On the surface, psoriasis may seem like discolored patches of skin with scales. However, people with psoriasis experience a range of symptoms beneath the surface that affect their daily lives. Afterall, psoriasis is a systemic autoimmune disease.
The invisible symptoms that others don’t see can make life with psoriasis particularly isolating. “I didn’t know anyone with psoriasis, so I had no one to share with,” explained a MyPsoriasisTeam member.
Connecting with others who can relate to your experience can be therapeutic.
MyPsoriasisTeam members share glimpses of how the disease impacts them. “You can be having the best day, and then a complete stranger asks, ‘What is that?’ Those moments can bring you down in seconds,” said one member.
“I struggle with the sleepless nights, whether due to pain, the burning of your skin, the itchiness, then the pain from scratching, all the while keeping you awake at night. It’s so draining,” explained another member.
Here’s more insight from MyPsoriasisTeam members who know how it feels to live each day with the full spectrum of symptoms from psoriasis — both visible and invisible.
“I was desperate to find help or a solution to my itching skin. … I am careful about what I use in the shower now, and I always moisturize. When my skin is bad in the evening, I moisturize some more,” wrote one member.
Most people with psoriasis have plaque psoriasis, which produces raised patches of skin that usually itch. Unfortunately, scratching can make the patches thicker, so dermatologists urge people to treat underlying psoriasis rather than giving in to the urge to scratch.
Even with treatment, severe itching can be hard to ignore. When you scratch, dry skin can start to flake off, leaving dandruff flakes on clothing. Broken skin is also more prone to infections. For some people, the urge to scratch is enough to keep them awake at night, impairing their ability to get a restful night’s sleep.
“How I wish for a solid six hours [of sleep] without waking up at least once,” said a MyPsoriasisTeam member.
Many people with psoriasis have trouble sleeping, and there are several reasons for this issue. Studies show psoriasis is associated with higher rates of obstructive sleep apnea — which makes breathing harder — and with restless legs syndrome (involuntary leg movements), which can wake you up. Joint pain and other psoriasis symptoms can also contribute to poor sleep, which can then cause fatigue during the day.
“I wake up too but usually can get back to sleep. Sometimes I have to get up just to move around a bit when my hip joints hurt,” said a member of MyPsoriasisTeam.
“The burning itch seems to be worse in the evening,” shared another member. “I’ve been prescribed an antihistamine to take before bed, and I’ve been sleeping better.”
Getting enough sleep is essential to your health and well-being and for keeping daytime fatigue in check. It’s important to share sleep concerns with your doctor. They may recommend a sleep study to figure out why you’re awake at night and help determine the most appropriate treatment options.
“Right now, the fatigue and joint pain are the worst symptoms for me,” a member wrote.
Psoriasis can progress into psoriatic arthritis, a condition that affects the joints. Psoriatic arthritis is more common in people with severe skin symptoms. You may notice swollen and tender joints of the fingers and toes and heel pain.
One member described the most difficult part of psoriasis as “not knowing, when you get up in the morning, if you’ll be able to walk and if your tendons will hold your knees and ankles in place.”
The backs of the lower legs may become swollen with psoriatic arthritis. In addition, you may feel generally stiff in the mornings and more limber as the day goes on. Letting your doctor know about any new joint symptoms is crucial with psoriasis, as up to 30 percent of people with psoriasis develop psoriatic arthritis. There’s no cure for psoriatic arthritis, but getting the condition under control in its earlier stages can help slow disease progression.
If you do develop joint pain, your dermatologist will refer you to a rheumatologist. Nowadays, new treatment options for psoriasis can help treat psoriasis skin symptoms as well as arthritis-related joint issues.
“I get stressed out because of my fingernails. They are wrecked due to psoriasis, and I really wish something could be done about it!” a member wrote.
Half of the people with plaque psoriasis notice changes to their nails, but this can happen with any type of psoriasis. “My nails are horrible and sore,” said another member.
Psoriasis can cause small dents or pits in the fingernails and toenails. Nails can become discolored and may feel rough or crumble. If excess skin cells build up underneath the nail bed, nails can start to lift and detach. You may feel self-conscious if others mistake psoriasis for nail fungus or poor hygiene.
“Psoriasis drains you mentally because you are always thinking about it. There is always some reminder of it, whether it’s the pain or white flakes … it is always on your mind.”
It’s not unusual for people with psoriasis to feel stigmatized and worry about how others will perceive their skin condition, especially people they don’t know. Adding to the problem is the common misconception that psoriasis is contagious. Educating those close to you about psoriasis can help them understand what you’re going through, but it’s not always something people with psoriasis feel comfortable doing. Situations like dating or going on job interviews can be particularly stressful.
Mental health issues like depression are more common among people living with psoriasis than in the general population. Finding a supportive community (either in person or online) and seeking mental health counseling can help. An effective counselor can teach you coping strategies to help reduce stress and reframe negative thoughts.
While not a symptom, living with and treating a chronic condition like psoriasis can cause financial strain, which can compound the negative effects on your mental health and quality of life. If you have trouble paying for your medications or you need to miss work because of frequent flare-ups, you may be worried about how to make ends meet.
The National Psoriasis Foundation offers tips and resources for psoriasis-related expenses. You can connect with their Patient Navigator Center for guidance or speak to your health care provider about your concerns.
As with all the symptoms of psoriasis, getting proper treatment is the first step to staying healthy and living your best life with the skin disease. Light therapy, topical treatments (lotions, creams, and ointments), and systemic medications (like biologics) can help change the course of severe psoriasis.
On MyPsoriasisTeam — the social network for people with psoriasis and their loved ones — more than 119,000 members come together to ask questions, give advice, and share their stories with others who understand life with psoriasis.
How has psoriasis impacted your daily life? Do you have any common signs and symptoms or side effects of psoriasis treatments that affect your physical or mental health? Post your suggestions in the comments below, or start a conversation on your Activities page.