Have her checked for lyme disease and don't settle for less than the Western Blot test. My daughter had all the same symptoms for about 2 years - except for swollen lymph nodes. Every specialist ran her through their paces and found nothing. But lyme it is!! She's been successfully in treatment for the past 18 months.
That's what I'd do if it were my daughter... at least until I had a proper diagnosis.
If I don't have any luck in MI I will look into Mayo or John Hopkins. Thanks again.
Thank you for your suggestion. I have an appt at Children's Hospital in Detroit at the end of month / considering taking her to U of M. Her pain isn't debilitating but is constant and just seems odd to have been going for so long for someone who is so young. The Sports Medicine Doctor we have been seeing agrees and has been referring us to other Doctors to try and assist her. Thank you for taking the time to respond as I continue to try and figure out how I can help her. Kind Regards.
What you describe does not sound like a simple diagnosis.
Suggest you seek a skilled internist, perhaps in a specialized institution if nearby. I'm talking Mayo, Johns Hopkins, UC Med Center, etc.
We have given up gymnastics for good 10M ago realizing it wasn't good for her. She has done musical theater periodically since then and even the small movements she needed to do caused major pain. Just started Volleyball because she didn't want to continue doing nothing when the doctors have not been able to figure out what is going on. It's been a long time ....she has taken a lot of rest between activities (months at a time) as soon as she starts again the pain worsens.
Also probably non related but odd symptoms that occur periodically / massive swelling of her lymph nodes on the neck. Tested the thyroid it is fine. Odd sensations with her eyes.....gets fuzzy for a few seconds. All things that went away on it's own and I wrote off. But with all of the other issues I feel it's important to share these details as well.
I have no idea, but the simple solution is in the gymnastics or other physical activities she's been actively involved in.
Give her a rest for a few weeks and let nature take its course.
I forgot to mention that she has recently in the last month started also complaining her ankle and knees hurt....which I can't attribute to anything. I can tell in her gate when her pain is worse. She does turn her foot in slightly which after so much analysis of what is wrong we noticed but when I mention this to doctors they brush it off to say that if it didn't bother her for 12 years it shouldn't be bothering her so much now.