Tag Archives: rheumatologist

The Day of the Visit

We discussed how to be prepared for your doctor’s visit in my last post. Today I will discuss what to do on the day of.

First thing is try to be 15-20 mins early. They may need you to fill out new paperwork, or re-run insurance. I know every time I see my Rheumatologist I fill out a health questionnaire.

In the waiting room, find a way to pass the time. Bring a book or read a magazine, or what I like to do, play a game on the phone. I find doing this not only makes the wait time seem shorter but also helps decrease any anxiety I may be feeling about the appointment.

While your waiting in the exam room, take a minute to relax and clear your mind of other distractions. I know sometimes I go in and I am worried about something and work or home. I can’t focus on what my doctor is saying when I’ve got other things on my mind. Get your paperwork and notes ready. Think about what you want to say.

And most importantly, turn the phone on silent and put it away. As a patient and doctor, I find it to be a huge distraction. I will ask something and the phone rings and both of us I lose our train of thought. Plus, it’s simply rude. It gives the doctor the impression you don’t care when you are texting/checking emails/ playing games during your visit. I find they are not paying attention, and I have to repeat myself multiple times.Sometimes I’ve had patients answer their phone and start having full conversations while I’m waiting to finish interviewing/examining them. This is a patient’s special time with a doctor and it should be dedicated solely to determining the best plan of care.

During the visit, let the doctor guide the visit. When I see my doctor, I have my own questions and concerns I want to discuss but I usually wait til the end. I let her ask her questions first, because I know she is trained to gather the important information necessary to coming up with a good assessment and gameplan. Usually throughout the course of her interviewing me, I get my questions answered anyway.

Be honest with your doctor. I’ve had a lot of patients try to hide information because it’s embarrassing, or illegal, or simply cause they did’t feel it was important. Doctors keep everything confidential, and are not there to judge you personally. The more information we have, the more we can help.

Take notes. Write down things so you don’t forget once you get home. I don’t know about you, but somedays it’s a lot of info all at once. Also ask about getting any test result reports you need for your other docs.

Don’t be afraid to voice your questions or concerns. You are your best advocate. Also don’t be afraid to ask for something to be repeated or explained again. Sometimes us doctors talk to fast or accidentally use language that others are not familiar with. I usually ask my patients to repeat the plan back to me, to make sure they really understood what I said. I know I’ve misunderstood what my doctor has said to me a couple times.

I really believe that these doctors visits are really important. With the confusion of this disease, I feel like my doctor and the time I spend with her is what really gets me through. I know a lot of people hate going to the doctor, but I actually look forward to it. All in all, these tips should be useful in making your appointment go smoother.

Ask the Doc- Do most doctors recognize fibromyalgia as a real illness?

So before I begin, here is a brief, informative article about what is fibromyalgia.
http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Fibromyalgia/

Ok, to answer the question. If you would have asked me if fibromyalgia was real five years ago, I would have said “no”. Even after I was diagnosed with fibromyalgia, I still wasn’t sure if I believed it was a actual diagnosis. Now, after years of dealing with the disease, I understand fully that fibromyalgia is a true illness.

As far as my colleagues and other physicians go, I think they have differing opinions. Perhaps their views are dependent on their specialty or how much experience they have had with the disease. I think the majority of rheumatologists use the diagnosis easily, while the majority of PCP’s accept the diagnosis, but maybe are not as readily able to apply it.

Fibromyalgia is a chronic pain syndrome which was made as a diagnosis of exclusion, meaning when all other things were ruled out, then we could call it fibromyalgia. There are no definitive laboratory or imaging tests that are done to prove fibromyalgia, only tests to prove that it is not something else. Also fibromyalgia is often found with other diseases such as rheumatoid arthritis and lupus, which makes it unclear if it’s fibromyalgia or just a part of another disease.

There is non- laboratory diagnostic criteria, such as a certain number of 18 tender points on the body,same level pain for at least 3 months, and having no other disease to explain the symptoms. Although there is criteria, you don’t necessarily need to meet all the criteria to be diagnosed with fibromyalgia. Having diagnostic criteria for fibromyalgia supports the concept of fibromyalgia as a real disease.

There are many treatments for fibromyalgia depending on what symptoms a patient has. As the FDA approves drugs for the treatment of fibromyalgia, it does make it clearer in the mind of a physician that fibromyalgia is a true illness.

So in summary, I believe fibromyalgia to be a real illness, and as there is more information, more diagnostic and treatment methods, more doctors will feel comfortable in giving the diagnosis of fibromyalgia and treating patients accordingly.

Please continue to send me your questions, so I can answer them in a post. Also, please keep in mind I cannot give out any personal medical advice.

My Story: Part 2- Bad News

I was in the Family Health Center when the call came in. I wasn’t with a patient at the moment, so I snuck outside into the warm summer air in the front of the building. My facial swelling had improved on the steroids and I was feeling better, so I didn’t think I had anything to worry about.

I heard it in his voice. Something was wrong. He told me that my bloodwork came back and it looked like I may have lupus or some other rheumatologic disease. He said I’d need further evaluation and gave me the number of a good rheumatologist he knew.  He was apologetic for the bad news but wished me good luck.

I ran back inside speechless, guarding the center’s fax machine as I waited for the papers that would deliver my fate.  I snatched up the warm papers as they flew out of the machine. Looking at the words and numbers on the page, nothing made sense to me. What are speckled antibodies? What I did understand  was the protein in my urine, and that made me nervous. I went to consult with my supervising physician, hoping for an explanation and reassurance, but none came. She told me solemnly ” I’m not sure what this means, but it doesn’t look good”.

I met with my rheumatologist the next week. I liked her instantly. She had a genuine and caring demeanor, and seemed very knowledgeable and thorough.  She asked me every question in the book, and examined me completely, looking inside my mouth, searching my skin for rashes, testing every joint and reflex, and combing her fingers through my hair.She said the labwork pointed to lupus, but she needed to do some confirmatory tests. She also said she needed to check a few other labs to rule out any other medical conditions. People with autoimmune diseases tend to get other autoimmune diseases.

The follow-up appointment came and I was beyond anxious. I had lupus and anti-phospholipid antibodies. She said my kidneys looked okay, but we would have to monitor them, and we may need to do a  kidney biopsy. We discussed my ability to conceive and carry a baby due to my anti-phospholipid antibodies which can cause blood clots. She informed me of the worrisome symptoms to look out for, and answered every single one of anxiety-laden questions. She was patient and devised a medical treatment plan for me, explaining that we may need to make changes until I am stable. But most importantly, she told me she was there for me and that we would get through this together. I may have had bad news, but I also had hope.