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Sep 22, 2007 10:34AM, edited Sep 22, 2007 10:37AM
I DO have extensive bone mets. They are located in my skull, spine, ribs, sacrum, pelvis, and femur. The knee is an unusual place for mets and would be even more unusual as a first site of involvement.
Many years ago I had a pain that seems similar to yours. I did not have much pain sitting or standing (unless I was confined and didn't move much like on a car or airplane ride). What I did have is pain that would occur as my knees were bent and bearing weight. The closer to a 90-degree bend, the more pain I would have. This made it difficult to get up from a sitting position or to move from standing to sitting. I saw my GP and was referred to no fewer than 10 doctors and got varying diagnoses. The one that most seemed to agree on was LUPUS. I started steroid treatments for that. Then, I went back to my GP with some of my concerns and was shocked when she told me that no one was really certain that I have LUPUS and why don't I take this ZOLOFT....It was then and there that I decided they had no idea what was going on with me. I started researching and trying to figure out what was happening to me--not an easy task as the days of GOOGLE and internet accessibility were yet to come.
What I found was that my condition occurred regardless of the amount of exercise I did or my weight (scratch doctor #3's theory off the list!). There seemed to be no rhyme or reason, except........If I was careful to remain fully hydrated and stayed away from soft drinks, the pain would diminish and sometimes stay gone for long stretches of time. I also found that the fewer artificial colors in my diet, the better my level of pain.
I managed to go several years without pain (and only now experience minimal pain if I don't drink enough water). I do take ARIMIDEX and have found that my smaller joints (fingers, toes, wrists, ankles) will ache if I don't hydrate.
I have had several bone scans, CTs, MRIs, and a PET scan and NONE of them showed any involvement at my knees. Considering that nearly every one of my vertebrae has been involved and most of my pelvis, I would think that something would have shown up at my knees if it was mets-related in any way.
I do hope you are able to find relief; I understand how limiting it can be for you!
PS to madambee: If your pain began after being bitten by a tick, you need to see a RHEUMATOLOGIST and be tested for LYME DISEASE. Joint pain is definitely a symptom of LYME DISEASE. It used to be something that doctors would rule out by location (it was most often seen in the northeastern US), but is still a possibility if you live elsewhere.
When you're down to nothing, GOD is up to something! http://bb67.wikispaces.com/Dx 2/15/2006, IDC, 5cm, Stage IV, Grade 2, 24/27 nodes, mets, ER+/PR-, HER2-