Thanks in advance for your advice. My daughter has just turned 14 in July 2015; she started developing Raynaud's. Which at the time we didn't know what it was, because it started in her feet first. Then in October she started having a severe pain in her hip that they could not explain. After all kinds of blood work she came back with a positive ANA and a positive SCL70 and it was greater than 8. So we started seeing a rheumatologist, had the ECHO and PFT which were negative.
Since then she started having Raynaud's in her hands and feet and they hurt and her hands get tight as well. She hurts everyday all over, she used to be very active in sports, well that has stopped. She has a hard time breathing and I am worried. Her rheumatologist will not formally diagnose her with scleroderma and they continue to tell me she just has chronic pain.
I'm a nurse and I watch her daily hurt and tell me she doesn't feel good. She can't run anymore because she can't breathe and if she goes outside and it's hot she can't catch her breath. Then other times as well she just has a hard time breathing. I'm at a loss of what to do. My beautiful, vibrant, energetic, outgoing child has now become home bound and the doctors don't listen. Any help? Please?