Many people living with chronic illnesses such as rheumatoid arthritis (RA) know what it is like to live with pain. This presentation provides a history of the scientific and medical understanding of pain and its psychological impact. It also offers strategies for managing and coping with pain.
Describing and understanding pain has always been difficult – even controversial. The Greek philosopher Aristotle believed that pain was strictly an emotional event, but it later became accepted that pain had a physical element. It wasn’t until the 1990s that the medical and scientific community agreed on a definition: “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage..”1
It is important to keep in mind that “pain” refers not only to that which hurts, but also to any unpleasant sensation. This includes a lack of sensation (such as numbness) and stiffness, which is quite common among those living with RA. Other examples are feelings of fullness, heaviness or swelling. Those sensations may not be causing significant discomfort at the moment, but they are a signal that there is a process going on within the body that may need to be examined.
The acceptance of the integrative definition of pain as having both a physical and an emotional component has provided us with a much broader appreciation of how pain affects our lives. Pain is a personal experience, and how one responds to it is very individualized.
Progress is being made in the field of pain management to better understand and treat chronic pain. A promising area is a technique called brain mapping. Pictures of the brain can reveal a pattern of activity that signals whether someone is feeling pain as well as how much it hurts. These pictures can also help to identify the exact location of the pain. These images provide information about the neural pathways (the system that connects one part of the nervous system with another).
This type of specific information has facilitated the research and development of medicine for pain, which has led to the availability of new treatments. Since the 1980s, a number of new formulations of medications have become available which have provided more treatment options.
As the body of knowledge about pain expands, the need to evaluate the impact on patient outcomes becomes essential. Giving patients more ways to describe how the pain affects them (physically and emotionally), empowers them. It can help medical teams understand how patients are affected and help guide treatment options.
Pain can be described as a disease of reporting. It cannot be overstated that you need to discuss your health status and what is influencing it with your doctor. A good conversation about it means that your doctor hears you, and that you hear and understand the answer back. With pain, the earlier treatment can begin, the better outcomes you may have. But to begin treatment, you must first be able to describe to your doctor what you are experiencing, including any possible side effects of the pain, such as an interrupted sleep, increased stress or anxiety.
Pain can be “acute” (sudden, temporary and often sharp) or “chronic” (continuous or continual), and is defined by the length of time in which it is experienced. For example, pain resulting from a recent injury or surgery is considered acute, while pain lasting for more than three months is considered chronic. It is important to pay attention to the timing. In certain situations (such as after major surgery), it may be normal to feel pain for three months. If you continue to experience pain beyond that time frame, it may require a further discussion with your healthcare provider.
In order to provide pain relief, it is essential to understand the cause of the pain. There are two broad categories of pain:
These causes can sometimes overlap and can make the true cause unclear.
People with chronic illnesses may develop pain from a number of common and, possibly, unrelated causes. A term used to define this kind of pain is “referred pain” – where a condition in one part of the body causes pain in other parts of the body. One common example is when someone with RA affecting the hip reports pain in their groin or thigh. While the pain starts in their hip, the feeling of the pain travels.
To begin a treatment plan, your medical team will do a clinical assessment with the aim of understanding the source of the pain and how it is affecting you. You will be asked to:
Any pain management treatment plan must be based on creating realistic goals. For many people with chronic pain, the ultimate goal is to help improve function. But there is no single “best answer” for to how to determine or achieve such goals. It is essential that you communicate with your healthcare team about your symptoms and ask questions! The treatment plan you and your healthcare team design will likely include a combination of approaches to relieving pain from one or more of the “domains” listed below.
There are three main types or “domains” of management for treating pain.
A 2014 study using data on RA flares from the BRASS Registry2 looked at how people managed their RA flares. Medication was the most common approach. At the same time, about half of the patients tried nonpharmacologic treatments and lifestyle changes.
Prescribing medications to treat pain has historically been a common part of the pain management treatment plan. When someone is experiencing a flare, it is often an opportunity to examine the medications they are using, and whether they are still working. Though frustrating, sometimes a medication stops working. This is either because the illness has advanced to a stage at which the medication is no longer effective, or because the patient has developed a tolerance to that drug. In this situation a medication change or dose adjustment may be required.
Often, patients with chronic illnesses are taking a variety of different medications, including some that help with managing the symptoms that accompany their disease. Of these symptoms, pain is one that can be very common. One type of pain medication frequently prescribed is an opioid (narcotic). Examples of this type of medication are oxycodone, hydrocodone and tramadol. They are usually prescribed for moderate to severe pain.
The use of opioid medications to treat many chronic pain conditions has been recently re-examined. Studies done within the last two years have suggested that long-term use of opioid therapy for non-cancer pain is not effective to relieve pain.3 Recommendations made by such organizations as the Centers for Disease Control (CDC) (2016) has raised awareness that there is a serious risk associated with the use of opioids in treating non-cancer-related chronic pain conditions.
Most people with rheumatoid arthritis, for example, should not have opioid therapy treatment to relieve pain. The long-term use of opioids to treat chronic pain has been challenged, as it is associated with increased risk for developing dependence, osteoporosis, fractures and many other risks. There are many non-opioid pain medications that can be used to manage your pain as well. These include antidepressants, antiseizure medications and NSAIDs. The use of a multimodal analgesic treatment plan is now widely accepted to treat pain. You should review the different pain medication options, including the risks and benefits of each therapy with your doctor.
It is important to have patience when trying to manage pain by way of the pharmacologic domain. Not all medications work right away, and the medical team typically wants to gauge your response before they make adjustments to your medication protocol. You may want to examine the schedule of when you take your medications. Maybe it would be better to take medication in the morning, instead of in the evening. Consider changing the dose or frequency, or combining two medications that work well together to smooth over the presence of pain.
Recently, New York State has approved the use of medical marijuana to treat chronic pain associated with certain chronic illnesses. Not all physicians are able to prescribe medical marijuana. A special certification is required. There are some considerations, such as data on adverse effects, dosing limits, cost and legal uncertainties. However, it is a treatment option that is being used with some reported success in alleviating pain, and it might be an option to consider.
Lifestyle and Managing the Emotional Impact of RA
It is important to acknowledge that being diagnosed with RA or any chronic illness has an emotional component. The diagnosis itself may trigger strong emotions, such as feeling vulnerable, overwhelmed, sad and frightened. These feelings may have a noticeable impact on you, such as making it difficult to concentrate or causing you to isolate yourself from others.
Chronic illness and pain typically are associated with a sense of loss. Loss can be defined as a life event or change that may result in someone feeling deprived of something valuable. This could be the loss of the ability to engage in activities that are meaningful to you, loss of relationships with others or the loss of a healthy sense of self.
Dealing with loss is a highly personal and variable process. The process of developing healthier coping strategies requires support, time and a commitment to oneself. Setting realistic, achievable goals is key to a healthier you. As part of the coping process, you may want to consider participating in a support group for people with RA, or meeting with a social worker or other mental health professional for individual counseling.
There is growing evidence that support groups are helpful to people living with RA and other chronic conditions. The group setting – a community of people sharing similar experiences – reinforces that you are not dealing with your illness alone. Cognitive behavioral therapy (CBT) has also been shown to be effective for many people with RA. CBT, a short-term therapy, is based on the theory that we have the power to change our thoughts, which can help us to shift our emotional reactions. Understanding one’s emotional self can play an important role in helping a person deal with chronic pain.
Managing the Fatigue Associated With RA
Fatigue is the most commonly reported symptom of people with RA, with 88% to 98% of RA patients having reported significant fatigue as part of their illness.4 The level of fatigue can be related to the amount of pain you are experiencing. Social stress and anxiety may also play a part in this experience, as well as anemia, and nutritional deficiencies. Fatigue can affect a person’s self-efficacy (the ability to manage situations or tasks related to the illness).
Some ways to reduce the impact of fatigue include pacing yourself, and balancing activity with rest. Sleep hygiene is an area of research that involves recommendations for better sleep. One of the main pieces of advice is to avoid napping. For someone with RA, this may be impossible to do, so nap if you need to. However, establishing a routine with a sleep/wake pattern may be helpful. For example, if you wake up at 8 am, then nap from 12 pm to 2 pm.
Don’t exercise just before going to bed, because this causes your endorphins (hormones that reduce your sensitivity to pain), to be too high. This can make it difficult to fall asleep. Avoid caffeine in the afternoons, and try not to eat a meal that is too heavy, as digestion may interfere with sleep.
Developing sleep rituals that work for you may be helpful. Pay attention to the temperature and the lighting in your bedroom. Experiment with what works for you. Don’t forget to consider your bed and pillows – these are comfort agents. If nothing else helps improve your ability to sleep, changing these items may be helpful.
Your diet can also play an important role. For example, iron or B-12 deficiencies may cause some types of anemia, which in turn make you more tired. When reporting fatigue to your rheumatologist, you should make sure that you mention all of the medications you take, even over-the-counter medications. Your healthcare provider might want to explore the cause of your fatigue related to all of these issues.
Many people with RA find gentle yoga or stretching to be helpful. While it may be difficult to motivate yourself when you are feeling fatigued and stiff, these activities can have a positive impact.
Self-management is defined as your ability to manage the treatment, physical and emotional symptoms and lifestyle changes that are part of living with a chronic disease.5 An adaptive approach is being a proactive partner in your healthcare, and developing strategies for coping.
There is a growing body of evidence showing that the use of some types of complementary and alternative therapies are effective in reducing pain and improving function. Integrating them into a plan of care should be considered whenever possible.
Some complementary therapies focus on the mind-body connection and include:
Of course, exercise is often mentioned to help manage chronic medical conditions. When living with RA there are special considerations, such as flares and stiffness. However, if you can manage it, exercise can be helpful. You can try something low-impact to start, in particular, swimming and water exercises. This is where an ongoing conversation with your medical team is important.
Although we know that most forms of arthritis cannot be cured, learning how to reduce pain, maintain mobility and manage the symptoms is an achievable goal. Ultimately, you are the expert on your RA. Perhaps the information and strategies described above will be helpful to you in thinking about and communicating about your pain in a different way. In the end, the goal is to achieve better self-management of your pain.
Barbara Wukovits, RN, BSN, BC
Director of Pain Services
Department of Anesthesiology, Critical Care & Pain Management