What test have you all been through before they thought it was Fibro.

Just wondering how many more test I would have to have.

Hi Mary! My daughter was diagnosed with fibro. She got sick with the H1N1 or a virus and never really recovered. Symptoms kept changing. She got sick the very beginning of September and got a diagnosis the first week of February. We saw several doctors before two diagnosed her with this in February. I don't remember everything they tested her for but will list what I can remember:

First had chest x-ray cause something was wrong with her lung and she was wheezing and couldn't take deep breaths. Did not have asthma and no pneumonia. Saw lung specialist after she was experiencing hyperventilating (over 3 week period) for no apparant reason - she isn't anxious. She would laugh and hyperventilate. Original blood work - complete blood count. Then checked for lyme and thyroid. Then checked for rheumatoid factor, sed rate, c-reactive protein because I have rheumatoid arthritis. Thorough testing for celiac. It wasn't until I switched doctors (to a pediatrician) that she got extensive blood work done. Original doctor was so reluctant to test for anything. Then when new doctor suspected fibro, she did lots of bloodwork. We then went to see a pediatric rheumatologist. He did the tender point test and checked her joint mobility. Then he checked her pulse and heart rate upon changing positions. He diagnosed her with fibro and POTS. The internal medicine doctor that we continue to see (he specializes in CFS and Fibro), diagnosed her with fibro as well. He did a chest/back x-ray to rule out something else and a little more blood work - he tested her ferritin level and HLA-B27 marker. Marker was negative but ferritin level very low. Now she is on iron supplements 3 x day. I hope that helps you some. Good luck.

Kim

Hi, Mary, and welcome!  I'm glad you found us and joined in.  I think you will like it here.

 

I had a lot of blood work to rule out other illnesses.  I couldn't tell you all the names of the tests but they wanted to rule out other illnesses that have the same symptoms.  Check out Fibro 101...the second thread on the forum.  There are links to good info about fibro there and there is a link called What Else Could It Be.  These are the things they wanted to rule out before giving me the diagnosis.  I just mentioned on another thread that I didn't have a tender point test at the time but they might not have done that back when I was diagnosed.  Fibromyalgia was called fibrositis then.  But, the tender point test is quite accurate, once they've ruled out the other illnesses.

 

I'm happy that you joined our family.  We do have wonderful members that love to help one another and we really do care about each other, too.  I hope to hear more from you soon.

 

Sherrine