I know it's crazy how so many women have autoimmune diseases I'm 35 and was diagnosed within this year. It's really odd I keep thinking there is something bad in the food supply 30 years ago autoimmune diseases were rare. Keep us updated on what's going on.

*hugs*

I have a few autoimmune illnesses but Lupus is not one of them...but my boyfriend's stepmother has had Lupus since she was 14. Back then, they told her that her life expectancy would be severely impacted. Then, they told her that she was infertile. When she got pregnant, they told her she would die in childbirth. I can happily say that none of this has turned out to be true. She leads a very active life, is healthier than ever and seems to be encountering Lupus symptoms less and less with age. While this won't be the case for everyone with Lupus, I think she's a good example of how a diagnosis isn't necessarily a lifetime sentence. We never know how our bodies are going to change as we age, and we can't predict which medical advances will happen!

I understand your fears... When I realized I would have to be on meds & in and out of pain for the rest of my life, I slumped into a deep depression. I was 22 when I was diagnosed and I thought my life was over. Well, life hasn't always been easy, but I have to say that I would not be the person I am today if I didn't have these conditions. They forced me to reprioritize my life, and indirectly because of them, I have found the man I love, the career I love, and I'm closer than ever to everyone around me. Also, I know that they have helped me to be better at managing my own health -- I have caught potentially dangerous health problems before they got out of control just because I know my own body so well. Illnesses like this really force you to get to know yourself.

I hope that you get the answers you need and that there is good news for you!! Waiting for test results is torturous...

Sweetcaroline and Rachellia,

I hope everything worked out at the Rheumatologist if you've gone already. If not try not to worry too much, but I know it's easier said than done. I was diagnosed when I was 19-20 with Lupus, Rheumatoid Arthritis, and Sjogrens Syndrome, not a great year for me! lol Like others that have posted here, I can tell you that it varies greatly with different people. I've never had any type of skin rash. The only problem I have that really interferes with my life is joint pain and fatigue. I'm on a medication that I have to take daily, but it really does help. If worst case scenario you do have Lupus, just know that it's not the end of the world. There are lots of medications you can take to put the disease in remission. Try not to let it get you down. Honestly, the worse part of my whole experience was getting a correct diagnosis, Lupus can be very tricky to diagnose. I really hope everything works out for both of you, and anyone else who is going through being diagnosed with an autoimmune disease. If anyone wants to talk feel free to contact me, I've been through it all so I know what you're going through.

There's a theory that autoimmune diseases and allergies are a result of a too sterile environment (to oversimplify, an immune system with "nothing to do," will overreact upon itself). I forget where I read it, but some doctor was testing this theory, by giving autoimmune patients small doses of a bacteria or virus that's usually pretty easy for the body to fight (I don't remember which one). So far, results have been promising, but not conclusive.

I know there's also a strong genetic component, which is frustrating to me, because I don't know my genetic heritage (being adopted). I've considered searching for my birth parents, but I've been reluctant to, because I'm really only interested in the medical information - not the potentially emotional stuff that could be stirred up in my family (and the bio family as well).

In some ways the hide-and-seek nature of autoimmune disease is the hardest for me to deal with. When we were first dealing with trying to find a diagnosis, I was almost relieved when the doctor diagnosed Wegener's granulomatosis (even though it's a potentially fatal disease). As it turns out, I don't have Wegener's (the damage has been too slow-progressing, a very good thing) and as one doctor told me, if I'm "lucky" I will never get a diagnosis (as in many autoimmune diseases, they only get a name after they've done enough organ damage to match a known pattern).

But as a result, there's this no-man's land of wondering that is so stressful. I was constantly feeling as if I was living under a huge gray cloud waiting for the thunderstorm to start. Of course, stress adds to the risk, and ultimately I had to learn to "give up" the fear. I needed to stop living in fear and just go back to living. I don't mean to sound as if that's easy - it's not, and sometimes it's hits me like a freight train, even though I very well may be in remission (so far, so good. We'll see at my next complete immunity blood workup probably in five months).

"mixed connective tissue disease," or "undifferentiated connective tissue disease," is most likely my diagnosis as well. Basically, my doctor said it's "autoimmune disease of unknown type." It seems to be affecting my sinuses, especially the cartilage of the sinuses, and possibly my lungs.

Unfortunately, autoimmune diseases are diagnosed more by symptoms than causes. Some of the causes are known (genetic), but most aren't. My doctors tell me that if I'm lucky I will never get a more specific diagnosis (because many autoimmune diseases get their name based on the pattern of the organ damage - if you can prevent the organ damage, you never get a "name"). I may be in remission now, it's a bit uncertain. I'll know more at my next screening.

It's a frightening diagnosis, because the prognosis is often so unknown. Remissions are common (for some types), but there's little information on how to achieve the remission. You treat the symptoms and try to learn the triggers, etc.

For example, I can't tell you what has brought about my apparent remission (and that scares me, because I don't know when it might come back), but I have a few suspicions (unfortunately, none of which might apply to you).

Sleep quantity/quality
Addressing my sleep apnea - my neurologist believes that sleep deprivtion is often implicated in autoimmune disorders. Rats when deprived of deep sleep die of immune disfunctions - both autoimmune and suppressed immunity. I had a cpap for quite some time, well over a year, maybe two. After only losing 30 to 40 lbs, my apnea disappeared.

I had to go on disability because of the autoimmune disorder, arthritis, and fibromyalgia. Mostly the fatigue kept me from working. I was also working a job that required that I be on call 24/7 and I wasn't getting much sleep due to the apnea, the job and job stress, insomnia, and pain. More sleep I think has improved the autoimmune issues (but all I have is theory, not proof).

Stopping NSAIDs

I've been on some type of NSAID (ibuprofen, naproxen, relafen...) and recently found that the NSAIDs were causing asthma symptoms. Now, I don't take any NSAIDs which did raise my pain level (but with my doctors suggestion and some research behind it, I started taking two fish oil capsules daily. One in the morning, and one at night, and this has helped) but my lung issues have all disappeared. I no longer take any asthma medications, and only take allergie meds as needed instead of twice daily. I needed them on my vacation to Illinois as I'm much more allergic to Illinois than to Wisconsin (I'm told I could develop allergies here, but so far, so good).

I can't wait until my next lung xray to see if the area of scarring (attributed to the autoimmune disease) has improved at all (or at least hasn't enlarged). My lung function certainly has.

I'm rambling here, not so much because I think any of my experiences will be applicable to you (though if so, I'm so glad), but to show that there is definitely hope.

There are TONS of online support groups for autoimmune disease. I encourage you to google them and find one that you like. So many people have found ways to live well with autoimmune disease, with and without remissions. While there's no cure, just as diabetes (also an autoimmune disease) can be managed, so can many autoimmune diseases.

I'm not minimizing the adjustment period - a diagnosis of any chronic illness is a tremendous and traumatic blow. It changes the way that you look at yourself and the world, and everything you do in it. I wish you the best.

Don't be afraid you are not alone. I was finally diagnosed with Lupus in November. At first I was scared out of my mind not knowing what was happening to my body. I also questioned wether I had Lupus or not for a while and after several opinions from specialists I agreed, but not until the very last one who has dedicated his medical career to the treatment and research of Lupus did I believe in my diagnosis.

Since diagnosed, I have learned a lot about the disease and it's true no two people are alike. The questions that were asked over and over again, well I didn't have them. The joint pain, primarily. Then I started to become very in tune with my body becoming more aware of what it was going through. I was taking some supplements that at the time I did not realize caused some symptoms to flare up, OH BOY were my arms hurting, and only at night. I stopped the supplement which contained safflower oil and it stopped.

If you do have it, which I hope that you don't, I know a lot of people who have it and live very well. They have had to make adjustments to their lives but the bottom line is once diagnosed or even before learn to listen to your body. Don't ive up hope and have a great support system. You are not in it alone.

I don't have lupus!!!! All the blood tests came back perfectly normal, and it was suggested that my unusual skin condition might be related to the hormonal birth control I've been on (the doc has heard of a few cases), but that will be a moot point as I'm switching to a copper IUD this week (wish me luck!). I'm beyond relieved, and am starting to feel back on track in terms of my health.

Oh what a relief! :hug:

-Susan