Let me start by clarifying that lupus is unique to each and every one of us lupies. One person may have mild symptoms of a simple rash while others may have severe involvement that affect heart, kidneys and lungs. Also, autoimmune diseases come with other autoimmune issues such as Sjogrens, Hypothyroidism, Hashitmoto’s Thyroiditis, Inflammatory Bowel disease and Vasculitis to name a few. So it’s a cluster of problems with one affecting the others. For example, when my lupus flares, it can set off a chain reaction that travels systemically effecting different organs and areas on my body. Hence the name includes the word systemic, Systemic Lupus Erythematosus (SLE). Lupus is an invisible illness that most people know nothing about.
What does it feel like to have lupus?
It’s complicated! My body is at war within itself where the fighter cells attack healthy cells. It’s a downright mutiny happening every day 24/7 and every day I pray that the combatants do not win. For most people, it’s a given that they will feel well unless they come down with a cold or flu or trauma/accident. In reality, I never know how I’ll feel one minute to the next, let alone know how I’ll feel each and every day. Fatigue is guaranteed and it’s debilitating however the severity varies. Some days it takes effort to get out of bed and don clean pj’s while other days I can take a shower and complete a few light chores. Everything takes effort and requires more time than your average person. I do not get to live a normal active life. On a good day, my symptoms are still there but I can “push through”. When I enjoy a day out and about or lunch with friends, I pay for it by being incapacitated for a couple days requiring recovery time.
Let’s talk about the fatigue. It’s the most common and debilitating of the symptoms. It feels like walking around with a weighted blanket almost suffocating heaviness. Everything is an effort and I struggle to move every day. This fatigue is life changing. Even if I rest and get 8 hours of sleep I continue to feel tired and worn out, absolutely exhausted. I can prepare a meal but need to rest afterwards Needless to say, I’m worn out easily and usually need a nap by the middle of the day or late afternoon. I’ve learned to budget my energy allowing frequent rest periods, what I call “do-a-little-sit-a-lot”. , It can be alienating when you suffer from an invisible disease. I don’t have the energy to maintain relationships these days. Most people don’t understand anyway. I’m careful who enters my inner circle because I’m self conscious and fear judgment.
The next most common symptom of lupus is pain and inflammation. Joint inflammation was one of the first signs that led me to seek advice from a physician. By the way, it took about 10 years to diagnose my lupus due to random joint pain that resolved with over the counter anti-inflammatories. Joints affected are usually wrists, hands, fingers, elbows, feet, ankles, knees, hips and even my shoulders. The swelling affects each joint causing it feel like the space is overfilled with fluid and loose like it’s going to dislocate. The swelling that accompanies that joint pain is painful when the skin to the affected area feels like it will burst. I’ve had cortisone injections to just about every joint mentioned above. During a flare, I suffer from extreme joint pain and weakness. (During a flare the “normal pain level increases exponentially. It’s a different kind of pain than the “usual” pain.) Hip pain is the worst of my joint pain and is the only symptom that occurs symmetrically. Both hips hurt, burn and have limited range of motion. This directly affects my mobility making movement difficult and painful therefore It’s painful to walk, There are times that due to severe hip pain. I can barely walk let alone make my way up stairs. I’ve literally crawled up the stairs to my second floor bedroom because the muscles are weak and it’s just too painful. My hands and fingers are affected too. My knuckle joints and wrist become tender and swollen. It makes it difficult to hold a cup or glass and button my shirts or pants. So I’ve learned to plan ahead with sports bras, pull on pants and shirts along with slip on shoes. Lupus affects the nerve endings in my body, causing my thighs, calves and feet to burn and tingle. Numbness and burning with tingling sensations run up my arms and down my legs. This frequently happens in the evening or during the night. It makes sleeping difficult.
Fevers are a common side effect of all that inflammation. Fevers occur often but lasting approximately 12 to 20 hours. They occur mostly in the evenings lasting throughout the night. It completely incapacitates me as my aches and pains become amplified. This happens at least once a week and more frequently as the inflammation increases. Fevers at night also contribute to lack of sleep.
Insomnia plays a part in how my day will unfold. Pain can keep me up at night and sometimes I toss and turn trying to find a comfortable position that eases my joint pain. Often I use pillows to support my arms and legs. Lack of sleep affects my ability to do anything and everything. It obviously adds to the fatigue.
Every day is guaranteed to begin with morning stiffness. The stiffness is debilitating, my joints do not bend without pain therefore stiffness and pain go hand in hand. The stiffness lifts slightly after I start moving. It takes anywhere from minutes to several hours. It I stretch with some simple yoga poses every morning, it loosens up my joints making it easier to get moving with less pain. The stiffness returns after sitting for long periods of time and my body locks up again. When I get up from a chair it takes a bit for me to be able to straighten up and start walking. It’s a challenge to accomplish tasks when my body is too painful to move. The level of joint pain and stiffness varies. Some days I can move with minimal pain while other days I’m bound to the couch because of pain that adds to immobility.
Taking Inventory…. Let’s start from head to toe;
I get headaches, brain fog, forgetfulness and trigeminal nerve inflammation which affects my right eye. The trigeminal nerve inflammation also causes pain along the nerve tract along the right side of my face from my right cheek to above my ear and over the parietal area of my skull. Headaches are common, they come and go frequently. When it’s severe, my head pounds and I can feel my heartbeat pulsing in my ears. Some days it’s so bad my head feels like it will explode. There are days that I’m easily confused by brain fog which causes difficulty forming a sentence or remembering a name or familiar directions. This is especially disheartening for me since I enjoy writing my blog and reading. This past year lupus caused inflammation in my eyes resulting in retinal vasculitis. That caused blurred vision and light flashes with eye pain. I was treated with methotrexate and prednisone.
Sjogren’s syndrome, accompanies lupus for some of us, causing dry mouth and eyes along with any other mucus membranes in the body. Due to the dry eyes, I require rewetting eye drops several times a day. In addition to eye dryness, there’s mouth dryness too. To combat it, I use Bioteen mouthwash as a lubricant. It helps to avoid cavities and mouth ulcers caused by the dryness. Lupus has attacked my thyroid causing thyroiditis and hypothyroidism.
My skin is sensitive and I need to be aware of the products I use. I’m super sensitive to the sun, called photosensitivity. When I’m exposed to UVA and UVB light I break out in a rash and the exposure can cause a flare up. I need to cover-up when I’m exposed to avoid problems. When I’m driving I need to wear long sleeves or sun screen in order to avoid getting a rash. Sometimes no matter how careful I am, I can still break out. When that happens my skin itches and tingles, it burns. When my lupus flares I can exhibit a butterfly rash across my face that covers my cheeks and nose. It’s embarrassing. When I have a flare, I can develop painful sores in my mouth and nose, making eating and drinking a challenge.
I’m nauseous every day! It’s terrible. The nausea is there if I eat and if I don’t. My stomach always feels upset. There are a lot of days that I eat rice, potatoes or bread since they’re easily disgusted but not nutritious. The BRAT diet of bananas, rice and toast is a staple in my life. I take zofran which is an antiemetic medication to decrease the nausea. Another pill added to my arsenal. Also, I need to monitor the foods I eat since some foods like nightshades can increase inflammation or cause a flare. Some days I have diarrhea. Inflammation can occur in the stomach lining causing gastritis. Also the large and small colon can become inflamed causing irritable bowel syndrome.
Frequently, I feel my heart beating wildly, causing me to feel dizzy, exhausted, and anxious. I have an idiopathic heart rate since lupus inflammation has found its way to my heart. Sometimes I experience chest pain with the usual palpitations. It is discouraging and makes me anxious. I’ve learned not to catastrophize however I can’t help but worry and my mind races, wondering, Is it a heart attack? Unfortunately, I’m all too familiar with cardiac complications since I’ve been through pericarditis several times. I start out in denial then, I assess old symptoms vs. new symptoms and if this is the usual pattern I then ride it out until it passes. If it gets worse or new symptoms develop I’ll go to the ER knowing those doctors aren’t trained in dealing with lupus. So, they’ll rule out anything life threatening and send me home without answers. I currently have pericarditis that’s being treated with high dose steroids and cytoxic agents and biologicals, all of which come with their own hellacious side effects. I’ll cover that in a different blog.
That about sums up my symptoms caused by the traveling circus of inflammation called lupus. Let me add, on really bad days, I feel all of these things at the same time. Even If I take my lupus medications as directed, my condition can flare. Flares are episodes when my symptoms exacerbate and I feel worse than “usual”. They can occur for months or years. Triggers include stress, overwork, lack of sleep/rest, sun and fluorescent light exposure, injury and illness like the cold or flu. Some triggers cannot be prevented. For example, a flare is stressful which leads to more stress that causes more fatigue and complications.
Lupus patients often refer to this disease as “The Wolf”. Lupus is Latin for wolf. In the 18th century, when lupus was just becoming recognized as a disease, it was believed to be caused by a wolf bite. We now know it’s not but lupies still use the term. I’m constantly wondering if the wolf is going to knock down my door.
Then there’s disease progression, it’s been a 30 year journey and new symptoms have developed but nothing seems to resolve. I don’t get a break from most of these symptoms and it can all become overwhelming. I spend hours managing my health; doctor appointments, picking up prescriptions, insurance inquiries and taking copious amounts of medicine. There are days I just want to cry. The disease takes its toll on career, friends, family and relationships. It literally affects every aspect of my life. Lupus affects of your emotional wellbeing too. It plays crazy mind games making me feel useless and unworthy. I never feel safe, never knowing what will be affected next or how bad it will get. Many days I feel defeated. My days are now altered due to my forced lupus lifestyle. Nobody would know the goals and aspirations I once had but because I’m too tired to achieve them. I did not choose this nor did I do anything to cause this illness. I have to admit that I’ve had days where I hate myself and my life. If I go too far down that rabbit hole it will lead to depression. I’m learning to accept that I’m not the me I used to be and take pride in my softer more laid back side of myself. I’ve learned to live within my limits, abiding by what my body can and can’t do. I’ve adapted my schedule and set boundaries. I rarely make plans with people because I have no control over how I may feel that day. My reply to invitations are we’ll see or maybe. I know it’s frustrating to people who don’t understand but I don’t feel that I can commit anymore. When I must commit to an activity like a special occasion, I rest up the day before and medicate ahead of time. Lupus is humbling as well. It’s chipped away at my self esteem. It’s not in my nature to ask for help but when I do reach out, I’ve exhausted my options to resolve the issue on my own.
I’ve learned to take responsibility as a patient by doing my part, learning as much as I can about my illness. I try to stay current on the latest treatment options. I’m also on a couple online support group sites. Every doctor visit requires prep time composing notes with symptoms and questions. Once seen by the doctor, it’s followed by some sort of new instructions in addition to the lab tests or procedures. I have a binder to reference my comings and goings, it’s extremely helpful to compare and review history however the digital portal to the hospital makes life easier since all doctors can see info with a visit summary and no binders to carry. I do travel with a quick reference sheet of history and meds.
Treatments are different based on the severity of symptoms and not all treatments work for everyone. We’re all individuals and what treatments work for one doesn’t necessarily work for the others. Some people like myself are sensitive to certain medications having hypersensitivity reactions that cause adverse effects like swelling, vomiting or allergic reactions. Anti-inflammatory drugs, anti-malarials, and steroids, such as prednisone, are used to treat lupus. Cytotoxic chemotherapies similar to those given in the treatment of cancer are also used to suppress the immune system. In addition, treatment options have been slow to hit the market. Until recently there weren’t any new drugs developed in more than 50 years. Quinine was introduced in 1894 while most modern treatments for SLE appeared in the second half of the 20th century: glucocorticoids (1948–1952), quinacrine (1951), cyclophosphamide (1954), hydroxychloroquine (1956), azathioprine (1957) and mycophenolate mofetil (1980s). Progress is being made, at the end of the 20th century and the beginning of the 21st century Benlysta was approved by the fda to treat lupus specifically and Saphnelo was released in 2021! However they both come with serious side effects. Just once, I’d like a medication to solve the problem instead of trading one set of symptoms for another. Better yet, I’d really love a cure!!
My world view is very different from everyone else’s. Everyday life issues become exaggerated for lupies. Every task requires more energy to complete. I don’t have the required energy to get through the day let alone the added energy to deal with life’s unexpected problems. The complexities of this disease is that it requires a tedious balance between survival and a conscious choice to creating a life well lived. I like this phrase, a delicate constitution with the heart of a Fighter. It describes lupus warriors. If you’ve read this far,
I appreciate your patience and that you took the time to listen and learn. I started this blog 6 years ago on the 20th of the month of May. 64 posts later, I’m still trying to educate and express my feelings about lupus. I do not write for sympathy but in hope of creating awareness and understanding.
Living With Lupus 