polyarthromyalgia?? | Arthritis Information

 

My 16 yo daughter was diagnosed with the above about four years ago, but I've since been told it's sort of a non-diagnosis.  It just means "arthritis-like pain in multiple joints."  Her sero-tests were negative for both JRA and Lupus, so I've been repeatedly told that it definitely cannot be either one, but I know the blood tests aren't always accurate.  She has pain in both wrists, both knees, both ankles, lower back and hips, neck and sholders.  She says sometimes she feels like something is growing around the vertebrae when it acts up.

She's been to two doctors.  The first doctor gave us the diagnosis above. He said she didn't have JRA or osteo arth. but put her on predisone for almost a year to try to control the obvious pain she was in.  She was on a very heavy dose for an adolescent; nothing below 7 mgs a day had any effect. Her personality actually changed when she started taking it and I had my sweet girl back.  I'd been having a lot of behaviour problems with her and was wondering if I didn't need to get us into therapy; as it turns out, the poor thing had just been in pain! We got her to the point that she wasn't in constant pain and when the pain did start to return with the weather about a year later, it could be made alleviated with Advil or Aleve.

About two years ago she had another bad spell and I took her to another doctor since we'd moved by then. The second doctor re-ran the sero-tests and they came up negative for JRA for a second time and negative for Lupus. He told us he didn't think she had any kind of arthritis and refered her to a physical therapist, who found nothing wrong with the way she was using her joints, except that she was in pain and sent her back to the refering physician.  The episode eventually faded away without any real help from the second doctor.

Now she's starting to have problems again and I'm not sure what I can do.  She refuses to even consider prednisone again.  It took her three years to loose the weight she gained from the first time. I'm afraid that if I take her back for another round of tests they will just come up negative again and we'll be back where we started. Would an MRI of her joints help clear up the problem with diagnosis? I guess I'm just sort of at a loss, here.

Any advice will be welcome.

Hi

I don't know that I'll have much in the way of advice, but I just had to let you know that you are not alone.  I understand and feel deeply sad and sorry for what your going through.  My 12 year old son has been  having symptoms of JRA since he was 2 1/2 and has also not been diagnosed.  If you would like to read our posts they are in the Rheumatoid Arthritis forum the topic title is "no diagnosis in sight". It is so difficult to have a sick child and not be able to get an answer as to what is wrong.  Do you know what bloodtest is being referred to as the test for JRA?  I know that for Lupus they do an ANA, my son's ANA was positive, but there are many people with JRA or Lupus that have a negative result.  If the test they are referring to  as being determinitive of JRA is the Rheumatoid Factor or "RF" then that also would be misleading.  Through researching the situation with my son I found that the RF in children is almost always negative.  Are the doctors you've been seeing Pediatric Rheumatologists? 

I thinks it might be helpful to read through some of the posts in the rheumatoid arthritis forum, and then perhaps make a post there.  The people there are lovely and welcoming. They know so much and are so happy to help you with their knowledge when they can, and when they don't know they'll just be there to let you know that your not alone. A couple of them I know had symptoms as children but where not diagnosed until much later as adults.

I wish I could be of more help.  I read your post and my heart ached for you as I know the feeling "oh so well".

Take care, I'll watch for your next post,

Pam

 

 

Hi

If your daughter hasn't seen a Rheumatologist yet then that is the next step you should take. There are over 100 types of arthritis, so just because she tested Neg for JRA and Lupus, that doesn't mean very much. Has she been tested for the HLA B27 gene? Just don't give up. I saw 4 Rheumatologists before I was diagnosed correctly and got the correct treatment. Do follow Pam's suggestion and drop by the RA site here. Wait til you read some of the posts and see how many with RA have tested Neg consistently for many years. That test is not the final word. I'll be interested to see how things work out.

Barb

 

I find myself saying this so often because docs tell people that because they test negative for the rheumatoid factor, they do not have ra or jra. definitely seek a rheumatologist.  preferably see one at a children's hospital.  at least that was my experience.  it did not take long at all for me to get a diagnosis once a children's hospital and rheumatologists were involved.  i was diagnosed 21 years ago (at the age of 7) with sero-negative polyarticular jra.  i'm thankful that docs took it seriously for me although treatment at that time for kids seriously lacked in being aggressive.  even as recently as 2003, my labs show i'm negative for rheumatoid factor, negative for ANA.  and i have the luck (if you call it that) of almost never having an elevated SED rate.  depsite all of this, i was last considered to be in the moderate-severe category.  one possibility to consider is that there may be fibromyalgia involved.  if the muscles around the joints hurt...it can be felt in the joints.  what made that possibility pop in my mind is the PT saying that there is nothing wrong with how your daughter is using her joints.  fibro in kids is less common than in adults but is becoming diagnosed more frequently as more is understood about it.  while it is not inflammatory per se, pred helped some with mine.  i've heard people say pred does nothing for fibro so why give it but i know i felt some better on it. 
my advice is to keep on the docs.  that is sometimes what it takes unfortunately.  do not let them just shrug the pain off, demand answers.  yeah i say that but am also having trouble living it in my own life.
hugs wayney

Thanks, everyone, for your encouragement. I really needed it.  It's hard to watch the kid, knowing she's in pain and not being able to do anything about it.  She says she's gotten used to it and it's no big deal, but I know when it's bothering her because she gets so cranky and snappish.

I'll look up another rheumatologist.  The last time I checked there was only one pediatric rheumatologist specialising in JRA in the state, and he's several hundred miles away.  I'll check with the local children's hospital, though.  They may be able to recommend someone.

Wayney:  No-one's mentioned fibromyalgia at all.  I'll do a little research and mention it the next time we see a doctor. 

Thanks, again,

Patricia

Patricia,
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This is an excellent site.  It is done by the author of what I consider two of the best fibro books around.  The Fibromyalgia Advocate and  Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survivors Manual

This site is an older one but it a from a teen's point of view.
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There is also an excellent site by Dr. Thomas Lehman with a lot of juvenile arthritis info.  I learned something new last night...it is no longer called juvenile rheumatoid arthritis.  It is now called juvenile idiopathic arthritis and they have chaged the categories around. 
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