If you have other health conditions in addition to lupus, knowing you’re not alone can help. This is particularly true if you have a rare disease like complex regional pain syndrome (CRPS), a condition that causes chronic pain that usually affects the limbs.

One MyLupusTeam member asked, “Does anyone else have CRPS and lupus or heard of a link between the two?” Another replied, “I don’t want to say I’m happy about us both having these issues, but I’m happy that there is somebody out there with the same as me!”

If you’ve got questions about the link between CRPS and lupus, read on to find out whether there’s a connection and how you can manage the pain you’re experiencing.

What Is CRPS?

CRPS is a pain condition that usually affects your extremities (arms and legs) and hands. It’s a rare disease that can cause acute pain (pain over a short period of time) or chronic pain (lasting more than six months).

A MyLupusTeam member described CRPS as “a neurological disorder that causes severe nerve pain in the location of a previous injury or surgery even though the injury has healed.” A neurological disorder is one that affects your central nervous system (brain and spinal cord) and the nerves of your body (peripheral nerves).

There are two main CRPS types — type 1 and type 2 (sometimes written in Roman numerals, type I and type II):

• Type 1 — Also known as reflex sympathetic dystrophy (RSD), this type usually occurs after an illness or injury that doesn’t cause any nerve damage. About 90 percent of people with CRPS have RSD.
• Type 2 — Also known as causalgia, this type occurs after a nerve injury.

CRPS Symptoms

Pain is the most common symptom in people with CRPS. The pain can come and go, or it can be constant. Pain from CRPS is often described as a burning, stinging, or tearing sensation felt deep within the affected limb. People may also experience hyperalgesia — pain from things that aren’t normally painful. For example, they may feel pain from lightly touching the skin in the affected area.

Other symptoms of CRPS include:

• Edema (swelling)
• Decreased ability to use the affected limb
• Sensitivity to touch
• Sensitivity to cold
• Joint pain and stiffness
• Changes in skin temperature
• Discoloration, including red, purple, or blue
• Thinning of the skin
• Skin that appears shiny
• Nail and hair growth changes (increased or decreased)

The symptoms of CRPS can change over time. At first, it’s more common for the area to be swollen and warm. If CRPS symptoms continue, it most often feels cold.

CRPS Causes

Injury or trauma to a limb is the most common cause of CRPS. While most people recover from their injuries without any long-term effects, others can develop symptoms of CRPS.

People who develop CRPS after trauma or injury usually have damage in the nerve fibers that transmit pain, itch, and temperature sensations — called C fibers. Injuries most commonly associated with CRPS include:

• Bone fractures — Bone splinters can cause nerve damage. This is the most common cause of CRPS, especially wrist fractures.
• Surgery — Nerves may become damaged during a surgical incision, the procedure, or scarring.
• Sprains and strains — Injury to the muscles or connective tissue can allow excess joint movement that stretches the nearby nerves too much.
• Burns, cuts, or needle sticks — These types of injuries can also damage the underlying nerves.
• Immobilization — When an injured limb is kept from moving after injury to allow it to heal, it can press on nerves or restrict blood flow.

CRPS Risk Factors

Anyone can develop CRPS, but it’s more likely to occur in some people, including:

• Women — According to NORD, CRPS is three to four times more common in women than men.
• Middle-aged adults — CRPS most commonly occurs in people aged 37 to 70, with a peak onset at 40 years old.
• People of European ancestry — Per NORD, around 66 percent to 80 percent of cases of CRPS occur in this population.

Other factors that can influence your risk of developing CRPS include:

• Poor circulation
• Poor nerve health
• Immune system problems
• Genetics
• Environment

What’s the Connection Between CRPS and Lupus?

CRPS is more common in people with inflammatory and autoimmune diseases. “Some researchers believe that CRPS has autoimmune roots, and research is ongoing,” commented a MyLupusTeam member.

Research has found higher levels of inflammatory proteins like cytokines in the skin of the affected limb. Increased cytokine levels are also involved in inflammation and tissue damage caused by lupus.

Scientists have also found evidence that another type of immune protein called autoantibodies — antibodies that target the body’s own tissues — may also be involved in the development of CRPS. Positive antinuclear antibody (ANA) tests are more common in people with CRPS than in the general population. A positive ANA test result indicates that a person’s immune system is attacking their own tissues.

These findings have led to the speculation that autoimmunity is a possible cause of CRPS. Autoantibodies are also involved in causing inflammation in lupus. However, CRPS is a more complex disorder because it produces a variety of issues that affect different parts of the body.

The risk factors, symptoms, and causes of CRPS can also overlap with lupus.

Similar Risk Factors

Per Lupus Foundation of America, lupus — like CRPS — is more common in women than in men. The age when it starts is also similar in both conditions, with CRPS being most common in people aged 40 years and lupus in people between 15 and 44 years.

Similar Symptoms

CRPS symptoms, such as swelling, discoloration, and joint pain, overlap with the symptoms of lupus and other autoimmune conditions like rheumatoid arthritis (RA). A MyLupusTeam member shared, “I have lupus, RA, and CRPS. It’s very difficult to know which one is flaring since the symptoms are so similar and even aggravate each other.”

While joint pain related to lupus is usually limited to just the area around the joint, CRPS pain can affect the entire region of that limb.

People with lupus are also more likely to have a condition that restricts blood flow in the hands and feet called Raynaud’s disease. This can lead to symptoms that look like those of CRPS, such as blue skin and increased cold sensitivity.

Risk of Fractures

Bone fractures are the most common cause of CRPS, and people with lupus have an increased risk of fractures. One study found that people with systemic lupus erythematosus (SLE) — the most common type of lupus — had double the risk of fractures compared to people without lupus. The risk was even higher for people with lupus nephritis (kidney disease caused by lupus).

Women living with lupus are up to five times more likely to experience a fracture from osteoporosis than people without lupus, according to Lupus Foundation. The increased risk of fractures in lupus is related to a higher risk for osteoporosis — a condition where the bones lose density and become more likely to break. The elevated risk is likely due to several factors, including:

• Medications used to treat lupus (such as corticosteroids)
• Decreased physical activity from lupus symptoms such as pain and fatigue
• Lupus-related disease activity

Poor Nerve Health

Lupus can cause damage to the peripheral nervous system — the nervous system outside the brain and spinal cord — by causing nerve and tissue inflammation. This damage can lead to a condition called peripheral neuropathy that results in numbness, tingling, and an inability to move part of your body.

It may be more difficult for people with peripheral neuropathy to recover after an injury, leading to CRPS.

CRPS Treatment

If you have symptoms of CRPS after an injury, see your doctor as soon as possible. Early diagnosis of CRPS can lead to earlier treatment.

CRPS treatment usually involves a combination of different approaches. Physical therapy and occupational therapy can help to improve blood flow, strength, flexibility, and function of the affected limb. These approaches can also help with lupus-related pain.

Your doctor may also prescribe pain management medications, such as:

• Pain medicines, such as nonsteroidal anti-inflammatory drugs (NSAIDs)
• Topical pain relief cream or patches, such as lidocaine
• Antidepressants, such as amitriptyline (Elavil) or duloxetine (Cymbalta)
• Anti-seizure medications, such as gabapentin (Neurontin) or topiramate (Topamax)
• Osteoporosis medications, such as alendronate (Fosamax)
• Botulinum toxin (Botox) injections

If other treatments don’t work or you have severe pain, your doctor may recommend more invasive treatments, such as:

• Trigger point injections — Involve injecting a local anesthetic in the muscles of your shoulder, when CRPS affects an upper limb, to decrease sensitivity
• Sympathetic nerve blocks — Involve injecting an anesthetic next to your spine
• Spinal cord stimulation — Involves a surgically implanted device sending electronic signals to interrupt pain signals from your nerves
• Peripheral nerve stimulation — Involves placing a stimulating wire near a major nerve in the affected area

Part of your CRPS treatment may also involve making sure your lupus-related symptoms are under control. The use of immunosuppressants as a treatment for CRPS is still in experimental stages. However, keeping your lupus symptoms under control could help keep CRPS symptoms in check. Talk to your doctor about the best treatment for you based on your symptoms, lifestyle, goals, and overall health.

If you see any signs of infection, such as the flu, a cold, or problems with urination, it's important to know that your CRPS symptoms might get worse. If that occurs, contact your doctor right away. Also, remember to talk to your doctor before taking any over-the-counter medication.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 223,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Do you have CRPS along with lupus? Share your experience in the comments below, or start a conversation by posting on your Activities page.