[Resi]

I have been having some chest discomfort on and off for maybe a couple month. I googled it and found my symptoms to pleurisy which is an inflammation in the lining of the lungs. After more googling I found that lupus could be a cause. I went to the doc and got blood work done and doc agreed that it was most likely pleurisy. My blood work came back with a positive ANA result. With my symptoms and the positive ANA bloodwork it seems like I have a good chance of having lupus. I go to a specialist on May 10th. Last night my joints and muscles started aching and I've felt awful today.

I'm so scared and worried about having to live with this. Mostly I'm scared that I could die early and not be here for Oliver. I love him so much and can't bare the thought of not being here for him until I'm an old lady.

I believe Sam and some other ladies on here have lupus.. I'm looking for some support and for them to share how it is living with this disease.

I feel like I'm falling apart. First I was diagnosed with lichen sclerosus which is going to be awful enough to live with but lupus seems even worse. I've always thought I was very healthy. My body is failing me and falling apart. I don't think I should even have another baby.

[Kiwi]

Hey Resi. I don't know anything about this, but just wanted to send you some HUGS It does sound scary, but I'm sure some of the women on here will be able to offer you some support and advice.

[Oriyan]

*hugs* Aww Resi :-(

Believe it or not, lupus is not a death sentence. It can be a PITA to live with, but its manageable. Depending on your symptoms lupus is managed either with OTC drugs or drugs as strong as prednisone.

The worst part of lupus is the fact that symptoms come and go. You go through periods of flares and remissions. Your flares are when you are not feeling great -- you might have chest pains, joint pains, fatigue, etc. Your remissions are when you are feeling good and pain free.

There are things that can trigger a lupus flare -- lack of sleep, stress, etc etc.

The biggest future concern you need to have is with Pregnancy. You are automatically high risk. Lupus unfortunately can cause miscarriages and pre-term labor (Yup --I went into PTL at 32 weeks). This is no reason to not try for another baby though! Again, lupus is not a death sentence. It's just a different way of life. My aunt is 66. She is still alive, has lupus and is fine. She has her flares and things but manages her symptoms and pain with meds.

The joints that are going to be effected the most are your hands, feet, wrists, elbows, and knees.

I've been living with this for many many years. Its a pain, but manageable.

What questions do you have regarding lupus?

[Resi]

Originally Posted by Oriyan

*hugs* Aww Resi :-(

Believe it or not, lupus is not a death sentence. It can be a PITA to live with, but its manageable. Depending on your symptoms lupus is managed either with OTC drugs or drugs as strong as prednisone.

The worst part of lupus is the fact that symptoms come and go. You go through periods of flares and remissions. Your flares are when you are not feeling great -- you might have chest pains, joint pains, fatigue, etc. Your remissions are when you are feeling good and pain free.

There are things that can trigger a lupus flare -- lack of sleep, stress, etc etc.

The biggest future concern you need to have is with Pregnancy. You are automatically high risk. Lupus unfortunately can cause miscarriages and pre-term labor (Yup --I went into PTL at 32 weeks). This is no reason to not try for another baby though! Again, lupus is not a death sentence. It's just a different way of life. My aunt is 66. She is still alive, has lupus and is fine. She has her flares and things but manages her symptoms and pain with meds.

The joints that are going to be effected the most are your hands, feet, wrists, elbows, and knees.

I've been living with this for many many years. Its a pain, but manageable.

What questions do you have regarding lupus?

Thanks for the information, Sam. Can you tell me when you were diagnoised and how it was made? Did you have a positive ANA? How often do you get flares? What are your symptoms, and how long do they last? I know everyone is different.

[midnight_starr]

(((HUGS))) Sorry to hear this Resi.

[Chelnae6]

(((((((((((((HUGS))))))))))) I'm glad that Sam is here to share information with you and help calm your nerves.

[♥Ashley♥]

HUGS Resi!

My mom has lupus and so does my aunt. I am so familiar with all the symptoms and everything because of my mom, and because in all of my "adult" older years ive always felt I have lupus. Never been diagnosed yet, but I just have every symptom my mom has so its hard not to think about it all the time. I can tell you, though, that she lives her life just fine. Its tough to be diagnosed with something youll have for life, but you can treat these symptoms...and it not the end of the world. My aunt has it and really doesnt live her life any differently than someone without lupus.

I hope you get a for sure answer soon, and while I REALLY hope its not lupus. Dont feel like its the end of the world...its definitely not.

[KatiInCT]

I just wanted to through in that I had a false positive on my ANA when I was having a ton of joint problems in college. I hope you are able to figure everything out. Don't assume the worse just yet!

[Oriyan]

Originally Posted by Resi

Thanks for the information, Sam. Can you tell me when you were diagnoised and how it was made? Did you have a positive ANA? How often do you get flares? What are your symptoms, and how long do they last? I know everyone is different.

I like many other lupus patients have no "official" diagnosis. I've never had a positive ANA test (weak positive when i was younger but a repeat test was negative). I had a negative test when I was pregnant as well. The key to getting a positive ANA test is that you have to catch yourself at the beginning of a flare (as you did). I never know I am flaring until i am deep in a flare. I have all the symptoms and most importantly, i have a huge family history of it (all the women on my moms side except my mom have lupus -- my 2 aunts, my grandmother, my grandmothers sisters.). I've been symptomatic since I was 10 or 11. Flares started when i was 16. I used to get flares maybe 4 or 5 times a year where i was tired, my joints ached, i had chest pains when I woke up, extreme hair loss, and just an overall blah not right feeling. Usually I flared when I was stressed. I always flared when I experienced something traumatic like a death in the family. My biggest lupus problem is Raynauds phenomenon -- which is basically lack of blood flow to hands, feet, ears, nose (extremities). So It can be 85 degrees outside and my fingers will be blue and cold.

I was misdiagnosed at 13 as having whats called Osgood Schlatter's Osgood-Schlatter disease - Wikipedia, the free encyclopedia I stopped growing at 13 so obviously when i was still in pain at 16, they decided to send me to physical therapy instead, which also did not work. (did that for 18 months). I saw 3 rheumotolgists, one told me I had a psychological disorder and was attention seeking and that I should see a psychologist because she could not find any issues, one told me I was fine and just a growing girl who was sensitive to pain and the last took a look at my history and symptoms and said 80% chance I have it and I should treat myself like I have it.

Now, I get flares maybe once or twice a year. When I was pregnant, I never knew if I was flaring or not because I was always in pain or tired. I did have the classic preterm labor.

My main symptoms are the Raynauds, joint paints in my fingers and knees especially, chest pains upon breathing when I wake up. I have slight kidney damage to one of my kidneys from chronic kidney infections when i was 17/18/19. If i am out in the sun too long, i get a rash on my face, usually in the form of red freckles.

Sometimes the drugs to help symptoms that doctors prescribe are more harmful then helpful, so i usually take Motrin or Advil during a flare. Sometimes I require a muscle relaxer (tramadol) when I am really in pain.

Start taking Omega 3's to keep your heart in tip top shape. Lupus patients have a higher risk of heart attack and heart disease.

[sara~b]

Originally Posted by KatiInCT

I just wanted to through in that I had a false positive on my ANA when I was having a ton of joint problems in college. I hope you are able to figure everything out. Don't assume the worse just yet!

Ditto! I tested ANA positive back in highschool and was falsely diagnosed with Hashimoto's Thyroiditis and put on synthroid. Make sure you get 2+ positive ANA's before you let any doctor start you on anything! I almost fried my thyroid over a false diagnosis!

[*krista*]

Goodness Resi, I know this must be scary for you. I don't really know what to say, I just wanted to offer my support and hugs.

[ShannonMVT]

Just wanted to say I'm thinking about you and hope you get a diagnosis one way or the other soon. I know another JMer who has lupus and I think her life is pretty normal when she is in remission. she has one little girl and another girl on the way.

[alicenwonderland]

*Hugs* I'm so sorry Resi! I hope it is not lupus, but its good to hear there are others living long quality lives with treatment.

[faith*hope*love]

I'll be thinking of you! I know nothing about lupus but it looks like the other ladies have you covered! Don't give up on children just yet, it sounds like there have been many healthy pregnancies even with those who have lupus.

[SandKmommy]

We are 99% sure my grandma had Lupus(a doctor said she did once but she dennyed it) and she lived a pretty long life (she was 74) would've lived longer if she wasn't an alcholic and smoker for more then 50 years.



kup on whats going on

[Frozendesire]

I'm so sorry to hear this. Yet another thing on your plate. I'll be thinking of you lots. Please keep us posted on how your feeling and the results you get.

[ScottishBrit]

Im sorry Resi! There still could be a chance that you dont have Lupus right? Maybe you got mis diagnosed like Sara said? Im still holding out hope that It's nothing to serious!

[~*Bethy*~]

Im sorry you have to go through this

[~*sierra*~]

i'm glad sam is able to give you all that info. and i have to agree with getting another ANA test just to make sure, two false positives in one thread seems like a lot. i really hope you're feeling better soon resi & that it is not as bad as you think...... *mega hugs*

[freesiangel]

I'm sorry you're having to deal with this. I hope the specialist has some great information for you.