National Pain Awareness Month is observed in September every year. This is a time when pain experts and activists from all around get together to raise awareness about concerns connected to chronic pain that directly impacts millions of people in the United States. Though pain is something that all humans experience in one form or another, this blog will narrow in on what lupus chronic pain can feel like and its potential sources.
Pain is the body’s warning signal that something is not right.
When painful symptoms first arise, patients and their healthcare team try to work together to see if they can identify and address the underlying cause of chronic pain. Typically, pain is considered chronic when it persists for six months or more. But for some patients, chronic pain can last for years or even a lifetime. There are many possible causes for long-term pain, including injuries to nerves, joints, or tissues or underlying disorders or diseases, like fibromyalgia or arthritis.
The type of pain experienced can be as varied as the reasons behind it. Pain can be felt as burning, stabbing, aching, pulsing, and many other sensations. These sensations can occur anywhere in the body and range from mild to severe, intermittent to continuous, and distracting to disabling. Over time, chronic pain can become a disease in and of itself, creating measurable changes and decline in the body and its function, that can deeply impact a person's physical and mental health.
Because each person with pain is so unique, it can be challenging to manage pain effectively. Not everyone with lupus will experience the same level of pain, and not everyone will have pain that lasts for the same amount of time. Some might have mild pain that comes and goes, while others have severe pain almost every day. Lupus symptoms can often fluctuate and be unpredictable, even from one flare to the next in the same person. So there should be no surprise that there is no one-size-fits-all approach to treatment, and pain management is usually aimed at reducing pain, not eliminating it.
This can be difficult to navigate when it is at the forefront of one's thoughts, and it is easy to become resentful of the painful parts that seem to be working against you. Working alongside healthcare providers, most people with pain will need to engage in a process of trial and error to find a treatment plan that works for them. Typically, successful pain management requires finding a combination of multidisciplinary, multimodal therapies that reduce pain enough to improve quality of life and increase function.
“One important suggestion I have for anyone living with chronic pain is to stop making pain your enemy…” - Dr. Stephen F. Grinstead, Freedom from Suffering
The Cause of Lupus Pain:
Most doctors believe that the primary pain catalyst in lupus is caused by systemic (whole-body) inflammation. As the Lupus Foundation of America states, lupus causes a robust activation of B cells (types of white blood cells in the immune system) and they produce several types of antibodies, all of which cause tissue damage in different parts of the body.
This inflammatory process and the possible tissue damage associated with it causes chronic pain. Additionally, chronic lupus pain can affect the nervous system, resulting in “neuroinflammation” that causes more pain. Because neuroinflammation can alter regions of the brain, impact the spinal cord, and damage nerves, it can trigger even more localized inflammatory responses, like swelling, rashes, tenderness, and increased pain in different parts of the body, and cause abnormally heightened sensitivity to pain or touch.
The Uninvited Painful Party Guests:
As with many other auto-immune illnesses, lupus doesn’t often like to party alone. Many people experience an onset of other uninvited party guests (we call them overlap diseases) that may include rheumatoid arthritis, fibromyalgia, and mixed connective tissue disease…all of which can cause, you guessed it…pain.
Rheumatoid arthritis is a chronic inflammatory disorder that can affect more than just your joints. In some people, the condition can damage the skin, eyes, lungs, heart, and blood vessels. An autoimmune disorder, rheumatoid arthritis occurs when your immune system mistakenly attacks your own body's tissues. Unlike the wear-and-tear damage of regular osteoarthritis, rheumatoid arthritis affects the lining of your joints, causing a painful swelling that can eventually result in bone erosion and joint deformity. The inflammation associated with rheumatoid arthritis can damage other parts of the body as well. While new types of medications have improved treatment options dramatically, severe rheumatoid arthritis can still cause physical disabilities. For more information on RA click here.
*Some patients are told that they do not have RA but rather “rhupus” which is considered to feature the presence of symptoms of both SLE and rheumatoid arthritis (RA) in the same patient where the arthritis is rheumatoid-like, and organ damage is mild.
Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory, and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and non-painful signals. Symptoms often begin after an event, such as physical trauma, surgery, infection, or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event. Women are more likely to develop fibromyalgia than men. While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation, and stress-reduction measures also may help. For more information on fibromyalgia click here:
Mixed Connective Tissue Disease or (MCTD) has signs and symptoms of a combination of disorders — primarily lupus, scleroderma, and polymyositis. Many people with this uncommon disease also have Sjogren's syndrome. For this reason, MCTD is sometimes called an overlap disease. In mixed connective tissue disease, the symptoms of the separate diseases usually don't appear all at once. Instead, they tend to occur over several years, which can complicate diagnosis. Early signs and symptoms often involve the hands. Fingers might get puffy, and the fingertips become white and numb, often in response to cold exposure. In later stages, some organs — such as the lungs, heart and kidneys — can be affected. There's no cure for mixed connective tissue disease. Treatment depends on how severe the disease is and the organs involved. For more information on MCTD click here.
Other types of lupus overlap conditions that may cause pain include:
Chronic Migraines: Migraines are one of several headache disorders affecting forty-two million Americans. Migraine attacks typically start during adolescence or in the twenties, but people can and do experience onsets of migraines at any stage of life. For lupus patients, migraines and tension headaches are the most common types of headaches experienced. In fact, a recent medical journal shows that migraine is more common in lupus than the general public, occurring in up to one-third of SLE patients. They can be incredibly painful and debilitating.
Sjogren's Disease: Sjogren's (SHOW-grins) Disease is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth. The condition often accompanies other immune system disorders, such as rheumatoid arthritis and lupus. In Sjogren's Disease, the mucous membranes and moisture-secreting glands of your eyes and mouth are affected— resulting in decreased tears and saliva that can cause pain and irritation in the eyes.
Raynaud's (ray-NOSE) Disease: This causes some areas of your body — such as your fingers and toes — to feel numb and cold in response to cold temperatures or stress. In Raynaud's disease, smaller arteries that supply blood to your skin become narrow, limiting blood flow to affected areas (vasospasm), which brings on stinging, burning, and sometimes throbbing pain to the extremities.
Peripheral neuropathy: Lupus can damage nerves in the body by causing inflammation of the nerves or the tissue around the nerves. This nerve damage is sometimes called peripheral neuropathy. The main symptoms are numbness, tingling, and being unable to move a part of your body.
TMJ (Temporomandibular Joint) Pain: Lupus can cause joint pain and inflammation, including TMJ, which can result in jaw pain, difficulty opening and closing your mouth, and problems with biting and chewing.
Avascular necrosis: Lupus can lead to a serious complication called avascular necrosis that can lead to bone damage and pain. This complication happens when the blood supply to the bone is disrupted. It’s important to tell your doctor if you experience this type of pain so that they can address it quickly.
Additional Pain Problems:
Other factors can affect pain levels. An individual’s genes may determine how sensitive one is to pain, while additional psychosocial aspects, like anxiety, depression, and environment can also affect pain perception.
In a recent HealthLine article, they stated that pain is worse at night for a number of autoimmune and pain conditions, including lupus. The author states, “Doctors and medical researchers don’t know exactly what causes this increase in pain. It may be because daytime medications wear off by night or because hormone and protein levels in your body drop during the night.”
They also suggested that due to the body releasing less cortisol overnight, an increase in inflammation could add to pain levels, as well as the release of melatonin and prolactin, leading to more immune system activity, and potentially more inflammation.
Treating Lupus Pain:
There are several ways to manage lupus pain. You and your doctor should work together to find treatments that work best for you and your lifestyle. As mentioned above, there is no “one size fits all” solution to lupus pain. Be open to trying a few different things to find the best plan that works best for your lifestyle.
Treatment options for lupus pain include:
Physical therapy: Physical therapy can help strengthen your muscles to better support your joints. A physical therapist can also teach you pain management techniques.
Pain-relieving medications: Medications such as nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, and muscle relaxers can help relieve lupus pain. Tramadol and LDN have also been used with lupus and lupus overlap conditions that can cause pain.
Immunosuppressive medications: Immunosuppressive medications can help lower inflammation throughout your body.
Myofascial release: This is a type of massage therapy that focuses on reducing pain by easing the tension and tightness in the trigger points.
Alternative treatments: Some people report that alternative treatments such as acupuncture, meditation, chiropractic care, or acupressure help them manage lupus pain.
Support: It is important to have a strong social network that can help develop pain-coping behaviors and decrease perceived pain. Counselors, support groups, therapists, and pain specialists can help you navigate this difficult season.
*A note about cannabis: Some lupus patients do feel that cannabis does help with managing their pain. A 2018 Canadian evaluation studying the medical uses of cannabis concluded that the evidence for its usefulness in chronic pain was low. However, the study’s analysis found that medical cannabis could be helpful for chemotherapy-induced nausea and vomiting. It recommended avoiding medical marijuana products for acute pain, headaches, and rheumatologic conditions (such as lupus). For an in-depth breakdown of cannabis and its efficacy, check out this blog by Dr. Don Thomas.
Things you can do to help with your pain:
Getting exercise: Low-impact exercise can help you manage pain. A physical therapist can help you develop an exercise plan. Here is a great video by fitness and lupus thriver Danielle.
Getting enough rest: Making sure to get enough rest can help your body recover and can reduce pain. Check out this “sleep hygiene” checklist by Dr. Don Thomas!
Reducing stress: Stress can increase muscle tension and make your pain worse. Reducing your stress levels can reduce your pain.
Lupus pain is chronic and can often be managed at home and with the help of your doctor. However, there are times you might need to seek urgent medical care. Lupus is a medical emergency if you experience any of the following:
Closing:
Lupus is a painful condition that can be difficult to manage. Pain can occur throughout the body and can make it hard to enjoy everyday life. Understanding how, why, and where pain occurs is essential to identify effective therapies.
Some treatments can help with pain. It is up to you, to be honest with your healthcare team about how you are feeling and what treatments work well for you. Lastly, if there are times when you need to take pain medication, there is NO SHAME in that. Do what works for you, what is safe for you, and what gives you the best quality of life.
Written By:
Kelli (Casas) Roseta
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog are owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2024.
Sources:
Healthline’s Article “Your Guide To Treating Lupus Related Pain”
Sage Medical Journals Physiopathology of pain in systemic erythematosus lupus
September 2024
Nice Information, Thanks for sharing
Nice Information, thanks for sharing
CXSC
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