Wednesday, May 25, 2022
Home / Power Stories / Sarah’s Story (Lupus, Fibromyalgia)

Sarah’s Story (Lupus, Fibromyalgia)

Sarah's Story (Lupus Fibromyalgia)  I don’t think I’ll ever forget how my diagnoses came about. I thought it was just a routine follow up I was having with my Orthopedic Surgeon concerning my second right shoulder surgery. Then, I mention to my doctor about chronic jaw pain I’ve been having and how I’ve already seen a dentist and had my wisdom teeth removed and hoped possibly he could help me. He thought it was odd I had a lot of joint pain at the age of 17 so he decided to run some blood work. My ANA came back positive, so he sent me to see a rheumatologist.

My jaw wasn’t the only joint where I was experience pain at so they ran some tests and I was diagnosed with Fibromyalgia. Around the same time all this was happening I broke out in a really painful rash on my arms and got sent to a few more doctors. They took a skin culture and the tests came back positive for Discoid Lupus. I was half-way through my senior year of high school and got really sick. Luckily all of my teachers were very understanding and helped me finish out high school.

After graduation I was so motivated to help other people I wanted to become a Nurse Aide. I took a class, and worked as a Nurse Aide for only about a month. Unfortunately, my body just couldn’t handle all the physical stress. Now I’m taking college classes to become a Social Worker.

Just recently I’ve been experience a lot of stomach pains, and when my gastroenterologist did a endoscopy, she found a lot of stomach ulcers. One year and a half later, it’s been a really long and hard journey. Lupus and Fibro is what has made me stronger, even though sometimes I feel really weak.

Submitted 6-14-11

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

Amandas Story Rheumatoid Arthritis, Fibromyalgia, and Thyroid Cancer

Amanda’s Story (Rheumatoid Arthritis, Fibromyalgia, and Thyroid Cancer)

When I was 2 years old, I was first diagnosed with juvenile rheumatoid arthritis. After …


  1. Katie Powell

    I know trying to reach your goals while coping through tough chronic pain and other issues can be really, really, really hard. But it sounds like you have great goals, and I encourage you to keep going until you reach them. My own college days were pretty hard, but I’m so proud of what I accomplished, and finishing my degree program has really opened doors for me to help other people too. Granted, there ARE more important things than a college degree, but if that goal is important for you, keep on going!! And you’ll have LOTS of support here 🙂

  2. G Rasmussen

    You sound like a woman with a lot of internal strength. I encourage you to keep working on your goals – even when you have to change those goals to keep healthy like you’ve already had to do. I’ve lived with lupus for at least 17 years and it’s amazing what we can do just one day, one hour, one minute at a time.

  3. Tay

    I actually have a question because my ANA has been high for a couple years now i had some liver issues which is how i found out my ana was high. what other test did they do to confim lupus because my doctor pretty much told me if any other organs start to have issues then he will finally look into lupus. and ive had alot of medical issues already and i’ll be 25 next week. so if you know what other test can be done i would greatly appreciate it thanks 🙂


      there are no clear-cut tests for Lupus, but the link i posted for the Lupus Foundation of America. it has a section that does list some tests that can be done. they basically have a list of criteria, and you have to have a certain number of criteria then they may diagnose you with lupus, BUT definitely do your own medical research and question the diagnosis .. go see way more than one Doctor. i have come to find out that the medical field and the Doctors can be wrong and they have a long way to go. also, it’s your body, and you don’t have to take any medicine recommended .. some of the medicines they tried to get me to take i refused and i have no regrets.

  4. Shannon

    oh Sarah, you are so young! I can’t imagine how it must be for you. But good on you for wanting to help others even when you are feeling so unwell yourself. Sending happy and healing thoughts your way sweetie 🙂

  5. Stephanie Deese

    I have yet to be comfirmed with Lupus but I am really scared. I go back to the doctor october 12th. They have been running test for three months now. I went to the doctor thinking I was having an allergic reaction and was told I have Sjojren’s Syndrome and it is a huge possibility I have Lupus. I have had the the rashes on my face and unusually I walked outside last month an it was like my face was on fire. i couldn’t make it stop burning. I even went inside and got an icepack… That didn’t help. I’ve always had the joint pain in my knees and in my wrist. I dont’ know what to think or do. I need some advice… Any would be great. Thank you!

  6. Tiffany

    Wow, its amazing I came across this story as I have a similar journey.
    My story started at the age of 9, I was diagnosed with hypothyroid disease. By the age of 12 I was suffering from chronic chest and back pain that doctors wrote off as merely chest spasms, only after I told them I wasn’t depressed and I wasn’t taking any more lorezapem (which they gave me in the ER). at the age of 15, I noticed my hands were so blue that they looked black waiting to get inside of my school. I was diagnosed with Raynauds. A few months later, after trying out for the Volleyball team at my school, I went to do a physical and complained of knee pain, and was diagnosed with chondromalacia patella. A year later, around prom season, only after being asked to the prom, did I notice bald spots in my head, I was diagnosed with Alopecia Areata.
    Just as thought i was getting better in my undergrad years, i would go through bouts of low blood pressure and sugar, besides that I figured I was fine.
    At the age of 23, I graduated from college, had my daughter, and everything was good, until a year had passed. I went to my doctor stating that my Alopecia came back, he suggested I see my derm for the Alopecia. Then about a month after my steroid injections for my Alopecia, I complained of really bad bruising w/o running into anything, along with really bad headaches, he ran tests for the headaches and bruising but found nothing. A little later i began to endure horrendous fatigue and pain, more tests were ran and nothing.
    After 4 months of agonizing pain, I decided to talk to my rheumatologist, he stated that i had fibromyalgia, I went back a month later, and he stated that hes almost certain that I have discoid lupus also (don’t go back til February). I know my body and I am sure that there is something else wrong because the unexplained bruising is occurring at a more rapid rate, as well as the body pain, which feel as though I am dislocating body parts, when I walk or lay.

    I just thought I would share my story with you, hopefully to encourage you as I am now working on my Masters degree and have plans to pursue my Ph.D. I wish you all the luck in the world with your health and life. Just stay encouraged and strong because I guarantee that you will finish your degree and be a blessing in peoples life. 🙂

Leave a Reply

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