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Thread: I am new to this site looking to learn more about LUPUS

  1. #1
    Join Date
    Sep 2010
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    Talking I am new to this site looking to learn more about LUPUS

    Hello everyone!

    I have not been diagnosed with Lupus but have some relatives on maternal side of family who have. I also have a relative with polymyositis. What brought me here is my own struggle over the last 14 years.

    After having my youngest son who is now 14 and I was 24 at the time, I started having some strange things happen to me. After the birth of my son it was like my whole system was out of wack. I experienced extreme fatigue, irregular menses, hair loss all over head that never came back (not patches), severe memory issues. That was in 1996 and still exists. Then in 1999 I came down with pneumonia and pleurisy (my only diagnosed episode) that took me about 7 months to get over. My doctor didn't know if it was bacterial or viral but gave me antibiotics just in case it was bacterial. The antibiotics didn't help so he determined that it was viral but I wasn't convinced because I never had any symptoms other than sudden shortness of breath then the pleural pain came after. I never had any indication of getting sick until one day I noticed I was short of breath walking from my couch to do laudry. Other than that no indications.

    Then in 2000 I took a job in retail working overnight hours. Every time I turned around I had people asking me why my face was soo red all of the time. I didn't have an explanation for it. I do know I wasn't spending time outdoors because of the hours I was working. At one point I was asked if I drank alcohol and I said it was extremely rare like maybe once every 1 or 2 yrs. I would probably drink more than that but I found after having my youngest alcohol affected me differently. I am talking just a few sips and I already feel the effects along with speech issues. In 2002 I had a sudden onset of neck pain that moved up to my ear. I thought maybe it was due to strain or tension. A few days went by and things just got worse after that. Eventually it turned into a 8 day migraine that my doctor had to prescribe pain meds for without them there was no sleep and with them I slept about 3 hours at a time. I then woke up with one side of my face paralyzed. Went to the ER they performed a CT scan and told me everything looked fine and that the paralysis was due to migraine. I went to my primary doctor and she informed me that it sounded like Bells Palsy. She asked me if I had any colds or fevers recently and I said no. She tested me for herpies, lymes, and HIV. All of which were negative. The paralysis went away but I was left with episodic migraines and shooting nerve pains. Never did figure out what caused the Bells.

    After the Bells I continued to have migraines with neck stiffness. Recently I have started experiencing tingling and numbness along with nerve pain and finger joint pain without swelling. I have also been experiencing soft tissue pain in my upper left arm. If I am up on my feet too long I get extremely tired and hurt from head to toe. I hurt to the point that walking can be difficult. I often get feelings of feeling like I am getting sick and my temp is either 1 degree above norm or 1 degree below the norm. I guess that would be malaise. There are times when I just will be walking along and my ankle joint will start hurting (I have had this in both ankles but not at the same time). The ankle pain only last for 5 minutes to 2 hours. I have the redness in my face that appears to be malar like but I can't be sure. I just know that it is on both cheeks and color intensity varies. The area is just pretty much smooth (meaning no pimples or lesions) and when you look at it close the area looks a little inflamed compared to the rest of my face and the area sometimes feels like its burning at times but no itching.

    Recently I was diagnosed with PCOS, seizures, with no known cause and I have vitiligo on my chin. I also have another suspect rash on my neck, and back that I thought could be tinea versicolor but my doctor doesn't think so, because it never goes away or lightens, she said it just didn't look the same. She mentioned possibly being autoimmune related. After my episode with Bells I had an annular like rash on my inner thigh just above my knee that at first I thought was ringworm. It started out to be about the size of a quarter with a raised border and clear center without scales. It gradually got bigger and the center turned purple with the border staying raised and red. It reached the size of a softball. This lasted about 6 weeks then went away on its own. I didn't go to the doctor. I also get these tiny red sporadic dot that look like petichaie, they are under the skin. These dots are here and there throughout my body not extremely noticeable to others but I notice them.

    My doctor performed an ANA, I was just informed it was normal but wasn't given the results. I have also had my thyroid tested and that came back normal. My cholesterol levels were off. My doctor recently checked my blood sugar for the 4th time this year and all of the sudden it was elevated which I found strange because she had performed the test two 3 weeks prior to the most recent. She performed the most recent because I thought it was odd that I had PCOS and my insulin always seem to be fine. PCOS is believed to be caused by insulin resistance.

    Last year I had an abdominal ultra sound because I have issues with indigestion, discomfort, and a feeling sometimes like my right rib cage is rubbing on my liver which in turn makes me feel bloated or squeezed in the liver region. Well they found gall stones and said I had a fatty liver during an US. I have since had the gall bladder removed the surgeon was going to do a liver biopsy based on the results of the US. He didn't perform the biopsy because he said my liver was unremarkable. I am pretty confident that he checked my liver pretty good. I say that because I know him on more of a personal level. My daughter babysits for he and his wife. I still have episodes of feeling bloated in the liver region as well as feeling like I have a belt squeezing me in my abdomen. Which I wondered about MS. I had a brain MRI that came back normal. I know I definitely have some neurological issues. I have other symptoms as well. I am just trying to find out as much information as I can so that I can be my own advocate. I have to find out what is wrong with me. I have spent too many years with my children litterally disrespecting me and making feel as if I am making things up. My husband has tried to be supportive but he always throws in the "If only you had a job". I haven't worked consistently since 2006 because I have a difficult time with doing just part time hours due to fatigue and brain fog. Now with the seizure diagnosis I am not sure what to do.

    Other than the medical side I am a mother of 3 one in college and one graduating 2011. I am married to a wonderful man who has taken on a lot of stress over the years due to me being ill and not getting any answers. I try to stay in the positive and not blame the doctors. I understand that I am just one big puzzle that the pieces still need putting together. Hopefully sometime soon I will figure things out once and for all. Any input from anyone would be appreciated. One of the things I am trying to tell the difference between is a malar and rosascea rash. Not sure If I should bypass the dermatologist and go straight to a Rhuemi or not. I have heard of malar rashes being misdiagnosed by derms.
    Last edited by rob; 09-09-2010 at 07:25 AM.

  2. #2
    Join Date
    Mar 2009
    Lebanon, Pa.
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    You have a very long list of symptoms and major things going on with you. Thank God you have a patient and caring husband. A lot of these symptoms are what everyone else has with these dieases. If you think that something is wrong you have to be your own advocate when it comes to your body. It would be a good thing to see a rhuematologist and i hope you get a very good and caring one who does not tell you that this is nothing. There are many tests that they run and then sometimes it takes a long time till they come up with a diagnosis but please do not let it go it has been going on long enough. I have only had my diagnosis for 4 years and i am 61. Everyone here is very helpfull and will listen and answer things for you. Love and prayers Bonita

  3. #3
    Join Date
    Nov 2001
    Victorville, California
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    Hi Catpin;
    Welcome to our family. You are doing the right thing in trying to learn as much as you can about what is going on with you so that you can be your own health advocate. Often times, we find that we know much more than our doctors and we have to educate them in order to get proper care. One of the primary reasons that this site exists is to help one another in becoming educated and in learning how to manage our symptoms and maintain a reasonably normal life.
    You asked about the Lupus Rash vs Rosacea. The Lupus malar rash is a redness or rash that may appear in a butterfly configuration across the nose and cheeks (the butterfly configuration is not mandatory for a malar rash). It can appear on one or both sides of the face and it is usually flat. In rosacea, the rash does not have the butterfly configuration.
    The lupus butterfly rash is characterized by a butterfly-shaped red rash that extends over the bridge of the nose and the cheeks. The rash may be flat or raised. The malar rash often appears or gets worse after sun exposure (photosensitivity) or stress that causes an increase in the circulation to the skin. Sometimes the lupus butterfly rash appears on other parts of the body as well, usually on the trunk, arms or legs. The malar rash normally is not painful, although it may itch and cause a burning sensation. Sometimes the malar rash appears when the disease flares up (an active state of lupus). The malar rash may be the first sign of lupus, the sign that lupus is entering an active phase, or it may actually cause the disease to attack other tissues in the body.
    The lupus butterfly rash can be as mild as a slight blush-like rash to a severe, scaly rash. The butterfly rash can last for a short period of time or it may last for many months. The reason the malar rash is shaped like a butterfly is because it follows the angle that the UV rays land on the skin. The malar rash is caused by a malfunctioning immune system, which causes the body to attack healthy tissues in the skin (such as Lupus).

    Rosacea is clinically defined as a chronic skin disease that causes redness and swelling, primarily on the face. Rosacea usually varies in severity, and manifests in episodes of flushing and inflammation of the affected areas.The common rosacea symptoms include:
    Flushing - frequent blushing or flushing is sometimes the first sign of this disease. This facial redness may come and go and is not in a butterfly configuration.
    Persistent Redness this is the most common rosacea symptom. It is like having a blush or sunburn that will not go away. This may be more noticeable when smiling, frowning, or squinting. Using cleansers, cosmetics, or moisturizers may increase the irritation and redness. It is this redness that causes the confusion and causes some patients to ask if rosacea is a symptom of lupus.
    Bumps and Pimples - Bumps or pimples on the skin, either small and solid (papules) or pus-filled (pustules). This may resemble acne without blackheads. Rosacea may sometimes burn or sting, this is commonly referred to as acne rosacea.
    Visible Blood Vessels - Red lines (telangiectasia) in the face caused by enlarged blood vessels.

    From your description, it may be that your rash is not rosacea and could possibly be malar. However, a doctor (preferably a rheumatologist) will have to make the final determination. Your history and your symptoms are so familiar to those of us who suffer from an auto-immune disorder. It is very possible to have a negative ANA and still have an auto-immune disorder (and vice-versa). Getting a diagnosis can be a lengthy and frustrating process, especially if you are dealing with medical professionals who know little about auto-immune disorders. I hope that you are able to find a competent rheumatologist who believes you and who is sincerely interested in helping you. In the meantime, we are here to help you as much as we can and in any way that we can.
    I wish you the very best.

    Peace and Blessings

    Look For The Good and Praise It!

  4. #4
    Join Date
    May 2007
    Seaside, Ca.
    Thanked 948 Times in 732 Posts


    Hi Catpin,
    Welcome to WHL. Saysusie has put you on the right track about the rashes. Read through the threads here, and you will find that your symptoms are familiar to many of us. Many of us have also been through all of the ups and downs of trying to find out the meanings of our blood tests and dealing with docs who are very unsympathetic.
    You will find that you've come to the right place for folks who understand.

  5. #5
    Join Date
    Mar 2010
    foothills of carolina
    Thanked 9 Times in 9 Posts


    Welcome, You came here for much the same reasons that I did. To learn more and hopefully find answers. Before my diagnosis I felt like the doctors needed to throw out the rule book and start over with me. Then on here I find people with all kinds of things going on and I'm not alone... neither are you. The good thing is there are people on here that do understand, information that will be helpful and a place where you can be yourself. As the others have said.. find a good Rheumy. It means a lot if they will actually listen and try to help. Best wishes in your search for some kind of answers! Knowing some answers gives you power... You know your body better than anyone else. Best Wishes to help you along this journey. Billie

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