Rheumatologist (Pediatric) Questions Rheumatologist

What's wrong with me?

I am a 17 year old teenager who is currently under observation for a rheumatologist autoimmune disease, but tests have not yet been conclusive. I have very severe Raynaud's and take medication for it, constant heartburn since the 4th grade, joint stiffness and pain (especially when cold, but I still have stable movement. Took an ultrasound and small effusions found, but not conclusive for arthritis), very dry eyes, a few of my fingers on a nail scan showed some loops and dilation, but has not changed for around a year, waves of fatigue, especially in the winter and when cold (feels like a wave of heat that starts from my chest and expand to the rest of my body, giving it an uncomfortable relaxed feeling), extremely dry skin on my hands, and when the air is dry in the winter, it cracks and bleeds with even the slightest of movements, ankle swelling when running (use compression socks to help), my right hand cramps up and becomes painful to write after only around 3 sentences, when my handwriting noticeably gets more sloppy (very annoying, especially during big tests like the AP or SAT), pain in right shoulder while running (never used to have that), sharp pain in ankles or knees or both (mostly seen during winter), hip pain even when sitting down (during winter), and that's all I can think of from the top of my head. All tests I had were either a few with minor abnormalities or they were normal, even though my family, friends, teachers (this one got interesting), and others can see there is something wrong. Thoughts?

Female | 17 years old
Complaint duration: Started in 4th grade, got really bad when I turned 16
Medications: Pentoxifylline, vyvanse
Conditions: Raynauds, heartburn

2 Answers

I am sorry to hear of all you have been through

I would see a Rheumatologist
If you have been seen and still have questions or concerns, I would ask for a second opinion and see someone at a university or teaching hospital/program

I wish you well!
It sounds like you may have juvenile idiopathic arthritis.  However, the best course of action is to continue to work with your rheumatologist about your condition.  Autoimmune illnesses can be difficult to diagnose and manage.  Your rheumatologist has probably run all the appropriate tests for you and it can be very frustrating when a definite diagnosis cannot be made.  But, that does not mean that treatments are not available to try.  If your rheumatologist is not able to provide any additional assistance, you may need to be referred to a university medical center and see a rheumatologist there.