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An explanation - my condition

Discussion in 'General Chat' started by tinktinktinkerbell, Sep 30, 2013.


  1. tinktinktinkerbell

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    I made this post in my other topic but it got removed

    A lot of people have asked me what I have so for those that didnt see it

    I have HMS (hyper mobility syndrome) I was born with it, born with two dislocated hips

    At 9 years old my knee started to dislocate, followed soon after by the other one

    I had a OP when I was 13, it made my knee worse

    Today, I'm a mess, joint problems, skin problems (itching, rashes, boils) stomach problems (feel/am sick a lot, diarrhea, pains etc) hence why I don't like going out a lot or being too far away from a toilet

    I'm aching constantly, I get sharp pains, I have nerve problems especially affecting my left hand, little and ring ringers go numb, sometimes I wake up with my whole hands numb

    I have problems walking, I can not walk unaided, when I walk I have to walk slowly as my knees do not lock this bending backwards, I also have problems with balance (I can fall standing still!) I get dizzy a lot too

    My joints click , crack, grind and they do not lock (knees, wrists and fingers do not lock, so they have a tendency to bend back further than they should which can make walking, picking up things and even writing things difficult) one time I even hurt my thumb pressing the button for the lift :rolleyes:

    I know this seems very much woe is me and I know there are others much worse but I felt like I needed to post this and I'm hoping people understand
     
    tillysdream likes this.
  2. tillysdream

    tillysdream Banned

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    Sending you a wee (((((hug)))))) Tinks :)
     
  3. Hanwombat

    Hanwombat I ♥ dogs with eyebrows !!

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    But you're so awesome Tinks :) you forgot that part!
     
  4. sskmick

    sskmick PetForums VIP

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    My son has the same condition but not with the symptoms, certainly not to the degree you have.

    Initially I assumed he was what was known as double jointed. I got shot down in flames by a doctor because no is born with double joints :rolleyes:

    He has such a wide range of movement in his joints he can stand on his knees lower legs behind him (normal) but then bring both lower legs to the front of his body, feet touching. He can what looks like dislocate his joints and pop them back. He is now in his early 30s and is expecting problems as he gets older.

    I do think the range of movement he has is more restrictive for him now but I am not 100% certain. His shoulder is permanently dislocated.
     
  5. tinktinktinkerbell

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    Thankfully my shoulders are relatively normal, shame the rest isn't!

    Oh don't get me started on doctors! Took me 30 years to get a diagnosis, been told its all in my head, I would grow out of it! No one (bar the GP I have now) thought to put 2 and 2 together and realise my mum had the same problems!
     
  6. Summersky

    Summersky PetForums VIP

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    My son is what we called double jointed. But his knees are prone to dislocating. He's had no ops thankfully, but has needed a few trips to hospital.

    He can can stand up, or just turn over in bed, and a knee will pop out. Nowadays, he knows how to get them back in place. He does strange things with his shoulders too, but I try and stop him.

    Fortunately, he doesn't have the full range of symptoms for HJS (hypermobility joint syndrome), which are horrible, so I really feel for you, but he does have Crohns disease (inflammatory bowel disease) which is horrible.

    You have more than your fair share of problems Tinks, so I do feel for you. Can't be much fun at all.
     
  7. lotlot

    lotlot PetForums VIP

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    I have the same condition, so you certainly have my sympathy :(

    My symptoms regarding joints aren't so bad, but it certainly affects dally life. Have you had any physio to help with joint problems?
     
  8. sashski

    sashski PetForums Senior

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    Thank you for being brave enough to explain tink.

    I don't have HMS, but a variety of other ailments lol fused vertebrae to name just one!
    We all have our coping mechanisms!

    I still try and do everything normally, so what if it hurts, i just pop a pain killer and go to bed!!
    Standing and walking are one of my biggest triggers, any longer than 30 mins and I've tipped over the edge!
     
  9. tinktinktinkerbell

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    It isn't fun but got to crack on dont ya

    Yeah I have physio which in all honesty I'm struggling with
     
  10. Lavenderb

    Lavenderb PetForums VIP

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    How old are you tink? As I've read the condition can get better as you get older and your joints become naturally less flexible.
     
  11. tinktinktinkerbell

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    It's got worse for me

    When I was a kid I just had to deal with the dislocations, now I have all the other stuff
     
  12. SirHiss

    SirHiss Guest

    Tink I think you have been incredibly brave, I feel you did not need to explain and I hope because you have, it was not because you felt under pressure to do so because of a couple of numpties the other night.

    I don't know what it is like to live with a crippling condition, I can only imagine, yet I would not wish what you or others go through with this condition, or a condition like it on my worst enemy.

    I'm sorry your forum life has been made very difficult, I hope because you have explained, it ends now and everyone can move on.
     
  13. tinktinktinkerbell

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    I haven't been on much the past few days, today just got me thinking and I understood how frustrating it must have been for people when they are trying to help and I'm like can't do this or that because of my condition but I won't tell them was it is
     
  14. SirHiss

    SirHiss Guest

    I sincerely hope because you have shared your condition people do ease up on you, I understand it may have been frustrating for some, not knowing, yet in reality it's no ones business but your own :)
     
  15. tinktinktinkerbell

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    Thank you.
     
  16. emmaviolet

    emmaviolet PetForums VIP

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    But how you respond to people has nothing to do with your condition on the whole.

    I know, I have my own share of chronic conditions too. Sometimes you are just being obtuse. Saying you won't use E45 cream because a woman uses it is nothing to do with your condition and it's examples like that why people get annoyed.
     
  17. koekemakranka

    koekemakranka PetForums VIP

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    Thank you for the explanation. I think people will go easier on you now. When people are "mysterious" about something, it tends to make others suspicious (even though it's none of their business as pointed out before). Am sorry things are such a struggle for you healthwise. Stay strong!
     
  18. tinktinktinkerbell

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    Sometimes when I'm in a lot of pain I take it out on others

    E45 cream (the normal in a white bottle) is crap tbf, I've used it on tattoos before
     
  19. DoodlesRule

    DoodlesRule PetForums VIP

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    Tink may be obtuse at times but never answers aggressively just says how she feels. If people get annoyed with that its their problem, they don't have to respond

    I actually feel quite cross that Tinks has been pushed into explanations when she has clearly said previously she didn't want to say

    Don't know what the latest fuss is all about Tinks as haven't seen the thread - rise above it whatever it was :)
     
  20. Waterlily

    Waterlily Amused

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    geez that sounds painful as hell.
     
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