Hello From Virginia!

Hello everyone!

My name is Leah, I am 25 years old, and I live in Virginia! I was recently diagnosed with Sjogrens in June, after 3 years of seeing three different Rheumatologists.
My symptoms originally started with horrible fatigue and joint pain in my knees and hips as well as what I described as “growing pains”. I thought it was just residual injuries from being an athlete in high school, but when I mentioned it to my PCP, she ran some tests and saw that my ANA was positive. She referred me to a rheumatologist. When I went to see her, she was AWFUL. Because I was so young, she did not give me the time of day, and told me I was hypermobile and that was that. She told me to exercise but she also ran some blood work and saw that my ANA was elevated and my anti-SSB was elevated but not to the point where she wanted to do anything. I left feeling discouraged and went along with my life until the following year when I was feeling the same, along with some dry eye, dry mouth, tingling in the fingers type symptoms along with the joint pain and terrible stiffness in my ankles. I kept describing the feeling as my joints just felt really full but they never looked swollen. I saw another rheumatologist and I explained my symptoms. He did some tests and as soon as he saw that I was hypermobile, he stopped listening to my problems and told me I was out of shape and I just needed to exercise. At this point my ANA was super elevated and my SSB was still positive but because my SSA was not, and my symptoms did not meet the requirements for diagnosing me with anything, he told me that I needed to go to therapy so I knew how to cope. I left feeling so upset. I knew how I was feeling and I knew that I should not be feeling this awful at 25 years old. I should not be feeling THIS tired after sleeping 9 hours, I should not be limping every time I get up from a chair because my ankles hurt so bad. I should not have trouble opening a water bottle because my hands hurt and are so weak.
I finally saw a rheumatologist in my area and at this point, three years later, she was my last hope. I told her that and she actually listened to me and treated me like an adult who wasn’t crazy. She stayed with me for an hour and told me a lot of my symptoms were from fibromyalgia pain but also because my ANA was so elevated from the last time, she wanted to run more bloodwork. At this point my SSB was positive again but because other things were coming back positive as well, she said I was hard to diagnose. She said because I had symptoms from different diagnoses, I could either have RA with some dry eye and dry mouth, or it could be Sjogrens with joint inflammation. She stuck with Sjogrens and put me on hydroxychloroquine. I have only been taking it for 3 weeks so I am hoping I can see some results soon. I left that appointment feeling relieved because someone had actually heard me! There was now a name for all the pain I have been going through and I knew I wasn’t crazy.
But then, a week later, I was hit with this thought that now I have this diagnosis that will stay with me forever. I will never be normal again, and I can’t explain my symptoms away anymore. It was a hard pill to swallow for me. So, this is why I came here, to possibly find some other people who understand what I’m going through. At times, I felt like I was never going to get better, and never have a good day again. But now I can see the light at the end of the tunnel, I know that with the information I have now and the medication, I can see sun after a long, long rainstorm.

I’m sorry that this has been such a long, horrible process. I’m glad to hear that you are finally being treated, and hopefully you get some relief soon. I was 36 when I was diagnosed with my first autoimmune disease, and thankfully my process was straightforward. I was one of the lucky few.

Thank you for joining us here. I’m here pretty much every day, so don’t hesitate to reach out.

Hi Leah. It’s such an awful awful experience when the people we trust with our health don’t listen, and I’m sorry you had to go through the doubt and unexplained pain for so many years. It’s also a blessing when there is finally someone who understands and believes you, so glad that you were able to find someone to finally explain and put a name to everything you are experiencing! Having a diagnosis, especially at a younger age, might seem like a life sentence but you are not alone! After working in healthcare a bit, especially at a rheumy office, you come to realize that anybody can develop autoimmune conditions, and always being in a diagnosis-free, tip-top shape is really not the norm. There are many others who also struggled with being heard at the doctor’s office and their local community, especially these “invisible” conditions. On the flip side there are also many, here and elsewhere, who have been able to learn to manage their symptoms and make connections with people who can understand what you’re going through.

Hope that you can get your questions answered and feel comfortable telling us about your experiences! We’re here to listen, so please don’t hesitate to make a new topic from our home page whenever you have something to say. Welcome, and best wishes!