Replies to 'Living with Chronic Pain'

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 

Hi, 

I agree with prof-de-rein.  At such a young age I urge you to see a specialist.  Do not take this sitting down because you must live with the consequences of your decision and, based on current statistics, that is several decades! 

Sometimes I get myself into trouble by reading things between the lines; my apologies if my following statements are incorrect.  It seems that you are saying that YOU made the decision you have a rare bone disease.  Am I correct?  If not, what is the name of the rare bone disease?  When was it diagnosed and what is the specialty of the doctor who diagnosed it?  I ask these questions because there have been so many advances in medicine including how diagnoses are made and treatments that some search of the medical literature may be a good place to start.  I would be glad to volunteer to do that for you but I need the details. 

If you have not had a diagnosis by a specialist, I would recommend you do so.  If you have access to a teaching medical center, that would be a good place to start.  Get all the medical information you can from respected professional sources.  "The Devil you don't know is usually worse than the Devil you do know."  In other words, the illness you don't know may be much worse than the one you know.  At least get a diagnosis and find out what possible treatments and the prognosis are.  Then you can make an informed decision about whether you want to follow through with the treatments.  Getting a second opinion is also a good idea especially if surgery is recommended.  What is not good is to go from doctor to doctor until you find one that tells you what you want to hear. 

Let us know how things go.