Teen w/ Sudden Onset, Chronic Multiple Joint Pain

[Malia93]

Hi All,  

I was wondering if anyone has been through this as well.  Our fifteen year-old daughter has been suffering daily with pain in multiple joints (shoulders, knees, hips).  The list now includes her back, ankles, and elbows.  She has had just a couple of times where two of her toes and once when her hand has been the problem.  The intensity ranges from a 4 to a 6.  Her highest number has been an 8, which thankfully, only occurred once.  The pain may last 10 minutes to 24 hours for any given area.  It also migrates all over her body.  She wakes up stiff and the pain is worse in the afternoon/evening.  The pain comes on suddenly and can be quite severe from the start.  More often than not, three or more areas are hurting her at any given time throughout the day.  

She has now been dealing with this for over three months.  She has twice been tested for ANA, CRP, Sed Rate, Arthritis, Vitamin D, Celiac, Thyroid, and Lyme.  All have been negative, other than showing she has inflammation in the body.  

She is presently gluten-free for three weeks and on an strict elimination diet for 10 days.  We have seen no improvement in her levels of pain due to these attempts on our part.  She takes Celebrex once a day and uses Tylenol (with her rheumatologist's permission) 4 times a day but only one pill at a time.  These medications tend to just take the edge off, and that is all.

Our family physician, in reviewing her blood work, said there are no tests we haven't done yet.  I am at a loss as to what we should do next.  She has an appointment to go back to the rheumatologist in a few weeks.  As of now, she has been given no diagnosis.

Thanks for your time and input!
  

[Andy1201]

Hi there, I have a17yr old boy with joint pain and was just looking for any info really.  He has pain in neck, ankles, knees etc.  he has been to RA specialists and they say he shows signs of arthritis and tested positive for the hlba27, but nothing shows on his catscan, ultrasounds, xrays etc.  the first two months of antiinflamitories did not help so now he is trying another kind-the only real relief he's had was when he was on tylenol3's for getting his wisdom teeth out.  Just wondering if you've figured out anything else for your daughter?

[Malia93]

Thank you, I will research false negatives with Lyme and see where that leads me.  She has been to see a trusted pediatric rheumatologist.  

As for pain comfort measures, she rarely used heating pads and ice packs now.  She feels improvement while using, but as soon as she removes them, it is back.  My next step is to see a pain management doctor.  Not sure what else to do other than keep praying and researching.  

I do appreciate your kind words.    

[marycarmel]

It was a leap.  My first thought upon reading your post was Lyme.  I know she was tested for that but I have heard of people testing negative and then wound up positive and having a chronic type of Lyme.  I'm not sure how it was eventually found but it took a while.  I wish you the best of luck.  We went through some things with my 17-year old son that took some time to sort out.  It can be hard to find the right diagnosis and doctor.  Chronic pain can take a long time to diagnose.  I feel so bad for your daughter going through this; she is so young.  Do comfort measures help alleviate the pain at all?  What type of doctor is she seeing?  I would suggest, if you haven't already, being seen by a doctor at a children's hospital near you.  Hardest thing in the world when you see your child sick or in pain and not knowing what's going on.  Hope you'll keep us posted.

[Malia93]

Marycarmel,

I have looked online for the touch points for fibromyalgia, wondering that myself, and she doesn't have these.  Because you mentioned it, I have looked into RSD but our daughter's pain is not "burning" as is common with RSD.  Thank you for your thoughtfulness in responding to my post!

[marycarmel]

No real answers but just couldn't not respond after reading this.  No matter how hard dealing with chronic pain is, I would hate if my kids ever had to deal with it.  I have two things, though they're essentially rule out diagnoses.  Fibromyalga and RSD.  RSD usually comes from an injury or trauma to something and can spread from there.  I only mention this because when my daughter was in high school a few years back one of the girls in her class had terrible RSD in her feet.  It came out of the blue and she had no known injury.  Fibromyalgia also can cause widespread pain.  There are no actual tests for these things but ruling out other things can result in a diagnosis.  I hope you get some answers and relief soon.