Hello, I came across your post because I have been seeking help for almost 10 years now for CHRONIC leg pain. I was diagnosed in 2006 with Ulcerative Colitis very badly. I initially started on a extremely high dose of IV prednisone which actually did not help enough to calm my UC down so the doctors then put me on Remicade. Within less than 24hrs of getting the very 1st remicade infusion, I tried to stand that morning in the hospital and couldn't. I wound up crying in pain and hysterically scared and upset. I then noticed for the next 3-4 treatments of Remicade I received over the next few months back then my leg pains got increasingly worse. Since 2006 I have had extensive workups, tests, imaging, bloodwork, the list is endless. The Remicade was stopped after the 3-4th try due to the severity of pain in both legs. The orthopedist and rheumatologist then both Diagnosed me in 2009 with Avascular Necrosis (AVN) and stated it was from the Prednisone and NOT the Remicade.
In 2010 my right knee collapsed and I went in for a total knee replacement. Mind you I am currently now 33 so this all started when I was around 23 years old.
I have had numerous rheumatologic workups and tests and will be going back to the Hospital for Special Surgery for a 3rd opinion now in 2 weeks to see if they can figure out the reasoning behind the pain. I have been on intensive pain management since 2006 and nothing is truly helping. On top of the AVN & Chronic daily leg pains I have: Chronic Migraines since I was 12 years old. Pan-Ulcerative Colitis, Hypothyroidism and anxiety and depression. So all in all I have A LOT going on. But nothing right now can compare to the daily leg pain that is over a 10 out of a 1-10 scale with 10 being unbearable. The knee replacement did not help me or the pain one bit. I don't know what information you have successfully found or worked with but I would love to hear more input from you or anyone else battling with the same or similar situations with the horrific bilateral leg pain starting in both knees and radiating up and down both legs 24/7-365 days a year, 7 days a week from sunrise to sunset.