Itchy skin, achy joints, and headaches — these are just a few symptoms that MyPrurigoTeam members deal with on a daily basis. It can be tough enough to live with a chronic skin condition like prurigo nodularis (PN), and adding pain to the mix may only make symptoms worse. “I’m in such pain. I’m sitting at my desk at work, and all I can think about is the pain I have,” shared one MyPrurigoTeam member.
Painful skin in PN is often overlooked by doctors, but it’s a very real symptom. In this article, we’ll discuss why PN can be painful and what you can do to manage your pain. We’ll include members’ tips and experiences to help you live a more comfortable life with prurigo nodularis.
Prurigo nodularis, also called nodular prurigo, causes intensely itchy skin. The more you scratch to relieve the itch, the worse it gets. Your skin also begins forming hard lumps called nodules or papules, which only makes it itchier. This leads to an intense itch-scratch cycle, eventually causing bleeding and scarring. People with PN can also have other skin disorders, like atopic dermatitis (the most common type of eczema), psoriasis, and bullous pemphigoid, that contribute to pruritus (itching).
In addition to causing itchy bumps on your skin, PN can be painful. An online survey of 94 people with PN found that 48.9 percent experienced pain every day. Most of the participants classified their pain as moderate to severe.
Living with a painful condition like PN can take its toll on your well-being. One study found that quality of life among participants with PN was lower, in part because they experienced more pain than people in the general population.
Doctors and researchers believe that PN is caused by dysregulation between the immune system and the nervous system. Your immune system produces inflammation to protect you from invading bacteria and viruses. However, uncontrolled inflammation can actually do more harm than good.
Neuroinflammation — inflammation in your nerve cells — can lead to nerve pain in PN. Also known as neuropathic pain, nerve pain occurs because your nervous system is damaged and can’t work properly. The damaged nerves can’t send the correct pain signals to your brain.
People with PN have extra inflammatory chemicals in their dermis (inner layer of skin). These chemicals are responsible for damaging the skin’s nerves and creating pain signals. Studies show that people with PN can develop chronic nerve pain disorders like fibromyalgia.
Nerve pain, or neuropathic pain, feels different for each person. Some people describe a tingling, stinging, burning, or stabbing sensation. MyPrurigoTeam members have shared their experiences with PN-related pain. “It hurts so bad, you can’t concentrate on anything. I went for about three months with nodules on my buttocks. Every time I moved and tried to sleep, I was in agony,” wrote one member.
Others may experience pain from touch that normally isn’t painful, such as light, gentle contact. A member shared, “I have to wear long gloves at all times — just the air from the ceiling fan is excruciating 100 percent of my skin, from my elbows to my fingers, not just open and healed spots but all of it. It honestly feels like I’m being stabbed.”
Some members have noticed that they experience pain even after lesions and nodules have gone away. One member asked, “Does anyone’s skin hurt to touch where you’ve had previous lesions?”
Another replied, “Like a bruise but a sore, even though it looks like it’s healed.”
When living with PN, it’s important to work closely with your dermatologist or skin specialist to control your symptoms. Unfortunately, there’s currently no cure for PN — but it can be managed in several ways. Examples of treatments for nodules and itching include:
While these treatment options are effective for treating itchy skin, their effect on skin pain is less understood. Your doctor may also prescribe dupilumab (Dupixent), an injectable biologic medication, for the treatment of PN.
Dupilumab is the first PN treatment approved by the U.S. Food and Drug Administration (FDA). It works by blocking inflammatory messengers in the skin to help relieve intense itching. Two clinical trials looked into the drug’s effectiveness in treating PN lesions and itch, and the researchers also found that dupilumab significantly improved skin pain.
Topical creams and lotions, which are applied to the skin, may also offer pain relief to people with PN. For example, capsaicin — a chemical best known for making hot peppers spicy — can help treat shooting or burning nerve pain, according to Mayo Clinic. Over-the-counter (OTC) products like Salonpas Hot, Capzasin-HP, and Zostrix HP may help relieve your PN pain.
MyPrurigoTeam members also recommend products with menthol and methyl salicylate. One member shared, “I spray my upper back with Icy Hot, and so far it helps!” Menthol is a counterirritant that interferes with how the body processes pain signals.
Other neuropathic pain treatments are taken orally (by mouth). The antiseizure medication gabapentin (Neurontin) is commonly prescribed to treat nerve pain because it calms pain signals in nerves. MyPrurigoTeam members have shared their experiences with this medication. “Gabapentin 200 milligrams three times a day has been helping me with the pain,” one said.
Antidepressants might also help treat nerve pain. Duloxetine (Cymbalta) is an antidepressant that works by blocking neurons (brain cells) from using certain chemical messengers. Doctors and researchers believe these chemical messengers can help calm pain signals and provide relief.
Other members report that pain relievers like acetaminophen (Tylenol) can help. “I have aches and pains every day. Some are worse than others. I take Tylenol and tizanidine (muscle relaxers) to lessen the pain,” shared one member. However, this approach may not work for everyone — in fact, OTC pain relievers often don’t help treat neuropathic pain.
Some MyPrurigoTeam members have turned to alternative treatments and home remedies to relieve their skin itching and pain. Some of their comments:
Before trying a new treatment for managing your PN pain, talk with your health care provider. They can offer guidance or suggest other approaches to help you live a more comfortable life with prurigo nodularis.
MyPrurigoTeam is the social network for people with prurigo nodularis and their loved ones. On MyPrurigoTeam, members come together to ask questions, give advice, and share their stories with others who understand life with PN.
Have you felt pain while living with prurigo nodularis? What treatments have worked for you? Share your experiences and advice in a comment below or on your Activities page.
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