View Full Version : New member. Lots of questions.

01-09-2010, 03:27 PM
Honestly, I don't know what I have. I just have a sneaking suspicion that I have lupus. I thought maybe somone could look at my symptoms and see if they sound familiar. I know I need to go to a doctor but I would feel stupid going there and saying OH I THINK I HAVE LUPUS if I don't.

I am 26 years old. I have been in pain like this since I began my menstrual cycle at 16. I've been to a rheumatologist before who did bone scans, tested my blood, and told me he couldn't figure out what was wrong with me.

these are my symptoms:

*constant joint aching that is sometimes only in my neck and hip/sacroilliac area and is sometimes all over. The all over pain usually occurs from the weather but sometimes there is no explanation. My joints pop all the time. Sometimes the joint pain is so terrible that i writhe in pain and cry. It can go from aching to stabbing. Right now it feels like there are butterknives shoved into my joints.

*random stabbing pains in my abdomen and lower back. these cause me to double over in pain but only last for a second

*fingers going numb in cold

*mouth ulcers, fairly infrequent though but when i get them it's one after the other for weeks

*very severe depression

*constant fatigue. I am always SO Tired. I never have energy.

*unable to think clearly. confusion. forgetfulness.

So could it be lupus? I've never had a rash on my face. I've been tested for arthritis and told it wasn't that. I just really have no idea. I'm pretty scared of what it might be too.

01-09-2010, 05:42 PM
Hi smee.....

I am so sorry that you are going through all of this pain and fatigue. The unknown is so frightening. You say you don't want to go to a dr. because you don't "feel stupid". Please, put this out of your mind. If there is something going on, then you are your only advocate who can pursue a diagnosis and treatment options. Do you have a good pcp that you like? You don't have to start out at a rheumatologist, go to your primary care dr. and explain your symptoms (you don't even have to mention lupus). Let the dr. run some blood tests, and then you can go from there.

You are certainly experiencing some symptoms of an auto immune disease, possibly lupus, but your process has to start with the blood work. I know you are frightened, but there are plenty members here who will be here to help. The unknown is frightening, and so it the diagnosis. Whatever is going on, there are treatment options that will help you feel better. Your fatigue could be from a low vitamin b level.....this can be treated with vitamins....so, don't be scared, go to the dr., and we will be here if you have any questions or if you need a shoulder to cry on.

welcome to our family, i am so glad that you contacted us, please keep us posted.

01-09-2010, 06:16 PM
hello smee iagree with phyllis it could be autoimmune disease possibly lupus but you need full blood work up and write down all your symptoms so you can give them to your doctor do not be scared you need to find out what is going on so they can treat you and we will all be here if you need us hugs kim l

Angel Oliver
01-10-2010, 05:38 AM
Hello and welcome to this forum and YES i agree,sounds familiar to me.The thing to remember is dont give up when the doctor says its not anything.I too am in the same boat.Through fighting Doctors and telling them im NOT happy with their decision,they actually listen to you and second think themselves and do more tests.Dont be afraid of Doctors,they still poo like us :) I now know for sure i have Asthma,IBS,Severe Depression n anxiety,Insomnia,Fibromyalgia,Srjogrens,Reynards and its all thanks to members here giving me the courage to fight doctors decisions.You keep posting here.Everyone understands you and will help and support you through all this.I have a diagnosis of M.E/Chronic Fatigue Syndrome for now but being tested for Lupus.Even if it turns out i dont have Lupus in the end.....at least i will finally know for sure what exactly i do have....inside i know i have it...was diagnosed with it last year,but due to politics and blood works bla bla bla.Remember doctors can also make mistakes ...so keep fighting! We are right behind you!

01-10-2010, 10:00 AM
You've already been given good advice and I agree with what everyone has said. You need to get the testing process started to determine exactly what is going on. As everyone else has said, you could indeed be suffering from an auto-immune disorder, but testing will be the only way to determine which one.

It is also important for you to know that most of us suffer from more than one disorder at the same time (these are called overlapping diseases). For instance, I have Lupus and Fibromyalgia and Raynaud's and IBS and TMJ as well as others. You may find that you are also dealing with symptoms of two or more overlapping diseases.

Also, it is very, very difficult to diagnose most auto-immune diseases and Lupus is one of the most difficult ones to diagnose. That is because Lupus is so different in each one of us, no two persons will have the same symptoms. The disease also changes within us; symptoms that we have this month may go away to be replaced by new symptoms next month and/or they may worsen and a whole new set of symptoms may show up. Also, it may develop slowly and blood tests may not confirm what most doctors look for. So, getting a definitive diagnose may be a lengthy process and can take from months to a year before you get a definite diagnosis. Even after that length of time, some people still do not get a definite diagnosis and are told that they either have Mixed Connective Tissue Disease or Un-differentiated Connective Tissue Disease.

Please know that we will be here for you during this process and we will do all that we can to answer your questions, research information, provide you with comfort, and, most of all, to let you know that you are not alone!!

Welcome to Our Family
Peace and Blessings