What to Expect When You Are Expecting… A Lupus Diagnosis
By this time you are probably feeling like a bug smacking a windshield – you have hit the proverbial MD burnout wall. You know something is wrong and every doctor seems to send you somewhere else. You have been poked and prodded and felt like a human pincushion. You have told every intern, nurse, physician assistant and janitor your entire medical history. At this point, you have made an audio “mixed tape” of all your medical highlights for their listening pleasure (but mostly to save your breath). And now you are being “referred” to a rheumatologist. Oh great – one…more…doctor. You dread hearing those words again…”Please fill out this medical questionnaire and rate your pain on a scale of one-to-ten” and you think, “This whole thing is a pain in my NECK, so where is the box to check eleven!?!”
Despite your desire to not put on pants today, (pajama jeans do count as actual clothes right?) you drag yourself to your appointment. Trying to stay optimistic is a daunting task. You think to yourself, “What is this doctor possibly going to say that I haven’t heard before? What should I tell him/her? Does he/she think I am crazy…am I crazy? I don’t think I’m crazy…but, then again, I am talking to myself…” So, before the panic sets in – take a deep breath. You are not alone. Thousands of people have the same thoughts and fears as you. So let’s tackle the fear of the unknown. Here is a breakdown of what to expect and how to prepare for when your rheumatologist walks through the door. Back to top
What is a Rheumatologist?
What exactly is a rheumatologist? A doctor that studies rooms? What kind of rooms? Big rooms? Small rooms? Bedrooms? Living rooms? No, actually a rheumatologist is a doctor who treats rheumatic diseases. A rheumatic disease is an illness that involves pain or inflammation in the muscles, joints or other tissues of your body. A rheumatologist’s role is to diagnose, treat and help medically manage patients with arthritis and other similar aliments. These health problems affect mainly the joints, muscles and bones but sometimes other internal organs like the kidneys, lungs, brain and blood vessels can be involved as well. Because these diseases are often very complex, they benefit from the care of an expert. Only rheumatologists are experts in this field of medicine. Back to top
What to Bring
First thing I would highly recommend that you bring is you…the real you. Don’t put on a brave face and tell your new doctor that “everything is okay.” Because it’s not and that is why you are there. Don’t worry about sounding like Debbie Downer. Just be honest. That is the only way your rheumatologist can get a sense of how you truly are feeling. Secondly, the pill list. Now, for some of you, the length of this document could make War and Peace seem like a post-it®. But every pill, supplement and lotion needs to be talked about. Also, the more information you can provide – the better. That abnormal x-ray from a year ago…bring it. That weird blood work from 6 months ago…bring it! That swollen thumb that wont stop hurting…bring it. Um, you get where I am going with this. Additionally, the doctor will want to know your family history. So the fact that great aunt Bertha used to complain about her aching joints might be relevant in this situation. Lastly, bring a notepad and a pen to take notes! It would be wise as well to write down questions beforehand and ask your caregiver or spouse to think of anything you may want to ask that you can’t remember. Reason for this, hello LUPUS FOG! You need help remembering…remember? Back to top
What to Ask
If your rheumatologist is suspecting that you have lupus, here are some questions that would be worth asking:
- What does my future look like with this disease?
- What are my treatment options?
- Are there any homeopathic or alternative treatment options?
- Could this be something besides lupus?
- What are the possible side effects of the lupus medications?
- How do I prevent a lupus flare and what are the signs that one is coming?
- Has the disease spread to other places?
- Should I change my diet or lifestyle?
- How often do I need to see a doctor and have blood work done?
- What sorts of resources are out there for me to learn more about lupus?
The Physical Exam
After you discuss your symptoms you will most likely be told those wonderful words, “Please put this gown on and make sure it opens in the back.” Always fun wearing clothes made out of tissue paper. And though you probably hoped a doctor would have to buy you dinner first before he/she saw you naked, a physical exam is just a way for them to help reveal more clues about your health condition. Rheumatologists examine patients from head-to-toe looking for signs of inflammation, redness, warmth, rashes and sometimes unusual nodules to help aid them with a correct diagnosis. Back to top
Tips on Having a Successful Visit
Remember, like all of us – doctors aren’t perfect. Have patience and an open mind. Even though doctors may seem like they are asking obvious questions, they do have a reason for them. After all, they did go to college, then four years of medical school, complete a residency program AND have another two to three years of specialized rheumatology training. Try not to resent them because you have been frustrated with your other doctors thus far. Verbalize how you are feeling about your health, and set up goals with your doctor. Talk to your doctor about your passions, your hobbies, your family and pets. You are a person not just a patient file and if you show that to them, it will make your patient/doctor relationship only that much stronger. Back to top
Wrapping it Up
So between your medical history, family history, physical exam, and lab results, your rheumatologist should have enough information to decide on some sort of treatment plan. Hopefully throughout this process you have gotten a feel for your new doctor and whenever his or her bedside manner is warm and fuzzy or ice cold. And take note, if at first you don’t succeed try…try…another doctor. It is perfectly okay to ask to see another doctor. Finding the right doctor is like finding the perfect glove. Sometimes you have to try on a few before you get the right fit. But take heart, you just earned yourself an “A” for attendance. Congratulations, you survived and mastered your first visit! Back to top
*All images unless otherwise noted are property of and were created by Molly’s Fund Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Molly’s Fund Fighting Lupus. **All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.