By Jorie –
The clock reads 3 am. I turn over in my nest of bed covers, pain radiating through my side in my hip. I can’t find a position that isn’t painful. I rest there, joints stiff as a board, begging for sleep. I look at the clock again: 4:15 am.
And then, in further despair, I realize the migraine is coming on too. “Painsomnia,” a term we spoonies use for lack of sleep as a result of pain, has officially hit. Sleep isn’t going to come tonight, and I’m going to have an achy day ahead of me. At least I may have caught this migraine early—a bright light in the midst of the hurt.
The sun rises and peeks through my window as my day finally begins. My hands shake as I take my morning medications, struggling to hold the full glass of water. Yes, the glass of water is too heavy for my weak hand in the morning, joints tender, stiff, and sore.
I slip on my copper support gloves and move to the bathroom to brush my teeth—an effort.
I paint on my makeup—another strain. And so on…
“I can’t get frustrated today. I must be patient with my body,” I tell myself every morning.
This is just a glimpse into a typical morning with a rheumatoid arthritis flare. Needless to say, mornings aren’t my friend, nor anyone’s who lives with RA.
This is a fairly common, yet silent, scenario for me living a life of chronic pain. I’ve found many ways to cope, learning the ropes of reducing pain to the best of my ability and managing mentally as well. It’s physical as much as it is mental.
I don’t murmur a word to many people as I go about my day—who wants to hear from a 24 year old that her joints hurt? Not many. Who cares, really? There isn’t much sympathy for me—ageism and ableism are alive and well in our society. That being said, I’ve become pretty good at the pain poker face.
The Chronicles of Comorbidity
Living with migraine typically isn’t a solo journey. Most of us have a diagnosis of other health conditions that happen in synchronization with migraine, which are called comorbid conditions. We are predisposed to these conditions, one way or another, whether because we have been diagnosed with migraine disease, or because we were diagnosed with another illness that has left us with a higher risk of developing migraine. It’s a gamble.
It is estimated that about 61% of migraine and headache sufferers have additionally been diagnosed with a chronic pain condition or other chronic illness. Migraine just loves company.
Rheumatoid arthritis is one of those conditions, and is one that began for me around the age of 20. What I thought was a simple muscle cramp in my hand one day turned into weeks, months, and now a few years of what my doctor finally determined to be RA.
What is Rheumatoid Arthritis?
(Above: Diagram showing the comparison between normal, healthy joints and the effects of rheumatic joints. Via National Institute of Arthritis and Musculoskeletal and Skin Diseases)
As an autoimmune disorder, rheumatoid arthritis refers to a sub-type of arthritis in which the immune system attacks the joints, synovium (connective joint tissue), and other soft tissues of the body. Yes, my body actually attacks itself.
Let’s discuss autoimmune dysfunction to get a better understanding of what that really is, because I’ve found that there is often some confusion about it. Basically, having an autoimmune disorder means that the immune system is not functioning as it should—it mistakenly perceives healthy cells in the body as intruders (bacteria, viruses, etc.) and attacks them by creating inflammation in those areas to try to flush them out.
In RA, the body attacks the synovium, joints, and tissues and over time the impairment creates an abundance of pain, soreness, swelling, and even disfigurement. Unfortunately, the damage done cannot be reversed and there is no cure for RA, just treatments that help ease symptoms.
Symptoms of RA vary and can be individual to the patient, but most commonly include localized pain, redness, soreness, and swelling of the affected joints, stiffness that is most pronounced in the morning, nodules and disfigurement of joints most often in the fingers, fatigue and loss of energy, and occasional low-grade fevers. RA can affect any joint in the body, from head to toe.
Scientists estimate that about 2.1 million people, or between 0.5% and 1% of the U.S. adult population, have rheumatoid arthritis. It is present in all races and age groups, and occurs most frequently in women—75% to be exact.
The condition ranges in severity and pain level, too. Some patients are extremely high functioning and others are confined to disability. I am fortunate enough to live a relatively normal life, however there are days that my flares are excruciating and practicing daily, seemingly mundane tasks become mammoth in comparison to a “good” day.
Contrary to popular belief, RA can even begin in childhood (usually referred to as JRA, or Juvenile Rheumatoid Arthritis). Many people gawk in disbelief when I tell them I have rheumatoid arthritis, because as far as public knowledge is concerned, it’s an illness reserved for the older crowd. I couldn’t tell you how many times I’ve heard the phrase “you’re way too young to have that!”
However, because RA is an autoimmune disorder, the type of arthritis it exhibits is not reliant on wear and tear with age or activity such as with osteoarthritis. RA is the most common form of arthritis in younger people such as myself, however osteoarthritis is the most common form among all age groups, especially in the elderly.
RA is also believed to be mainly genetic, which makes sense in my case—my mother and many of my mother’s relatives have rheumatoid arthritis and other autoimmune disorders. Scientists have concluded that autoimmune dysfunction in general tends to run in families and can be handed down genetically.
However, genetic research is progressing more each day. We now know much more about the genes that contribute to RA and other forms of autoimmune dysfunction. According to the Arthritis Foundation:
“Researchers have shown that people with a specific genetic marker called the HLA shared epitope have a fivefold greater chance of developing rheumatoid arthritis than do people without the marker. The HLA genetic site controls immune responses. Other genes connected to RA include: STAT4, a gene that plays important roles in the regulation and activation of the immune system; TRAF1 and C5, two genes relevant to chronic inflammation; and PTPN22, a gene associated with both the development and progression of rheumatoid arthritis. Yet not all people with these genes develop RA and not all people with the condition have these genes.”
(Above: An example of my left hand, which affects me the worst, on two different days. The left photo shows my joints inflamed on a “flare” day, and the right photo is a “good” day. In both photos, however, you can still see that my finger joints are beginning to twist and turn — this is a characteristic that my mom also has).
How RA and Migraines work together
It is theorized that RA can affect headaches because of the inflammation it causes in the joints. Apart from migraines, many RA patients also battle chronic daily headaches as a result of the swelling in their cervical vertebrae and facial joints, such as in the jaw, which often presents as TMJD (temporomandibular jaw disorder). I personally have struggled with daily headaches as well as TMJD symptoms, likely a combination result of RA and chronic migraine.
Just as I do with migraines, I also have specific RA triggers that exacerbate my flares. Most notably, these include weather and barometric pressure changes, over-exertion or heavy exercise, and even stress. When I have migraines I’ll frequently have an RA flare as well to go with it, leaving me to believe that just getting a migraine itself is a trigger for an RA flare. Of course.
Treating RA and migraines together can be a difficult balance—I have to be wary of rebound headaches and migraines when managing RA pain. I am generally very conservative with my pain medication as a result of this and tend to only medicate when there is a dire need. Opioids are a no-go for RA (just as they often are with migraines) because opioids don’t properly target the pain. Anti-inflammatory medications, or NSAIDs, are usually the best course of action if taking medication, which is what I stick to as well.
Living with RA and chronic migraine creates a mental health obstacle too. I’ve already touched on the fact that I live with bipolar disorder and anxiety/panic disorder in previous posts; having RA leaves no exception there. The anxiety of the next flare is always impending, just as the anxiety of my next migraine attack looms over me. My mood tends to swing while managing the two. I experience a lot of irritability on top of the anxiety, as well as depression. That’s all pretty inevitable with chronic pain, but I try to keep an upbeat, positive attitude.
Taking care of mental health while living with chronic pain disorders is extremely important. It’s easy to fall into that pit of despair and panic—will my hands ever work properly? Will my strength ever return? Will I ever get a good night’s rest? Will the pain ever just go away?
These are puzzles I may never solve because the thing is, there is no cure for RA just as there is no cure for chronic migraine. Autoimmune disorders are there for life—doctors only know how to manage them and sometimes send them into remission. So, for now, I am thankful that I can keep my pain relatively in check most days, and on the particularly agonizing days, I just keep my eye on the light at the end of the tunnel.
Mindfulness practices are essential to my well being and every day I try to make sure I do some activity to help calm my nerves, show myself some compassion, and just breathe. It’s just a bad day, a bad flare… not a bad life.
Living with and treating my pain
As I mentioned earlier, my treatment regimen for RA and migraines is almost one and the same. I have not started a prescription medication for RA yet—I’ve chosen to try to target my symptoms and treat my pain individually before going on a biologic, immunosuppressant drug, or other powerful daily NSAID medication. The most powerful medications I take right now for RA management are prescription Indomethacin and Voltaren Gel, as needed.
That might not last, though. In order to keep RA from progressing into major joint deterioration, requiring joint replacement surgeries and other extreme measures, early prevention is key. Soon I may have to bite the bullet. But today isn’t that day.
(Above: Wearing my trusty copper support glove on the left, and on the right I’m wearing my hand brace and holding CBD oil for joints from Blue Ridge Hemp Co.)
Right now, my RA is mostly focused in the joints of my fingers, hands, and wrists so my main course of action in treating that is using my hand braces and copper gloves from Dr. Arthritis, which help support those joints and reduce swelling. Since my RA isn’t exceedingly progressed, I don’t have it in all of my joints. Other than my hands, my next most affected areas are my hips, shoulders, and knees.
I also use many different topical creams and gels to manage the condition in the rest of my body. CBD oil joint salve from Blue Ridge Hemp Co. is one of my favorites, as well as Tiger Balm, and a custom epsom salt bath blend from my massage therapist—all of which I also use for migraine relief. Plus, heat and cooling therapy are staples in my routine.
Other holistic treatments help, too. As I’ve touched on in previous blog posts, I use acupuncture, physical therapy, and medical massage to manage migraine symptoms. I also use these to manage RA. It’s a good way to kill two birds with one stone, so to speak.
Looking to the future…
I don’t know exactly what my future holds living with RA and chronic migraine, but I do know that I’ll have both for the rest of my life.
Sometimes I look to my mother, who also has had RA since my age and from whom I inherited the disease. Like me, she is another one of those individuals who puts on the poker face even though she has extremely painful days. Why do we who live with chronic pain feel we have to do that? Is it for the comfort of others? Is it because we try to deny our pain to ourselves?
I’ve watched Mom as she has struggled to pick up a pen and sign her name on paper, to carry a mug of coffee, or open a jar of jam. I’ve heard her in the middle of the night getting up and down, unable to sleep from the pain. I may even have shared tears with her. I may even have experienced those exact things. My Momma and I have a special bond in pain that I share with no one else, because she is no stranger to migraines either.
So, in reality, I know that’s what I have to look forward to. But there’s something else my Momma passed down to me, and that’s unrelenting strength and willpower. She gets through her pain everyday with more grace than I could ever imagine. So that’s my goal: make my pain as graceful as possible, and transform the pain into something valuable.
(Above: Me with my Momma, who is one of my biggest heroes, cheerleaders, and inspirations in living a life of pain.)