Discussions By Condition: I cannot get a diagnosis.

Joint pain since 9 years old, now 16 1/2, diag hypermobility

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: miriamrn
  • December 27, 2008
  • 06:10 AM

My daughter first began experiencing joint pain (knees, ankles, wrist, elbow, jaw, hip--varies in location, not necessarily symetrical) when she was 9 years old. We had went to Ireland, England and Wales and about a month later she came out of her bedroom back in Florida and said "I have bees in my knees," and she was having difficulty walking. Took her to a doctor and her sed rate was elevated but outside of that, she was given a diagnosis of hypermobility (double jointedness). I have had her at St. Louis Children's Hospital...hypermobility and patella femoral issues. She has been prescribed physical therapy and she takes motrin for pain. She can wake up in the morning and complains of knee pain, scale 1-10 about a 7...she goes to school despite the pain. She will be turning 17 in a few months...that is almost 8 years of joint pain. I am a Registered Nurse and I just don't understand what is going on. I have tried to find answers and I am just not satisfied with hypermobility. Any ideas? I am thinking about taking her to a primary care physician instead of a pediatric doctor...maybe find an answer? Any ideas? She has no fever with the pain. She does have frequent "irritable bowel" like symptoms. Thanks for any input. Miriam

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5 Replies:

  • Hi Miriam,Could it be spondylitis (found mostly in boys but also in girls)? The diagnosis can be tricky because symptoms vary from one person to the next and even the same person may have different symptoms at different times. I would take her to a good rheumatologist. There are a number of tests that can be done. Best of luck.
    Anonymous 42789 Replies
    • December 27, 2008
    • 10:32 AM
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  • Hi, I have taken her to Children Hospital St. Louis and she has seen an orthopedist as well as a rheumatologist. Both have said hypermobility and as for the knee problem, patella femoral...but how does it explain pain in the elbows, ankles, hip joint, back and jaw...occuring at various times? Thanks Miriam
    miriamrn 2 Replies
    • December 27, 2008
    • 03:31 PM
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  • Please read thishttp://www.hypermobility.org/especially the medical info.Good luck! :)
    Felsen 510 Replies
    • December 27, 2008
    • 03:32 PM
    • 0
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  • Hypermobility is linked to many autoimmune as well as connective tissue disorders -- Ehlers-Danlos syndrome, Marfan's Syndrome, Lupus, Behcet's and there are more, but probably the most distinctive hypermobility syndromes are Ehlers and Marfan's. Does your daughter ever get an "explosion" or "shock" in her neck area when she plays, does sports or just turns her head to the right or left? That is what led me to find Ehlers-Danlos and Marfan's because my son experiences this. We see a genetic counselor soon. He has a very difficult time with activity like weight-lifting. His body never seems to adjust to the weight and it would make him so tired afterward. He does have aches and pains, but they are currently not too bad. His little brother though has problems with his knees and feet when he plays sports even if he isn't injured. All my kids are hypermobile as well as their father and they all have flat feet, which is another common symptom. Hypermobility can be one of many symptoms in these disorders. If you read about them, other things may look obvious to you. Also, look at your other family members and see who else is hypermobile, especially older family members because you will find that some of them may have had back issues, degenerative bone issues and other related issues. It sometimes turns a light bulb in your head and will help you figure out what is going on. See a rheumatologist for her condition. A general physician will not do.
    Anonymous 42789 Replies
    • February 6, 2009
    • 07:56 PM
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  • This sounds similar to some sypmtoms I've had. I am 17 and female. My mom used to take me to the doctor because I would cry from joint pain. My doctor said it was "growing pain." Since then, I have been diagnosed with JRA, fibromyalgia, and hyperjoint mobility syndrome. I haven't been satisfied with any doctor or rheumatologist I have been to. Wish I could offer more help.
    Anonymous 42789 Replies
    • February 18, 2009
    • 09:22 PM
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