Control the Physical Toll
While joint pain and inflammation are hallmarks of arthritis, the physical toll it takes on your body can vary. Depending on what type of arthritis you have and whether it’s an autoimmune, inflammatory condition, the physical symptoms can affect many parts of your body even beyond your joints, including your skin, eyes, heart or kidneys. Learn more in this episode of the Newly Diagnosed With Arthritis series of the Live Yes! With Arthritis Podcast.
About This Episode
While joint pain and inflammation are the hallmark symptoms of arthritis, the physical toll it takes on your body can vary. Depending on what type of arthritis you have, and whether it’s an autoimmune inflammatory condition, the physical symptoms can affect many parts of your body — beyond your joints — including your skin and eyes or your heart and kidneys.
In this episode of the Newly Diagnosed With Arthritis series of the Live Yes! With Arthritis Podcast, our host, Rebecca Gillett, an arthritis patient and occupational therapist, and rheumatologist and researcher, Dr. Liana Fraenkel, discuss the physical toll different types of arthritis has on the body and, most importantly, how to manage it.
Liana Fraenkel, MD, is director of patient-centered population health research at Berkshire Health Systems and adjunct professor of medicine at Yale University School of Medicine. While Dr. Fraenkel’s clinical expertise is in rheumatology, she has spent more than 50% of her research career conducting patients-oriented studies involving other specialties.
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You’re listening to the Live Yes! With Arthritis podcast, created by the Arthritis Foundation to help people with arthritis — and the people who love them — live their best lives. If you’re dealing with chronic pain, this podcast is for you. You may have arthritis, but it doesn’t have you. Here, learn how you can take control. Our host is Rebecca Gillett, an arthritis patient and occupational therapist, who is joined by others to help you live your Yes.
Thanks for joining us on this Newly Diagnosed With Arthritis podcast series. In this episode, we are gonna discuss managing the physical toll of arthritis. Putting a name to the condition that is causing your pain, stiffness and fatigue can be a relief. But depending on what type of arthritis you have and whether it's an autoimmune inflammatory condition, your symptoms can vary quite a bit. In addition to the joint pain and stiffness, other parts of your body may also be involved, from your skin and eyes to your heart and your kidneys.
I'm excited to have Dr. Liana Fraenkel join us today. Dr. Fraenkel is director of patient-centered population health research at Berkshire Health Systems and adjunct professor of medicine at Yale University School of Medicine. She recently moved to the Berkshires to lead a research program focused on improving population outcomes in this predominantly rural region.
While Dr. Fraenkel's clinical expertise is in rheumatology, she has spent more than 50% of her research career conducting patients-oriented studies involving other specialties. Dr. Fraenkel is a big friend of the Arthritis Foundation and helps with a lot of our patient education opportunities and serves on some advisory committees. So, we're so happy to have you join us to help discuss the physical toll of people with arthritis. Thanks for joining us, Dr. Fraenkel.
Dr. Liana Fraenkel:
Thank you for having me.
Could you tell us a little bit about your research and your practice?
I've been primarily a researcher for the first half of my career when I was full-time at Yale for 20 years. And during that time, spent most of my research really trying to focus in on supporting patients to make the best health care decisions they could. And so, we looked at things like how to communicate risk, how to really understand what patients think about when they're making decisions and how to support shared decision making.
Can you tell us what you've learned from this research and about how newly diagnosed patients should be approaching decisions and how that changes over time when they're working with their health care provider?
I think the most important thing really for patients to understand is it's all about them. It's their right to really have a physician that they can communicate well with. And it's really, really important. Many of our patients have chronic illnesses, and they're gonna have a relationship with their rheumatologist for many years and face many decisions over time.
They need to be 100% comfortable asking all their questions and leaving that visit feeling empowered to carry out whatever treatment plan that they discussed. It really doesn't help anybody if the patient leaves that room and says, "You know what? I'm not so comfortable with that. I'm not gonna go fill that prescription." That is not the goal of care.
I'm currently practicing in a rural area of Massachusetts, you know, that I say that, but not everybody has a choice. Not everybody has really good access to care, and it can be difficult. So, I recognize that for some people, it's really tough to find a rheumatologist. You don't always have a choice. That being said, even if you don't have a choice, you can still really become empowered on how to ask the right questions. The Arthritis Foundation and various other foundations have put out materials to help patients hear from other patients on how to ask questions.
Take the time and prepare for that visit so you're really getting your questions answered. It's gonna make your experience with your illness really much better if you participate in your health care. That's been actually shown in studies. So, it's extremely important to feel comfortable asking questions, getting answers that you need and finding out as much as you need to to make a decision. And people vary.
Many people say, "OK, I need this information from my rheumatologist, but you know something, I need information from my peers as well that I cannot get from my rheumatologist." My current area of research is how to address that need, to help patients learn from their peers and basically address that need for information, which is very different from the scientific information that, as a rheumatologist, I can give, but just as important.
Yeah, I think we all learn so much from lived experiences of other people and can take bits of, and pieces of, what we learn from other people who are going through the same thing. Arthritis is not one disease. There are different types and categories of arthritis.
Arthritis is really a very general term. And our patients come to us with various types of symptoms. Some people have joint pain, and we don't understand why. If we took an X-ray, even if we did an MRI and we did every blood test in the world, we would not find a reason for that joint pain. And that's probably actually the most common symptom.
We call that arthralgia. It's pain in your joint, but we aren't smart enough yet, in 2022, as doctors, to understand why. It doesn't mean we can't talk about how to make you feel better, the things you can do to have less pain, but we can't give you a diagnosis, which is very frustrating for patients, I can tell you.
And then there's a large, large number of people who we say have arthritis, and what we really mean is that they have osteoarthritis. And osteoarthritis, unfortunately, also we don't know as much about as with some of our other conditions. But the good news is that there is a huge amount of research now that's going on in osteoarthritis.
Basically, osteoarthritis is an illness where you have abnormalities in your underlying bone near the joint, typically thinning of your cartilage. If you have very advanced osteoarthritis, the X-rays will typically show what we call bone-on-bone arthritis. And in some patients, there is a component of inflammation, but the inflammation is much, much, much less than things like rheumatoid arthritis or psoriatic arthritis, for example.
Even though it can cause as much pain as rheumatoid arthritis and as much disability — ask anybody with bad knee osteoarthritis or bad hip osteoarthritis, they can be profoundly disabled. It doesn't mean it's less serious, it just falls into a different category of arthritis, and the treatment options are very, very different. We can talk about ways to decrease the impact of the illness and to try to decrease the risk of progression, but we don't have any prescription medications that have been shown to be effective in that yet. It's gonna affect most of us by the time we're of a certain age. So, it's a big problem.
The other types of arthritis that we see in rheumatology, we would put under this huge bucket of inflammatory arthritis, and the prototype would be rheumatoid arthritis. I think that is the term that's familiar to most, but many people that access the Arthritis Foundation website and your materials will have many other conditions, such as psoriatic arthritis or ankylosing spondylitis or reactive arthritis.
Some of our other conditions also have inflammatory arthritis associated with them that, although the pain can be very similar, are typically associated with other symptoms outside of the joint. Rheumatologists are very used to asking patients, "Have you had any eye problems?" Right? We ask about dry eye, which is very common in many of our patients. We ask, "Have you ever had a red and painful eye where you might have had trouble seeing, and you had to see an ophthalmologist?"
Some people have oral ulcers that can be painless or painful, right? Almost every part of your GI symptom, from heartburn to reflux to constipation and diarrhea, really all those can be seen with our different illnesses. Sometimes those symptoms will dictate which treatment options may be best. It's normal if you're confused about all the symptoms you may have, and it's really important to bring them up. Our patients will say to me all the time, "I don't know if this is related, but I thought I should tell you…" and I'm really happy when they say that. So sometimes it's not, and that helps them understand. And sometimes it is, and it it'll affect the treatment choices we make.
Are there other physical impacts specific to osteoarthritis that are common, that people might see throughout their journey?
Besides pain, the most common would be disability due to decreased mobility. People will have, for example, difficulty getting out of a chair. People with especially hip arthritis will tell me, “I can no longer put my socks and shoes on.” I hear a lot about people who have significant disability to hand osteoarthritis. And it's not only that people can't crochet anymore. That's not the only thing we hear.
We hear: "I drop things all the time." Teacups and plates, on the floor, you know? They have much more difficulties with fine motor movements. These are everyday activities that people are having trouble with, with hand osteoarthritis. So, disability is not limited to rheumatoid arthritis for sure.
Yeah, for sure. What are some other things that can be affected physically when someone has rheumatoid arthritis?
One of those biggest problems with rheumatoid arthritis is not joint pain, it's fatigue. Fatigue: It's a big problem for multiple reasons. One, the physical toll. And two, the emotional toll. Fatigue is invisible. And it's hard to explain to people, you know, the inability to go out with your friends 'cause you're just not feeling well enough.
Besides joint pain and swelling, we see the impact of other organ involvements. For example, dry eye and dry mouth, very common. Secondary Sjögren's is very common with many of our inflammatory conditions, but very treatable. The lungs are frequently involved. They can be secondary to the disease itself. Sometimes they can be a problem due to a medication. So, shortness of breath is something. Cough we ask about all the time.
Much rarer, the heart can be involved, but we know that our patients with inflammatory disease are at higher risk for heart disease. It's important to prevent joint damage, but it's also really important to minimize inflammation and decrease your risk of heart disease and stroke.
Sometimes we see Raynaud's. I work in the Northeast, so, you know, having cold hands that change color also can happen. It's uncommon to have any further symptoms of that with Raynaud's in rheumatoid arthritis. If you have scleroderma, which is much, much rarer, the Raynaud's can really be a much bigger problem and associated with ulcers in your fingertips. But with patients with rheumatoid arthritis, we typically can manage that fairly well with nonpharmacologic management, keeping your core super warm, wearing hats and warm boots to prevent heat loss, for example. I think those are the major other symptoms that we see in clinical practice.
Then there's this whole family of inflammatory types of arthritis that are also autoimmune, like psoriatic arthritis and axial spondyloarthritis. Can you dive into that as well?
Those are very different. And the reason is because it, depending on what you have, influences treatment options, and it also influences patients’ symptom burden. So, psoriatic arthritis, for example, where I am, I see patients with really terrible psoriatic skin rashes because we have so few dermatologists here. So, I practice dermatology as a rheumatologist all the time. I never used to see this before, but I can tell you that having really bad psoriasis is extremely uncomfortable for patients. Thank God we have really good treatment options for that.
The key thing is to recognize that not everybody with bad skin disease is gonna have an inflammatory arthritis. Some of the harder decision points: Is this psoriatic arthritis, or is this osteoarthritis? And patients with psoriasis also have an increased risk of gout. So, it shouldn't be surprising to people that sometimes it takes some time to figure out, "I'm having joint pain, but what is it due to? Because if it's due to osteoarthritis, even though I have psoriasis versus inflammatory arthritis versus gout, the treatments for each of those three things are very different."
Ankylosing spondylitis narrows our treatment options because we have fewer options that work once your back is involved. So that's also really important. When we have a patient with psoriatic arthritis, for example, the key difference is: Is your back involved? Then we have to figure out: Is your back involved because you slipped a disc? Is your back involved because you have osteoarthritis? Or is your back involved because you have something like ankylosing spondylitis, which is like rheumatoid arthritis of your spine.
Honestly, sometimes there's certain things that work for all types of back pain, even though we have the specific prescription might be different. Exercising, getting into the pool and swimming, physical therapy are important for everybody, regardless of the amount of inflammation. I don't understand why. I don't pretend to understand why. I'm very honest with my patients about why exercise works. What is the magic? But there is magic. And I think every one of our trials has shown benefit with exercise. Everybody improves to a different degree, but there is some magic associated with exercise.
That's true, you know, the research supporting all of that physical activity being beneficial. You did mention gout, and gout falls into a whole other category of a type of arthritis. I think a lot of people who get a gout diagnosis are extremely surprised to hear that it is a form of arthritis. Can you touch on the physical impacts of gout and enlighten everybody?
Gout is a completely different chapter than everything we just talked about. Ideally, gout would never become a chronic disease. You would have a red, swollen toe; that would be the way most patients present. It would happen once. In most patients, it'll happen again. And by the time it's happened a couple of times, you are already a candidate to be on a medication to prevent it from ever happening again.
We have a way to cure gout. It's one of the things in rheumatology that we can take something in your body and decrease it to a low enough level that will no longer cause this very red, swollen and painful area of your body. We can recommend dietary modifications for this, which help decrease the risk of flares, but we can also decrease your uric acid, which is kind of like a salt-like substance that precipitates in your body. We can get that lower, low enough that it just really doesn't happen anymore.
When you have a red, hot, swollen joint, ask about it because it is very possibly gout. And if it happens again, we have ways to prevent it so that it doesn't become a chronic illness. We wanna stop this before those crystals start laying themselves down and depositing at your joints and becoming a bigger problem. Like your blood pressure or like diabetes. We lower your blood pressure with medication. We can lower your blood sugar with medication. We can also lower your uric acid with medication to prevent the problem.
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A lot of times, patients are hesitant and afraid of the treatment and more afraid of the treatment than they are of the actual disease. Can you talk about that?
Everybody, if they really think about things, is worried about potential side effects of medication. In somebody who is recently or just diagnosed with cancer, they don't worry about the side effects of medication, because all they worry about is getting rid of cancer. Rheumatology is not the same thing.
It's very hard to start a medication that you're scared of because we imagine a lot of risks. But in reality, most people take a medication and never develop any side effects. It's a minority of people who get these side effects. It's kind of overwhelming when you have to think about a lifetime of medication, but we can think about a couple of weeks. We can think about trying this and seeing how we feel, right? And if we see that we're feeling OK on this medication, and then we start to feel better, you might not be as scared of those side effects.
It's also very helpful to hear from other people who've been in exactly the same position, how they got through it and what they are now able to do with their lives now that they're on medication. It's our job to not impart fear, but to definitely impart knowledge. Give them as much support as they need to get started, I think that's our job.
I've had rheumatoid arthritis for over 20 years. When I first was diagnosed, there were maybe two options. Over the last decade, it's really changed. Can you tell us how that factors into your treatment plan when you're starting to figure out which medications to use? What does treat-to-target?
I would want to minimize inflammation. I think we all understand that inflammation is bad for us. It's bad for our heart. It's bad for our brain. We don't wanna walk around with a lot of inflammation. We can feel it in our joints, but it's bad everywhere. And so, we have medications now that allow us to monitor how you're doing and carefully measure how you're doing over time to minimize the inflammation.
In rheumatoid arthritis, we monitor inflammation, we monitor and ask different questions to measure disease activity so that we make sure we try to end up with as lowest levels of inflammation as possible. And that's what we think about in terms of treat-to-target. Treat-to-target is a way to keep us to task. We should be measuring this just like we do for our other chronic conditions.
The initial treatment of choice for most of my patients is methotrexate. The data show that most people will get better with methotrexate. There are a lot of options, but the choices change depending on availability and what's going on with the world right now. And I'm sure there'll be newer options coming out as well.
The other thing that really dramatically changed the way that many people practice is the new black box warning for the JAK inhibitors. That requires a little bit of a different conversation now, given the new safety stickers associated with JAK inhibitors. And I think people might view those differently, but at the minimum, in terms of informing patients of those risks, is different than it was last year.
Yeah. It's a lot to try to take in, the different classes of drugs, when you're newly diagnosed. And that's why that whole shared decision-making process with your doctor is so important. Is there anything that you suggest to patients when they are newly or recently diagnosed?
You should say, "What are my choices?" That's really important. Because just saying, "What are of my choices?" will open up the discussion to a shared decision-making conversation. Otherwise, you may be in the position where your physician will say, "I recommend this," and you'll never even know about your other choices. Now, sometimes there really might be one really clear, superior choice, because some biologics cannot be used in patients with other conditions. It's important to know that sometimes there is a strong recommendation.
All you have to say is, "What are my choices? What are all the options out there?" I draw out the different classes. It's not that difficult a conversation. When you talk about: These are the different buckets. You don't have to go through all the TNF inhibitors, right? These are the different buckets. This is what's common across all of them, which is the risk of infection. And these are the unique things that we worry about each of them. And I think breaking them down into those very high-level kind of concepts helps people start differentiating between the different classes.
And I think it's important for people to understand what exactly these drugs do when you have inflammatory arthritis. Is it stopping progression? Is it decreasing inflammation? How is it doing it? Why am I susceptible to more illness? Can you touch on that?
First of all, we're not 100% sure specifically which mechanism is right for which patient. But we will know that one day, and we're all very excited to one day be able to draw your blood and then know which medication would be best for you. It would also enable us not to expose people to medications they didn't need or wouldn't respond to. So, that is gonna happen one day.
The medications, in general, though, all work by lowering the levels of inflammation. And what we try to do is we try to regulate the immune system. With people with an autoimmune disease like rheumatoid arthritis, the immune system is not working normally; it's not protecting you normally. It's revved way up, and it's on autopilot. And what we try to do with these medications is: We try to bring it down to a normal level where it's not causing way too much inflammation in your body and heart, and harm to your heart and harm to your eyes and harm to your lungs.
Sometimes we overshoot. If you have other risk factors for infection, that becomes more problematic. And somebody who is young, middle-aged, without any other medical illnesses, they're not gonna be at a much higher risk of infection, right? And somebody who's had a bout of pneumonia three months ago and is much older and has diabetes and other risks, we’re much more concerned about that patient having a higher risk of infection. We should also recognize that people are at different risks.
Another term that comes up when you have arthritis that you'll see and hear people talk about is having a flare. Can you explain what that means?
It means very different things for different people. But I think in general, it means, "I am not at my baseline." So, a baseline could be, "I feel absolutely normal. I don't know I have arthritis anymore." We would call that remission. And that is the best when you hear that from your patients: "I forgot that I had rheumatoid arthritis." I literally dance out of the room when I hear that. That is the best.
Other patients will have a very good quality of life, but they'll be a little bit or somewhat fatigued. They will have intermittent joint pain, especially after they do a lot of activity with their hands, for example. They will have low-level symptoms and they live with that low level of symptoms.
What happens when they tell you they flare is, whatever baseline they're at, they're no longer at that baseline, right? They don't feel well. They have more joint pain or more joint swelling, or they have more fatigue. Some people will flare, you know, one finger is bothering them, and it's a flare for them because before that they were in remission. And for other people, the flare is, you know: “I just feel profoundly fatigued and everything hurts.” It can be very variable.
What kinds of things can they focus on at the onset of a diagnosis to better manage their physical symptoms of arthritis?
I think first of all, to recognize, one: It is overwhelming. It is overwhelming to get this diagnosis. That is normal and it will get better. It is really important, depending on what disease that you've been diagnosed with, to get on the right medication as early as possible to minimize the chance of any long-term damage. If you come into the emergency room and you're diagnosed with lupus, and we detect kidney damage, you need treatment now. Ask the questions so that we can get you the best treatment.
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In this segment of the podcast, we like to pose a question on social media or get advice from our listeners. And so we asked: What physical symptoms of arthritis were you most surprised about? I'll share some of those comments and then have you react to some of them, Dr. Fraenkel.
How much just standing can hurt. Someone said, a very, very common theme was, exhaustion and the fatigue. No matter how much they slept, there's fatigue, fatigue, fatigue, as you mentioned earlier. “I couldn't lift my arms enough to brush my hair or my teeth.” Now that's one that you hear a lot from people and can be super frustrating because it affects your ability to take care of your yourself.
Those are common. We talked a little bit about fatigue at the beginning. The important thing about fatigue is to recognize that sometimes it's due to the rheumatoid arthritis, but also to consider other things. It’s so important to rule out other conditions that can cause fatigue like anemia. Sometimes people feel much better on different diets. Lack of exercise. Poor sleep due to other reasons besides pain; we have to think about sleep apnea just like we do if you don't have arthritis. Hypothyroidism can cause fatigue, and it's more common in patients who have autoimmune disease.
Stress management. Work-life balance. There are some people who will just do a lot better by restructuring their day and accepting how many hours they can work in a day. I think for some people who are very type A personality, accepting that is difficult, but if they do, it's a completely different world if they work 9:00 to 3:00 instead of 9:00 to 9:00. It's important for patients to feel OK taking the time to eat well and sleep well and exercise. That is part of your treatment plan.
A couple other comments that people made was the extreme swelling that appeared around a joint during a flare, being surprised by how extreme it was, that you can get pericarditis, lung issues. Somebody said, "Hoarseness: It was my first symptom, and I had no idea that RA could affect the voice box." Somebody mentioned specifically pleurisy and costochondritis. How common are some of these things, and is it good to know this ahead of time so you can identify and help improve your body awareness?
I think that depends on the person. I personally wouldn't wanna know about all these things. I think it's really important to know about the things that you can prevent. Right? So, it's very important to know that rheumatoid arthritis is a risk for heart disease. I think as long as patients know to ask: Could this be due to my rheumatoid arthritis? Even if they're seeing their primary care doctor. And for the rheumatologist to open the window and say, when they're first making the diagnosis: “By the way, this doesn't only involve your joints. If you develop any other symptom, it's really important that I know about it. It doesn't only involve your joints, other things can be involved.”
Hoarseness: There are joints in your voice box. So that's interesting that somebody brought that up. That is not common but can be seen. It's important just to ask: Could this be related? Don't feel embarrassed to ask those questions.
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I appreciate all of your knowledge and expertise that you're sharing with our newly diagnosed listeners, Dr. Fraenkel. Before we go, to wrap up the episode, can you share with us what your top three takeaways are for people who are newly diagnosed with arthritis, who are trying to cope with the physical aspects of living with arthritis?
First thing is: There are a lot of very effective treatments. This is the most overwhelming time of your life. Things are gonna get much better. It's important to ask about what your disease may involve and to make sure that you have an open relationship with your rheumatologist to get information. That's really important.
The other very important takeaway is to think about not only pharmacologic management, but non-pharmacologic management. All patients wanna know about diets. Eating well is really, really important. There are things that rheumatologists can talk to you about your diet, not necessarily as a strong anti-inflammatory, but ways to be healthy. Exercising is really important. There are strong data that it’s important for anybody regardless of the type of arthritis they're diagnosed with. Sleep is really important.
And thinking about your fitness level and not your weight is the key, right? You wanna think about maximizing your fitness and minimizing stress, and not focusing on weight. And depending on your specific type of arthritis, it is more or less important to think about prescription medication. For osteoarthritis, less important in 2022; maybe one day differently. For things like rheumatoid arthritis, really important. And know that we have very effective ways to significantly decrease any risk that this disease will have in the long term.
Thank you so much for that wealth of information, Dr. Fraenkel. I just appreciate you taking the time to educate and empower us to take control of our arthritis. Thanks for joining me.
I'm wishing you all very well. Take good care.
Thank you. I just wanna remind our listeners, if you haven't listened to the other episodes in this four-part series, there is an episode that discusses the emotional toll of arthritis; words of wisdom from other patients; and who you need to build on your health care team when you have arthritis. So, make sure you check those out. You can also check out more information on our website at https://www.arthritis.org. Thanks for joining us.
Thank you to Amgen, our sponsor of this episode — Live Well With Arthritis: Control the Physical Toll — which is part of a 4-part Newly Diagnosed With Arthritis series. The Live Yes! With Arthritis podcast is independently produced by the Arthritis Foundation, to help people living with arthritis and chronic pain live their best life. People like you. For a transcript and show notes, go to https://www.arthritis.org/liveyes/podcast. Subscribe and rate us wherever you get your podcasts. And stay in touch!