Lupus: Symptoms, Pain and Approaches to Care

What is Lupus?

Lupus is a complex autoimmune disease that not only causes a wide range of physical symptoms, such as joint pain, fatigue, and organ inflammation, but also significantly impacts mental health. Many individuals with lupus experience cognitive dysfunction, anxiety, depression, and emotional distress, often referred to as 'lupus fog.' The unpredictable nature of the disease, combined with chronic pain and social isolation, can take a toll on both physical and mental well-being.

The Purple Butterfly - Hope for Lupus

The Purple Butterfly - Hope for Lupus

Genetic factors and environmental factors (i.e., infection, UV light, or stress) can set off the dysregulated autoimmune response that causes lupus, creating autoantibodies that mistakenly attack the body's tissues. This can cause a great deal of inflammation, pain, and widespread tissue destruction. It can affect the joints, organs (like the brain, heart, lungs, and kidneys), blood cells, and the skin. Some people with lupus have intermittent episodes, others go into permanent remission, and some develop chronic and more progressive symptoms.

Symptoms of Lupus

While lupus can appear at any age, it usually occurs in individuals between 15 and 45 years of age. Symptoms of lupus tend to be insidious; they can take over months to years to appear, and because they mimic those of many other diseases, it often goes unrecognized.

The degree to which people have symptoms is varies from person to person. The symptoms may include the following:

• Joint pain (similar to arthritis or fibromyalgia)

• Facial "butterfly" rash

• Raised red patches on the skin

• Photosensitivity (sensitivity to sunlight)

• Fever

• Altered mental status, confusion, psychosis (neuropsychiatric symptoms)

• Seizures (in some cases)

• Hair loss

• Difficulty eating

• Fatigue

• Raynaud's phenomenon (cold-induced finger discoloration)

• High blood pressure

• Enlarged lymph nodes

• Stomach problems

• Swollen joints

• Limb weakness

• Cardiac dysrhythmias (irregular heart rhythms)

• Pericarditis (inflammation of the heart lining)

• Cardiomegaly (enlarged heart, occasionally)

  
  

Diagnosis is primarily done through a thorough history, exam, and through lab testing (ANA, CBC, complete metabolic panel, specific antibody tests, urine tests, and others). X-rays, ultrasounds, MRIs, and EKGs are also done, depending on the extent of the disease and symptoms.

Sometimes a lupus flare is preceded by various warning signs and symptoms like fevers, headaches, increased fatigue, stomach problems, rash, and others. In many cases, the earlier it is treated, the more likely control will be achieved.

Approaches to Care of Lupus

General Approaches to Pain of Lupus

• Create an optimal nutrition plan (see healthy foods and which foods to avoid in lupus)

• Stop smoking

• Cognitive Behavioral Therapy/counseling (especially cognitive behavioral therapy)

• Relaxation techniques (lots of instructions online - like deep breathing, meditation, guided imagery).

• Yoga

• Tai Chi

• Appropriate exercise: strength training (small weights), swimming/hydrotherapy, walking, low-impact aerobics, stretching.

​​Over-the-Counter Medicines

• NSAIDS: Ibuprofen (Advil/Motrin), Naproxen (Aleve), and Aspirin are often effective in decreasing pain (especially pain that is not severe). They are always good medications to start with if you are having pain, especially pain from inflammation (almost all pain has some element of inflammation). BUT on a long-term basis, these medicines can cause gastric ulcers and bleeding as well as kidney and blood pressure issues, so beware - alternate your pain medications (NSAIDS) if possible - ibuprofen to acetaminophen or a prescription medicine. Consider taking a stomach acid-reducing medicine (common: omeprazole/Prilosec or famotidine/Pepcid and others) while taking NSAIDs. Remember: Aspirin thins your blood and can make you bleed more easily.

  You may want to speak to your primary healthcare provider about pain control.

• ​Tylenol, on the other hand, is not an anti-inflammatory but a pain reliever instead. This is also a good medication, but used long term, can cause liver problems. Again, consider alternating this with ibuprofen every few weeks or speak to your PCP about getting another prescription pain medication.

Topical Pain Relievers

• Menthyl salicylate (an anti-inflammatory related to aspirin)

• Voltaren/diclofenac

​Considered Natural Approaches 

• Vitamin D supplementation

• Curcumin/Turmeric

• Omega-3 Oils

• Glucosamine/Chondroitin

• Probiotics

Because of its potential to interact with certain lupus medications, you may want to avoid echinacea.

People with lupus want to avoid those supplements and foods that stimulate the immune system, like echinacea, spirulina, alfalfa, excess vitamin E, fried foods, processed meats, tomatoes, peppers, potatoes, and eggplant trigger flares. 

It is important to discuss alternative options with your healthcare provider.

Prescriptive Treatments

Of course, some of the underlying problems (i.e., cardiac) must be treated individually, but some of the treatments below may help symptoms and delay progression.

• Hydroxychloroquine

• DMARDS (disease-modifying antirheumatic drugs) - Immunosuppressants (common: methotrexate)

• Biologics $$$ (common: Benlysta, rituximab, and others). These reportedly work pretty well to suppress your immune system (basically, to stop the immune system from attacking your own cells). With immunomodulators, you have to be very mindful: They tend to lower your immunity, placing a person at greater risk of infection. It is a trade-off. So, if you chose to take these, be especially careful around crowds and sick people (especially kids).

• Cox-2 inhibitors (common: celecoxib (Celebrex), are an anti-inflammatory. This will likely cause fewer stomach problems than ibuprofen and other NSAIDS, but it must be used with caution because of the potential contribution to kidney damage.

• Meloxicam

• Opioids (short course) - such as oxycodone or hydrocodone, (combo opioids with Tylenol: Lortab, Percocet, and Vicodin), and Tramadol (i.e., Ultram). Because these are highly addictive, they are not the drug of choice for long-term pain.

• Joint injections may help reduce swelling and inflammation

• Naltrexone and chronic pain (may reduce perception of pain)

• Antiseizure medications: Gabapentin, Pregabalin (Lyrica)-for nerve pain

• Antidepressants (just because you take a medicine labeled "antidepressant doesn't mean you are depressed! These are frequently used for some pain syndromes and help alter neurotransmission signals in pain) - duloxetine/Cymbalta (SNRI) and amitriptyline (antidepressant)

• Muscle relaxers (common: cyclobenzaprine, methocarbamol) 

  
  

  Pain clinics help diagnose pain and take a holistic approach to treatment and care. They have providers who help diagnose painful conditions, prescribe medications, give injections, provide physical therapy, occupational therapy, and provide other approaches to pain, such as cognitive behavioral therapy (psych), to help alter the perception of and tolerance to pain. This is an ideal approach to hard-to-control chronic pain.

If you have any questions about lupus: symptoms, pain and approaches to care or if you suspect you may have this disease, see a healthcare provider. Treat early.