Although most people have likely heard the term “lupus,” many are still unfamiliar with the reality of how the disease affects people – including the particular symptoms and side effects it can cause.
Lupus is a chronic autoimmune disease that can affect just about any organ or body part. It causes your immune system to mistakenly attack your body’s healthy tissue, leading to inflammation, pain and damage to various parts of your body. According to the Lupus Foundation of America, approximately 5 million people worldwide have lupus, and the disease is nine times more common in women than in men.
Because lupus can affect any organ system, symptoms can vary. Symptoms can also come and go and change over time, making the illness tricky to diagnose. You may experience periods of increased disease activity, known as flare-ups, however, periods of disease remission are also possible.
Whether you or a loved one lives with lupus, it’s important to talk about the effects it can have and better educate both the general and medical communities about all the symptoms that might tag along with lupus.
To help raise awareness of some lesser-known lupus symptoms and remind anyone struggling that they’re not alone, The Mighty teamed up with the Lupus Foundation of America (LFA). We asked our Mighty community and the LFA community to share a surprising symptom of lupus and what it’s like to experience it.
According to the LFA, hair loss is a common side effect of lupus and can occur as a result of the disease itself or medication used to treat the disease. Whether or not the hair grows back often depends on scarring. If you’ve experienced skin damage due to discoid lesions or scarring, hair loss may be permanent. Widespread hair loss without scarring is often reversible. The best way to control hair loss is to control disease activity, so if this is a symptom you’re struggling with, be sure to talk to your doctor.
If you’ve struggled with weight fluctuations since developing lupus, you’re not alone. A 2011 study found that women with lupus are more likely to be affected by obesity than the general population. Weight gain is not always in a person’s control. Many people with lupus may manage their symptoms with steroids, which can cause increased appetite, water retention and weight gain.
It can also be difficult to exercise some days if you’re struggling with symptoms, undergoing certain treatments or even recovering from surgery. Always check in with your doctor before starting any new exercise routines.
Lupus can affect just about any part of the body including the eyes. These effects may include “changes in the skin around the eyelids, dry eyes, inflammation of the white outer layer of the eyeball, blood vessel changes in the retina, and damage to nerves controlling eye movement and affecting vision,” according to the Lupus Foundation of America.
Blood vessel changes, or retinal vascular lesions, are the most common form of eye involvement in people with lupus. This can lead to decreased vision, ranging from mild to severe. One to two percent of people with lupus may also experience optic neuropathy, which can cause rapid vision loss.
Scarring from blisters on my retinas as part of central serous retinopathy, a side effect of prednisone. I never thought I would have to seriously worry about losing my vision because of treatment. – Rachelle B.
Rapidly losing my eyesight. Overnight I went from having perfect vision to everything blurred. My vision never returned. – Amy G.
4. Raynaud’s Syndrome
Raynaud’s syndrome is a condition that affects circulation, causing decreased blood flow to the extremities (most commonly the fingers and toes). This can be triggered by several things, including cold weather and stress. Often the person’s fingers or toes will change colors due to the lack of blood flow, causing them to go white, red, blue or purple.
The LFA estimates that Raynaud’s occurs in up to one-third of people with lupus, usually resulting from inflammation of nerves or blood vessels. Check out these tips and products for coping with Raynaud’s syndrome.
My feet are freezing cold all the time. Unless it’s really warm out, I have to have thick socks on. – Stephanie D.
Lupus has caused me to have Raynaud’s. It gets so bad that I get frostbite on the tips of my toes. – Nicole F.
Living with a chronic illness like lupus can be incredibly challenging and taxing – not just on your physical health, but on your mental and emotional health, too. It’s normal to struggle with feelings of grief, frustration, sadness or hopelessness after being diagnosed with a lifelong condition. Lupus can be unpredictable and its effects far-reaching, so if these feelings persist and you find yourself struggling with anxiety or depression, know you are not alone. We also want you to know there are resources available and a community here to support you.
The anxiety that comes with it. Having to go to a new doctor is so much anxiety, because they often want to run the exact same tests, and do not take you seriously. – Katlin W.
The depression. There are times I can’t take care of myself and I don’t like asking other people for help. – Kirsten N.
Photosensitivity, also known as sensitivity to sunlight, is a common symptom of lupus, as 40 to 70 percent of people find that ultraviolet (UV) rays worsen their symptoms and cause flare-ups. Photosensitivity can affect people with both cutaneous and systemic lupus, causing symptoms such as rashes, fever, fatigue and joint pain.
To help prevent flares, the Lupus Foundation of America recommends reducing sun exposure by wearing sun protective clothing, using sun block of at least 70 SPF that block both UVA and UVB rays and staying out of direct sunlight between 10 a.m. and 4 p.m.
Photosensitivity. Instant migraine as soon as the sun (or any florescent lighting) hits my head. – Bonnie Z.T.
My sun allergy gets worse and worse every year that passes. Itches like hundreds of mosquito bites. People steer clear because they think I have something contagious. I am not contagious, I am just a vampire lol. – April C.D.
The intense burning and swelling of my body along with severe nausea when I am exposed to heat. It’s debilitating and really dampers any outdoor fun or any fun indoors if the heat isn’t regulated. – Lindsey S.
7. Dry Eyes
Another way lupus can affect the eyes is by causing dryness. This may be accompanied by irritated, gritty, scratchy or burning eyes, a feeling of something in the eyes, excess watering and blurred vision. When the dryness becomes severe, it can cause damage to the front surface of the eye and impair vision. The LFA notes that about 20 percent of people with lupus also have secondary Sjögren’s syndrome, a condition in which the tear glands do not produce enough moisture to sufficiently nourish and lubricate the eyes.
My eyes water all the time because they’re dry and overcompensate. I’ve had to quit wearing most eye makeup and carry tissues everywhere. It’s not as painful or debilitating as other symptoms but I love makeup and it’s super frustrating. – Tiffany M.
The most surprising symptom of lupus for me is the intense dry eyes. My eyes can get horribly painful from being dry and then sometimes even the drops make my eyes feel like they are on fire. People don’t understand when I run to the bathroom in the middle of the day and crazily rinse my eyes with water. The dryness comes out of nowhere and I can’t explain how bad it hurts. – Karianne W.G.
8. Central Nervous System Involvement
Lupus can affect almost any part of your body, but not everyone realizes this can include the central nervous system (CNS) and the brain. Doctors may refer to lupus with CNS involvement as neuropsychiatric lupus (NPSLE), neurocognitive dysfunction or central nervous system lupus (CNS lupus). When lupus affects the CNS and the brain, it can cause symptoms such as headaches, confusion, fatigue, depression, seizures, strokes, vision problems, mood swings and difficulty concentrating.
Some medications used to treat lupus can also cause side effects that are similar to the symptoms of CNS lupus, so it’s important to follow up with your doctor to determine the root cause of your symptoms.
Central nervous system involvement. I not only have migraines, seizures, myoclonic tremors, but lupus took away my ability to walk. But with high dose steroids and physical therapy I went from wheelchair to walker to cane and now able to walk on my own with bad days in between. – Gabrielle S.
Seizures are something you don’t hear about. I haven’t been diagnosed with them, but I can almost feel them coming from the fatigue. It’s a real possibility especially for those who are trying to work and make a life for themselves. My doctor says I’m at risk for seizures. I get horrible headaches that have me shaking if I don’t stop what I’m doing and go to sleep. – Raine W.
9. Cognitive Dysfunction
Cognitive issues, commonly referred to as “brain fog,” affect up to half of those with lupus. According to the LFA, people with cognitive dysfunction may experience feelings of confusion, fatigue, memory loss and difficulty expressing their thoughts. Brain fog can be incredibly frustrating, but there are plenty of products, coping techniques and even apps that can help you navigate the cognitive difficulties.
The neurological and cognitive problems were a surprise. Sometimes I feel like I’m losing who I am. – sickysummie
The debilitating effects of brain fog. Can’t think, recognize people, forget where I am, can’t do anything. It’s awful and scary. – Patricia G.
When my lupus was active (suspected medication-induced SLE, two years normal labs now), I experienced horrible cognitive issues. Memory and mood were completely different to the point I had [a] neuropsychologist test me to see if my lupus was attacking my brain. It wasn’t. But by far the most frustrating symptom I remember from active lupus days. It’s way more than just a ‘fog.’ – Aly S.
10. Mouth Ulcers
Mucosal ulcerations – sores in the mouth, nose or, less often, the lining of the vaginal tissue – are one of the skin conditions common in people with lupus. They may be caused by cutaneous and systemic lupus, and are different than herpes lesions or cold sores, which may be brought on by immunosuppressant medication. The LFA notes that lupus ulcers aren’t typically painful, but will show signs of inflammation when biopsied.
Sores in my mouth. No one warned me about those and they’re not fun. – Wendy K.
A fever that is not the result of an infection can indicate a flare-up, or an active disease state, in people with lupus. Active disease is caused by inflammation in an organ or organ system and can include other symptoms such as joint pain, increased fatigue, rashes, mouth/nose ulcers and swelling in the legs.
Many people with lupus may also experience a continuous low-grade fever (higher than the bodily average of 98.5°F, but lower than 101°F). Low-grade temperatures can indicate oncoming illness or an approaching flare, so it’s important to pay attention to your body’s signals.
The fevers! Most of mine occur in the evening as my body’s way of telling me ‘you did too much today, again.’ Because of my kidneys and liver I can’t just pop [acetaminophen] or ibuprofen whenever they arise. I’ve taken more hot showers in my life than I care to admit… – Savannah H.
12. Lung Involvement
Since lupus can attack practically any organ in the body, the lungs are also susceptible. According to the LFA, “Inflammation caused by lupus may affect the lungs in many ways, and can involve the membrane lining of the lungs, the lungs themselves, the blood vessels within the lungs, and the diaphragm.”
Several of the most common lung conditions associated with lupus are pleuritis (inflammation of the lining that covers the outside of the lungs), pneumonitis (inflammation within the lung tissue), chronic diffuse interstitial lung disease (the effects of scar tissue from chronic inflammation) and pulmonary emboli (blood clots that block the arteries leading to the lungs). Of these, pleuritis is the most common, as pain from pleurisy affects 40 to 60 percent of people with lupus.
I’ve been most surprised by lung involvement with lupus. I didn’t become aware of this until I was diagnosed with lupus pneumonitis that later evolved to pulmonary fibrosis. – BbygrlRogers
A common symptom among many chronic and autoimmune conditions, fatigue affects more than 80 percent of people with lupus and, for some, may be one of the most debilitating symptoms. It’s important to recognize that fatigue is very different than the average healthy person’s “tired.” Unlike being tired, chronic fatigue doesn’t go away with a good night’s sleep. It can interfere with your ability to complete everyday activities and may cause some to be unable to attend work or school. Check out the following strategies for managing lupus fatigue.
The debilitating fatigue no one seems to understand. It’s such a severe whole body fatigue that your body vibrates and your eyes shake back and forth. It’s like the world is going on around you but you have blocks attached to your feet and everything takes so much effort. Everything seems loud and you feel overstimulated. You physically cannot even hold a conversation or you may seem like you’re not paying attention or listening. It’s so hard to explain the fatigue. It’s so hard to explain, you can’t just ignore it or pretend it doesn’t exist. With pain you can usually fight through it for a while, but with fatigue, you cannot. It just gets worse and worse the more you push. – Jamie P.
The fatigue! I started the day feeling ‘normal,’ meaning I could function and socialize. Ended the day having to quickly leave a gathering cause I was about to collapse from exhaustion. It’s hard to have to explain to others. I always feel guilty when I’m constantly leaving early or not showing up at all. – Elizabeth T.
14. Gastrointestinal Issues
If lupus affects the autonomic nervous system, this could include any of the bodily functions that happen automatically, such as heart rate, blood pressure, temperature regulation, breathing and digestion. Lupus can affect any part of the gastrointestinal (GI) system. However, the LFA points out, some GI issues may be caused by medications or comorbid health issues rather than lupus itself.
GI disorders common in those with lupus may include esophageal disorders (such as gastroesophageal reflux disease, or GERD), digestive difficulties, inflammatory bowel disease (IBD), peritonitis and ascites, pancreatitis, liver complications and peptic ulcers.
The stomach troubles. You never know day to day what is going to set off the stomach and you can be anywhere on the spectrum of constipated to uncontrolled diarrhea. – Debbie J.
As mentioned in #14, pleuritic chest pain, or pain when you take a breath, is a common symptom among people with lupus. This type of chest pain may be due to costochondritis, inflammation of the cartilage that connects the rib to the sternum. It can be very painful but is often fairly easy to diagnose, as the pain is located in the chest wall and tends to stay in the same place.
Costochondritis was a surprise for me. It’s very painful, and the first time I had it, it was scary, because chest pain out of the blue made me scared I was having heart issues or a pulmonary embolism. – Jennifer W.
16. Skin Rashes and Lesions
While many people often associate lupus with the facial “butterfly” rash, the reality is lupus can cause a variety of skin rashes and lesions, most of which appear on sun-exposed areas like the face, ears, neck, arms and legs. According to the Lupus Foundation of America, 66 percent of people with lupus develop some sort of skin disease.
There are three main types of cutaneous (skin) lupus:
- Chronic cutaneous (discoid) lupus. Discoid lupus causes round, disc-shaped lesions that are red, scaly and thick. The lesions usually don’t hurt, but can be photosensitive and lead to scarring.
- Subacute cutaneous lupus. This type causes areas of red, scaly skin with distinct edges or red, ring-shaped lesions. These lesions are also photosensitive.
- Acute cutaneous lupus. This type most commonly produces the “butterfly” rash (malar rash) – areas of red skin that resemble a sunburn. This rash often appears on the nose and cheeks but can appear elsewhere on the body.
The burning. I sometimes feel what I can only describe as the feeling of someone burning me with a blow torch. When I go into a flare, it starts with the butterfly rash on my face and the burning spreads throughout my body. It burns when I shower and it burns when I wear clothing. I hate it and I wish it was a symptom that I would never again experience. – Jaime S.
No one ever talks about discoid lupus and how it affects someone’s life. I have had it since I was 5. I literally woke up after nap time covered in itchy red whelps from head to toe. Now that’s I’m 30 it’s only on my arms and legs if I go outside. I have a strict routine of staying indoors from 10-4 per doctor’s orders, but with kids you know how hard that can be. – Kristen C.
17. Nerve Pain
The peripheral nervous system (PNS) controls motor responses and sensation. If these nerves are damaged by lupus (known as peripheral neuropathies), symptoms may include numbness and tingling, inability to move part of your body, vision problems, facial pain, ringing in the eyes, dizziness, eyelid drooping or carpal tunnel syndrome.
The nerve pain was not something I was prepared for and [it’s] one of my more prominent symptoms. – Elizabeth V.
The nerve pain. I knew about the fatigue and the sickness, but nothing prepared me for the nerve pain. – Heaven L.
To learn more about lupus, check out the Lupus Foundation of America’s website. You can also learn more about how to get involved and become an advocate here.
If you are struggling with the symptoms or side effects of lupus, you are not alone. To read more about the illness from people who have been there, check out the following stories from our Mighty community:
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