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I suspect Lupus

Hi, I'm struggling in so many ways that I don't know where to start. I suspect lupus because I recently noticed that I am very sensitive to uv rays. Yesterday, I stood on the balcony for just 5 minutes and the butterfly rash on my face intensified and began peeling. I also started having chest pains, my heart was beating too fast and I was having trouble breathing. This happens every time I step into the sun. I constantly feel tired and suspect that lupus has been damaging my heart as it hurts and I have arrhythmia. I've been to the er three times this past week for everything I mentioned above. I suspect that I was on the verge of a heart attack during my second trip to the er. The doctors as well as my parents continue shrugging me off and basically telling me that I'm just stressed/ crazy. I feel pain in my kidneys too. I constantly have muscle spasms that never go away in my lower back. I know anxiety and confusion are normal with lupus but I honestly do feel afraid of dying from a heart attack or other complications. I seem to have a very aggressive form of lupus and no one will help. I feel very depressed and suicidal. I feel afraid to go to the doctor tomorrow for fear of being shrugged off once more. At times I think I'm going crazy and it's just inside my head but I know something is wrong.

  1. Hi , I can hear the pain and frustration in your post and I want to thank you for being so open enough to share with us. Reaching out for support can be scary and I appreciate your strength and bravery. Unfortunately, this is all too common in the lupus community. Fighting for doctors and loved ones to take your pain seriously and not "shrug you off" is sadly an experience that so many folks living with lupus experience in their long road to diagnosis. No one deserves to feel that they are not being taken seriously. You deserve to be listened to and to get the care you need to help ease your symptoms and discomfort. You may have done so already, but have you been able to set up an appointment with a Rheumatologist? Sometimes doctors that don't specialize in autoimmune conditions can lack the knowledge needed to recognize the signs of lupus, or may be slower to order the correct diagnostic tests. I can understand why you may be afraid to go to the doctor when you have faced so much disrespect and opposition when you have asked for care in the past. Please know that you are not alone. You are not "crazy" or making things up. You know your body best, you know that your pain is real. You are also not alone in the feelings of depression and anxiety that you have described. Especially when you aren't being believed or taken seriously by those who are supposed to help you! We have an article that explains the connection between lupus and depression/anxiety that I will include a link to in case you're interested in reading more: There are also many resources available both online and via telephone, if you are feeling scared that you may be at risk of harming yourself that I would be happy to share with you, or anyone else reading this post who can relate to these feelings too. I'll include a link in case you, or anyone else, is interested in reading more: Please know, you are not alone. We are here to listen and support you on this lupus diagnosis journey. I appreciate you being a part of our community and shedding light on such an important topic that so many others can relate to.
    Gabby (team member)

    1. smYounhave gone through so much. I am just checking in to see how everything is going. I am sending you gentle hugs and hope that you got some answers and are on the mend physically and mentally. ~Racquel~ team member

      1. I’m so sorry you’re feeling ill. I was diagnosed in 2017 with Lupus erythomisis. And RA. I would love to say that the uv sensitivity goes away but it doesn’t. All we can do is learn how to tolerate and avoid flare ups.

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