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Pain, Pain, Go Away – The Chronic Pain of Lupus

 

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Chronic pain can feel like you carry the weight of the world on your shoulders (and back and hips and feet and…). Your head may pound, your lower back may ache, or things may just hurt for what seems like no logical reason whatsoever. It often feels like you can never escape the pain. While you may want to retreat to a deserted island to lie on the sand and watch the waves roll in, you can’t exactly escape yourself; the pain is always there with you wherever you go.

But there is a logical reason, in fact, many logical reasons, why you may experience the chronic physical (and yes, emotional) pain that comes with lupus.  Knowing why the pain is there and being able to adequately express exactly how you feel to your healthcare practitioner or anyone you trust, can put you on the road to some relief.

This article serves as an overview of some of the common types of pain that often comes with lupus.  It is not inclusive of all the types of pain an individual with lupus may experience. We have included links to a few of our other blog articles that provide more information about specific types of pain such as arthritis, fibromyalgia, and Raynaud’s Phenomenon.

Why do I hurt so much?

You may already know this, but it bears repeating to put things in perspective.  Lupus is an autoimmune disease in which the body attacks itself, thinking its own healthy cells, organs, etc. are the enemy. Lupus does not attack everyone in the exact same way; therefore, there is no one-size-fits-all treatment approach here.  Since your body is often in “fight mode,” it will try to and defend itself against foreign invaders – but in this case the foreign invader is your own cells, your own body.

Lupus is also an inflammatory disease. Inflammation is how your body reacts to injury, or the intrusion of anything that is a perceived enemy. When anything is inflamed, it can get, not only uncomfortable and tender to the touch, but downright painful. The constant need for your body to defend itself against itself results in a surge of strategic chemical reactions of the molecules in your body called mediators.  These mediators are responsible for all the pain, redness, and swelling that occurs in your joints, on your skin, and basically anywhere throughout your body. These mediators run the front lines of defense, trying to protect you and alert you that something needs attention.

Types of Pain, Diagnostics, and Treatment

Up to 95% of individuals with lupus report experiencing joint pain (arthralgias) and muscle pain (myalgias) as key symptoms – the ending “-algia” is actually Greek for “pain.” In a 2003 study by the University of Pittsburgh School of Medicine, 85% of lupus patients studied reported arthralgia and up to 66% reported myalgia including headaches and chest pain. Patients reported a diversity of pain conditions, which also included discomfort from symptoms like lower back pain and from temporomandibular joint (TMJ) disorders as well. Obviously, pain knows no boundaries.

It is important to keep in mind, however, that pain does not always correlate to inflammation. Sometimes even the pain itself does not have a direct relationship to your lupus. The pain may be the result of other health issues or injuries if the medications prescribed for lupus do not stop the discomfort. It’s important to always speak with healthcare provider when you feel your medications are not working or you have new or worsening symptoms. We will discuss how to effectively speak with your healthcare provider later in this article. 

Arthritis and Rheumatoid Arthritis

Approximately 50% of patients with lupus may develop coexisting inflammation of the joints generally called, arthritis. The stiffness associated with some arthritis is usually isolated to the morning hours, and the pain may thankfully be brief. If the pain and inflammation is more intense and exists for longer periods of time, you may be tested for rheumatoid arthritis (RA).  RA is actually the most common of the systemic autoimmune diseases and occurs when the body attacks the lining of the joints and tendons of the musculoskeletal system – most specifically the synovium of the joint. The synovium becomes thick and inflamed with RA. The good news is that advancements in medications used to treat the disease these days are more effective at decreasing the chance for deformity and disfigurement to occur.  For more information, see our blog, “Rheumatoid Arthritis.”

Diagnosis: A medical professional can diagnose arthritis through a physical examination, blood tests ,ultrasounds, and/or x-rays.

Treatment: Treatment includes NSAIDs such as: aspirin, ibuprofen, naproxen; acetaminophen; topical capsaicin. If these treatments prove ineffective, you may be prescribed steroids, hydroxychloroquine, or stronger immunosuppressant medications.

Tendonitis

With lupus, inflammation of the tendons can occur as well (tendonitis). Tendons are tissues that attach muscle to bone. Tendonitis can also cause pain in and around joints.

Types of tendonitis that can occur with lupus include: rotator cuff (shoulder), epicondylitis (“tennis elbow”), flexor tenosynovitis in the palm (“trigger finger”), Achilles’ (back of the ankle), plantar fasciitis (bottom of the heel).

Diagnosis: Tendonitis is typically diagnosed by a physical exam, but in extreme circumstances, an MRI or blood work may be ordered.

Treatment: Rest and ice packs, NSAIDs such as: aspirin, ibuprofen, naproxen; acetaminophen; methotrexate; corticosteroid injections.

Fibromylagia

Fibromyalgia is its own animal and happens due to a problem with the pain nerves of the body. Fibromyalgia can affect up to 20% of patients with lupus; symptoms include unexplainable aches and pains, tenderness, stiffness, numbness and tingling, headaches, tiredness, and poor sleep quality. It will often cause discomfort in the muscles of the back, neck, and shoulders.

Symptoms can vary from person to person. Fibromyalgia can be hard to diagnose and therefore hard to treat. While it has not been determined that lupus causes fibromyalgia per se, if you have lupus, you may be more susceptible to developing fibromyalgia. For more information, see our blog, “Fibromyalgia.”

Diagnosis: There are no specific diagnostic tools for fibromyalgia. Tests may be given to rule out other disorders such as rheumatoid arthritis or thyroid disorders. Often a medical provider will monitor your symptoms, and if you’ve experienced wide-spread chronic pain for three months or more that has not responded to traditional treatments and there is no other underlying disorder or reason for the pain and discomfort, they will then diagnose fibromyalgia.

Treatment: Self-care including stress-reduction; anaerobic exercise; analgesics or pain medications such as tramadol; antidepressants such as duloxetine (Cymbalta) and milnacipran (Savella) which also help with pain and sleep; anti-seizure medications such as gabapentin (Neurontin) and pregabalin (Lyrica). It’s important to note that fibromyalgia does not typically respond to NSAIDs or corticosteroids.

Headaches and Migraines

One study published in a 2013 issue of Arthritis & Rheumatism by the American College of Rheumatology concluded that while headaches are often experienced by individuals with lupus, they are not associated with “global disease activity or specific antibodies.”   The association between an increased chance of headaches and migraines in individuals with lupus is controversial. It has been reported that up to 72% individuals with lupus experience headaches, specifically tension headaches and migraines though it has not been fully determined these headaches are from the lupus itself. Sometimes during a lupus flare, an individual may experience an increase in headache activity or “lupus headache.” It is not known what causes this, but individuals usually respond quickly once the headaches are treated with prednisone.

Though incredibly rare, there is one unique type of headache that does occur within approximately 1% of patients with lupus: pseudotumor cerebri (often called benign intracranial hypertension). This pain is often severe and can occur when there is an increase in pressure of the cerebral spinal fluid around the brain and spinal card. The pain with this condition often mimics that of the pain felt with a brain tumor though there is no tumor present (“pseudo-“ means “false”, hence, pseudotumor cerebri or “false tumor of the brain”).

Diagnosis: For general headaches and migraines: Physical and/or neurological exams; CT scan; MRI; spinal tap; EEG (electroencephalogram). For pseudotumor cerebri: A healthcare professional will want to first rule out the presence of an actual tumor so they most likely will order an MRI or CT scan. They will then probably perform a spinal tap, which will indicate an increase of cerebrospinal fluid (CSF).

Treatment: For general headaches and migraines: NSAIDs such as: aspirin, ibuprofen, naproxen; acetaminophen; triptans; anti-emetics (for nausea and vomiting). For pseudotumor cerebri: When performing the spinal tap, the fluid may also be drained to relieve pressure. The treatment of lupus will continue and a diuretic – acetazolamide – may be added.

Serositis

Serous membranes line the organs of your chest and abdomen. In individuals with lupus, these membranes may become inflamed, resulting in serositis. Types of serositis include: pericarditis (the membrane around your heart), and pleuritis (the membrane around your lungs). This inflammation can cause fluid to build up around your organs and can be very painful.

Diagnosis: A medical professional will often take a sample of the fluid to determine the cause and use an ultrasound to guide the needle.

Treatment: NSAIDs to treat the pain and discomfort. Antibiotics, immunosuppressant medications, and/or antiviral medications may be used to treat the underlying cause.

Plexopathy and Polyneuropathy

Plexopathy and polyneuropathy affect the nerves. Plexopathy, though rare in patients with lupus, affects the nerves of the spinal cord. If lupus has damaged these nerves, an individual with lupus may experience numbness and/or weakness in one arm or one leg and tingling, numbness, and burning pain.

Polyneuropathy is a more common condition affecting up to 20% of individuals with lupus. It affects the nerves responsible for sensation and feeling and is often experienced as a tingling or numbness in the feet more so than the hands. These sensations may also be accompanied by a burning pain, “pins and needles,” or like electric sensations.

Diagnosis: Both conditions can be diagnosed through an electromyography (EMG) test.

Treatment: Treatment for plexopathy includes high doses of steroids. Treatment for polyneuropathy includes opioids such as tramadol, antidepressants such as nortriptyline and/or duloxetine (Cymbalta), and/or antiseizure medicines such as pregabalin (Lyrica).

Raynaud’s Phenomenon

Many individuals with lupus and/or Sjögren’s develop Raynaud’s Phenomenon (or secondary Raynaud’s Phenomenon). Raynaud’s causes the blood vessels of the finger and toes to narrow, especially when experiencing cold temperatures or stress. Certain fingers and/or toes may go numb and even discolor when experiencing an attack. When the fingers/toes start to become warm again as blood flow returns, the digits may start to throb and tingle. For more information, see our blog, “Raynaud’s Disease or Raynaud’s Phenomenon: Symptoms, causes, treatments, and preventing flare-ups.

Diagnosis: A physical examination, complete health history and sometimes blood tests are ordered. To determine if Raynaud’s is primary or secondary, the following procedures may be ordered: nailfold capillaroscopy (an examination of the cuticles), antinuclear antibody (ANA) testing via a blood test, and/or erythrocyte sedimentation rate (ESR or sed rate).

Treatment: Stress-reduction; keeping hands, feet, and core body warm; exercise. If Raynaud’s is secondary: calcium channel blockers, alpha receptor blockers, vasodilators.

Anxiety and Depression

The anxiety and depression an individual with lupus may experience can come with its own aches and pains. These conditions, in fact, are more prevalent in individuals with lupus than the general population. Anxiety over not feeling well can cause muscle tension which can lead to pain. Depression may also be present which can occur as a result of anxiety or on its own; depression can cause fatigue and also inexplicable pain. Inexplicable or not, however, it is true and real pain.

It is important to speak to someone you trust right away if you or anyone you know experiences any symptoms of anxiety and/or depression. These conditions are quite common in the general public and can be highly treatable these days. For more information, see “Dealing with a Lupus Depression: How do you Cope?”

Diagnosis: Speaking with a trusted professional who can diagnosis and treat these conditions.

Treatment: Depression may be treated with a combination of psychotherapy and psychotropic medications. Anxiety may be treated with a combination of psychotherapy, stress-relieving activities; anti-anxiety and/or antidepressant medications.

Be Heard – Give Voice to Your Pain

It goes without saying that it’s important that you are heard and understood when you discuss your pain and related symptoms with your healthcare professional. You want to make sure you do not leave anything out and that you are accurate in describing your discomfort. Once again, it’s time to be your own best advocate!

It helps to into your office visit well organized and prepared with exactly what you want to say. A study conducted in Sweden in 2012 noted that individuals with lupus and pain often do not feel taken care of by their health care providers. This makes it even more important that you take a very strategic and thoughtful approach when speaking about your symptoms. Here is a list of things to consider when getting ready to discuss your concerns at your next appointment:

  • Document chronologically when things started to happen and how often. Did it happen out of the blue? Was it gradual, or have you felt this way before?  Mention what you were doing at the time when symptoms occurred and even the time of day.
  • Describe exactly where you felt the discomfort, and if it is steady or comes and goes.
  • Use adjectives to describe how the symptom felt and how experiencing them made you feel.
  • Acknowledge, if anything, that you can do to make the symptoms feel better (or go away) or if something makes them worse.
  • Note your discomfort on a scale of 1-10 with 1 being minimal or non-existent and 10 being excruciating and unbearable.
  • Be honest: tell someone if the problem has affected the quality of your daily life and if so, how.
  • It is important to let them know if others you know have experienced the same thing (friends, family, coworkers, classmates, etc.).
  • Don’t be afraid to say if you’re scared. Let your healthcare professional know why the symptoms concern you, and what your biggest fear about them is.

When you receive appropriate treatment, your pain symptoms and their intensity should begin to decrease. Don’t be afraid that you will overwhelm someone with your information, and don’t be afraid to speak up if you and your symptoms are not receiving the attention they need. By taking control of how you express your health issues, your confidence will grow as well as your ability to self-advocate and even your ability to advocate for others.

In Conclusion

When pain symptoms are new, they can feel intense and overwhelming. The fear they may invoke does not have to stop you from seeking the help you need. By meeting your symptoms head-on, you will begin to crack the code to better pain relief.  Once adequate and sufficient treatment is received, and you learn more about your lupus, the intensity and frequency of that pain and discomfort should be easier to manage.  There is power in being able to speak effectively on your own behalf, to ensure your needs are met, and that your lupus and all of the symptoms you feel are understood and taken seriously. 

 

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References

Aranow, C., Alarcon, G., Bruce, I., Bae, S., Bernatsky, S., Clarke, A., . . . Zoma, A. (2013). Headache in systemic erythematosous. Arthritis & Rheumatism, 65(11), 2887. doi:10.1002/art.38106
Fibromyalgia. (n.d.). Retrieved from: https://www.mayoclinic.org/diseases-conditions/fibromyalgia/diagnosis-treatment/drc-20354785
Fibromyalgia: Understanding the diagnosis process. (n.d.) Retrieved from: https://www.mayoclinic.org/diseases-conditions/fibromyalgia/in-depth/fibromyalgia-symptoms/art-20045401
Greco, C., Rudy, T., & Manzi, S. (2003). Adaptation to chronic pain in systemic lupus erythematosus: Applicability of the multidimensional pain inventory. American Academy of Pain Medicine, 4(1), 39.
Howard, P. (2017). March’s topic of the month: pain management. Retrieved from: https://www.lupusuk.org.uk/pain-management/
Howard, P. (2018). February’s topic of the month: coping with headaches & migraines. Retrieved from: https://www.lupusuk.org.uk/headaches-and-migraines/
Lahita, R. G., & Phillips, R.H. (2014). Lupus: Everything you need to know (3rd ed.). Garden City Park, NY: Avery Pub. Group.
Moyer, N. (2018). What is serositis? Retrieved from: https://www.healthline.com/health/serositis#symptoms
Questions & Answers about Reynaud’s Phenomenon. [Brochure]. (2012). Bethesda, MD. National Institute of Arthritis and Musculoskeletal and Skin Diseases
Thomas, D. E. (2014). The lupus encyclopedia: A comprehensive guide for patients and families. Baltimore, MD.: Johns Hopkins University Press.
Waldheim, E., Elkan, A., Bergman, S., Frostegard, J. van Vollenhoven, R., & Henriksson, E. W. (2013). Extent and characteristics of self-reported pain in patients with systemic lupus erythematosus. Lupus, 22, 136. doi:10.1177/0961203312468625

 

Article by: By Liz Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.

All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at info@kflupus.org for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.

All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.

 

Article by : Elizabeth Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.