Lupus?anyone have it or know anyone suffering from it?

What are your symptoms, how do you cope?

I will know the 20th of this month if what symptoms I am suffereing from is Lupus. So far the hematologist says that he is almost certain it is, but is doing a repeat test to make sure.

So far i've had bad pain in almost all my joints, a butterfly rash on my face, skin lesions on my face, and fatigue.

I have four blood clotting disorders, one of which (APLS) can go hand in hand with lupus because it is an autoimmune problem as well.

According to webmd.com the possibly symptoms are:
What Are the Symptoms of Lupus?
There are times when lupus gets better and times when it gets worse. Symptoms of lupus include:

Profound fatigue.
Low-grade fever.
Severe muscle aches and joint pain.
Skin rash on the face or body.
Extreme sun sensitivity.
Weight loss.
Mental confusion and seizures.
Chest pain on taking a deep breath.
Nose, mouth, or throat sores.
Enlarged lymph nodes.
Poor circulation in fingers and toes.
Bald patches and hair loss.
Discolored urine.
Frequent or blocked urination.


Call Your Doctor If:
You have several of the symptoms listed above and suspect you have lupus.

You have a family history of lupus and have experienced some of the symptoms above. Be even more alert for these symptoms if a close family member -- your mother, father, or sibling -- has lupus.

Lupus can be deadly. If you think you may have lupus, see a doctor right away. Treatment is much more successful if begun early and followed faithfully.

My husband was diagnosed with systemic Lupus when he was around 10 years old. He had a lot of leg pain and weakness, and then he had a period of really fast weight loss and fever.
He has ongoing problems with arthritis and back pain.
He has never taken any drugs for it, and no longer has any symptoms (he is 24) or pain that can be attributed directly to lupus.

my mom has systemic lupus. she basically just suffers. i don't think her doctors are doing all they can. when she has a flare-up, she just lies on the couch and is in pain. i'm afraid her suffering will get worse. she's 49.

A fried of mine suffers from it. There is a Lupus Foundation that is full of information. Check it out at www.lupus.org/

I have systemic lupus with organ involvement. At the worst, I ended up in hospital for 14 days. I had pancytopenica anemia (low red cells, white cells and platelets), inflammation of the pericardium (sac around the heart was filled with fluid), pleurisy and pleural effusions (inflammation of lining of lungs and fluid in them) and the beginnings of kidney failure. I had joint pain, weakness, confusion and profound fatigue. I spent over 4 years on disability.

Fast foward. I am now working full time and loving it. The lupus is pretty much under control. I take plaquenil twice a day and cellcept once a day. The cellcept will be with me for life because of the kidney disease.

I learn about lupus. I exercise by walking briskly and doing yoga, practice meditation, use affirmations, do good for others, rest before I get too tired, eat a mostly vegetarian diet, avoid all processed foods, and make sure I spend the energy I have on things that really matter.