Lupus or Fibro?

I'm struggling to deal with this. I went to a regular dr to find out what's wrong with me. My main symptoms:

VERY TIRED all the time - falling asleep in the middle of the day can't keep my eyes open, difficulty falling asleep at night with or without an afternoon nap, hair loss, weight gain, pain in my back and feet worse in the mornings aka difficulty getting out of bed, pain in my pelvic area so bad sometimes I'm unable to stand, carpal tunnel symptoms, feel like I've run a marathon and don't feel rested when I wake up each morning, leg cramps sometimes at night, definite PMS symptoms and very heavy menstrual cycles and acne, headaches when the weather is stormy. I've always been very sensitive to the sun (my arms and face turn bright red with just a few mins in the sun, burn very easy) and my joints pop AND grind like crazy.

I have 2 flat feet and TMJ - not just pain in my jaw the actual jaw joint has worn away on both sides of my jaw. Both conditions were diagnosed 10 yrs ago. My mother has an autoimmune thyroid disease and my dad has 'rosacea' and heart problems.

My regular doctor ran cbc, thyroid panel, and ana tests. She noticed a slight problem with my breathing. She didn't discuss that with me as whatever it was was very mild.

Tests came back: Vitamin D deficient, ANA positive 1:320 homogenous pattern. My regular doctor suspected lupus or RA. She also suspected I have high estrogen. I tended to agree with her and she referred me to a rheumy. 1 month later the rheumy did a few tests for RF and antibodies. My ANA came back high positive again (0-10 normal and it was 15). ssDNA was high. SED rate was below normal (I took aleve for a headache before the test).

My Rheumy did not check my joints other than my hand. She did not order ANY xrays to check any of my joints. I was given the diagnosis of fibromyalgia. I've seen the rheumy 2 times, once for the blood tests and today for her diagnosis. I took pictures to show her the skin changes from the sun and kept a journal. She passed the journal back to me and glanced at the pictures and said I get patchy red in the sun cause I'm pale. She told me I will NEVER have lupus or any other rheumatic disease and any further blood tests are pointless and would do more harm than good, and the ssDNA and ANA results meant nothing, and high estrogen levels have nothing to do with 'what I have'.

I'm not sure what to think of this. It feels way too quick and final of a diagnosis considering everything =/ I had to keep asking... well why does the ANA come back so high if I only have fibro, what about the ssdna being high, what about my estrogen could that be having an affect on anything? And I was pretty much straight out told it means nothing, I have fibro.

I agree, find a new rheumy.

Thank you for your thoughts on this. It was very frustrating today. She was saying 'fibromyalgia' as soon as I walked in the door the 1st time and again today. I've read that labs can change over time and I read a lot of stories of people being diagnosed with fibro or just kind of sitting on the fence for a long while before a lupus or other autoimmune diagnosis was reached. She touched NOTHING other than the fingers and joints on my right hand. My regular dr at least checked my range of motion. The rheumy made her opinion very clear that I could never have lupus or other rheumatoid/connective tissue disease due to the results of my recent blood tests.

I will definitely get a 2nd opinion with my regular dr I think. The rheumy seemed absolutely clueless that estrogen has a connection to autoimmune diseases. It was very disheartening to be told that I will never have any clear answers therefore there's no point in trying. To be honest it hurt. I told the rheumy that this was frustrating and I didn't feel that it fit and she responded that almost all her fibro patients felt the same way. I've read and read so much about these things lately and still am just as confused as ever sometimes. But it seems striking to me... 2x High ANA homogenous pattern, vitamin D deficiency (18), high ssDNA, high estrogen. Add heavy fatigue, joint pain, hair loss etc... I just don't see how or why the rheumy completely ruled out an autoimmune/hormone relation. Oh and according to her I'm also completely cancer free. I'm glad she feels so confident on that as well... other than the ANA blood test I'm unable to see how she can make that decisive judgment call either.

Becky I'm sorry that your second appointment didn't go any better with this Rheumy. I agree with the others you need a 2nd opinion. Lupus is such a hard disease to DX. It took my Doctors 13 years before they finally said yep I had the darn thing. I got my Fibro DX much quicker and before my lupus one. The I got my Fibro DX in 1998, then I got my RA DX in 2004 after Lupus DX in 2001.

I know this is all very frustrating to you, it is for a lot of us. Some of us go thru like 5 or 6 Rheumy's before we get the correct fit. It sounds like you may have Fibro in addition to something autoimmune going on. It is common to see lupus patients with another issue like Fibro or RA. I"m one of the lucky few who got both with my lupus LOL. I have days when I can't determine which disease is making me feel so bad.

As to her assertion that you'll never get cancer she can't tell you that. No doctor can tell you that, if you're really worried about it ask you GP to send you to a Hem/Onc and have them look at you. Last year in May I learned that I do have T-cell LGL Leukemia and my positive ANA really had zero bearing on my DX. It was based on my bone marrow biopsies, my CBC labs, and my need to have blood transfusions all the time. They knew that I had an issue for several years before they caught it. The type of leukemia I have is a common one in RA patients and patients that have autoimmune diseases.

There isn't a cure for LGL Leukemia and most patient live 5-8 years, some to 10. That is IF an infection doesn't kill you prior to that time frame. They can attempt to control this type of cancer but once it's active you must start traditional chemo and hope for the best. While it's inactive the normal drugs used to treat it are steroids, Methotrexate, Cytoxan, and Cyclosporine. Like I said if you're really worried about a cancer then I'd ask to see the Hem/Onc doctor they do know their stuff.

I hope that you can get a 2nd opinion soon and get some answers and treatment very, very soon. I know how frustrating all this is really I do. I've gone thru it so many times. Hang in there and if you have any questions please come back and ask away. If you want to reach a specific person you can click on their name and see if they have an email provided. You can then email them, or just put a post in for them.

Take care and let us know whats happening once you get in to get your 2nd opinion. Good luck to you.l

Hugs,
Barbara

I think you're on the right track. It's very common for people with autoimmune disease to change rheumatologists until they find someone who will take the time to get to know you and come up with a thorough diagnosis and treatment plan.

If I were you, I'd type up your complete medical history including any and all symptoms, a family history, your surgeries and diagnoses, and take it to your appointment with your new rheumy.

Don't second guess your instincts. If you're uncomfortable with a doctor, change. It can be a frustrating process but it's worth it.

Take both, plaquenil takes several months to build up.

So if I start to feel better within the next 2 months I can assume it's the Cymbalta? And if there's less pain in 4-5 months, the plaquenil? Thanks for the help!

Becky, I see I'm in the minority here, but I wouldn't start them both at the same time. I have fibro and UCTD, getting the fibro dx almost 10 years before the UCTD. As I understand it, Cymbalta also takes some time to reach a therapeutic effect. It was prescribed for me, at one time by a neurologist, but I decided not to take it. Later, when the rheumy started me on Plaquenil, I started to feel better within 3 weeks. Hair loss slowed way down and fatigue began to lessen. So you may notice some difference sooner that 2-3 months. Starting both at the same time will certainly make it difficult to determine which is the source of any relief. I know you want to feel better soonest, but I personally would start with the Plaquenil.

This might be a good question for the pharmacist too. Did I mention I have petechiae all over my body and the very heavy periods... the dr's say its caused by high estrogen. Under cymbalta "Tell your doctor if you have: a bleeding or blood clotting disorder" yesterday I discussed the high estrogen with my pcp as well and she didn't mention any problems taking the cymbalta. I'm just starting to use a progesterone cream to balance it out...

Ouch! I bet that's painful.

My mother has horrible varocus veins. They look like knotted ropes running up and down her legs. I have spider veins scattered around my legs.

Thank you for the insight. This came up out of the blue. I have a few small spider-like veins on the back of my legs. It popped up behind my knee where I have some stretch marks. No idea if my temp is related to this or that. I wonder if I have vasculitis and it's related to the petechiae....

Thank you Sunset14. It really does mean alot to me to have this support and hear similar stories. It gives me hope that the answer will be found and that I'm not alone.

I've met my deductible so I'm anxious to get as much done and figured out before december as I can. Next step is the dentist and a panoramic xray. It's been 10yrs since the last pan and the tmj diagnosis. My jaw hasn't given me consistent pain and swelling since I was a teenager, every now and then it is achy and causes some difficulty. The new rheumy appointment is at the end of Sept, but I'm on the list to be called if anyone cancels... A nurse I spoke with last night said "you sound like you're going through the same crazy things I did" she was diagnosed with undifferentiated connective tissue disease. I guess it is a toss up right now what it can be. But if someone can start putting a name to it, I think that would help on so many levels. If I have to wait and watch until something conclusive turns up then so be it. I can deal with that as long as I know I'm in good hands.

I was 7 when my great grandmother died. In the year or 2 before her death, her fingers hands toes and feet turned gangrene and were amputated. It seemed to climb up her body. It gave me horrifying nightmares at that age. There's no telling what all lurks in my family history. Thank you again, to everyone for the support and encouragement

Great that you are in the hands of a competent rheumy and are feeling better!

If you do get stressed and find it increases your symptoms don't hesitate to visit the Dr and see what they can do to help you out. Stress can kick of Lupus symptoms that don't necessarily go away when the stress leaves -- treatment is often needed!