a diagnoses of lupus MUST fulfill "at least four of the criteria on the list, either at the present time or at some time in the past" in order to make a diagnoses of lupus (it is VERY important to keep a daily journal of your physical symptoms):
- Malar rash – a rash over the cheeks and nose that looks like a heat rash, often in the shape of a butterfly and may or may not be red and raised or bumpy
- Discoid rash – a rash that appears on any part of the body as red, raised, disk-shaped patches similar to that of ringworm but not always itchy, and persist for more than a week
- Photosensitivity – a reaction to sun or light that causes a skin rash such as malar rash, hives or heat rash
- Ulcers – sores appearing in the mouth and/or nose, or on the skin and that have no other cause
- Arthritis – joint pain and swelling of two or more joints, especially the fingers and toes, in which the bones around the joints do not become destroyed such as with rheumatoid arthritis but do swell and are painful and stiff and can feel hot
- Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
- Kidney disorder – persistent protein or cellular casts in the urine and/or pain in the kidney area of the back, dark color urine, foamy urine, and/or frequent nighttime urination. It can also display as an inability to urinate for 24 hours or more.
- Neurological disorder – seizures or psychosis which can display as periods of 'eyes-wide-open non-responsiveness' or typical active seizures, or memory loss
- Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
- Immunologic disorder –anti-DNA or anti-Sm or positive antiphospholipid antibodies
- Abnormal antinuclear antibody (ANA) which appears in several blood test results over time
1. Symptoms that come and go, change over time, and often imitate other illnesses such as MS (weakness, numbness in the extremities)
2. Joint pain that may not fall within the criteria for arthritis
3. Skin rashes on any part of the body
4. Overwhelming, unrelenting fatigue that lasts for days or weeks and does not relent even if you rest and/or sleep
5. A low-grade fever that lasts for days or weeks and does not relent and cannot be related to any other known disease or disorder
6. Stiff, tender, and swollen joints that feel worse in the morning
7. Extreme dryness in eyes or mouth that lasts for more than a few weeks
8. Painful fingers and/or toes that become pale, red, or blue and/or feel numb and painful
9. A history of strokes, blood clotting problems, and/or miscarriages
10. Unexplained periods of confusion, memory problems, or 'brain fog' that lasts more than an hour at a time
11. Unexplained swelling in legs and ankles on both sides of the body at the same time
12. Sudden, unexplained hair loss
13. Sudden, unexplained weight loss
14. Sudden, unexplained abdominal pain that is made worse when you breathe
As you can see, lupus encompasses many symptoms that mimic other diseases. And because the symptoms of lupus come and go, change over time, and mimic other diseases, it is very important that you document your symptoms in a daily journal, visit your physician frequently, insist on diagnostic testing, and press for answers. There is no single test that makes a diagnoses of lupus; rather lupus is diagnosed over time and as a result of the presence of any or all of the above symptoms at any time. Therefore, it is critical that you see your physician for each and every medical problem, document each and every medical problem in a daily personal journal, and NOT allow your physician to pass your medical problems off as stress, etc. If necessary, seek multiple medical opinions.
As your health problems fluctuate over time, frequently change, and begin to frustrate you, your family and friends, and even your physician(s), it is typical for you, your family, friends, and your physician(s) to wonder if your health problems are 'real' especially if one or more of the physicians you have visited are baffled by your symptoms. Believe in yourself and in your own perceptions of your health problems - don't give up seeking a diagnoses until you receive it! Ask to be referred to specialists, ask for additional tests, and don't give up!
Additionally, question your relatives about their chronic health problems and those of your family members including grandparents, great-grandparents, aunts, uncles, etc. It is very common for autoimmune disorders to pass down through family members. Remember, lupus has a known genetic component (that passes down to family members from ancestors). Be sure to tell your physician if any family members suffer from other autoimmune diseases including: type 1 diabetes, multiple sclerosis (MS), rheumatoid arthritis, sclerodema, psoriasis, inflammatory bowel disease, Hashimoto's disease, Grave's disease, Addison's disease, Celiac disease, or Sjogren's disease.
All autoimmune diseases have one or more common genetic components. It is not know why different individuals go on to develop different autoimmune diseases (see list above) but what is known is that family-related common genetic components in addition to environmental factors result in the development of all autoimmune diseases. Environmental triggers are known to be one or more of the following: bacteria, viruses, toxins, cancer cells, and blood tissues from another person (i.e., back flow of blood from fetus, through the placenta, to pregnant mother). The immune system then produces antibodies in an attempt to destroy the bacteria, viruses, toxins, cancer cells, or foreign blood tissues. In a person with a genetic predisposition to an autoimmune disease, the immune system becomes confused between the person's own healthy body tissues and the invader and begins to destroy those tissues. This destruction can take the form of one or more of the known autoimmune diseases listed above.
I began to display an important symptom of autoimmune problems (high ANA count) after the birth of my second child at age 21, followed by a difficult divorce at age 22. By January 1980, in my early 20's, I was working full-time, raising my 2 young children as a single parent, and struggling financially. At the age of 25, my colon obstructed (a symptom of lupus) and I nearly died, and was hospitalized. This repeated twice more in the next 3 years. I was also diagnosed with acid reflux, irritable bowel syndrome, a non-functioning esophagus, and a hiatal hernia. At age 27 I began to develop extreme abdominal pain and was diagnosed with a pelvic inflammatory infection from unknown causes. At age 28 I underwent a complete hysterectomy and removal of a significant amount of scar tissue in my abdominal cavity from the unknown infection. I continued to suffer serious health problems including painful muscles and joints, skin rashes and extremely dry skin, low red and white blood cell counts, insomnia, rashes, and hives that became worse in the rare Alaskan sun (where I lived at the time), difficulty concentrating and focusing on work and home issues, a constant and debilitating fatigue, an intolerance to cold, hair loss, fluctuating diarrhea and constipation, mouth ulcers, dry eyes that required use of a product called Lacrilube which is used by post-cancer patients, numbness and tingling in my hands and feet, and more.
At age 33, just weeks prior to the planned wedding to my second and present husband, I suddenly doubled over in pain one evening, was rushed to the emergency room, given tests and diagnosed with an infected, inflamed, obstructed gall bladder containing many gallstones. I underwent immediate surgery followed by a short recovery period, marriage and the challenge of blending my new family. About one year later I developed a case of shingles.
Ah, it never rains but it pours, huh? I began to joke with friends that the last organ to safely remove from my innards would be the spleen. Maybe, in the spirit of preventative maintenance, I should just go ahead and have it removed NOW? ha ha!
In 1999 my husband was offered, and accepted, a new IT position in another city and I followed. He and I both began new jobs and a new life in our new city. Within 4 months of beginning my new job, I experienced a week-long period of vertigo, nausea, and fatigue that left me sleeping in bed for nearly the entire week. I sought medical treatment, was diagnosed with a possible case of multiple sclerosis, and placed on medications. The crises passed but was followed a few months later by what seemed like a bad case of the flu. I again sought medical treatment, was diagnosed with Sjogren's syndrome and was placed on additional medication. A few months later my father unexpectedly passed away and I traveled by airplane to his residence to handle the funeral and other arrangements. Following his funeral I returned to work. Just 6 weeks later and on a Monday morning my husband and I stumbled from bed to prepare ourselves for the work day. As we met shortly afterward in the kitchen, he said with a shocked face, "what's wrong with your face?" I ran to the mirror to see that my facial lymph nodes were so swollen that I could have been mistaken for Alvin the Chipmunk! I had the mumps!
The doctor confirmed a diagnoses of mumps that same morning and I was ordered by the Public Health Service to stay home and in isolation for the next 6 weeks to keep the disease from becoming a public menace. Everyone at my workplace, as well as my husband, was required to get a MMR shot if they had not already had one in the past.
I returned to work after the 6 weeks but only 4 months later in February 2002, as I awoke one morning for work, I was unable to raise out of bed. My entire body was in such pain that I could not get up. I again sought medical treatment and after many, many tests was finally diagnosed with Undifferentiated Autoimmune Disease, otherwise known as Connective Tissue Disease, as well as Fibromyalgia. The rheumatologist I saw said, and I quote: "your immune system is like a runaway train, going full speed towards a brick wall, with no one at the controls and if you don't make my recommended changes NOW you will go on to develop a full-blown autoimmune disease that may take your life."
Wow. I finally knew the name of the devils that had tortured me since the age of 22. Each and every medical issue, hospitalization, prescribed medication, surgical necessity, etc., could be traced back to a historically overactive autoimmune system that now had apparently gone completely out of control. Maybe I would die - we wouldn't know for months. I went home. I cried. I called work and went on extended medical leave. I went through all the usual stages of grief. I followed my doctor's advice, took all the prescribed meds, and hoped for the best. Six months later he concluded that my autoimmune system had calmed down and that I would not be one of the extremely unlucky 10% of people who die within one year of being diagnosed with a serious autoimmune disease. BUT I still was basically bedridden and this would continue for almost an entire year.
Tomorrow's edition - How to Get UP! and on with your life even if you are living with a devilish autoimmune disease(s)
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