For 16 years, I have suffered with a joint disorder. I can tell you a very great deal about what it isn't. It is not lupus, gout, RA, MS, any sort of disease, defect, or injury of any of the joints themselves. What 12 doctors in 5 specialties and more testing than my credit rating could ever hope to handle have been able to tell me is "we don't know".
What happens is this; I come semi-awake in the middle of the night with a sore knee or elbow or ankle. I think "must be in the wrong sleeping position", adjust and go back to sleep. I wake up with the affected joint 6 to 10 times the size it is supposed to be. Within four hours of onset, the pain hits. Know how your doctor asks you to describe the pain on a scale of 1 to 10? I'm no wimp; I did 15 hours of labor without so much as a Tylenol. There is no scale to describe this pain.
The big problem here is the unpredictability. I don't know when I'm going to have an outbreak till I have one. I have noticed a marked association with my menstrual cycle, but that doesn't mean I'm going to have an outbreak every month, or at the same point in my cycle each time I do. When I do, there is no way of knowing if it will attack the large joint in my thumb or go after a knee. The outbreak may last three days, it may last ten. There is no way to know. It may respond to Ibuprofen, or I may wind up resorting to a dangerous cocktail of Vicodin and Valium just to get two hours' sleep.
The other big problem here is the exhaustion. From the first symptom, I am completely drained. I could happily sleep 14 hours straight....if the pain would let me, that is. I become horribly depressed, and often cry for hours in frustration from the combined blows of exhaustion, depression, and pain.
So, what have the doctors been able to tell me? Well, it is definitely an autoimmune disorder. For no reason apparent to them, my body ceases to recognize one of its large joints as a native and instead attacks it as an invader. What is being attacked is the soft tissue of the joint. This is particularly nasty when I have a severe outbreak in my shoulder or hip; the extreme swelling in the soft tissue forces the ball from the joint, causing dislocation.
This entire situation has caused me to have a deep distrust for the entire medical community. In my experience, when a doctor is "stumped", for lack of a better word, they don't get all curious and creative like you see on "House". Rather, their God-complex egos are bruised and they wish the offender to be away from them as soon as possible. I'm told "I don't know, you probably just need therapy, could be stress", and either dismissed or sent to another doctor who will tell me the same thing. And every day I wonder when the next outbreak will hit.
If anyone who sees this has any sound ideas (please, I'm VERY sensitive to the whole fibromyalgia argument, don't try to make it with me) on what I'm dealing with or who might legitimately be able to help, I would appreciate some direction. Thank you for your time.
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