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January 7, 2006, 6:55 am PST

Living with Chronic Pain

Quote From: profderien

hello xplay -- 

  

is the condition of your left leg congenital? 

when you say that you have an "extremely rare bone disorder," does that mean you have a diagnosis for a part of the bone disease [for the congenital part of the problem, maybe??  

one more question!  what makes you think that your right leg will also become "this way as well"? 

  

some orthopedic surgeons won't deal [surgically with young people who may still be growing -- but it can't hurt to have a roadmap of what may be possible. if there is a surgical option you may be pleasantly surprised by the rapidly improving orthopedic options. i am friends with a young man who had great results by having the work done in stages.  at the time, it is frustrating and it seems the clock is standing still, but poof!  the end is worth the wait/ 

  

arthritis is really painful, as you know.  i get irritated by folks who say "oh, it's just arthritis." mine, as is yours, is caused by a much more serious bone disorder -- which results in some bone-on-bone contact as well as "bone death."  i don't want to leave out those folks who also have a rheumatic form of arthritis, or those poor people who suffer both.   

  

it sounds like you have an excellent understanding of what is going on -- but i plead with you to not just "live with it." YOU ARE 17 YEARS OLD!  you have lots of living to do -- so why not get yourself into the best shape you can for that journey? 

  

i am trying to maintain some muscle and bone in my legsand arms with a dual action exercise bike.  i also have this much cheaper bike thingy -- you can use it from any sort of chair.  i've seen it advertised from around $50 to $100.  yes, both of these things cause some pain at first, or each time you step it up in speed.  i have found some great books on tape [i am listening to narnia now and music, of course.  and, yes, there is always t.v. -- ahem, like the dr. phil show. 

  

good luck with all of these undertakings.  you seem very level-headed --  

be well -- 

  

prof-de-rien 

  

  

  • Not congenital.
  • It is a disorder,  I don't know if it even qualifies as "rare" since I don't know if anyone else has it.  So while one would assume "rare" as "existant in a small portion of the population",  this could just be something I did to it.  But I seem to doubt it.  I'm pretty lost with this.
  • I'm not sure that we actually came to a diagonsis,  all they said was that the bones didn't grow properly.
  • After I said that I worry about my right leg becoming this way aswell,  I think that's more of a worry than a rational conclusion.  Frequently,  my right leg is in a lot of pain,  and I wonder if it will give in to pressure,  because I have to try and balance myself,  which is impossible,  so at a given time,  I have no choice but to rely on one of my legs for support when standing.  That usually ends up being the right.
  • I looked at some options,  and it's basically that I can wait until I'm 18,  and get surgery,  or I can live with it.  After frustrations with getting a hold of specialists etc,  I just decided to sit on it for a while.  The surgery is something I reject because they said it is very dangerous.  At least now I can walk,  I don't want to mess with that. 
  • Well,  after I lose all of my excess weight,  that will be a massive help.  And I can still excersize a bit,  etc.  It's not the ultimate answer,  however,  that's true.
  • I have a Gazelle,  if you've seen that infomercial.  That works pretty well for me actually.  And I have a weight set.  
  • Thank you for your advice,  you have many good points. 
 


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