Facing my first rheumatology appointment tomorrow

Posted by ludevertigo @ludevertigo, 2 days ago

Hi everyone, this is my first time writing on the internet, so I hope it’s okay if this is a little long, it’s my first time posting. I’m just really in need of a space to express myself and find a little comfort.

I’ve been waiting since January to finally see a specialist who can tell me which autoimmune disease is living in my body. Most likely, it’s lupus—that’s the prognosis my primary care doctor gave me.

I’m turning 37 soon. Ever since I was very young, I’ve struggled with major depression, fatigue, pain, and so many other symptoms. I always blamed it on depression, work, everyday stress, lack of exercise... I’ve always thought I was just a sad person, that I was born broken, damaged—and that depression was the root of everything.

For years, I’ve gone through endless medical tests without ever getting a concrete diagnosis. Every symptom has always been attributed to my mental health. According to doctors, everything was “in my head.” I’ve even been hospitalized six times in psychiatric centers because I’ve always been treated as a psychiatric patient first.

But finally, a doctor looked past my words and medical history and ordered antibody tests—and that’s when everything started to show.

I’m exhausted. I’m tired and scared. Hearing that I might have lupus feels like just one more thing, like my mind keeps asking: What more can possibly happen? And I have to admit it—it scares me. Sometimes I wonder if this is really something physical or if my mind has been playing tricks on me all along.

I just needed to get this off my chest. I’m scared of what tomorrow’s appointment will bring. Today I feel kind of numb. I keep telling myself everything’s going to be fine... but I don’t really know. If you’ve been through something similar, I’d love to hear how you navigated it. What helped you get through the uncertainty before your diagnosis?

Thank you for reading I’m sending healing energy and strength to anyone else who’s fighting through difficult days too.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

pb50 | @pb50 | 2 days ago

Hi. I had a very unusual onset of my Rheumatoid Arthritis - in two days I went from nothing wrong to not being able to open a bottle of water, walked like my ankles were fused, and was alternating ice and heat on my shoulders all night. Every joint hurt.

Fast forward three days when my boss had pulled strings to get
Me an appointment with a great NYC rheumatologist. She took some labs and told me i had RA. She gave me methotrexate alone, told me it likely wouldn't be terribly effective, tho sometimes people have a positive outcome - but in either case, we had to give it a go because it was an entry drug that insurers demanded be tried before expensive biologics - and I get that. It had virtually no effect on me and made me ill, so she called the insurer and got an ok to give me Humira. And that was a wonder drug. Five days and i was alive again. I also took Methotrexate for several years until it jacked up my liver enzymes and when i reduced it enough to stop that, I developed antibodies to Humira and had to go on Enbrel instead.

ALL that said to illustrate that treatment of autoimmune diseases is a journey and very individualized. So be patient at first. There could be trial and error for a while. Or your first drug could be miraculous!

Best of luck to you!!

parrot53 | @parrot53 | 1 day ago

Hello, it must be a relief as well as a scare to find out it is your body and not your mind. I wonder how many women over the generations have suffered and been told it was hysteria or depression. In today’s toxic world it is still difficult to get a proper diagnosis as the knowledge of immune system dysfunctions still seems to baffle many doctors. Sounds like you have a good PCP. Hoping your rheumatologist is able to help you navigate this and give you some answers. It is good that you found a place here to share your struggles. Just knowing you are heard and not alone is a bit of help. Wishing you courage, peace of mind, and strength to find your answers.

melodyanne | @melodyanne | 1 day ago

Bless you. At only 37, I can imagine it is scary. Hoping your appt is going well. Be prepared for lots of blood draws and tests. After being physically sick and seeing multiple doctors and one operation, I was finally diagnosed with ANCA GPA Vasculitus after 9 months. That was 7 months ago. The journey has been hard as I had a major flare right after diagnosis and was in the hospital for 3 weeks. And all this happened to me when I had been completely healthy my entire adult life. My advice is "Don't give up." 90% of my doctors have been AWESOME. The two that were not, I didn't mess around with. (One told me to drink more coffee for malaise.) Praying for answers and renewed health for you.

wittygoose | @wittygoose | 1 day ago

I was so relieved that a dermatologist that I was seeing for the dreaded rash, decided to do labs, to rule out Lupus. The labs ruled in Lupus. I knew then, it wasn't in my head even though the rash was so obvious. I have an excellent Rheumatologist at Mayo. So thorough at every appointment. I have had a few heart attacks and pulmonary disease. No one, until 2 months ago, made the connection with Lupus and cardiac and lung issues. The labs were extensive. She was the only provider that refused to take me off Plaquenil to get a baseline. There was enough evidence with labs to confirm the diagnosis. I know this might be late for your appointment, however I wrote down ever symptom that had no explanation.

Best wishes,

🐝 KIND

Becky, Volunteer Mentor | @becsbuddy | 1 day ago

@ludevertigo Welcome to Mayo Clinic Connect! And I see that you’ve already gotten lots of helpful comments!
One thing I would recommend is that you write out your questions (so you don’t forget them in your nervousness). Also, write everything down or ask the doctor if it’s OK for you to record your visit.
Who is going with you? They can help do some of the writing.