Chronic Symptoms with Family History of Lupus but Clean Labs?? Please help!!!

I am searching for answers! Please help!

I am a 21 y/o female with a history of chronic and severe joint pain. My father has RA and my great grandmother on my mother's side had Lupus.

I've been to numerous doctors but still have no answers.

My symptoms include extreme fatigue, hair loss, irritability, severe joint pain that comes and goes, and thyroid lab tests that are off every once in a while.

Back in 2004 I had my CRP, CCP, ANA, and RA factor run. All came back normal except the ANA which showed positive. However, since then I have not had another positive ANA. Even more concerning to me is that my ESR is never elevated above normal.

As far as medications I have been on, there isnt much of a list. In 2004, my doctor recommended that I take 800mg Advil twice daily for 1 year to decrease the inflammation which she said was very visible in my body. I also had a lot of fluid in my knees at that time. Even though I wasn't sure that was very safe, I did what she asked. The Advil had very little effect on my pain or symptoms. Over the years I have come to use Aleve and Advil pretty much daily. My new doctor wrote me a prescription for 500mg Naproxen twice daily (which really is a joke to me considering how much pain I am in), and it isn't doing a thing.

I feel very ignored by the doctors I am seeing because they tend to not take me seriously since my lab work is coming back clean. I'm having a very hard time right now with pain and fatigue and am at a loss for what to do. My most recent lab tests came back today and the only abnormality was a low ferritin (iron) level. Please help!

Post Edited (rnstudent7) : 4/1/2009 7:46:40 PM (GMT-6)

rnstudent. How frustrating it can be not knowing what is going on with yourself. We all had some type of problem being diagnoise, some doc. just don't get it.... are you seeing a rhumey, if your not that is where you want go. Hair loss is one thing the doc. should be looking at, also fatigue is a problem with us lupies. I hope you get some answeres soon. Good luck.
Debbie

Hi rnstudent,

 

I agree that a visit with a rheumatologist is needed. You have the symptoms of something going on for sure.  Sometimes those labs take time to become positive.  That's what happened with me.  It took a decade of symptoms to finally show that my blood work was positive.

 

I hope you get answers soon too,

 

Ginny

Hi rn student,
I just joined the website and saw your message. I am 49 years old and was diagnosed this week with lupus based only on the fact that I have severe joint pain and a positive ANA. My chest x-ray also came back clear. My flare-up has been lasting about a month and I am so depleted, both mentally and physically. Also had a negative Anti-Dna test about a year ago and I have no other symptoms but what I listed above. My rheumatologist has decided to go forward with the disease modifying drugs of methotrexate and plaquonil and I also take folic acid, several anti-inflammatories and darvocet daily. My husband calls me the pop and drop lady, just pop a pill and drop to the bed. So far no relief, hopefully after the second dose of methotrexate I should see some improvement (they say). I just want my life back and am so frustrated with the doctors in the past year that I have seen. All I can tell you is to be diligent and forceful when it comes to your health. Get all the information you can regarding autoimmune disorders and go to a rheumatologist and discuss your symptoms. You have to be your own health advocate. Keep us posted as to your prognosis. I'm so glad I found this website, because it really helps to read about others that are in the same position and tells you that you are not alone.

Hugs and angels,
Lynnette