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Things Patients Want Rheumatologists to Know

I recently read an interesting article on Creaky Joints’ website: “20 Things Arthritis Patients Wish Rheumatologists Knew.” For the article, Creaky Joints asked several people with arthritis about what they wish their rheumatologists would do differently. The article’s “20 things” is a list that touches on many issues regarding RA and the patient-rheumatologist relationship: exercise, bedside manner, nutrition, mental health, and prescription medications–to name several.

Some tips for rheumatologists from patients

The following is a shortened version of the original list, with me choosing five of the list items to discuss.

1. Don’t rush my appointment.

Having a rheumatologist who is patient and takes time to actually listen to you at each appointment (at anytime, really!) is crucial. RA is a complex and complicated disease that affects each person differently, which means there are usually a lot of questions and issues that come up when you have this illness. My rheumatologist is incredibly patient with me, which I appreciate tremendously. I know that he is constantly busy and rushed and overworked, yet he always finds time to sit patiently with me during each appointment and answer all of my questions. If your doctor can’t or won’t do this, then maybe it’s time to find a new one who will.

2. Tell me to keep a journal before I come in.

I think writing in a journal and keeping track of my symptoms and medications and anything else that pertains to my RA and health is a great idea. The main problem I have with this, however, is remembering to do it, and to do it regularly. And actually, now as I stop to think of it, I don’t think my rheumatologist and I have ever discussed me keeping an RA or health journal as part of my treatment. Is it something that would be beneficial to him and to help him with treating me? That’s a good question that I should ask at my next appointment, I think.

3. Give me some realistic diet and exercise advice.

I know I’m overweight and that losing weight would greatly help my RA and overall health. Despite recognizing this, it’s really hard to stick to a healthy diet and exercise regularly when you have RA. I mean, REALLY HARD. Why? The simple answer is that dealing with pain and sickness every day doesn’t really put a person in the mood to exercise or eat healthy. When in pain and not feeling well, our natural instinct is to lie down and rest and basically turn into couch potatoes. And, when I’m not feeling well, guess what kinds of food I crave? Yep–carbs, carbs, carbs! Comfort food. Comfort anything.

If rheumatologists aren’t already aware of these challenges (they should be!), then they need to hear from patients what it’s really like for those of us with RA who are genuinely trying to develop good nutrition and exercise habits. If they can’t offer helpful advice and support, then they need to refer us to someone who can, such as a nutritionist, an integrative medicine doctor, or a weight management clinic.

4. Don’t judge me.

Finding a rheumatologist who is non-judgmental, as well as empathetic and understanding, is really important. The first rheumatologist I went to when I was first diagnosed with RA was basically the opposite of my current doctor. He was extremely judgmental, condescending, arrogant, impatient, and not supportive. Unfortunately, it took me 10 years to finally “fire” him and move onto someone who better fit my needs. And that person I moved onto, which is my current rheumatologist, has turned out to be a wonderful fit. I never feel judged or condescended to when I talk to him or ask him questions. If you’re feeling unfairly judged or criticized by your doctor, know that it’s your right to “fire” him/her and find someone who respects you as a patient and a person.

5. Do a mental health check-up.

Taking care of your mental health, in addition to your RA and physical health, is probably something that many people forget to do. Or, they don’t know how to do it. I’m willing to bet, though, that the majority of people who have RA also struggle with mental health issues, such as depression and anxiety. Having depression and anxiety symptoms is completely understandable if you also live with chronic pain and chronic illness. It’s a reality for most of us, I’d say.

I would also argue that RA is even harder to cope with mentally and emotionally rather than physically sometimes. If you know firsthand how severe and bone-aching terrible the pain of RA can be, you might not believe that statement. But living with RA can be a deeply devastating, traumatic, and anxiety-filled experience. And because of this, it’s crucial for RA patients to understand that their mental health needs are important and to know how to get help and support if needed. I think it’s a great idea for rheumatologists to check in with their patients about their mental health and how they’re doing. A person’s mental health can greatly affect their RA and vice versa and it should be a part of one’s treatment plan.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • DebC
    2 weeks ago

    Omgosh I love this site! Finally, real people like me! The article about do I have it or not. Sero negaitve. That is my story. I may just stay and read everyones posts to see what I can learn. Thinking of trying to get into Mayo Clinic, Rochester because I don’t believe my (wonderful) Dr knows what to do. Any advice would be helpful.

  • Connie Rifenburg
    3 weeks ago

    I recently went through a RA dr change due to exactly what you speak of in your article. Thank you for validating my feelings. I left my last RA dr’s office appt. in tears where she called me obese and said I didn’t need prednisone becaue at my size, I was producing enough, she accused me of trying to be the dr when I was having trouble following her reduction of prednisone on her exact timeframe and told me that if my primary dr (who works in conjunction w/other dr), thinks I needed something to replace the prednisone while reducing it, then maybe HE should take over my RA, she asked if I had had my teeth fixed yet (I need them pulled and a denture) and when I said no, that it was very expensive, she shook her head and said “are you going to follow anything I tell you to do?” And that was only part of my last appointment. It continued in that manner.

    I had a different RA dr. for the first 15 yrs of my RA treatment and have had no other doctors treating me until I changed to this dr. I only did this because the new dr. was quite a bit closer than the “old” dr. and I don’t drive anymore due to Glaucoma and Macular Deg. so I pay for Uber.

    I have never had a dr approach me the way she did on our first appt. she told me bluntly that she did not believe in narcotics for pain and that she would not renew my prescription, that I would have to find a pain clinic. She said that the amount of prednisone I was on was NOT indicated under the “guidelines” of treatment for RA and that she wanted me off it within the month. I explained that I had just had a major flare and had to go up to 40mg/day (per dr.) to allow me to even participate in life, but that I was on my way down and was now at 25mg/day with a schedule to go down as fast as I could stand it.
    She said that my doctor should never had me on that and that I should know that she will never prescribe that much prednisone in the future!

    She said that I was on Orencia and that if it was working I wouldn’t need prednisone. She treated me as if I didn’t know my own body and that my last dr had been a quack. I tried to put it down as a different style of dr. than I was used to but rather than sitting down and meeting me, asking questions, etc. she stood the whole time and didn’t touch me, only listened to my heart/lungs. She “finished” the appt. within 15 min. and was standing at the door while I was still trying to ask questions.

    The next appt (3 months later) was the appt I referred to above where I left in tears. Although I was quite “wounded” from her treatment, I did begin to raise my voice in response to her attacks, and then found myself apologizing to her and the staff who I’m sure heard me raise my voice and hers back at me before I went to the ladies room to cry.

    I knew when I left that I would never go back to her, but my problem was that I needed an RA dr right away to keep signing for my Orenscia.

    To try to shorten this story, I found an associate in the same office who agreed to take over my care temporarily until he and I had a chance to talk in 3 months. I see him this month. The problem is, he works out of a different office and it is even further than my original dr. office. So my reason for moving drs. is back to square 1.

    Your article was so representative of what I had just experienced that I wanted to let you know that this really happens to people and their doctors. I intend to print your list off and take it into my new doctor as a starting point to our relationship. I’m not someone to be belittled or spoken to in such a harsh tone when I am trying to comply with all directions (why wouldn’t I comply was my biggest question) Why would I willingly defy a doctor I was paying to help me? It just didn’t make sense.

    All I can imagine was there was some sort of dislike toward me after reviewing my records sent from my orig dr. because her comments seemed to be that my last dr. was not treating me in a recognized RA regime. And she was going to change that!

    Thanks for taking the time to write your article and also letting me vent on this subject. It certainly hit the spot as you can tell.
    Sincerely
    Connie

  • Angela Lundberg author
    3 weeks ago

    Thank you for your comment, Connie. Wow, I am so sorry to hear about what you’ve been going through with your doctor. Incredible. You absolutely have the right to stand up for yourself and not be disrespected as a patient and person. I hope things will improve for you ASAP! Hang in there. 🙂

  • Connie Rifenburg
    3 weeks ago

    Thanks Angela. I’m sure others here know that there can sometimes be conflicts between doctors that are caring for the many different areas of our disease. I try to keep all my drs in the same medical plan because all my records are accessible by each doctor and by me via a computer portal.

    I have a Primary dr. who I am so happy with and he tries to keep up-to-date with all the other drs I’m seeing and what treatments they are recommending such as a Digestive Dr treating for serious gastric issues due to long term meds., Eye Drs. handling my Glaucoma and Macular Degeneration with monthly injections now in both eyes as the diseases progress plus a separate Eye dr. for glasses as I need new prescriptions regularly. I see a Sleep dr who works on my sleep apnea, a Neurologist for brain issues, my RA dr. and the separate Infusion clinic w/monthly orencia.

    When the new RA dr refused to renew my pain meds, my primary dr offered to take over that area so I didn’t have to add another dr and clinic and he and I have worked on reducing my mg from 15 to 5mg as he has added some other more nerve related pain meds since this seems to be a new neuopathy RA pain. He has also taken over giving me any injections into my joints directly as needed. I have seen two different osteo surgeons with two joint replacements to be considered soon. The OA has almost surpassed the RA in the past two years and is deforming many of my smaller joints in feet and hands and my spine. Not to mention the teeth issue caused by the steroids and other meds causing gum disease and loss of teeth. The dental issues are wildly expensive too, but will soon have to be addressed.

    I guess my point is, I need to have my doctors be willing to work with as many as 6 or 7 other dr. all who are specialist and are treating a specific area, yet I am ONE person. A whole person that needs to be looked at in that way.

    I feel lucky to have a primary dr who is very understanding and willing to try to coordinate as much as he can when possible. I’m hoping my new RA dr. will be more open to including me in my care and not just TELLING me what I will do because she has an “approved regime” that she follows…not treating an individual person.

    I am probably stating the woes of so many of us with RA/RD. We are a walking-talking medical dictionary of associated diseases. How do others coordinate their specialists? Do they work together well or do they contradict each other’s treatments?

    I’m sorry for carrying on so, but this subject has become so involved in my life that on days when I have the worst of my pain or am too tired to think… I just can’t handle all the coordination this disease requires. Are there other single people dealing with all this – then add a retiree’s pension to cover it all. (and this is where the anxiety and depression kicks in)

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