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“I liken inflammation to anger. Like a beehive that’s been poked,” wrote CreakyJoints (CJ) member @little_hippie_girl1. “When my inflammation levels are high that’s exactly what my body feels like. Something in the body or the environment has poked the immune system, and all the little workers start buzzing around attacking things it thinks are bad.”
Inflammation isn’t just an abstract concept; it plays a big role in your well-being and how you experience each day. For conditions like psoriatic arthritis (PsA) and axial spondyloarthritis (axSpA), ongoing inflammation can be a sign that your medication isn’t working or that you’ve overdone it in some way.
And it can also mean pain — “lots of pain,” writes CJ member @beachboundsue. “Lost days, weeks, gaps in memory, sadness, inadequacy, isolation… body parts competing to outdo one another on the pain scale,” writes fellow patient @canifamiliaris27.
Understanding inflammation and talking about it with your health care provider can guide you in taking crucial steps to manage it effectively. So, let’s explore what inflammation means, why it matters, and how you and your doctor can collaborate to keep it under control.
Understanding Inflammation
Inflammation stands as your body’s built-in response to injury and infection. It reveals itself through five fundamental markers commonly known as the cardinal signs of inflammation: pain, increased warmth, visible redness, swelling, and a decrease in normal function. Inflammation can occur as a short-term (acute) reaction or persist as a long-term (chronic) response.
Inflammatory rheumatic diseases like PsA and axSpA are conditions that cause chronic, long-lasting inflammation in the joints, leading to persistent pain and increased sensitivity to pain.
“If that inflammation is not turned off, it can actually damage parts of the body like the joints in an irreversible way,” says Jeffrey Stark, MD, rheumatologist, and Head of Immunology Medical at UCB. “And, certainly, that is a reason that we want to control inflammation and prevent it before it can lead to that irreversible damage.”
Left uncontrolled, inflammation can lead to frustration from a slew of symptoms, including:
- Anxiety
- Chronic fatigue
- Depression
- Frequent Infections
- Insomnia and “painsomnia”
- Joint pain (called arthralgia)
- Muscle aches and pain (called myalgia)
How Inflammation Affects Daily Life and Quality of Life
If inflammation becomes chronic and is uncontrolled, it can make individuals feel hot, have joint and muscle aches, have anxiety and depression, weight loss and weight gain, and infections. Dealing with inflammation day in and day out can take its emotional and even financial toll on patients.
Here are some of the ways chronic inflammation may affect you.
Pain
Rheumatic diseases involve ongoing inflammation in joints, causing long-lasting pain and increased sensitivity to pain affecting joints, muscles, or other parts of the body. This chronic pain, stemming from inflammation, can become its own condition, affected by various factors like genetics, biology, emotions, and social aspects.
This can make movements painful and reduce overall mobility. Inflammatory conditions can cause stiffness in the joints, making it difficult for individuals to move freely. This stiffness is often more pronounced in the morning or after periods of inactivity.
Daily Living Activities
Depending on the severity and location of inflammation, daily living activities such as walking, climbing stairs, or performing simple tasks can become challenging, resulting in a reduced ability to engage in work, social activities, or hobbies.
“[Inflammation] means dropping my cup, watching coffee splash all over my kitchen — and I can’t be bothered to bend over and clean up. Because the inflammation of my psoriatic spine won’t let me,” writes @psoriaticarthritisguy.
Fatigue
Fatigue can be a sign of ongoing inflammation and chronic pain, making it challenging for individuals to perform daily activities. “Inflammation means having to constantly readjust your days/weeks upon how bad the inflammation is,” writes @44_tlc.
Dealing with fatigue in inflammatory joint disease involves a holistic approach — looking at the big picture — which often starts with figuring out the cause. In addition to inflammation, fatigue can be caused by medication or another co-occurring health condition like anemia, anxiety/depression, cardiovascular disease, fibromyalgia, or sleep issues.
Mood Changes
It is common for patients to experience stress, frustration, or feelings of anxiety or isolation due to the impact of inflammation on their daily lives. There’s even a link between chronic inflammation and depression.
“Some of those inflammatory messengers that circulate through the bodies of people with inflammatory diseases are not only affecting their joints and their skin and their back, but are also circulating through the brain and affect the brain as well,” says Dr. Stark. “That may be an important contributor to depression.”
Sleep
Inflammatory conditions often disrupt sleep patterns, leading to difficulties in falling or staying asleep. This poor sleep quality can exacerbate inflammation and impact daily functioning.
Quality sleep is crucial for regulating the immune system, particularly for individuals with inflammatory arthritis. Dr. Stark emphasizes the importance of adequate sleep, stating, “We know that when people get appropriate sleep and the quality of their sleep is good, that it reduces the levels of hormones like cortisol that can have effects on the immune system.” This close relationship underscores the significance of prioritizing sleep hygiene, including going to bed and waking up at the same time each day and avoiding screen time before bed.
Cognitive Decline
Chronic inflammation has been associated with cognitive decline, difficulties with memory and concentration, and overall cognitive function, all of which can impact work, daily tasks, and quality of life.
“Every autoimmune/chronic disease I’m fighting is part of the inflammation family. It means I’ve got to be on top of my game and brain fog will not allow that,” writes @tmorse895.
Reduced Mobility
Inflammation can cause reduced mobility due to stiff joints and muscles, thereby making movements more difficult. Relying on assistance devices and others for support can detract from one’s independence. “Inflammation means I’m really dependent on my precious husband to care about me and for me,” writes @tmorse895.
Identifying the Inflammation Triggers
For people living with inflammatory rheumatic diseases, it is especially important to avoid triggers of inflammation, which may include the following:
- Diet: “We know that diets rich in antioxidants and omega three fatty acids can help to reduce inflammation,” says Dr. Stark, who recommends The Mediterranean Diet rich in plant-based foods and healthy fats. “Eliminating things from the diet like simple carbohydrates — sugars and white flour-based products — can be helpful for patients as well.”
- Environmental pollutants: Exposure to environmental pollutants, allergens, or toxins can aggravate inflammation, according to a study in Frontiers in Public Health. Heavy metals such as lead, cadmium, or mercury are natural environmental toxins that make their way into air and water and into households, causing inflammation. Allergic reactions can also contribute to inflammation. Identifying and managing allergies can be important for individuals with inflammatory diseases.
- Extreme physical activity: Intense, prolonged exercise without breaks can trigger inflammation. Balancing exercise with adequate rest is key for individuals with inflammatory conditions.
- Infections: In individuals with autoimmune or inflammatory diseases, infections can exacerbate inflammation, making prompt treatment crucial.
- Medications: Skipping or inconsistently taking prescribed medications for managing the inflammatory condition can lead to flare-ups.
- Sleep: Inadequate or poor quality sleep can negatively impact the immune system and increase inflammation, according to a study in Communications Biology, establishing good sleep hygiene is important.
- Stress: Emotional and psychological stress can trigger inflammation. Stress management techniques, such as relaxation exercises like yoga and mindfulness, can be beneficial in reducing stress.
Tips for Talking About Inflammation with Your Doctor
It’s important for people with inflammation to work closely with their health care providers to identify and manage triggers that affect their symptoms. Personalized treatment plans and lifestyle changes can help improve your quality of life and reduce the impact of inflammation on your daily activities. Talking to your doctor about chronic inflammation is a key step in taking care of your health.
“It’s really important to talk about so that folks can get the care they need — whether that’s a treatment for inflammation or it’s a specific treatment for depression that may go along with that inflammatory disease,” says Dr. Stark. “It’s always better to err on the side of oversharing than undersharing.”
Here are some tips for a productive conversation with your doctor.
Prepare in advance
Before the appointment, make notes about your symptoms, their duration, and any patterns you’ve observed. This will help you communicate more effectively with your doctor. Make notes about your symptoms.
Ask for clarification
If there’s something you don’t understand, ask your doctor for clarification. Your doctor is there to help, and clear communication is essential for short- and long-term management of your inflammation.
Ask questions
Don’t hesitate to ask your doctor questions about chronic inflammation, its potential causes, and available treatments. Understanding your condition is crucial for making informed decisions about your health.
Describe your lifestyle
Discuss your diet, exercise routine, sleep patterns, and stress levels. Lifestyle factors can significantly impact chronic inflammation, and your doctor may provide guidance on necessary modifications.
Be open and honest
Pain from chronic inflammation can sometimes lead to unhealthy behaviors like smoking, drinking too much alcohol, or eating too much processed foods. It’s important to be honest with your doctor about your lifestyle so that you can receive the support and best treatment options you need. Share all relevant information about your symptoms, lifestyle, and any factors that may contribute to inflammation. “No one will judge you,” says Dr. Stark, “the goal is to help and encourage you as a patient to make those right choices.”
Bring a current list of medications
Have a list of all the medications, supplements, or vitamins (including dosages) you are currently taking. This ensures that your doctor has a comprehensive view of your health care regimen.
Discuss your medical history
Provide details about your medical history, including any previous diagnoses, treatments, or medications. This information helps your doctor assess the overall context of your health.
Discuss your treatment preferences
If you have preferences regarding treatment options, express them to your doctor. It’s important to have a collaborative discussion about the available choices and their potential benefits and risks.
Keep track of your symptoms
Monitor your health to look for trends in symptoms such as fatigue, pain, and your ability to complete daily tasks. Tracking your symptoms with a digital health app like PatientSpot, which helps you monitor symptoms, treatments, and other health data, can help guide discussions with your doctor.
Share your goals
Clearly communicate your goals for treatment and management. Whether it’s symptom relief, improved daily functioning, or a specific health outcome, sharing your objectives helps align the treatment plan with your expectations.
Think about how you want to feel
Ask yourself: “Is the pain beyond your threshold? Is the inflammation interfering with things that bring you joy? Are you able to do the things you want to do?”
Make a follow-up plan
Establish a follow-up plan with your doctor to monitor progress and make any necessary adjustments to the treatment plan. Regular check-ins ensure that your health is being effectively managed.
Effective communication with your doctor is a partnership. By preparing for your appointments and actively participating in the conversation, you can work together to develop a personalized plan for managing chronic inflammation and improving your overall well-being.
Be a More Proactive Patient with PatientSpot
PatientSpot (formerly ArthritisPower) is an app and website made for people living with chronic conditions. You can track your symptoms and treatments, access support resources relevant to your needs, and choose to participate in research to help advance the understanding of chronic diseases. Learn more and sign up here.
This article was made possible with support from UCB.
Interview with Jeffrey Stark, MD, rheumatologist, and Head of Immunology Medical at UCB.
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