Hello,
first of all I would like to say that I am new and I am not so sure this is the right place...
Anyways, I am 17 years old and I have had weird joint pains all my life. According to my mum, even as a 5 year old I would sometimes sit in bed crying with joint pain. She and all my doctors back then said/thought it was growth pain and it mainly affected my ankles and knees. At some point, my PE teacher asked if I had any connective tissue disorder because my ligaments appeared to be "loose", and I almost constantly sprained my ankles/knees and had a lot of hip pain sometimes. The pain would come in episodes and start out of nowhere. At age 11, I gave up sports almost completely due to asthma and those constant injuries. Generally speaking I would say I am a very flexible person, which was probably why a doctor suggested Ehlers Danlos when I was 11, but that was never looked into again. I remember that when asked to describe the pain, I would say something like "scorpions stinging into my bones". Ibuprofen helped when I was little, but that stopped when I was like 10 or something. Usually I would just try to ignore the pain and move on with life. At some point, it also started affecting my elbows and wrists, but again I just thought it was my flexible joints and that I could not do anything. The first time I was tested for arthritis was when I was 15, but it all came back negative. Since that time, it has been getting worse; each "episode" of pain seems to be worse and longer. My joints never look red or swollen, they are just painful and stiff, especially in the morning. It is always just one joint (elbow/wrist/knee/ankle), but on both sides. I was tested for arthritis again, negative again. No signs of inflammation in my blood work, no fever or anything, however inflammations don't always seem to show up in my blood work and I rarely get fevers (if I do, higher than 40°C). Cortisone helps me however, which is quite weird. My doctor says that it seems as if my body is just attacking itself sometimes but then completely lacks an immune response at other times...right now I am on a one month treatment plan with Prednisolone because I recently had one of those "episodes", but this time it affected my elbows, wrists and fingers, which was new to me. I couldn't even hold a pen because of the pain. This time it also took longer to kick in and whenever I reduced my daily dose I could feel some pain again. I am just really confused and annoyed because I often get told that it's in my head, that I am too young to have arthritis, that my body is weird etc. and I just want a diagnosis for this because it's also interfering with school.
Any advice what this could be or what else I could do? I just feel so lost not knowing why I am curled up in bed crying in pain on a regular basis and I am tired of having to explain myself without knowing what is wrong.