I wanted to share what a Psoriatic Arthritis flare is like. For me anyways.
What I have learned is all of my personal symptoms are pretty unanimous with Psoriatic Arthritis. That being said, these are my specific symptoms. You could have Psoriatic Arthritis and not experience these at all, or maybe you’re dealing with a different health concern and have had brushes with these issues as well.
Going through a flare is a scary experience. Any of these symptoms on their own could be related to any number of other health conditions, most minor and not terribly worrisome, but if you find yourself nodding along as you read, first off, I feel you! And secondly, I would implore you to go get checked out by your doctor. Especially if you are dealing with mysterious symptoms and have not yet been diagnosed.
HLA all up in my gene pool:
I am HLA-B27 positive. What the heck does that mean? HLA (Human Leukocyte Antigen) B27 is gene associated to autoimmune diseases, specifically inflammatory arthritis. According to medical literature, the HLA-B27 genetic marker is found in up to 90% of individuals diagnosed with spondyloarthritis. HLA-B27 is most commonly associated to ankylosing spondylitis, a type of spondyloarthtitis, which affects the spine, but it is also found in people diagnosed with psoriatic arthritis and autoimmune conditions affecting the bowels.
I found out I was HLA-B27 positive after my eye doctor ordered bloodwork. At the time, I was experiencing my second uveitis flare (this is inflammation of the eye which I will delve more into it below) within an eight month timeframe. It was my second ever eye flare and my foot was flaring for the first time, as well.
During my first experience with uveitis, I was told by the eye doctor I saw at that time that in most cases when a person gets uveitis it’s “nothing” when treated properly and it never comes back for 75-80% of people. My eye had responded well to the medicated eye drops and I had no lingering issues so I assumed I was in that 75-80%. When I found the white of my eye bright red again eight months later, I didn’t connect it to the foot trouble I was then also experiencing.
I was sent to a new eye doctor, a retina specialist, who examined me and confirmed the uveitis was back. He was concerned that it had returned so quickly when I had never had issues like this with my eye before. He also keyed in my foot problem and decided a blood test was in order. He was the first person to start connecting the dots.
I returned for my follow up two weeks later, eye all better, figuring I’d be released with instructions to call back if it ever happened again. Instead, I was told I was HLA-B27 positive and that my condition was likely related to an autoimmune disease. He recommended I see a Rheumatologist as soon as possible for further testing and diagnosis. I was told that I could expect the uveitis to return again at some point.
I was numb walking out of that appointment. I had peripherally heard of autoimmune diseases, but I had no real clue as to what I had just been told.
Testing positive for HLA-B27 does not necessarily mean you have an autoimmune disease, but it’s a pretty good indication something is going on and it is definitely a sign that you need to further explore what may be happening in your body.
Specific Areas of Recurring Problems:
Most individuals with autoimmune conditions have specific area of their bodies which are affected by the disease. Certain diseases attack one area of the body while leaving your other organs, tissues, joints alone. Some really lucky people have multiple autoimmune conditions which means several areas can be targeted by the body. An important note here; if you have an autoimmune disease you are significantly more likely to develop other autoimmune diseases compared to the average person. It’s like once your body learns to attack itself it decides it is a game and says, Hey! What else can we f-up?! It’s the gift that keeps on giving!
I say that in jest, but the truth is getting your autoimmune condition properly diagnosed and treated as soon as is possible is imperative to avoid further development of your current disease, as well as the development of others.
For me, the areas I have problems in are my eyes and my feet. Usually only one at a time, but I have had two flares where one eye and one foot was bothered at the same time. During a flare earlier this year, I had a flare going on in my right foot and as it was beginning to subside (but still very much there), my left foot decided to join the party. Walking was an “F” word and I don’t mean “fun”.
In the last few months, I have also begun to experience lower hip pain and some slight swelling and pain in my finger joint. I’ll speak more on these below.
Foot pain and sausage toes:
Sausage toes?! Yes. You, unfortunately, read that right. Sausage toes.
While the first flare I had was in my eye, the flares in my feet have been more prominent and have affected my life more drastically so I’ll start with what happened here first.
When I have a flare in my foot, the first thing I recognize is a dull ache on the bottom of my foot, just below where my toes meet my foot. I’ve learned that if I’m feeling this I can expect a flare within a couple of days. Babying the foot doesn’t help. It’s coming and so far, I haven’t been able to figure out anything to stop it. The anticipation is the worst. I can never gauge how big of a flare it’s going to be, or how long it is going to last.
The next thing that happens is the slight discomfort transforms into pain. Sharp, specific pain at one spot on the bottom of my foot. The pain is there without pressure and excruciating when pressure is applied. Pressure like taking a step, or even just putting my foot down on the ground. Can you imagine any time you place your foot down feeling so much pain you do not want to even stand?
There is extreme swelling and redness in my foot at the afflicted area. My foot will actually be hot to the touch.
The sexiest part of it all is the toe connected to the joint having the flare balloons up to resemble a cocktail weenie. Seriously, it looks like someone stuck an air pump to my toe and overinflated that sucker to within a centimeter of explosion. This little phenomenon is called dactylitis (or sausage digit. Cute right?). Dactylitis is the swelling of the entire finger or toe. It’s totally adorable and super fun in the summertime… living in Florida….
The joints affected in my feet are at the base of my toes, but cause inflammation to the entire toe. My toes don’t ever hurt. There’s pressure from the swelling, but it looks worse than it feels in the toe itself. The problematic area is that base of the toe. The toe joint extends into your foot, ending behind the bottom of the toe and in the area of the foot where the ball of your foot is. Because this area is affected, it’s extremely difficult to walk. It’s often a conscious effort not to limp, and even then I sometimes can’t avoid an awkward gait. My foot swells to the point where I can only wear certain shoes; think stretchy ballet flats and loose tennis shoes.
And all the while I try to hide what’s happening. My husband sees what’s happening at home, but this is not something I complain about to anyone else. I actively try to make sure no one else notices. I can’t let this affect my job negatively. I can’t let this be seen as a problem or a weakness. I behave as normally as possible while having an anything but normal day.
The worst of the flare can last a few days to a few weeks. My first foot flare was a couple of months because no one knew what was going on or how to treat it. But even out of the worst part, the swelling and discomfort linger for weeks.
Once the flare subsides I get to see what damage occurred. Because my first foot flare was so bad and extended for so long, I have permanent damage to the middle toe joint of my second toe. I call it my Raptor Toe because curves up like a Raptor’s claw. My boys are really into dinosaurs so I guess that makes me a little cooler in their book. I’ll take it. A have two other toes now that have a slight, but much less pronounced curve because of subsequent flares.
Seeing Red:
I see London, I see France, I see redness in a mirror’s glance.
Uveitis.
Uveitis is the inflammation of the uvea, which is located in the middle layer of the eyeball. Uveitis symptoms consist of pressure and/or pain to the eye, sensitivity to light and redness to the whites of the eye(s). The inflammation and swelling can cause permanent and irreversible damage to the eye making it critical to get the correct diagnosis and treatment ASAP.
Uveitis was my very first symptom associated to my Psoriatic Arthritis. I was six months pregnant with my second son when I woke up one day and noticed redness in the inner corner of the white of my right eye. I figured it was irritated and forwent wearing my contacts that day. The redness didn’t go away. After a day or so it got worse. I began experiencing extreme pressure in the eye. I also became extremely sensitive to light. Any changes in my light source, whether it be looking at a computer screen or going outside caused immediate pain and my eye would snap to a slit as it adjusted.
I also felt like a monster. My eye was so red that I hated for anyone to look at me. I felt like it would hurt them to look at me. I avoided eye contact a lot and kept to myself as much as possible. I ostracized myself on a small scale, and I felt lonely as a result.
I made an appointment with my regular eye doctor, who got the diagnosis right, but because I was pregnant he was leery of treating me. He referred me to a specialist who incorrectly diagnosed me with conjunctivitis and told me it would go away in a matter of days to a week. Never mind I had been dealing with it for a freaking week at this point. Now, I have had pink eye before and I knew this was NOT pink eye. The specialist told me to call back if my vision was effected.
Well, the next afternoon, I felt my eye was seeing a little blurrier than normal. Psychosomatic or real I honestly am not sure now, but at the time I swore my vision was off. I called back to the specialist and (thank you God) was immediately scheduled for an appointment with a different specialist. He got the diagnosis right and put me on eye drops. Within 10 minutes of putting that first drop into my eye I felt sweet, sweet relief. The pain and pressure were gone! Within a day the redness had subsided greatly.
I have had several minor flares since that first one. Now that I know what to do, as soon as I feel the pressure or see any redness I can’t attribute to being tired or contact irritation, I go to my drops. I’ve kept my eye flares under control pretty well with this method. That is until my most recent.
About a month ago I woke up and felt slight pressure and saw light redness to my left eye. I immediately started my eye drops (a steroid drop called prednisolone). The pressure vanished and the redness seemed to get better. The funny thing about this time was the redness never fully went away. The redness wasn’t even bad this time. My husband could barely see it after I pointed it out to him. It was there though. Some days it would tinge a bit worse and others it would appear to dissipate slightly, but it never went away.
I had an eye appointment scheduled for a routine follow up in two weeks so I was planning to get by until then.
And then…. One afternoon at work, I noticed I was seeing a little blurry out of my left eye, the one currently being affected by the flare. There was a slight haze that wouldn’t go away. I got home and took a close look in the mirror and saw a cloudy spot on my iris. At first I thought it was a really thin eye boogie. I wiped at it but nothing happened. I wiped a couple more times and confirmed it wasn’t moving and there was nothing there to move. To my horror, I realized this was in my eye.
I low key freaked out for the rest of the day. Once the boys were in bed, my husband prompted me to tell him what was going on because he knew something was up. I calmly told him what I had seen in my eye and how I wasn’t seeing as clearly out of that eye. Then, I lost it. In a puddle of tears I told him I had gone to Dr. Google and it might be cataracts or something worse. What if this could not be fixed? What if it got worse? I was terrified I was going to lose my eye sight.
The next day I scheduled an appointment and was able to be seen by a doctor who worked with my retina specialist. As it turns out, there was a spot and I wasn’t imagining things or overreacting. It was the uveitis (not cataracts, whew! But also a lesson in Dr. Google not being the best resource people). The inflammation was so much that I had cells attaching to my cornea, causing the blurred vision and spot. I was put on new medicated eye drops and an oral steroid.
It was scary. I’m still on the drops and oral steroid. I go back for another follow up tomorrow. I am happy to say that the spot is gone and the redness is as well. That was the case at my last appointment, but I did still have inflammation the doctor could see looking in my eye. Fingers crossed for good news.
Fatigue:
Now this is a much broader topic and can be associated to just about anything and is not specific to Psoriatic Arthritis or autoimmune disease.
I had never experienced real fatigue until having kids. Moms you know what I am talking about! The problem was that even after my kids were sleeping through the night, I was still waking up feeling tired. Some days I would wake up energized and by 9 am I wanted to go back to bed. I’m not a napper by nature and I was finding myself ready for a siesta every day.
What I realize now it that my body has been fighting for my healing. This constant effort to heal drains me of energy and stamina. I’ve been prescribed supplements (B-12 and adrenal support) which have definitely helped, but I want to get the root cause healed so that my energy levels bounce back to normal.
Thyroid Issues:
Thyroid issues are also not specific to Psoriatic Arthritis. Thyroid issues can be caused by any number of things, but I am mentioning it because a lot of thyroid issues go undiagnosed. As I mentioned earlier- if you have one autoimmune disease, there is a higher likelihood you develop others. Thyroid issues, like Hashimoto’s and Graves Disease, are autoimmune diseases that affect your thyroid.
I’ve struggled with my thyroid off and on since the birth of my youngest. I was seen by an Endocrinologist who ran a battery of blood tests over the course of a several months. She found that I was subclinical for hypothyroidism. When the tests were repeated, my numbers were back to normal and I was given a clean bill of thyroid health.
Since then, and about a year after my Psoriatic Arthritis diagnosis, I have noticed big indicators that my thyroid and hormones aren’t functioning properly. The fatigue is one clue. My cycle is inconsistent. My hair is thinning and falling out. Like a lot. I’ve lost a vast volume of my hair over the course of the last 9 months. I joke that I will be bald soon if it doesn’t stop. I’m not laughing that much about the joke anymore. I’ve also tested positive twice now for thyroglobulin antibodies being high. This is a big red flag for Hashimoto’s and would mean hypothyroidism, or my thyroid functioning slowly.
I have an appointment tomorrow with one of my other doctors to learn more about what course of action we’ll be taking here. Getting my thyroid back in check is a huge priority. The thyroid is the control center for a lot of important hormones. If it is even the slightest bit out of whack then the rest of you is going to fell those effects.
Oh My Aching Back:
This one I saved for last because I have not gotten a diagnosis of anything involving my back, but I suspect with recent problems that have popped up, something is coming in this vein as well.
Several months ago I had extreme discomfort and inconsistent sharp pains in my lower right back and hip area. The ache in my hip was with me throughout the day and all day long I’d have lightening rods of pain shoot through my hip, spreading to the top of my leg. The problem was intense for a several days, bringing back my sweet limp, and then moved to general discomfort and residual, occasional pain. I would think it had finally gone away and then I would stand the wrong way, you know up, and the agony would strike again. This lasted for four weeks or so and then went away. Stretching seemed to be the only thing that really helped. Sitting for long periods of time made it worse.
I was feeling really good again and had not experienced any flares or symptoms for months and decided to try jogging again. I use to be an avid runner clocking 3-5 miles a day, 4-6 times a week. I knew to take it easy and started jogging a slow half mile at a time. This lasted for a couple of weeks and I felt ready to push a slow and steady mile. And I did it! Was I back to my days of a runner again?! Not. So. Fast.
The day after one of my runs, my right hip was killing me again. Two days later I had a minor flare in my foot and one of my finger joints was swollen and hurt. Sonofa—–!
Was the hip pain part of my Psoriatic Arthritis?
Research quickly led me to learning the exact spot I was hurting is associated to Sacroiliitis, an inflammation of the sacroiliac joint and associated to ankylosing spondylitis. Yay.
I’ll be bringing this to my Rheumatologist’s attention at my next visit. I had X-Rays done on my back and hip areas during my initial Rheumatology exam almost two years ago and nothing abnormal was noted at that time.
I know this was a long one. I appreciate if you stuck it out to the end. It’s important for me to fully express the issues I have dealt with and continue to deal with on a regular basis. It’s important for me to try and show what this is like. It you have no reference point, consider yourself lucky. I would not wish Psoriatic Arthritis or any other autoimmune condition of my worst enemy. However, if you do have a reference point to any of the issues I talked about here, know that you aren’t alone.
This disease can be very alienating because it is hard for people who don’t have it to understand. Autoimmune diseases are called the invisible disease for a reason. A lot of what I, of what we, deal with can’t been seen by others. So much of it is internal. Our bodies are attacking us from within.
Even as I learn more about my condition, it’s sometimes just adds to the confusion and chaos. There are always a lot of unknowns with this. As I move forward, I will be educating myself to the best of my ability and sharing what I can here.
You aren’t crazy and you aren’t alone.
*DISCLAIMER: I am not a doctor or health care professional. I am not licensed, nor qualified, to give medical or nutritional advice. My posts are not meant to diagnose or treat. They are meant to be informative. I am sharing my experience as someone who has suffered with and continues to live with autoimmune disease. Please consult with a doctor, nutritionist or medical professional for any medical needs and/or questions.*
