Imagine being in constant pain. The kind of pain that no one else can see. Enter psoriatic arthritis (PsA), a chronic inflammatory disease that causes that exact kind of pain; stiffness and tightening in and around the joints. It’s no wonder PsA often goes unnoticed—initially, many people don’t even realize they have it. “People with psoriasis don’t make the connection of joint pain to their skin condition, so they don’t mention it to their dermatologist,” says Marcy O'Koon, senior strategic advisor of Consumer Health at the Arthritis Foundation. “This disease is like a well-kept secret.”
The real problem with PsA are the flares; times of increased pain and fatigue that come on unexpectedly and interrupt lives, calling for rest and retreat, says O'Koon. “Flares can happen seemingly out of the blue. Some people believe the timing coincides with times of stress, physical, emotional or other. There is no predicting how long a flare will last.”
To better understand what psoriatic arthritis really feels like, we asked four PsA warriors to share their experiences dealing with, overcoming, and treating PsA and their flares.
Debra Nussbaum Cohen, 55, journalist and essayist, Brooklyn, NY
Tracey Munn, 49, digital marketing specialist, Queensland. Australia
Jennifer Pellegrin, 37, cake designer and nursing student, Jurupa Valley, CA
Cohen: Imagine trying to move when you wake up in the morning and every joint—neck, shoulders, knees, ankles, elbows, wrists and feet—hurts so badly that you can’t bear to move at all. Imagine feeling so tired and in pain that it takes 15-30 minutes to muster the energy to actually get out of bed.
It’s definitely gotten worse in the 25 or so years since I was diagnosed, and it affects far more joints now. It is something that people without auto-immune arthritis have no conception of.
Munn: I have lived with psoriatic arthritis for going on 28 years. It’s changed over the years. When I was initially diagnosed, I had four toe joints involved. I now have 22 joints with active arthritis in most parts of my body. I have also developed lung inflammation where I struggle to breathe; a rare side effect of PsA.
How it feels really depends on where it is. The common places (finger joints and toes) feel like a sharp ache and throb. For knees, it can be the same but also quite tender with a continuous dull pain. I often get bakers cysts in the back of my knees; this basically feels like you have a painful ball behind your knee and can't bend it. I have limited movement in my neck; that is where the pain is worst for me and I get neck headaches.
Basically, psoriatic arthritis feels as though you have bruising around your joints each day that never goes away.
Pellegrin: I feel like I'm an 80-year-old woman trapped in a 37-year-old’s body. I have to set my alarm for an hour before I need to get out of bed to do stretches to wake up the stiff joints in the morning. I notice in the colder months it takes longer. I try to warm them up almost like a pre-workout but sometimes the pain just doesn’t let you. I sometimes lay in bed exhausted and just can’t move, I’ll be getting ready to go out and have to lay down because my body just can’t do it. I don't know of a time when some joint in my body that was affected by PsA hasn't ached, so I honestly can't say that I know what a flare feels like.
Q: Do others understand what you are going through?
Pellegrin:Psoriatic arthritis is invisible pain and an invisible illness. Sometimes I will be sitting and when I go to stand, I can't stand fully erect for even a few minutes. Since no one can see what I’m feeling, they think I am being dramatic.
To be honest, I don't know if most people get it. Most look at you like you are lazy and just don't want to do anything. I have the bad habit of overdoing myself and just trying to go and go and then the next day I can't move. I tend to overdo it just so people don't look at me like I am lazy and then I end up in so much more pain. I wish that people would realize that not all illnesses are visible.
Donaldson: The unpredictability and sheer level of fatigue of psoriatic arthritis is very difficult to understand when you don’t actually live with it.
Even if you find a medication or lifestyle adjustment that helps—even temporarily—it only makes life better, but it’s not a cure. Many people who see commercials for medications that help us, assume that if we take those, then we are magically better. Which isn’t how it works at all. That is understandable, because for other infections or colds, you take your medicine and you are cured. But for those of us with psoriatic arthritis, there is no cure.
Cohen: Flares are a constant ache in the affected joints. It is invisible to others except when they see me limping or taking stairs slowly because of the pain in my right knee.
My daughters and son are understanding. So are my boyfriend and my friends. What I hate is when strangers comment on it. I guess they’re trying to be sympathetic, but it makes me feel very self-conscious. I don’t want people to see my gimp. I want them to just see me.
Q: How often do you get flares, what causes them and how do you know one is coming?
Donaldson: The longer you live with psoriatic arthritis, the more aware you become of your personal warning signals. For example, my PsA will often flare up in my ears and make very noticeable changes to my hearing. If I wake up and can barely hear anything, then I know I’m headed for trouble. Other times, the weather will shift, and a flare will come out of nowhere. Sometimes it feels like danger lurks around every corner.
Cohen: The length of time between flare-ups ranges. It can strike randomly but is often a response to exertion, stress or what I’ve eaten. If I’ve eaten a lot of carbs and sugar at night, I pay a price in pain and stiffness the next morning and throughout the day.
I moved out of my home of 30 years last August as part of a divorce and into a new home with my college-age daughters. That was of course emotionally stressful but VERY hard work physically. It took me a couple of weeks to recover.
Pellegrin: PsA is always there. It can strike at any time and there usually is no warning. During the winter months it is more intense and the use of a heating pad in the morning or a pain patch is needed to help wake up the stiff joints. I use warm baths to relax.
Munn: Drinking alcohol, smoking, stress and cold weather have a negative impact. I notice this in my finger joints as they turn red very quickly when I have ingested something my arthritis doesn't agree with. Flares can last for a few days to a month; there is no knowing how long they will last. An onset of severe fatigue will commence, and I will want to sleep a lot, or not get out of bed. They are often accompanied by a depressive episode.
Q: What does a flare feel like?
Donaldson: I guess the closest I’d get to actually describing a flare is to imagine the second day after a surgery. Not the first day after when you still have pain medication in your system. But that second day, when all that your body has been through sort of crashes down on you. You feel sore in places you didn’t know you had, and you have an overwhelming desire to just try and sleep the pain away because the fatigue is so bad. That, or running face first into a brick wall is how I’d best describe a flare.
Every now and again you’ll get the visual elements like redness or swelling such as dactylitis (also known as “sausage fingers”). Some people have a corresponding psoriasis rash, but there are also many people who have psoriatic arthritis without active psoriasis.
The entire first couple of years post diagnosis was spent in a long, never-ending flare. It is difficult to discern specific starts and stops to a flare, like a light switch that is flipped on and off. I equate it more to a dimmer switch effect. Sometimes we are lucky and it is on low, and other times that switch is cranked so high that the pain and exhaustion makes us literally see stars.
Many days, the fatigue and exhaustion feel like I’m dragging my body through a waist-deep mud bath. I look down at my body expecting to see the mangled remains of my hand or my arm, only to see that it doesn’t look any different than the rest of my body, despite the throbbing and sometimes searing pain.
Q: What gives you relief?
Cohen: If I’m tired, I nap. Resting in the evening helps me feel better the next day. Swimming helps, too. My job as a writer is sedentary so any chance I have to move and gently work my joints and muscles really helps. I work out with a Pilates-oriented trainer once a week, who helps me with range of motion, flexibility and strengthening the muscles around the painful joints.
I self-administer a biologic once a week and take several other meds which have an anti-inflammatory effect and dull the pain. An injection on Friday night usually has me feeling substantially better by Saturday morning, though it wears off through the week.
The only thing that allows me to sleep through the night these days is to take acetaminophen with a melatonin at bedtime. I also take a CBD tincture, which is said to have some anti-inflammatory properties.
Donaldson: Sometimes, finding relief is elusive. You just have to ride out the storm and hope it passes sooner rather than later. Depending on the degree of the flare, it may require a round of steroids or a steroid shot. And in its true contradictory fashion, sometimes rest helps and other times gentle movement helps. In addition, sometimes heat helps and other times cold helps. Things that make us feel better vary, not only from flare to flare, but also person to person. Some people find relief with CBD products while others do not.
Munn: Diet and a healthy lifestyle work tremendously well. Living in a warmer climate and swimming daily also helps a lot.
Q: What advice would you offer to someone just diagnosed with PsA?
Donaldson: Be patient with your treatment and don’t be afraid to combine traditional and complementary therapies. I’ve had the best treatment experience by combining my pharmaceutical protocol with the autoimmune diet and yoga stretches.
Be aware of the toll PsA takes on your mental health. Note any changes in your mood or anxiety levels and don’t be afraid to discuss them with your doctor. PsA has a way of sneaking up on your mental health.
Pellegrin: Listen to your body. There will be days where you overdid it because you are still not used to living a modified lifestyle. I still have those days and it has been over 10 years since my diagnosis. Know that others won't understand what you are going through and it's going to mentally frustrate you and may even depress you, but we can't let our disease define us.
Cohen: Be gentle with yourself. It was probably pain that drove you to the doctor and resulted in your diagnosis. Get on top of the pain, be patient with yourself — chronic pain is exhausting—try to keep moving.