Is Lupus Painful?
You might be wondering, "is lupus painful?", especially if you've just been diagnosed. For many, pain is the first sign of lupus. It may develop into one of the most difficult and persistent lupus symptoms. This was the case for me — my lupus began with pain in my finger joints, and that pain has remained the most frequently bothersome symptom even after diagnosis and treatment.
When active lupus causes the immune system to attack its own body, it also causes inflammation. This process causes heat, swelling and pain throughout the body; the type of pain ranges widely depending on which area is affected.
Lupus and Pain: Why Is Lupus Painful?
For those with active lupus or a lupus flare-up, pain is likely a guarantee. However, it can persist during times of remission or low disease activity. Painful sensations vary widely — from dull to sharp, aching to throbbing, or stabbing.
You could have mild joint pain that causes slight discomfort, or you could experience pleurisy — a condition where every breath can be painful. While the types of lupus pain are seemingly endless, some of the most common ones include:
- lupus arthritis (joint pain)
- muscle pain
- skin rashes or lesions
- mouth or nose sores
- kidney problems (lupus nephritis)
- pleurisy (inflammation of the lining between the lungs and chest wall)
- pericarditis (inflammation of the membrane around the heart)
- Raynaud's phenomenon (inflammation of blood vessels in the extremities)
- carpal tunnel syndrome
Furthermore, many people with lupus have a vitamin D deficiency, partially due to sun avoidance, and low vitamin D levels can worsen pain and depression. Your doctor can check your vitamin D levels and recommend dietary changes or supplements to increase it.
Some lupus pains are straightforward, but others are challenging to decipher. For example, persistent headaches could mean lupus is attacking the central nervous system or because it’s attacking the blood vessels leading to the brain. Your doctor will need to carefully consider different sources behind pain to put together a treatment plan.
How to Treat Lupus Pain
The first and most effective way to treat lupus-related pain is to address disease activity and inflammation. This is often accomplished with lifestyle changes and medications such as nonsteroidal anti-inflammatory drugs (NSAIDs), anti-malarials, corticosteroids, immunosuppressants or biologics such as Benlysta.
Living with lupus pain is particularly hard shortly after diagnosis. Try to give lupus medications a chance to work for you — it may take time. Adhering to your doctors’ treatment plan and talking to them if it’s not working will help you make progress.
Pain can also be treated with medications such as opioids, nerve pain medications or antidepressants. You may also find exercise, coping methods or alternative therapies useful.
Nerve pain medications are used for irritated nerves, neuropathic pain or widespread pain that is often associated with fibromyalgia. Lyrica is a nerve pain medication that is FDA approved for fibromyalgia — a prevalent condition among people with lupus. A similar medication, gabapentin, is also used for fibromyalgia pain management.
Tramadol is an opioid medication prescribed by many rheumatologists because it’s considered a low-level narcotic (it’s not as strong as other opioids and it has a lower addiction risk). Stronger narcotics aren’t necessarily recommended for lupus pain, and sometimes require seeing a pain management doctor.
Anti-depressants are used to treat lupus or fibromyalgia-related pain, even if depression is not present. However, since depression can worsen pain, it’s imperative to address it when occurring alongside pain. Some common anti-depressants include amitriptyline, venlafaxine, duloxetine (Cymbalta), and milnacipran (Savella). These medications may help by lowering pain signals and easing fatigue.
All of these pain medications have a long list of potential side effects. Furthermore, if there is an underlying cause for your pain, such as sleep disturbance or stress, it may be better to treat that cause prior to starting pain medications.
Physical activity can be a powerful pain management asset, but it must be approached carefully. Check with your doctor before starting an exercise routine. Fortunately, most people with lupus can do some form of activity and benefit from it.
Low impact strengthening exercises, such as water aerobics, swimming, bicycling or yoga, are recommended for reducing joint pain and muscle stiffness. A physical therapist can help you determine which type of exercise will be most beneficial to your specific issues.
Be sure to pace yourself while exercising to avoid fatigue. It may seem difficult to exercise at first, but the rewards can include stress relief, improved moods, increased range of motion and reduced inflammation, fatigue and pain.
Stress Relief and Coping Skills
Discussing how pain is affecting your life with a support group or therapist can be a huge stress reliever. Addressing any mental health concerns or major stressors will also help long-term with pain.
Learning coping skills for pain management will give you many tools to help take control of your pain. Some examples are progressive relaxation, focused breathing, guided imagery, distraction techniques and meditation.
Anything that can take your mind’s attention away from your pain will relieve stress and tension, which hopefully in turn will reduce your pain. These techniques are also relatively easy and safe and have no harmful side effects.
Many people with lupus have tried alternative therapies such as acupuncture, floatation therapy, biofeedback, chiropractic therapy or acupressure to relieve pain. Others have found relief via devices such as a TENS (transcutaneous electrical nerve stimulation) unit or pulse electromagnetic frequency (PEMF) device. Supplements, herbs, CBD oil products, topical creams and essential oils are also hot topics when discussing alternative ways to manage pain.
Trying these complementary treatments could make a huge difference in your pain but remember to always talk to your doctor about them first. Especially since some supplements, herbs or dietary changes could have serious negative interactions with lupus medications.
Living with Lupus Pain
Dealing with lupus and the pain it brings can make daily life immensely difficult. While pain levels may rise and fall with flares, most of us have a baseline pain level that is frustrating and limiting.
Since lupus pain is multifactorial, you may need to try a lot of things before your pain is managed. For me, continuing to try new things has been the key to remaining hopeful in my lupus pain journey. Make sure to take time to rest so you can gather the strength you need to prevail despite lupus pain. Is lupus painful? Yes, but there are many things you can try that could dramatically reduce or help manage your pain.