I was diagnosed with Lupus today. . .

Any disease is not a good thing. But you are young and it was diagnosed early on. There is no reason to believe that you can't live a good long life and have a family if that's what you want.

I have rheumatoid arthritis and was not given a real diagnosis until two years ago. Thinking back I can remember things from twenty years ago that probably were symptoms.

Now I know and am working to keep it from getting the best of me. I have a really good rheumatologist.

My advice is to find a good one and keep on top of things.

Two of my aunts(different sides of the family) have lupus and lead pretty normal lives. My one aunt has had it a very long time and has 3 very healthy children-her last one being born when she was 40-her 2 oldest were already 16 and 18!

Good luck with your first appt, hun! You will be fine

follow the doctors orders, stay out of the direct sun, and you should be fine for a very long time HUG

I was recently diagnosed with lupus and rheumatoid arthritis, and it answers a lot things as to why I have felt so tired sometimes, and gotten strange rashes over the past couple of years. I am in the midst of my first of round of prednisone, and while it is not doing very well for me, I understand it does well for most people. I am allergic to most meds, though. My life has actually been pretty normal, even with the occasional symptoms. I though I was just getting old. Many people tht have it live perfectly normal lives. You are lucky to have been diagnosed young, it gives you a better chance to fight it and live normally. My aunt had it, and she lived to a ripe old age and had 2 healthy kids.

I was diagnosed with lupus when I was 45 years old. I haven't done a lot of research since then, but it not only comes in "strengths" but also different kinds. My understanding at the time was that the kind that makes a mask on the face is not the most serious kind usually.

Lupus can occur in "flares" that last different lengths of time. In my case I had the one flare when I was 45 that lasted about a year and a half. For me it was like having a flu -- joint and muscle pain, a mild fever, and fatigue that just wouldn't go away. It also affected my mind -- I got stupid. Eventually, it began to lift and has never recurred and that was 20 years ago!

Since you don't seem to be having any symptoms, it probably will not be bad for you at this time. I know other women who have lupus and, like me, they have flare-ups, but feel fine in-between. Your doctor will probably have advice on how to avoid flares. As I said, I haven't done any research lately, so I'm sure a lot more is known now and that there are more effective treatments.

I almost forgot -- many women experience a remission of symptoms when pregnant!

Wow! You have blown my mind! Bless your heart! but just like Marvin would have said "Ain't no step, for a stepper!" That means you are going to have
to buckle down, take care of yourself, and never let it get to ya! Stay
positive, no matter what, seriously, and pray, God will bless you if you can do those things, and don't bobble. Positive will come your way! I will keep you in my prayers. These are called trials, tests, if you will! So keep your head up, and when your feeling low, just ..... look up! PM me anytime! I'm here for ya!
Monique

I'm so sorry to hear that! I'll be keeping you in my thoughts.

Tricia

I have a good friend that was diagnosed in her teens. She leads a pretty normal life. There are good therapies out there and you are so young, the treatments will only get better. BTW, my friend's mom has lupus too, and she is still doing well in her 50s.

Some things I learned from her:
Be your own advocate! learn everything you can and keep copies of your own medical records whenever possible. She actually has a large file with her medical history that travels with her.

Ask questions! Doctors move so quickly between patients, it's important to make the most of the time you have with them. Don't be afraid to ask, you're not the one with the medical degree.

Don't ignore any symptoms! She doesn't run to the doctor every day, but she does keep a journal and notes her general health. That way, if something becomes a problem later she can track back quickly.

Good luck get in touch with others that have your condition. You will see that many are living pretty normal lives.

As mother Theresa siad : "i know god wont give me anything I can not handle, I just wish he did not trust me so much!"

As for symptoms, for the past few weeks, I guess we could say I have been having a flare. My hands and feet hurt so bad in the morning I could cry. Sometimes I cant even squeeze the shampoo bottle, or tear open the cats package of food. That and I get horrible horrible headaches, and I am exhausted all the time. I know I will get better with time. And I know I have to be strong. As my supervisor at work said, I have a new life now. . . Time to make the most of it!

Thank you all again for the support. . . . I appreciate it more than words can say!

Originally Posted by carwashcats

So keep your head up, and when your feeling low, just ..... look up! PM me anytime! I'm here for ya!
Monique

Click to expand...

Thank you!

Exercises for your hands can help. You should ask your doctor, but one of those little squeezy stress balls helps me when my hands hurt. You can also roll them with your feet.

Still sort of worried about this whole thing. . . I know I can make it through this. . . I am hoping for remission! We will see what the rheumatologist has to say tuesday. . .

my aunt has had lupus for a long time and here are a few things she would share

love yourself. see you own self worth and don't ever doubt it.
take care of yorself.
don't feel guilty.

yes, many people cope just fine, don't take that to mean that you're weak or pathetic if you have a bad patch. like someone said, a flare up can last a long time. my aunt's lupus has been pretty severe and she suffers from many lupus related conditions. two years ago, she went into a coma after routine surgery. and even though she's feeling good nowadays, she has a bad days when she feels down and miserable.

we're not always there to support her and her teenage daughters are always sympathetic. so, while friends and family are a great support network, you also have to develop the support network that is always available too, that being yourself.

the other medical stuff, everyone has touched on so i have nothing to add. my thoughts are with you

Lupus is an autoimmune disease - meaning your body thinks of itself as foreign cells. Treatment consists of slowing your immune system down enough that it won't attack itself, but still function well enough to protect you from infection.
To begin with, it will be trial and error to figure out what works best for you - NSAIDs such as aspirin or ibprofen; steroids such as prednisone or a mild chemotherapy. The treatment will vary as the Lupus flares up and then subsides.

I have several friends with it and it really doesn't impact their lives that much at this point.

I'm so sorry! I can't give you much advice, but my friend in high school was dianosed with lupus and is still doing great. I hope the best for you! Everyone on TCS is here for you!

Manda

I am so glad that you listened to the little voice in your head and went for your physical.

To all of you out there, thank you for giving my daughter your support. When she was first diagnosed, we too did not know much about it. It was very scary. We have since been doing much research. She is also on meds and aspirin and the rash has healed beautifully! As long as she keeps listening to the Dr. and does what she is supposed to do I am confident things will be fine.

We are now waiting for the second round of blood work to see where her levels are....liver, white cells, etc.