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Thread: New to the site.

  1. #1
    Join Date
    Nov 2008
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    Default New to the site.

    Hello. I have not yet been diagnosed with Lupus. I see a rheumatologist next week. I have been having symptoms for years and it has recently gotten worse. I am a 22 year old young wife and mother who is trying to finish school. As the pain gets worse I tend to cry more and more. I feel like I am losing my mind because I have been told that I was "thinking myself sick." Needless to say, I did not see that doctor again! I have a negative ANA test which is making me really confused. Over the years I have had trouble with:

    * Depression/ Anxiety/ Panic attacks
    * Restless legs at night
    * Age 8 and 15- Blotchy red skin made worse by the sun
    * Age 14- I was taken to the E.R. for swelling in joints over entire body.
    * Age 14- Chronic yeast infections began. The yeast only responds to Boric Acid.
    * Age 14 to present- Began to experience sharp pains in my back on the left side.
    * Age 15- Began having Knee (R) pain.
    * Age 15- I began having irregular and painful menstrual cycles.
    * Age 16- Stomach pain: nausea/ vomiting as well as pain in the lower stomach.
    * Age 17- My hands began to crack and peel while working at a pizza restaurant.
    * Age 17 to present- Noticed white, round patches on my arms after going to a tanning bed. I still get the patches that eventually leave a light scar the fades over time. It is a coin-sized patch that starts red and turns white. It does not itch and is more like severely dry skin.
    * Age 18- Began having very bad headaches.
    * Age 19- I had two cysts rupture
    * Age 19- I began to experience tears in my vulva all the way back to my anus. These are made worse with intercourse. I have to use cortisone cream in order to get the tears to begin to heal.
    * Age 19 to present- fatigue
    * Age 22- I got a rash on my leg the day after my son was born. It was raised/ red/ and itched. The rash spread and did not respond to over the counter medication. I received a shot of steroids that finally made the rash dry up after 3 weeks.
    * Fever blisters/ tiny sores on my tongue/ peeling behind top teeth
    * Sometimes food, such as Ketchup, burns my mouth.
    * Painful joints that are sometimes swollen
    * Constipation- I usually use the rest room every 2 or 3 days.
    * Dizziness- I can lose my balance just when standing or sitting and ridding on a bus. It has happened often in public and is embarrassing.
    * My feet can tingle when I stand in the shower. It feels like I am standing on needles.
    * I get red streaks down my legs after being in the shower for a short time (and the water is not too hot)

    I have been scanned for gallbladder stones and kidney stones because of pain. Nothing was found at the time.

    I have had surgery to look for endometriosis, but nothing was found.

    I have one grandmother with fibromy. and another with RA. My hand scans came back normal. I am just sick and tired of being sick and tired. I do not want my husband to have to ask how I'm feeling everyday just to know if it is going to be a good day or not. My son is only 14 weeks old, and I want to be able to play with him and not think about how bad I hurt or how stiff I am. Sometimes I can hardly open his bottles because I have no strength in my hands. I guess I just want to know if anyone has any similar symptoms. At this point I am desperate. I have been dealing with this most of my life, and I just want an answer!

    Thank you for listening and God Bless!


  2. #2
    Join Date
    Jun 2008
    Thanked 1 Time in 1 Post


    Hi Jen,
    Welcome to the site. My name is Kathy and I have SLE, Lupus and a host of other auto-immune disorders as you can read it in my signature. I feel bad that the doctor treated you like that. I have gone through the same thing several times for several years from the so called doctors. Have you seen a Rheumatologist? I think that you need to make an appointment to see a Rheumatologist. You may have Rheumatoid Arthritis due to the family history of it. It also sounds like you may have Eczema thrown into the mix. You could have Lupus, but you know Lupus is real hard to diagnose and the doctors tend to not diagnose it unless you have 4 of the criteria listed by the American Lupus Foundation. I will put
    the list here that they are looking for when diagnosing Lupus. You can print the list out and take it with you to the doctor and indicate which ones are affecting you ok. Here is the list:

    Classification criteria for systemic lupus erythematosus:1

    Butterfly (malar) rash on cheeks

    Rash on face, arms, neck, torso (discoid rash)

    Skin rashes that result from exposure to sunlight or ultraviolet light (photosensitivity)

    Mouth or nasal sores (ulcers), usually painless

    Joint swelling, stiffness, pain involving 2 or more joints (arthritis)

    Inflammation of the membranes surrounding the lungs (pleuritis) or heart (pericarditis)

    Abnormalities in urine (test results show increased protein in the urine or clumps of red blood cells or kidney cells, called cell casts, in the urine)

    Nervous system problems, such as seizures or psychosis, without known cause

    Problems with the blood, such as reduced numbers of red blood cells (anemia), platelets, or white blood cells

    Positive antinuclear antibody (ANA) test

    Laboratory tests indicating increased autoimmune activity
    Initial diagnosis and disease monitoring

    If you have physical signs of lupus and a positive ANA test result, further testing may not be necessary. If your doctor feels that further testing is necessary to clarify your diagnosis, you may have one or more of the following tests:

    Other antibody blood tests

    Complement test

    Erythrocyte sedimentation rate (ESR, or sed rate) or C-reactive protein (CRP)

    Complete blood count (CBC)


    I hope that this helps some. There will be others that come on here that may have better information for you. I just want to welcome you here. Please keep posting and let us know if you get in to see a doctor and if they help you.

    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  3. #3
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Hi Simon07;
    I am sorry to hear that you were dismissed and not believed by your doctor. It is unfortunate that many of us have had to deal with that same type of treatment; from doctors, friends, family, co-workers, etc. Because our outward symptoms are often minuscule, no one sees how our disease is tearing us apart on the inside and how it diminishes us emotionally. That is one of the most difficult aspect of our disease, making people understand and believe that we are, indeed, SICK! Not just sick from one thing, but because this disease is systemic, it affects every single part of our body. So, our joints are inflamed and in pain, our muscles hurt and burn, our kidneys do not function properly, our lungs become filled with fluid, our heart muscles become inflamed, we develop ulcers in our mouth, nose, vagina, etc., we lose our hair, we are so fatigued that walking to the bathroom feels like we've run a 20 mile marathon, our memory is shot, our equilibrium is a thing of the past; THEN, we also suffer from the side effects of our medications which is a whole list of symptoms added to the ones we already suffer from! It is a heinous merry-go-round that will be with us for the rest of our lives.
    All that we can do is to make sure that we do all that we can to minimize our chances for a flare-up, take our medications as prescribed, make the necessary life-style changes that helps us to deal with our day-to-day lives, keep all doctor's appointments, maintain a positive and hopeful attitude (as much as we can), and to become very knowledgeable about our illness, its treatments, its medications and how it affects us.
    This forum is filled with people who are very knowledgeable, who understand what you are dealing with, who are supportive of how you are feeling, and who want only to help you in any way that we can.
    Kathy has given you good information that I hope that you've found helpful. Please let us know if you need anything at all, we are here to help you.

    Peace and Blessings
    Look For The Good and Praise It!

  4. #4
    Join Date
    Nov 2007
    Thanked 1 Time in 1 Post


    Hey Simon07,

    Sorry to hear that you are having a hard time of it with doctors. For 11 years I was told that "it was all in my head" by doctors and family. I started to feel like it was something wrong with my brain like I was a hypochondriac. So I do understand how upsetting it is.

    You might want to consider and talk to your doc about Fibro. especially if granny has it. It is in your family and with RA so is autoimmune. There is so much that the docs don't know about autoimmune.

    One thing that I have learned is that the ana fluctuates for some. I have two daughters who have that problem. One even sports the lovely malor rash, (much to her chagrin, I might add) Last year, when I had their ANA checked they both came back in the inconclusive category...I hope that you can find someone who is wiling to give you something for relief.
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  5. #5
    Join Date
    May 2007
    Thanked 169 Times in 95 Posts


    Hi Simon..

    Welcome, welcome..big hug....

    You mentioned a negative found it confusing. It is...

    Many of us have/had a negative ANA..but having a negative doesn't mean it rules out Lupus. Five percent of those who do have Lupus have a negative ANA.

    The test is just one of the many diagnostic tools. Kathy mentioned the criteria...

    They could run these tests, if not already..
    1. Antinuclear antibody test (ANA)
    2. Other autoantibody tests (anti-DNA, anti-Sm, anti-RNP, anti-Ro [SSA], anti-La [SSB])
    3. Anticardiolipin antibody test

    For me, they use the anti-ds-DNA.

    Common symptoms of Lupus....
    Painful or swollen joints and muscle pain
    Unexplained fever
    Red rash or color change on the face
    Chest pain upon deep breathing
    Unusual loss of hair
    Sensitivity to the sun
    Swelling (edema) in legs or around eyes
    Mouth ulcers
    Swollen glands
    Extreme fatigue

    Other symptoms of lupus include chest pain, anemia (a decrease in red blood cells), mouth ulcers, and pale or purple fingers and toes from cold and stress. Some people also experience headaches, dizziness, depression, confusion, or seizures. New symptoms may continue to appear years after the initial diagnosis, and different symptoms can occur at different times.

    In some people with lupus, only one system of the body, such as the skin or joints, is affected. Other people experience symptoms in many parts of their body. Just how seriously a body system is affected varies from person to person.

    Are you taking anything for your painful joints? Have you tried OTC NSAIDS?

    I have similar...
    Dizziness, constipation, painful joints..rashes..issues with my pear as of lately

    Regarding cortisone on your vulva. I don't think that is such a good idea. Cortisone thins the skin and our skin is quite fragile in the pear area.. Was the cortisone prescribed? Had you tried neopsporin.

    You mentioned tanning bed...I would suggest stop using a tanning bed. Most of us are photosensitive and the sun, tanning beds, even fluorescent lights can trigger a flare, rashes..... Tanning beds emit both UVB and UVA and it is important to avoid them if you have lupus.

    Keep looking for your wellness...sweet dreams..
    I have Lupus. So *^#@! what.

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