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What’s Next After a Diagnosis of Rheumatoid Arthritis

Diagnosis of rheumatoid arthritis

The diagnosis of rheumatoid arthritis (RA) is often heard by the patient as something life-threatening or, at least, life-altering.  Life-altering may be true, but RA is a diagnosis that can usually be managed if you educate yourself and follow your doctor’s recommendations.

When I was first diagnosed at age 34 in 1977, I recall feeling surprised but not alarmed.  Actually, I didn’t know what rheumatoid arthritis was – had never heard of it.

My family doctor examined my red, swollen big toe, and ordered the usual labs because he suspected gout.  The labs came back clean, and my doctor then referred me to a rheumatologist, suspecting psoriatic arthritis, something else new to me.

The rheumatologist agreed with that suspicion but several months later, she changed her mind and diagnosed rheumatoid arthritis.

Information Is More Available Now

In 1977, most of us didn’t own computers and knew nothing of the internet.  Libraries weren’t exactly swimming with information.

Today, a newly-diagnosed RA patient doesn’t have those problems.  The internet and social media provide plenty of excellent information and advice about rheumatoid arthritis.

As an RA patient of 46 years, I recommend those of you who are new to this disease to read the following suggestions and give them a try.  You’ll come away with a more positive outlook about handling your new diagnosis of rheumatoid arthritis.

Where to Begin

I remember feeling confused after my diagnosis, because I had no idea how serious this disease is or what to expect.  Today with more available information, newly-diagnosed RA patients will find all kinds of information about rheumatoid arthritis, how it is treated and what to expect in the future.

Avoid the Gloom & Doom Naysayers

If you haven’t experienced them yet, you will!  From “Great Aunt Millie” whose arthritic knee kept her from walking in her last years (not rheumatoid arthritis), to the friend who whines constantly about her lack of sleep because her back hurts due to her rheumatoid arthritis (no diagnosis – no doctor), to certain family members who dismiss your disease as “nothing” and tell you to “get over it,” they seem to come out of the woodwork when you try to explain your condition to them.

Stay away from them when you can. You don’t need negativity in your life at any time but especially not, as you learn to deal with your diagnosis of rheumatoid arthritis.

Read, Read, Read!

When you walked away from that doctor’s office with your initial diagnosis of RA, your mind was probably forming question after question.  You have the opportunity to find answers to most of your questions using your computer.  You may want to sign up to receive emails from several groups or just browse on your own without making a connection. Save the ones without answers for your next rheumatologist visit.

Before you begin, start a list of all your questions.  Then you can Google those questions in your search for answers. Remember that not all website information will fit your situation, and not all information you find will provide what you need. That’s why multiple sources of information may help.

Several websites have helped me with research for books and articles over the years and may provide you with information you need about your newly-diagnosed RA. If you would like a more complete list of sites and/or groups that provide reliable sources of information, email me using the CONTACT page on this website.

My e-book, “Rheumatoid Arthritis: A Living Nightmare,” is an excellent source of information for someone just diagnosed with rheumatoid arthritis. It sells on Amazon Kindle for only $1.99, the least they would allow me to price it. You can see it here.

Creaky Joints

One of my favorite websites for solid information is Creaky Joints. This site provides down-to-earth articles that relate to many of us at various points in our lives. One example is for those of us who find it difficult to say no. I suffered from that issue for years – until my late 30’s – and wrote about it in my book. While not restricted to RA patients, we do find it necessary to beg out, say no to some events that come up in our lives, because we just don’t have the energy. Or maybe we don’t feel well that day. Kelsey Kloss, wrote an article in Creaky Joints on setting boundaries, learning to say no when necessary.

The website covers many subjects of interest to RA patients, including how to obtain co-pay assistance for some of the more expensive medications, pain management, education, depression and more.

Arthritis Foundation

You have to dig a bit into this website, but the information is worth it and dependable. The Arthritis Foundation offers information on all kinds of arthritis, not just RA. They cover available information on treatments, medications, healthy living in general.

Healthline

I like the readability of this website. Today, I still get confused about lab results. I’m not a “numbers person” anyway, but I find all those lab numbers confusing at times. An article on Healthline, “Rheumatoid Arthritis: What CRP Levels Say About You,” explained to me in easy-to-understand language what a CRP level is (a protein found in the liver and in blood) and how it’s used in diagnosis and treatment of RA. You can sign up to receive their newsletter for plenty of helpful information.

Johns Hopkins Arthritis Center

This website addresses various arthritis-related autoimmune diseases and is easy to navigate. I often use this site in researching my articles and can find most anything I want related to RA. There is a Patient Video Education Library that would prove helpful for someone who just received a diagnosis of rheumatoid arthritis.

Mayo Clinic

The page I’ve listed for Mayo Clinic is actually a search page on their website. I used it because the page is full of articles on RA that might interest a patient. I also don’t mind wandering around the Mayo site. They have a search icon on the top right of each page to enter a specific search.

A little research will show you many internet websites to help with your search for information, and you will soon gather your own favorites.

Social Media RA Groups

You may want to investigate other social media groups, as well, but I recommend two groups on Facebook. Living with Rheumatoid Arthritis and Rheumatoid Arthritis Group both appear to be set up well with admins who monitor the sites for scammers. Members are encouraged to share problems related to RA and help answer others’ questions when possible. Both groups are private and only members can read what anyone shares.

A Diagnosis of Rheumatoid Arthritis Requires a Good Rheumatologist

According to one site, a simple definition of a rheumatologist is an internist or pediatrician but with more training. This training includes the “diagnosis (detection) and treatment of musculoskeletal diseases and systemic autoimmune conditions commonly referred to as rheumatic diseases. These diseases can affect the joints, muscles, and bones, causing pain, swelling, stiffness, and can potentially cause joint deformities.”

You can certainly find this specialist using the internet, but I recommend a more personal search.  Talk to your friends and family.  They may know someone who has just the rheumatologist you want.  Check nextdoor.com in your area.  Post exactly what you want in a doctor and you may get responses with more personal information.

Make a List of the Traits You Want in a Rheumatologist!

In selecting a rheumatologist, you want someone who listens to you, talks to you about your disease and symptoms and treats you kindly.  No Negative Nellies wanted here!  If the doctor doesn’t have hope for your improvement, you certainly won’t. Honesty is possible without leaving you feeling hopeless.

You don’t want to feel rushed during your appointment.  I had one doctor who worried about missing his tee time when he was with me.  I know because I asked him. After a few office visits with him constantly checking his watch, I had enough and found another rheumatologist.

Don’t be afraid to ask the doctor’s receptionist about him when you call to make the first appointment.  Their attitude can tell you a lot.  When I made the first appointment with my current doctor, I asked the person on the phone what he was like.  I told her it was important to me to find someone who was nice, who would listen and talk to me and didn’t make me feel rushed.  She reassured me that I would love this man!  She spoke of how nice he is and how much his patients like him and trust him.  When she finished, I was sold.  And so far, he has lived up to her praises.

In short, know as much as possible about your new rheumatologist’s personality and professional qualifications before your first visit.

Why You Should Stick with the Doctor You Select

During my 46 years of dealing with RA, I changed rheumatologists more often than I liked.  But there really was no choice in my case.  I knew so little about the disease that I didn’t know what questions to ask or what I should expect from those doctors.  Back then, RA patients didn’t have the option of biologic medications or disease-modifying antirheumatic drugs (DMARD’s) that help so many of us now.

My first rheumatologist ran out of non-steroidal anti-inflammatory drugs to prescribe for me and finally told me she didn’t have anything else to suggest.  I was forced to find a new doctor.  The next one sat at his desk with his hands folded and looked down his glasses at me, saying, “You need to prepare yourself for life in a wheelchair because that’s where you will end up.” He had not even examined me.

I responded, “Like hell I will,” and I walked out of his office.  A couple more doctors followed, who offered me zero help.

Real Help Came from My Next Rheumatologist

My next stop was Vanderbilt Medical Center, and a rheumatologist who changed my life.  Dr. Teal tried several medications that didn’t work for me but in 1998, she prescribed Enbrel, which I have injected for 24 years.   I would have stayed with this doctor forever, but we moved to Florida after a few years. 

On my first visit to my current rheumatologist, I typed up a history of my disease and physicians I had seen. I didn’t have actual records to give him and was unsure if my last doctor would even send them. The doctor commented that because I’ve been under the care of so many rheumatologists over the years, it was difficult to put together a complete history. That was a comment I took to heart, so I recommend you find the specialist who works best for you and try to stay with them. Doctor-shopping isn’t helpful, although it may sometimes be necessary.

Start a Journal

As soon as you receive a diagnosis of rheumatoid arthritis, begin writing in a journal of your choosing each day. This journal should accompany you to your doctor appointments. It will help you to answer the doctor’s questions. I chose to keep my journal on my computer, and I can easily print out the pages, my rheumatologist will want to read at each visit.

Your rheumatologist will want you to get regular blood work, so he/she can keep track of your disease activity. Keep a copy of those lab results in a folder for future reference. If your doctor’s office uses a patient portal, as many do these days, you can print the lab results from that site.

What to Include in Your Journal

This journal should include an accurate history of your disease and symptoms as you live it. Treat it as a daily diary and include anything and everything related to your diagnosis of rheumatoid arthritis.

Document Your Pain Levels

When is it the worst?  How do you feel when you first wake up each morning?  When do you feel the best?  When is your swelling the worst?  Describe how you feel at certain times of each day, if it changes. Date these entries so a pattern can be established.

Keep Track of Your Medications

Write down your reactions to each drug you take.  The doctor will want to know how each affects you. Include any over-the-counter medications, as well as prescription drugs from other physicians.

What to Expect from Your First Rheumatology Visit

A new patient should expect the physician’s nurse or assistant to do a routine check of blood pressure, pulse, etc.  This person will ask you a lot of questions to fill in your record.

The rheumatologist will also ask questions and should do a physical exam of sorts.  He or she will schedule tests like X-rays and possibly MRI’s and blood work.

Your job as the patient is to provide as much information as the doctor needs and perhaps take notes so you don’t forget anything.  Just as you expect the doctor to treat you with respect, you should treat your doctor respectfully.

Don’t be afraid to ask questions. The doctor should welcome them and if he or she doesn’t have time to answer all of your questions hopefully, he/she can direct you to a good source of information. Remember, this first visit is to establish a relationship with this physician. You will have plenty of time to obtain more information from him or her as time goes on.

On my first visit to my current rheumatologist, he wanted new labs and X-rays because he suspected I have yet another RA-related condition going on. I appreciated him telling me that, because I then had time to do my own research before my next visit. Prepare to work with your rheumatologist regarding your disease, and try not to dwell on the negative.

Managing Your RA Is An Ongoing Process

As you move forward after your initial diagnosis, you will deal with well-meaning friends and family who think they know all about your disease and condition.  Get used to the off-hand comments when they tell you to just take an aspirin and your knee will feel better.  Or when someone says they know exactly how you feel because they feel the same way when their old football injury acts up.

No, they don’t.  But it probably won’t help to explain differences to them.  You can try, but don’t expect to get through.  Having rheumatoid arthritis is a royal pain, in general, but fighting the ignorance of some people isn’t worth the effort.

Understand that while doctors know a lot more than we do, they don’t know everything. When the medical community believes that someone will never get out of a wheel chair and that person defies their odds and walks again, you know there must be a higher power at work – along with a tremendous will to prove them wrong.

Don’t ever give in to the gloom and doom people! You may have RA but it doesn’t have to consume your life and your future. Your state of mind has a lot to do with your physical well-being.

Try to stay organized, Ask for help when you need it.  Listen to your rheumatologist, take your meds and live your life.  You can and you will get through this, and I hope you do so with joy.

1 thought on “What’s Next After a Diagnosis of Rheumatoid Arthritis”

  1. Yep yep yep….and thank God that he is still in the healing business. I believe RA is just something we have to live with but knowing Him does make it easier…

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