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Joint pain and instability

Posted by Drake

Keep in mind while reading this, that I am only 29, soo my largest concern is what am I going to have to deal with when I am old! 
At the beginning of this year, I had been diagnosed as having Marfan's Syndrome.  As a consequence of the syndrome, I have Bilateral-Patella Alta with Chondromalatial-Osteo-Arthritis as well as various other joint instability & inflamation problems.
My question is, when is it necissary to take a joint problem to a physician/specialist.  As you can imagine, I have various ache's and pains from sub-laxing joints, dislocations, inflamation and even costochondritus which is so frequent, my physician is hesitant to give me any more anti-inflamatories due to risk to my liver and kidneys.  The most that my physician's has suggested is bracing and anti-inflamatories.  My major concern with this, is that they don't truely seem to know what is wrong in most of the cases.
In terms of my knees, I have had problems since a young age, which started with Osgood-Schlatter's and then progressed at the age of 16 to frequent dislocations.  Doctors keep on threatening surgery but after recovery they back-out.  I had a serious dislocation of my left knee in Feb 2007, requiring hospitalisation, reduction under anheasthetic and 2 months in a closed reduction cast.  All the while, the specialist was stating that he was positive I would need surgery once recovered.  When the cast eventually came off, he told me he had no idea how to help me and that he was afraid of performing surgery as it might cost me the mobility in my knee. 
- Do I wait untill my knee finally fails completely? 
- Would I have more or less pain after corrective surgery? 
- How do I monitor the Chondro-Osteo-Arthritic degeneration?
I have frequent burning pains in my left wrist, as well as simmilar pains, occasionally, in my right wrist and infrequently/randomly in my hip, shoulder-blade and elbow ... mostly on the right side.  My second digit on my left hand is also hurting on the first joint, when flexing it which makes me wonder about atrophy due to the braces I am wearing.  One doctor has identified the wrist pains as possible loss of cartlidge (Which I assume is either osteo-arthritis or similar to chondromalatia), my main GP does not know what is causing it and had initially suspected a ganglier while a physio-therapist suspected nerves in my shoulder due to muscle spasmisms.  None of these findings has been proven, especially due to the fact that X-Rays don't yield any conclusive proof (and as I understand it, can only be proven once advanced degeneration has set in and the spaces between the joints started narrowing) one way or the other and that the pains is so irratic, I can not explain when or why they occur (Along with the fact that my pain regestering has been affected due to the fact that as a kid, growing up, I assumed the pains and problems to be normal and that I was just whiny).
- Do I continue wearing wrist braces as a preventative measure or will that increase my risk of atrophy?
- Do I seek further consultation and with whom?
The latest development, is that my right shoulder is very sub-lax.  As soon as I lift my elbow above my shoulder or rotate my elbow while my arm is bent, to open a door or while steering my car, my shoulder would slightly pop out of position and pop back.  The easiest way to demonstrate this is for me to hold the back of my neck with my right hand and then rotate my elbow upwards which immediately pop's it out.  I would then have to rotate my elbow back down to pop it back in.  I doubt it is completely dislocated at that point, unless I am expecting the same seering pain from a knee dislocation to be present during a shoulder dislocation.  It is almost as if thow the shoulder blade is loose.  I can "lift" my right shoulder blade up without moving my shoulder, which is odd as I can not do the same with my left so either my right shoulder blade is totally loose or my left is in spasmism again.
- What is the risk of damage to the joint during these sub-laxations?
- Whom do I see, if anyone, in order to investigate the reasons for this?
These are but a few examples as I have had for example even ankle and hip sub-laxations at times.
I appreciate any advice and/or insight.

Answers (1)
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There are many causes for hypermobility of joints, congenital, acquired, etc.  Doctors don't really have a lot of answers.  I have had severe joint instability for years.  It is no picnic, but these things I have learned.  Do not stress or lift weight with the joints or over-use.   They want to try to bulk up muscle to support the joint.   It will make things worse, regardless of what physical therapists tell you.  Surgeries are not always successful.   The muscles are strong, you could probably move a dresser, but the ligaments continue to get more lax and torn with stress.  The joints are painful because of the laxity.  

The only thing I have found to be of any help in actually tightening the ligaments is called prolotherapy or reconstructive therapy.  A series of injections into painful areas (no drugs or cortisone) to help tighten the lax ligaments.  It is very seldom covered by insurance and takes a series of 10-20 times per area.  There is a lot of information on this therapy on the internet.  It is controversial and considered "alternative."  I am here to tell you it does work.  Sorry I don't have a better solution.  Kris


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