Is a positive ANA common with fibromyalgia and what's my next step? - Fibromyalgia Message Board

lynn41 · 04-13-2008, 04:45 PM

After 17 months of health issues, and a weakly positive ANA with speckled pattern, my GP said she thought my diagnosis was Lupus. She sent me to a rheumatologist that said that lab test meant nothing to him, that I had fibromyalgia and then he dismissed me with no f/up. He said nothing over the counter or from a health store is going to help and offered nothing for this living hell my life has become.

So, I'm turning to others to get some guidance - please!

Is a positive ANA common with fibromyalgia?

Who treats you for the symptoms of fibromylgia?

Do you go to a rheumatologist or a GP?

HOW is this treated? I've read alot of information about it, but want feedback from people living with it as to what works for you.

How do you manage this and work when you have an employer who doesn't recognize fibromyalgia as a real health problem?

I have so many questions, but I'll just stop there for now. Thanks for any responses!

ctheri · 04-13-2008, 05:28 PM

My mom has Lupus, and the ANA test (being positive) is Lupus.
A lot of symptoms are common between the two... and a lot of people with one have the other (from what I've read).
I'd go to another Doctor... there IS treatment for Lupus, there IS treatment for Fibro.... ! A doctor who says otherwise is whack!

Who treats me? *I* do.. I lost my faith in Doctors along the wild journey for a diagnoses... However, I'm sure some of the others will tell you a better option.

My GP has said I'm managing my Fibro really well (while I'm bawling my eyes out because my son is turning 6 and I can't remember any of him being a baby...)

I treat my Fibro with diet (I've learned what foods trigger it and avoid those foods)... and natural supplments... as well as exercise and positive thinking. It doesn't always work and sometimes I have to take a pain med. that I hold off for my really bad days (doctor prescribed).

Good luck and be persistent in finding an answer! Doctors don't always know everything.

Glojer · 04-13-2008, 07:15 PM

Ok a difference in information here. I have had a positive ANA that was high titers for lupus It was the homogeneous pattern, the double stranded and single stranded DNA. I also had speckled pattern positive for SLE, MCTD, Scleroderma, Sjorgens. The ANA test continues on with more of the antigens etc. That said.....I don't have lupus. I do have a condition called Connective Tissue Disease and Myofascial Pain. My Rheumatologist says I almost have lupus but I haven't crossed the line and at this point he doesn't think I will. Good news for me and my health insurance. I have seen more than one Rheumatologist and both told me the same thing. You have to have more than just a positive ANA to be diagnosed with lupus. My ANA by the way has gone to normal with treatment for my fibro and with treatment for my thyroid problems. Which one rheumy speculated caused my positive ANA count anyway. For more info on lupus check the lupus board sticky at the top. It has symptoms and some good info.

As for the so called doctor you saw, chalk him up as an ignorant JERK! He may have finished medical school and has a license to practice medicine but he is not a doctor. He could have explained to you reasons why you have a positive ANA. I have been told it could be genetic, in other words if you have or had a family member with an autoimmune problem you could possible test positive but not have the disease. For instance, my grandmother had and died from Scleroderma so I have some autoimmune issues and test positive for that one and others. I don't however have them, not yet anyway and I'm hoping I never do. You could have an inflammatory condition with your joint or connective tissue, I'm sorry I'm drawing a blank on some of the others.

Don't let that jerk get you off track. Find another doctor, you don't have to be treated by a rheumatologist. A lot of people are treated by their PCP, I am. She is a osteopath and I like her very much. There are lots of medications out there that can help.....geez hasn't the jerk seen the lyrica commercials. And don't tell me the drug reps haven't been beating down his door and offering him lots of goodies to prescribe lyrica for his patients.

It could be a long journey to find the right meds and vitamin and diet combinations. Ctheri has the right idea with diet and supplements and exercise. Exercise is a very big thing and of course she hit it right on the head with Positive Thinking. Don't give up, advocate for yourself and get the best health care you can. Doctors aren't the know all to be all, they work for you if you don't like them fire them and move on to another until you find one that you can communicate with. There is a very good article in the Fibromyalgia Aware magazine from the NFA about communication between the doctor and patient.

Sorry I went on and on, I hope this helps.
Glojer

bluelakelady · 04-14-2008, 08:13 AM

i also have the same as glojer. and i was told to behave like i have lupus. i have cmp as well. there are many doctors to choose from. keep searching. and don't allow yourself to worry. it feeds fibro and fibro loves to turn that worry into pain.
peace and welcome,
bluelakelady

lynn41 · 04-14-2008, 03:22 PM

Thank you ALL for your replies. Even though I've been battling these symptoms for 17 months, I'm new to all these issues. This is so difficult - trying to fight something that you can't see looking at me from the outside.

I never knew how inconsiderate people could be until now. Somehow, I've got to get tough and deal with these people in my life who don't understand these health issues and are dismissive. I just don't understand why they don't even try to understand!