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I was hoping others will be able to let me know their thoughts. Beginning with my first pregnancy out of three 7 years ago, I have always tested positive for the preliminary syphilis test that is done during pregnancy, but then when they do the extra testing, it of course comes out negative. Since I was with midwives, they never pursued why I had an antibody in my blood causing the false positive syphilis test until my last pregnancy in 2010. This time, I did some extra blood tests and I was ANA positive, positive for Cardiolipin, Anti-DNA was high, and Srogrens Anti-SS A was high...whatever all that means! My dr wanted to test me for more, but without insurance, the others were too expensive. He then told me that I have lupus, but the thing is, if it hasn't been for the syphilis tests, I would never have even known something was going on at all. Is it possible to have these antibodies, but they are not active or doing anything, just sitting there and maybe I don't really have lupus? It just doesn't make sense to me. I will say, after having my first baby, I changed, more sleepy and bouts of fatigue here and there, ringing in my ears started up that has not gone away, and stiffness in the morning and minor joint issues that are more noticeable this last year. I also started getting migraines after the first baby, but right on with my cycle. But, I attributed that to being a mother now and working and just being exhausted, sleeping on a crappy bed, and having different hormonal issues after babies causing cyclic headaches....oh and being over 30 now! Nothing alarmingly abnormal. I did change, yes, but still would never guess I had so much going on in my blood. Plus, I had three babies with no complications thank God, so it doesn't make sense.
I wonder if any of you have had a similar reaction...... I had never had fever for any reason in my life, until my husband came to visit from overseas for 2 weeks in April. After a week of sexual activity with no birth control method, I came down with a mysterious fever that lasted the whole second week he was here. That is what brought me to the doctor who pursued the strange blood tests results from my pregnancy in 2010. It makes me wonder if that sexual activity with no birth control method had anything to do with the seeming "lupus flare"? Also, all of my possible lupus symptoms happened after having my first baby. Lastly, my severe headaches and fatigue come with the menses cycle and are relieved after I start. IT seems to me that lupus is completely linked to the female hormones. I would LOVE to hear if anyone out there has similar experiences as me, and can tell me what they think or have learned.
Hello! My name is Emily too and I have lupus. I began having symptoms after my second son was born. Unlike you, I have never had a blood test come back positive for lupus. However, I also have lupus nephritis and that was confirmed by biopsy. I have noticed how sometimes I will get hormonal flares. But I also get flares from other things. It really depends on the person with lupus. If I go out in the sun, I get fevers, fatigue, rashes, and joint pains. (A pain in the bum in the summertime, especially when my boys want to spend hours each day at the pool!) I also get flares from stress. Whenever I'm around my extended family for long periods of time, my kidney disease gets worse. It's funny how that works. Now I live 11 hours away, and my kidney disease is in full remission! But when I lived with my mom it was bad enough to need chemo. (Even with the chemo, it didn't get better until I moved away!)
I have learned my triggers and try to avoid them as much as possible. Even without the triggers though, I have to be on some meds to keep the joint inflammation down. Plus I have nerve damage, so I take meds for that too.
Did your doc start you on any meds? Do you have a rheumatologist? I have learned that it is important to take charge of your health care. I keep a file of all labs and test results. I have 3 specialists, and my regular doc that knows me real well. (Sometimes I wish they had a frequent flyer program for doctor visits!) For some people lupus remains mild their whole life, others it attacks vital organs. That's why it is important to have regular visits to check for things that are happening that you may not feel.
Auto-immune diseases are sucky to have, and chronic and will never go completely away, although you may have periods of excellent health.
I have very similar symptoms to Lupus, but have been clinically diagnosed with TRAPS, an autoinflammatory disease.
My systems first started after I began having miscarriages and I had a big flare after the birth of my daughter. A lot of people told me I was just tired and with a new baby, it made sense.
I lost twins in 07 and a huge flare hit. It's taken quite a few years to get it to settle down as I was also septic and really, really sick.
My Rheum believes that a lot of women get stronger flares during their menstrual cycle sense it causes quite a hormonal upheaval. It seems a lot of autoimmune illness is diagnosed within the first 2 years of a baby's birth as the hormone upheaval triggers the flare.
You need to see a rheum and get your testing done again, just to see how/if your levels have changed and if you need to be monitoring things like clotting. I find it hard to plan for a flare, but seeing that my symptoms increase/intensify during menses makes it a bit easier to make sure I have extra help or extra rests.
Good luck. It sucks to see another woman with autoimmune issues.
Jen + Matt
Parents to Sophie, the Wondergirl Asperger's Syndrome
GERD & Constipation
I just now read your posts, which took me so long because I couldn't even remember where I had posted my thread. I thought I had subscribed to the thread, but I guess I hadn't. It was a day that I was reading a lot about lupus and stumbled across the website. I finally took the time tonight to surf around and figure out what website I posted! Thank you for your replies. I wish for you ease in your lives, and a healthy future.
It does look like symptoms do flare up approaching/during menses. I am thinking, when looking at my experiences and reading about others, stress may be the number 1 factor in triggering symptoms. Wow, the mother in law story is amazing! I lived with my mother in law overseas for 8 months with my kids, and without my husband, and I look back and I was SO fatigued, headaches everyday...all I wanted to do was sleep and I felt myself barely having the energy to smile. I thought I was just being a little weakling to get depression symptoms.
Obviously when the body is trying to have a period, it is undergoing a certain level of stress, which could play a role in why flare ups seems to coincide with menses. I also notice I am vulnerable to flare ups when I don't sleep good nights sleep, which also goes back to stress on the body. The first day of a new job has always sent me home with a flare up that night. I also see now that everybody's flare up is different.
I don't have medical insurance unfortunately, but had medicaid during pregnancy that helped me get those blood test results. I was hoping that my case being mild meant I could get by without having medicine and doctor visits. ?? Even though I was positive or high for several autoimmune antibodies, I don't have extraordinary joint pain. Normal wear and tear for over thirty with kids, and a sports injury knee....sometimes I just feel confused. Thank you for your posts, cause everything helps.
I am in a very similar situation. I tested false positive for syphylus in my first pregnancy, had pre-e and complications. During my second, my doc tested me for lupus and the ANA was positive but the second blood test for lupus was neg. She said it seems that I have lupus or some other autoimmune disease but that it isn't really bad. I've been feeling worse since I had my second daughter, but am finding that doctors really dont' know how to help me since my syptoms aren't severe. I think you have to have 4-6 lupus symptoms to be diagnosed with it. I'm on medicaid too so I don't get very good care either.
Things that have started to help me are:
Regular yoga and cardio
Eating less wheat and dairy
KEEPING EMOTIONAL STRESS TO A MINIMUM!!
I am going to try the akaline diet to see if getting rid of the toxins in my body help with my syptoms.
I missed your response in June! If you don't have medical insurance and can't afford regular doctor visits/labs I would definitely watch out for any new symptoms that aren't your normal flares. So maybe if you have swelling in your legs or ankles. Or maybe you can just tell that something is different. Then it might be worth saving up for a visit. A simple urine dipstick test can tell if you are spilling protein and have some kidney involvement. Sometimes local hospitals offer discounts at different times of the year for basic lab tests. CBCs check your blood counts and platelets. CMPs check your liver/kidney function. Do you live near a medical school? The medical school near me offers free clinics monthly and discounted testing services. You could even check your blood pressure at the local drug store. If it starts being elevated, that could be a sign of kidney involvement. The main thing is to know your body. If you can handle basic aches and pains and you know your limitations and can keep stress under control, you may not need medicine. But if something changes and you have some type of organ involvement, then it might be important.