Tuesday, June 2, 2020
Home / Power Stories / Keirstyn’s Story (Lupus)

Keirstyn’s Story (Lupus)

Keirstyns Story LupusMy name is Keirstyn. I’m 18 years old, soon to be 19. I’m in college, have a wonderful job, boyfriend, family, and friends. But I feel I can’t enjoy life like an 18-year-old should. I have not been officially diagnosed with lupus, however my symptoms all point to it.

When I was 13 I started having ankle and knee pain, thinking it was just because I had been dancing for so long my joints were suffering. I went to an orthopedic doctor for tests, only to be told that I was fine and I was basically imagining it all. Then when I was 16, I lost both my grandmothers to cancer within 5 months of each other, and then my aunt shortly after my 17th birthday. I started feeling extremely fatigued around this time. I played it off as depression. But I started having pain in my toes, my fingers, my wrists, my back, hips, basically every joint in my body. Sometimes I would be in so much pain that I couldn’t write or do daily activities. My mom took me to my doctor for the millionth time, only to have him look at me and tell me to suck it up. He said someone my age could not possibly have this many problems. He just told me I was not active enough. But he sent me to a rheumatologist anyway.

This doctor sent me for a blood test, but basically told me that I just have “hypermobility syndrome,” which basically means my joints are too flexible. She sent me to physical therapy, where I learned how to strengthen my joints. My mom requested for my blood results to be mailed to us, and it showed I had a positive ANA test. But, when we called a few weeks later to discuss my test results, the office was closed permanently. I have no idea where to go now. My regular doctor seems completely uninterested in my “problems.” So, I have not been back to a doctor in nearly 6 months. I feel as if no one will listen to me or believe me. My joint pain is the worst part of it all, but I also have random chest pain where I cannot take a breath until it goes away. I get headaches every single day, which makes me not want to go out and enjoy myself with friends. I feel like I’m crazy, and after being told that it’s all in my head for so long, I sometimes find myself believing it. But I will continue to fight and find answers for myself. Living life in pain is a struggle, but I do not want to give up and stop doing the things I love. I want to live and experience life the way someone my age should.

Keirstyn
Pennsylvania
Submitted 09/25/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

Check Also

michelles-lupus-story

Michelle’s Story (Leukemia, Ovarian Cancer, Lupus)

It all started innocently enough with a kidney infection. I had previously lost one kidney …

3 comments

  1. I’m 23 and everything in your 2nd paragraph is spot on with me except for that I have tons of fatigue- literally no energy in addition to the joint pain. I also get sudden sharp pains and electrocuting type feelings in my fingers or sometimes it feels like someone is poking me with a sewing needle. I haven’t been to a doctor in over a year besides my psychiatrist b/c I’m sick of dealing with doctors who don’t have the knowledge and experience with autoimmune disorders. I have been to an endocrinologist who said he guesses I have chronic fatigue syndrome and a rheumatologist who acted like I was crazy but said I probably have Fibromyalgia. So since then, I have not been back to see a doctor. I recently moved to PA less than 2 years ago.

  2. Keirstyn, Im sorry that you are dealing with all of this. I was diagnosed with Fibromyalgia 2 years ago, but I had symptoms starting since I was really young. I too had all kinds of doctors tell me that it was in my head, until I found a doctor who actually listened and ran the proper tests. I am 25 years old, and I seriously feel like I am in a 60 yr old body. Fibromyalgia I feel has held me back a lot both physically, and socially. I dont, and sometimes can’t do all the things I use to. Your symptoms sound a lot like some of mine, and I really hope you can get some answers soon.

  3. I am struggle with sle. My age is 20 my life is so painful bones feel like 60 but I will not give up so many problems my parents also avoiding me I have no space of love and mind not peace but krystein I love you
    Because you give more well power to me living life iS pain and gain some love with struggle

Leave a Reply

Your email address will not be published. Required fields are marked *