View Full Version : does this sound like lupus? what were your symptoms?

09-08-2011, 10:48 AM
Im 25 years old. I have been having issues with my health for 8 years now.

i was almost certain i had some type of lymphoma. so my GP referred me to a hematologist. I just got a cat scan yesterday and this morning the doc calls and says it was fine and everything look perfect. I was a little bummed to not find anything wrong where as i feel like complete crap every day :( I also got a cbc and everything was in normal range.

i am almost certain i have to have some sort of autoimmune disease. I am thankful its not cancer, although i still feel like it could be im trying to trust the doctors. here are my symptoms.

Extremely tired, can barley do the dishes im so tired. I cant stand for a long time.
uncomfortable feeling in my lower left side.
joint pain which started years ago. My arms get tired so easily.
i have a few swallon lymphnodes, they arent big, but they are there.
increase heart rate.
shortness of breath
a weird feeling in my throat, kind of like somethings stuck in there.
sore throat in the morning sometimes.
i bruise sooo easily i have a ton of bruises on my legs and i dont know how i got them. i also have a reddish rash on my legs.
i get cuts and they take a long time to heal.

what could this be? and what should i do? i am so tired of seeing doctors. I had to beg my GP to refer me to a hematologist and she finally did. now if i go back shes def gonna think im a hypochondriac..

she put me on anxiety pills which im taking now but i do not think thats it. why does my heart rate increase by just walking across the house? and why am i soooo tired?

if anyone has advice, or stories. please share. i am so depressed i might just give up and live feeling like this :(

09-08-2011, 11:23 AM
Hi there!
Don't give up. We all go through a time where we think we're crazy, because Doctors treat us like we are. And that's so fluffing stupid, but there you have it. It doesn't matter if your doctor thinks you're a hypochondriac or not, it matters that you get the medical treatment that you need. If your doctor isn't giving you that, switch to another doctor. You are PAYING THEM, they work for YOU. Doctors have this crazy ability to make us feel bad and like we're wasting their time...when in reality, their job is to work for us.

There are a few things that could be wrong with you. You might have myalgic encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). You could also have Lupus, Multiple Connective Tissue Disorder (MCTD), Sarcoidosis, Sjogrens, or who knows what else. But you have symptoms of a lot of these (mainly joint pain and fatigue). When you're dealing with joint pain, a rheumatologist is the specialist you want to see. A rheumy will diagnose any of these things, and most of the time, should understand what is going on and that you're a real person with an Invisible Illness.

So, um, my advice would be to see a rheumatologist. You know that you're sick, and you know that something is wrong. Unfortunately, nobody else can see the sickness...and in fact, you probably look perfectly healthy. It's up to you to be your own advocate, and to get a diagnosis. It sucks, I know, but that's the unfortunate truth.

Right now, I'm going through kind of the same thing you are. I got sick last November, and when it didn't go away for weeks, I knew something was wrong. I was so tired and fatigued all the time... had horrible nausea, and abdominal pain..eventually chest pain, shortness of breath, and then joint pain. I've seen 4 different doctors, had quite a few tests done, and I still don't know what I have. I'm looking at a diagnosis of any of the things I posted above...but because I've been so sick for so long, I've had time to research, and to talk to people, and that's how i know what I do now. I'm still waiting on my rheumatologist appointment, and, like you, there have been many times that i've almost given up on trying to get the help I need. There have been days when I wake up and delude myself into thinking I can just power through it, its not a big deal, its all in my head - like so many Dr's and people have told me. You just have to remember that you ARE sick, that you DO need help, and you deserve it, too.

So don't give up. Try again. Ask to see a rheumatologist, keep fighting for your health, until you get the care you need.

Sorry..that was really long. But i'm hoping for the best for you, and that you figure out what's ailing you soon. It really sucks, I know.

09-08-2011, 11:49 AM
thank you so much. I just called and schedualed an appoinment with a different doctor. I am going to ask him to refer me to a rheumatologist. I hope that you figure out whats wrong with you too. This is not a fun way to live :( But i am just very thankful its not cancer..as far as they are concerned.

ive been sick for 8 years now and noone can diagnose me either.. its awful, i pray pray pray that this next doctor has an idea of whats wrong, but my biggest concern is the fatigue, and weird feeling in my throat, no idea what that could be.

again good luck!!!

09-08-2011, 12:18 PM
Hi there. Welcome to WHL! I am not a doctor so there is no way I can tell you if what you have is an AI (AutoImmune) Disease because AI diseases are the great mimicker. To get a diagnosis the doctors have to discount every other disease that have the same or similar symptoms. There is no test for Lupus. There are tests that they look at that many of us have but the blood work can fluctuate and show positive results one day and negative the next.

I understand how frustrating it is. So many of us have gone through what you are going through. Months and years pass with everyone thinking that we are crazy. Heck, often times we even begin to think we are crazy because no one can figure out what is happening in our body. Elo said it well. You can't give up or doubt yourself. You know you are sick and you just have to be your best advocate and not allow them to discount you or your symptoms. Somewhere down the line they will figure it all out but you must remember that the doctors work for you and not the other way around. If you are not getting the help you need then go somewhere else. It is not doctor shopping when you are being ignored.

09-08-2011, 07:02 PM
one last question, can a hematologist do testing for lupus? thats who i just saw for the ct scan..or would a rheumatologist be my best bet?

09-08-2011, 07:09 PM
Umm, a rehumatologist would be your best bet, because sadly, a lot of doctors dont know a lot or have a lot of real life experience with patients with autoimmune diseases. Many times we're just like a textbook to them, or something. Rheumatologists are the exception because they deal with it every day, they know what to look for, and have more knowledge and experience. So I would say to get a rheumy... plus, if it turns out that you do have an autoimmune disease or Lupus, you'll be referred to one anyways.
That being said, feel free to ask your doc and see if they can do that and are comfortable with it. (:

09-08-2011, 07:25 PM
hello mamak,
i do not have anything to add, brain a little foggy.

but i did want to say hi