Just got diagnosed with Lupus and Sjögren’s syndrome

I'm a 23-year old male who was just recently diagnosed with this crap.

I had symptoms start when I was 17, but they were mild and occurred randomly. So doctors thought it was all in my head and were never able to diagnose anything. The frustrating thing was that I had multiple positive ANA tests and there is a history of different autoimmune diseases in my family.

It wasn't until May of 2013 that I initially diagnosed with Rheumatoid Arthritis. I was waking up everyday with swollen and painful fingers. My rheumatoid factor was high and my ANA was positive. However, the swelling and pain never got worse, but a bunch of other symptoms started showing up.

*Dry eyes, to the point where my corneas get scratched by my eye-lids when I open my eyes.
*Rash on my face.
*Shortness of breath, which has bothered me on and off for the last 3 years.
*Pain in my legs and it feels like they're bruised when there are no visible bruises.
*Pain in swelling in other joints
*Brain fog/having more diffuclty concentrating and even speaking a coherent sentence at times
*I get pains in my chest when I try working out

I feel like I was diagnosed 3-4 years ago, I would have been considered a "mild" case. But now with all this other crap and how quickly it started, I feel like I'm on the path of being considered one of the more serious cases.... and now I fear I won't live long and/or live a miserable life.

I don't even know what my question is. I don't even know if I have any questions. I've already done so much reading on Lupus and nothing is clear, which makes it even more frustrating. It seems like ever question is answered with, "well, no two cases are alike! Just follow your doctor's advice!" Awesome. I guess my alternative it to take drugs that are going to cause terrible side effects.


I'm seriously frustrated. Screw this.

This stuff does stink in my opinion too.
I have other nasty hitchhikers too, but this one tops them all.
I'm considered mild to moderate in my symptoms.

I just won my SSDI hearing yesterday. That's the only positive thing I'm getting out of this so far. I can now start focusing on getting my body healthy as it can be.

Thanks for the responses everyone!

A question I have is what symptoms indicate a major organ is involved? I ask because I have had a lot of symptoms related to my heart and lungs. I had an EP study done a couple of years ago because I was having a lot of palpitations and a cardiologist ordered a 24 hour monitor where he found NSVT (non-sustained ventricular tachycardia). The EP study came back okay. I was having chest pains while running, and had a couple of stress echos done, where they saw ischemia on the ECG, but the echo looked "mostly normal." And as I've mentioned, I have had shortness of breath on and off for a couple of years as well. On top of that, my GP found protein in my urine several times over the course of the last 6 years.

I had a cardiopulmonary stress test that I did TERRIBLE on. The doctor said my results were that of an old person with heart failure. Which he thought was odd given that I was only 21 and very thin. One doctor thought I had mitochondrial disease, which shares many symptoms of lupus actually.

The first doctor that diagnosed me with RA wanted to start me on Plaquenil. But she said that my RA was really mild... so I tried natural treatments. I started taking fish oil, but that aggravated my GERD, so I switched to flaxseed oil instead. I cut out all dairy since I'm lactose intolerant and even cut out gluten, because why the hell not. I started eating healthy, and working out. I was even taking ginger supplements because I heard that it naturally reduced inflammation. And honestly, the pain and swelling in my joints pretty much went away.

I thought I was in the clear. Maybe if I stick with this, I can keep the disease at bay long enough so I can keep the toxic medicine away! Then all the other symptoms started popping up and it became clear that it was something other than RA.

Right now, I don't have a plan. I'm afraid to take medication, and I'm afraid of not taking it. I have an appointment in 2 weeks, so I guess we'll find out then.

Joy, how long did it take you to win your SSDI case? Was it a horrible ordeal?

I was nervous to take plaquenil at first too...but once I realized that it helps to prevent the organ involvement.. It was a no brainier for me.Also a little googling about how a lupus patient diagnosed today will most likely live a normal life span... Not the case thirty years ago. It became a much easier decision. I feel so much better on it.

I am sorry you have to deal with this so young. But, great that you are empowering yourself with learning all about it. I follow a rheumatologist on Facebook that wrote the book the lupus encyclopedia...his Facebook page has been so helpful to me... He gives tips a few times a week. Has helped me learn so much. You might want to check it out. Just google the lupus encyclopedia and Facebook.

All the best to you. Take care!

chicagodude: The only thing I hate more than being recently diagnosed with Lupus is hearing about a 23 y/o who has been recently diagnosed with Lupus! I think I have probably had it for many years and had the fortune (or misfortune) OF not being diagnosed until now (just turned 58). The thing that makes me mad is I could have organ involvement now because the docs took so stinkin long to diagnose me! So please...take your Plaquenil. I am now taking it for all that's worth. If you take it now and keep yourself mild to moderate they may have a complete cure in  a few years. Can you maybe find a support group or a church in your area? It's just not normal for someone your age to be going through a chronic disease and I hope you have good family support. I have chronic hepatitis c too, so Im not really sure which disease makes me feel worse but I feel like death warmed over! How about online support? I don't know, i'm just thinking there are a lot of your young ladies your age dealing with this disease and it would be nice if you had someone to talk to. Anyway, I will be praying for you honey~but seriously consider taking the Plaquenil.