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Thread: just found out confused scared silly

  1. #1
    Join Date
    Jun 2003
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    Default just found out confused scared silly

    anyone out there care to reply. I am scared and feel very alone. single mother of four. Just diagnosed with Lupus w a postive homogenous pattern for lupus as well as positive ana. I have been ill for years. Pain and arthritic symptoms a part of my life for 8+ years. fatigue, skin lesions, lots of symtoms Im sure you have heard it all. However in and out of remission I can look back and now see but today im scared because my family doc has referred me to John Hopkins Lupus clinic. No appointment Yet ! waiting almost two monyhes just to hear about an apt. I quit smoking 3wk ago not because I wanted to but I am soo sick . Chest pains I feel like someone is sitting on me and I am tired in a different way . Not like the lupus fatigue I have had forever but like weird fatigue . Had ekg normal doctor thought maybe a stroke. ekg done week after onset of chest pains and incident where I shut rite hand in truck door left nside hand not working the same pain and let side hand weakness. scarry. I will have another mri next week+ echocardiogram and eeg. I feel like I am dying and thats weird because I have a high thresh hold for the chronic pain . I have been in a lot more pain may times but now just feel ill. any Idea. my family doc is old and Im afraid she is missing somthing while I wait for the specialist am I in danger ?

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Ajulba; Hi.....please do not be so afraid. Most of us have had some or all of what you are going through. Your doctor may be missing things and I would suggest that you see a rheumatologist. Perhaps that is why your doctor referred you to John Hopkins...I believe that you will be in good hans there and that should alleviate some of your fears.
    While there is no cure for LUPUS, it is a disease that can be managed with proper medication, self-care, regular monitoring, a good diet and exercise.
    This could be caused by a number of things. however, almost ALL Lupus patients have chest pains at one time or another. Most are not related to the heart. Lupus patients frequently have inflamed heart tissues and a rapid pulse. Also, Lupus patients may develop Tachycardia as a result of infection. Lupus patients are also more susceptible to hardening of arteries in the heart area because of their increased prevalence of high blood pressure and their elevated cholesterol levels due to steroid therapy. Some of the more common causes for chest pain are:
    Pericarditis is inflamation of the tissue membrane surrounding the heard. The pain is generally in the center of the chest and the front and is sometimes mistaken for a heart attack. The echocardiogram should be able to tell you if you have this inflamation.
    Pleurisy is an inflamation of the lining of the chest. The symptom is pain, often upon taking a deep breath. More severe forms produce fluid causing shortness of breath. Pleurisy can be detected by chest X-ray and responds well to steroids.
    Pulmonary Hypertension is inflamation in the linings of the lungs which produces pain and shortness of breath.
    Your fatigue may also be exacerbated by any of the above problems.
    Try to speak with a rheumatologist as soon as possible, perhaps your doctor can refer you to one until you receive your appointment at John Hopkins. Your symptoms may not be as serious or life threatening as you think, it may just be that they are all happening at the same time and that can be very frightening, I know!
    Let me know when you are able to see a rheumatologist and/or when you get an appointment with John Hopkins.
    In the meantime, try not to over stress yourself and take care of yourself :P

  3. #3
    Join Date
    Jun 2003
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    Default Re: Just Found Out

    Hey...Been there, too, and it is frightening. The moderator gave you better advice than I ever could.

    1) Please get "The Lupus Book" by Dr. Wallace. You will rely on it heavily.
    2) I admire you quitting smoking. This will continue to help you. Also, I think it helps to know that you are taking action towards getting better. This gives the patient a feeling of empowerment. You will fail once or twice, but don't kick yourself too hard.
    3) In the meantime, take care of yourself as best you can. Wear sunscreen when outside, and a hat. If you have to have dental work warn the dentist that you have Lupus. He/she will need to monitor you closely.
    4) Also, the day of your specialist visit please abstain from make up. Specialists are FASCINATED with the changes in the skin, whether the wolf mask is present that day or not.
    5) If for any reason you have to have emergency medical treatment, make sure your family/contacts know that you have Lupus, and are pending a visit to the specialist.

    We are here for you.


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