horrible illness. I do hope you find answers though!

    Also I didnt dislocate until I was about 20, just had very "clicky" joints with alot of pain etc. dislocations progressed from doing a very physical job ( I was a vet nurse & spent my days lifting 30+kg dogs)
    If you train your body up well now, you may never dislocate
    Goodluck!! If you ever have any questions just let me know

  6. #75
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    I have a question, what does a subluxation feel like? Last year, I started getting pain in my hip, by the morning i was in utter agony and I couldn't' bear weight or walk at all so I was taken to ER, I couldn't walk and they could not rotate my hip at all. I had an X-ray and it was clear, they put it down to arthritis and sent me home with steroids and anti inflams, it took about 3 days to subside I had to go off the meds because they were making me puke. It had never happened before and never happened again - I know my arthritis, I've had it since a teenager, and that just isn't it. After EDS was brought up, I began thinking perhaps it was a sublux?

    Do they hurt that bad? And would there be evidence on an X-ray? Or could I have popped it out and then it went back in and that is why it didn't show up?

    They are testing us for EDS, because my son has had severe joint pain for almost 3 years and has 5 out of 9 hypermobile joints, my dad had marfanoid symptoms and died of aortic anyreum at 45 and I was hympermobile as a kid and now have arthritis and loads of other stupid symptoms.

    Quote Originally Posted by PurpleLove View Post
    Its certainly not fun! although I am gradually getting used to it. (as weird as that seems, its now just a part of my life)
    I really hope you dont have EDS, its a horrible illness. I do hope you find answers though!

    Also I didnt dislocate until I was about 20, just had very "clicky" joints with alot of pain etc. dislocations progressed from doing a very physical job ( I was a vet nurse & spent my days lifting 30+kg dogs)
    If you train your body up well now, you may never dislocate
    Goodluck!! If you ever have any questions just let me know

  7. #76
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    Quote Originally Posted by beebs View Post
    I have a question, what does a subluxation feel like? Last year, I started getting pain in my hip, by the morning i was in utter agony and I couldn't' bear weight or walk at all so I was taken to ER, I couldn't walk and they could not rotate my hip at all. I had an X-ray and it was clear, they put it down to arthritis and sent me home with steroids and anti inflams, it took about 3 days to subside I had to go off the meds because they were making me puke. It had never happened before and never happened again - I know my arthritis, I've had it since a teenager, and that just isn't it. After EDS was brought up, I began thinking perhaps it was a sublux?

    Do they hurt that bad? And would there be evidence on an X-ray? Or could I have popped it out and then it went back in and that is why it didn't show up?

    They are testing us for EDS, because my son has had severe joint pain for almost 3 years and has 5 out of 9 hypermobile joints, my dad had marfanoid symptoms and died of aortic anyreum at 45 and I was hympermobile as a kid and now have arthritis and loads of other stupid symptoms.

    It does sound a lot like a sublux.
    Subluxations are very difficult to see on xrays on an EDS person as we are so hypermobile they don't stick out on odd angles as such.
    I usually find a sublux is more of a tight restricted movement with sharp nerve pains where as dislocations are very loose and extremely painful to the point you want to scream. (Especially with hips)
    Your symptoms certainly hint towards EDS.
    Where are you located? If your in\near Sydney I can recommend some good specialists for you. ♥

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    I have early onset arthritis and i also sublax and also dislocate my joints a lot. It is not uncommon to wake up in the morning with dislocated hip and shoulder. My joints are extra lax now i am pregnant and i have wrist, elbow, knee and ankle braces i wear daily.

    The way i describe sublax's is....if i am in enough pain to end up in emergency, it is a sublax. I rate them a 8 on the pain scale. A broken bone in comparison is a 3-4.

    I tend to break bones more easily too as i don't have the pressure that other people can put on their joints for a sprain. My ankle for example will just over twist to the point that it breaks. I have also snapped quite a few tendons.

    The issues with my connective tissues also effect my internal organs and i need 6 monthly ecg's as i am unfortunate enough to have mid range mitral valve prolapse. The muscles controlling my mitral valve are too lax and this can worsen at any time. I have lung, stomach, intestinal issues also associated with my condition.

    I have plans in place that one of the first things i will be purchasing for a house when we buy is a swim spa.

  9. #78
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    Quote Originally Posted by tastychicken View Post
    I have early onset arthritis and i also sublax and also dislocate my joints a lot. It is not uncommon to wake up in the morning with dislocated hip and shoulder. My joints are extra lax now i am pregnant and i have wrist, elbow, knee and ankle braces i wear daily.

    The way i describe sublax's is....if i am in enough pain to end up in emergency, it is a sublax. I rate them a 8 on the pain scale. A broken bone in comparison is a 3-4.

    I tend to break bones more easily too as i don't have the pressure that other people can put on their joints for a sprain. My ankle for example will just over twist to the point that it breaks. I have also snapped quite a few tendons.

    The issues with my connective tissues also effect my internal organs and i need 6 monthly ecg's as i am unfortunate enough to have mid range mitral valve prolapse. The muscles controlling my mitral valve are too lax and this can worsen at any time. I have lung, stomach, intestinal issues also associated with my condition.

    I have plans in place that one of the first things i will be purchasing for a house when we buy is a swim spa.


    Hi tasty chicken.
    Are you diagnosed EDS? your symptoms sound vascular. Although I haven't heard of the brittle bone combo before.
    Do you mind me asking how your body is reacting to pregnancy?

    I'm trying to fall now but struggling and any insight helps!

    Gentle hugs

    Sent from my SM-G900I using The Bub Hub mobile app

  10. #79
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    Have you had one in your hip? Does it sound like what I described? Where my hip joint couldn't be rotated, it was stuck sort of? The pain was excruciating. I can't even describe it, but I am a very quiet person usually, I don't make a fuss in emergency etc, I was literally screaming at the top of my lungs it was so bad.

    Quote Originally Posted by tastychicken View Post
    I have early onset arthritis and i also sublax and also dislocate my joints a lot. It is not uncommon to wake up in the morning with dislocated hip and shoulder. My joints are extra lax now i am pregnant and i have wrist, elbow, knee and ankle braces i wear daily.

    The way i describe sublax's is....if i am in enough pain to end up in emergency, it is a sublax. I rate them a 8 on the pain scale. A broken bone in comparison is a 3-4.

    I tend to break bones more easily too as i don't have the pressure that other people can put on their joints for a sprain. My ankle for example will just over twist to the point that it breaks. I have also snapped quite a few tendons.

    The issues with my connective tissues also effect my internal organs and i need 6 monthly ecg's as i am unfortunate enough to have mid range mitral valve prolapse. The muscles controlling my mitral valve are too lax and this can worsen at any time. I have lung, stomach, intestinal issues also associated with my condition.

    I have plans in place that one of the first things i will be purchasing for a house when we buy is a swim spa.

  11. #80
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    Quote Originally Posted by PurpleLove View Post
    Hi tasty chicken.
    Are you diagnosed EDS? your symptoms sound vascular. Although I haven't heard of the brittle bone combo before.
    Do you mind me asking how your body is reacting to pregnancy?

    I'm trying to fall now but struggling and any insight helps!

    Gentle hugs

    Sent from my SM-G900I using The Bub Hub mobile app
    I have eds classical and marfan's syndrome. I caught the awful double whammy. All my symptoms are able to be controlled by lifestyle which is good but pregnancy really is taking it's toll already.

    Now pregnancy is not at all fun. I have had 2 early children due to PROM. I have a retained placenta with my first. I have post postpartum hemorrhaging with both my children. I have had 13 miscarriages since my daughter to now as placenta's can not attach properly so every one up to now has been before 7 weeks. My defects are dominant so there is a 50% chance each of my children have at least 1 disorder inherited. During labour there is a chance of uterine rupture so i have a c-section booked for 34 weeks unless i go into labour before that.

    I have only sublaxed my hip once. That was during labour with my daughter. The stupid evil ward midwife refused to get the ob so i could get more intense pain killers as apparently it was (after pains).


 

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