Anyone else have an undiagnosed, chronic pain problem?

[ayekasong]

In 2004, while I was living abroad, I noticed that my left knee would pop every time I straightened it. I didn't think much of it at the time, as my father has a similar problem with clicking in his ankle. The following year, I fell and broke my ankle,and was treated in a foreign hospital. It was the ankle on the same leg as the knee that was popping. After I got the cast off, I began having some pain in the knee - I figured it was just agitated from the cast.

 

When I got back to the U.S., my doctor sent me for an X-Ray of my ankle to make sure it was set correctly, and wrote an order for an X-Ray of my knee, for "good measure." Thankfully, everything in my ankle was fine, but the technicians found abnormalities in the X-Ray of my knee. The pain in my knee was also becoming more frequent. So, I was sent to an orthopedic doctor. I had physical therapy, a cortisone shot, told to "just take some Advil," and an MRI that showed more "wear and tear" than most people my age, and a little swelling, but nothing that indicated injury in my knee. The doctor told me that I probably had chondromalacia patellae (which is basically degeneration of the cartilage in the back of the kneecap), and to just limit my physical activity to the physical therapy, and that the pain should go away. Although he did try a few things, I felt like this doctor was not taking my pain seriously, primarily because of how he spoke to me and kept suggesting that I just take Advil - it wasn't helping.. I was young, and a bit intimidated, so I did not push for information.

 

The pain never did really go away. I ended up moving, and the pain started up again, so I went and saw a new family doctor and underwent more physical therapy. When the physical therapist and my doctor agreed that my knee wasn't getting better, I was sent to another orthopedic doctor who gave me another MRI and then told me that "nothing was wrong" and that "physical therapy should fix everything." Also, he said that the previous doctor could not have known that I had chondromalacia patellae from an MRI. I had given him a copy of my X-Rays, which he didn't even bother to look at. I didn't even have a chance to ask this doctor questions - he basically pulled out my MRI and said nothing was wrong, physical therapy is a magic answer, and walked out of the room. At this point, I felt as though I was being blown off, and I was frustrated, so I refused to see another doctor until the pain got debilitating enough that someone would care.

 

It has now been 6 years since I started having problems with my knee. The pain has steadily gotten worse. The worst part is that the pain pops up at random times - I can be walking along just fine, and suddenly my knee will be in so much pain that I cannot put weight on it. Or I'll be very active one day, and have no problems, and then be in pain while sitting on the couch the next. To make matters worse, the random pain seems to be spreading to my ankle, and my right knee is starting not "feel right," which is what happened to my left knee at the beginning of the whole thing. I've been doing research on the condition that the original orthopedic doctor thought I had - and the more research I do, the more I don't think that is the problem. Apparently it can only be diagnosed during arthroscopy - which I have not had. Physical therapy nearly always fixes the problem, which it did not for me. Furthermore, I've found research that says there is a poor correlation between pain and cartilage damage in the knee.

 

About 3 weeks ago, I fell and hit both knees on some very hard concrete. Both bruised up, but my "bad" knee bruised much worse (despite the fact that I fell harder on my "good" knee), and stayed bruised for nearly 2 weeks. The bruise is gone now, but the knee is still swollen and tender to the touch. I rubbed my hand over it in bed last night, and I felt a bump, which I assume is just some residual swelling. I made an appointment with yet a new doctor (I've moved a lot in the past 6 years) to get this worked out.

 

Basically, the point of my long-winded post is to find out if there are others out there who have had problems like this, and what you did to get your pain taken care of. Did you have problems getting doctors to take you seriously?

 

I'm planning on going in to see the doctors armed with this research I have found. What other ways can I advocate for myself here?