What pain! I explained to the doctor that it felt like I'd been kicked in the chest by a horse. Sure, he was concerned about the pain, but he was more concerned with my fast heart rate, my x-ray and what was causing the pain. In one of those "do not pass go, do not collect $200..." moments, he sent me to the hospital. Instead, "Just go and I'll-meet-you-there." So began my nightmare began.
Long story short, I had fluid in the lining of my lung, called a pleural effusion, and that caused the fast heart rate. A needle was inserted into that lining (pleura) to drain that fluid. Sounds fun, right? Lupus was diagnosed and treated with large doses of steroids.
About 2 years later, all seemed to be 'quiet on the western front.' I began to have pain in my ankles like they were broken. Then came pain in my heels and pain in my knee. My internist suggested I see my rheumatologist who in turn ordered several MRIs.
The result? I had bone infarcts in 8 joints, including both hips. Bone infarcts? For a number of reasons, oxygen and nutrient-rich blood wasn't reaching the bone, so it died; sort of like a heart attack or infarct of the bones. Usually this is called osteonecrosis or avascular necrosis if there is more than one infarct.
Isn't bone normally dead? On the contrary, bone is usually quite alive. Blood carries oxygen and nutrients to keep it living. In absence of the blood and nutrients, it starves, is deprived of oxygen and dies. This has been given the term, osteonecrosis; where 'osteo' refers to bone and 'necrosis' means death.
It is thought, though no one can be sure, that the steroids used in the treatment of lupus were the culprits. In fact, medical literature suggests that @ 35% of osteonecrosis cases are related to steroids.
Osteonecrosis can be very painful. If the bone is dead, how is there pain? Well, dead bone marrow has to get out of the bone, but it can't because it's passageway out is blocked, often because of a tiny blood clot. Pressure builds up inside the bone and builds and builds with no 'release valve.' Enough of this pressure and there's often uncontrollable pain inside the bone.
This is just a brief discussion of osteonecrosis which can be a complication of lupus, treatment for lupus, asthma, Crohn's or Ulcerative Colitis. Osteonecrosis can result from pancreatitis, alcoholism, Cushing's disease. Even scuba diver's who get the bends can get osteonecrosis and people who have trauma to a bone, usually a long bone in the legs, can develop osteonecrosis.
There may be crippling physical limitations which may require wheelchairs, walkers or other assistive devices. Braces can be involved as are stimulators of bone growth or injections into the space around a joint. Several kinds of joint surgeries may be required, depending on the cause and location of the osteonecrosis which is usually found in, but is not limited to, weight-bearing joints.
These physical limitations are often the cause of people being unable to work or do limited work. Some people need to rely on Social Security Disability for their income, but unfortunately, they don't 'look sick.' But, their disease is inside of them while they may look 'normal.'