- Lupus is a lifelong autoimmune disease that can attack any organ in the body. It can affect anyone at any point in life. However, it’s most commonly activated in women and minorities during their childbearing years, 15-45.
- Lupus Life Hacks® to understanding Lupus triggers. Our genes and environment work together, by working against us to activate Lupus. These cause debilitating lupus symptoms like hair loss, exhaustion, organ involvement(skin, joints, brain, heart, kidneys), and brain fog/memory issues.
- Lupus treatments are intense and can involve immunosuppressive therapy, corticosteroids, and antimalarial drugs. Integrative treatment is best as is uses a combination approach by testing for hidden, underlying infections, eradicating them from the body while treating with lifestyle changes AND commonly known prescriptions from conventional medicine.
Ladies (and gents) I wish I had easy to understand information on Lupus when I was diagnosed. Everything was difficult going through all the medical and “.org” sites. So, I’m going to go over everything you need to know to understand Lupus so that you can be proactive with your doctors and with your treatment plans.
First, Lupus is not a type of cancer. But, there are medications that treat both Lupus and cancer. So, you can see how serious this can be. Don’t fret though. I’m going to break this down so that you know what is going on with you or a loved one and how to tackle it head-on, in hopes of preventing as many lupus symptoms as possible.
Treating Lupus is a learning curve, even for doctors because it’s known as the great imitator in that it has many symptoms that can overlap other autoimmune like diseases.
What Is Lupus
Lupus(Systemic Lupus Erythematosus or SLE) is an inflammatory autoimmune disease that can attack any organ in the body and can happen at any point in life to anyone, male or female. Although, it is more likely to be activated in women in their childbearing years, 15-45.
Did you know that African Americans, Asians, Hispanics, Latinos, and Middle Easterners are more likely to suffer from Lupus as compared to Caucasians?
Interestingly, according to verywellhealth.com it’s not as common in Africans in comparison to African Americans, which points us to the direction of possible environmental triggers. More on that further down 🙂
You’re now probably wondering how long someone has Lupus.
Well, it lasts forever and there is no cure(super heavy crying face). Some organs that are affected are the brain, kidneys, GI system, joints, heart, lungs, and skin.
It’s a tough disease to deal with because it’s SO unpredictable and frustrating to deal with.
What is an autoimmune disease?
An autoimmune disease is when the body’s own immune system loses its ability to tell the difference between a real foreign invader like bacteria or a virus and its own cells that make up our organs. So, it attacks itself and literally breaks down the cells of different organs causing inflammation, pain, and sometimes permanent damage.
It’s known as:
The great imitator – symptoms of lupus can overlap other autoimmune diseases like RA, Sjogren’s
Lupus symbols are:
- Wolf – Lupus is from the Latin word for wolf and the lesions that appear on the face of those with Lupus resemble a wolf’s bite. It was a 13th-century thing.
- Butterfly – This represents the butterfly rash that is commonly seen across the cheeks and nose of someone. Also, it represents a transition into something beautiful. Lupus doesn’t define us!
- Purple Ribbon – Purple is the unofficial color of Lupus and since May 2019, May is officially Lupus Awareness Month. Wooo! I was in Albany NY with Congress for that and it was so exciting!
There are four types of Lupus
- Systemic lupus erythematosus – Systemic lupus is the most common form of lupus—it’s what most people mean when they refer to “lupus.” Systemic lupus can be mild or severe and can affect any organ.
- Example, Lupus nephritis is inflammation of the kidneys and stops the kidneys from filtering waste from the blood.
- Cutaneous lupus erythematosus – This form of lupus is limited to the skin and can cause many types of rashes and lesions.
- Discoid rash is raised, scaly, and red, but not itchy. Sores can also occur anywhere like the face, neck, scalp, or vagina(not STD related).
- Drug-induced lupus erythematosus – This is a lupus-like disease caused by certain prescription drugs. Usually, it can go away once you’ve stopped taking the medication.
- Hydralazine, procainamide, and Isoniazid are some examples.
- Neonatal lupus – Neonatal lupus is not a true form of lupus. It is a rare condition that affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb.
- Lupus symptoms may vary and so does severity. Someone can have the same symptoms for 5 years and then they start to show new symptoms to them, but common for someone else.
- You can still have children with Lupus, depending on your severity it may not be advised or safe to be pregnant with lupus. But, you can have a surrogate (it’s more affordable than you think)
- 9/10 with lupus are women
- Men with lupus usually have severe cases, but they share similar symptoms as women
- There are more with lupus than those with aids, cystic fibrosis, MS, sickle cell anemia, and ALS combined, yet no one knows about it.
- Community and professional education/testing is severely lacking which is why…..
- It takes an average of 6 years to receive a diagnosis and to start at a treatment plan. Leading to…
- The longer it takes for a diagnosis, the more likely organ involvement will occur.
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Symptoms of Lupus
Symptoms and signs of lupus can vary from person to person. Nonetheless, we all will find someone with similar symptoms.
These symptoms happen in a combination with each other, so the more you have, the more it suggests Lupus-like symptoms.
Common symptoms of Lupus
- Extreme fatigue – Having difficulties staying awake or feel like you’ve been hit by a bus
- Painful and/or swollen joints
- Muscle pain and/or weakness
- Chest pain with deep breathing
- Unusual hair loss – pulling clumps out while brushing your hair or in the shower
- Pale or purple fingers or toes
- Red rash on your fash(butterfly rash) or on your body
- Sensitivity to the sun – Are you getting dehydrated fast, feeling nauseous, have a heat rash?
- Sores – In your mouth, nose or vagina(not STD related) – sometimes painful, blister-like
- Memory problems/confusion – are you asking yourself, “How do I pronounce words that I once knew” or something that was easy before is hard now.
- Infections – Often getting sick and unable to fight infection as easy as before
- Fever with no cause
- Trouble regulating your body temperature
Uncommon symptoms of Lupus
- Blood clots
- Loss of vision
Your 2019 Lupus Checklist will help you communicate effectively at your next doctor’s appointment.
I’ve learned throughout my healing journey with Lupus that many things we use daily trigger our Lupus symptoms OR they share similar symptoms making us think we’re in a flare.
Basically, our diet and lifestyle directly affect us. So, if you’re diet includes gluten, dairy, soy, complex carbs, and refined white sugars, it will feed inflammation.
Lupus is a hormone dysregulation and inflammatory based disease. The man-made chemicals in our food are what makes it worse, not the food itself. I’ve learned that chemical-free foods like fresh meat and plant-heavy meals while staying away from inflammatory foods make the largest difference in the severity and length of flare-ups and symptoms.
Causes of Lupus
Well, I have good and bad news, but overall it can be good. Once you are ready to learn more about Lupus, you can fight it and prevent symptoms!
The causes of Lupus are a mix of genetics and our environment. That means we have more control over our health and wellness than we thought, but we don’t have a cure…yet.
Let’s talk about causes:
There is so much exciting research underway currently about how different genes may be tied to Lupus. There is one called major histocompatibility complex (MHC) on chromosome 6. this has the human lymphocyte(type of white blood cell) antigens(HLA). This was described as the first genetic link to SLE.
Basically, HLA is critical in how cells communicate with each other. We all know how it goes when you don’t communicate effectively with someone, now imagine our cells not understanding how to talk to each other?! Chaos!
Another example of a gene is GRB2. This is a key factor in the activation of B cells. This one seems to be significantly associated with SLE In European populations.
This is something that is considered complement inhibition. That means that the main function is to stop the complement system and prevent spontaneous activation of something.
Basically, the idea is that complement activation may support chronic inflammation.
There is a field of study in science called Epigenetics. That means a bunch of smarty-pants people live their lives studying how our environment (chemicals from hair and skin products, pollution, food, supplements, and soil) interrupt how our genes work by turning them “on” or “off” at the wrong phases of growth. Basically, when they’re not supposed to.
Then, these genes proliferate or multiply. So, things that are not supposed to happen start to happen. Messages get fuzzy as cells try to communicate and that’s how cancer and autoimmune disease is activated.
We all have dormant cancer cells in us, then it gets triggered ( I learned that in my epigenetics class, I can’t believe I remembered that!)
Many of us have cells like that and are triggered. BAM! One day we wake up and show signs of autoimmune disease. We’re so confused and our world falls apart because we can’t get out of bed. We were fine yesterday, what the heck Linda.
Ultimately, the goal is to turn these cells off so that they are inactive. When they are inactive that means we are in remission, not cured.
This is a common misconception for most people as they think they’re cured.
Best Lupus Treatments
There are many standard treatments that cause debilitating side effects, but they are necessary for us and that is okay! These are the first line of defense because conventional medicine is based on emergency medicine. So, they are taught how to treat symptoms and manage emergencies. That’s why you only have two options: a procedure or a pill to manage symptoms.
Whatever you’ve chosen with your doctor’s guidance, never stop taking your meds when you start to feel better or feel like “it’s not working”. Trust me, it’s working, but you may still feel symptoms because you’re not addressing underlying issues like mineral or vitamin deficiencies and you may not be on a diet that works for your body type.
This is commonly prescribed and works for many. A lot of times, this is prescribed in combination with any of the below. This is an important baseline drug to take as it prevents organ involvement. However, make sure to get your eyes checked every 6-12 months, it can cause blindness.
- Preventing flareups
- Lessen joint pain
- Manage unexplained fever
- Prevent organ involvement
- Treat mouth ulcers
This can be very intense. Many suggest to take it on a Friday so you have the weekend to recover.
- Lowering the immune system
- Decreasing pain and inflammation
These are fine short-term, but they do break down the lining of your stomach and hurt your liver over time.
These help with mild lupus symptoms:
- Joint pain
- Joint swelling
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Generally, long term use of these breaks down the joints in your hips, requiring hip replacements at a young age. Ensure your doctor closely monitors the starting point of your joints so they can compare the degeneration of your joints/bones overtime.
These help with:
- Controlling organ damage
- Suppressing the immune system
- Relieving muscle aches
- Reduce inflammation
Now after you start those, you’ll be on the internet looking for other relief like the rest of us because you can’t handle the symptoms of them anymore or they don’t work well enough.
Let’s face it, your quality of life sucks and you’re desperate for relief that doesn’t involve 10+pills a day with side effects that match the side effects of Lupus(eye roll)
I’m about to drop some hard to hear truth bombs for some and some exciting news for others.
It all depends on your perspective of life.
Change is scary, invigorating, exciting, and good. Well, if it’s a good type of change.
Remember, if you do the same thing over and over again and expect a different result, that’s the definition of insanity…
Integrative medicine comes in to save the day. woohoo!
With proper guidance from a qualified practicing healthcare provider, you will:
- Feel better
- Bloodwork will improve to *optimal levels* – no low normal or high normal that validates you not feeling well, but your blood work is “fine”.
- Have fewer debilitating side effects
- Will look better
- You will be able to live a relatively normal lifestyle
- Many go into remission too
First things first, they run so many tests that you’re not familiar with.
Types of Tests:
- Stool – Look for underlying hidden, stealth-mode bacterial and fungus or mold-based infections which are ridiculously common in us.
- Heavy metals – Very common in us. Tested via hair, blood, and chelation testing. Some common ones are mercury, lead, arsenic, aluminum, cadmium, nickel, and copper(nutrient metal should be in balance too).
- Mercury overload is VERY common and is linked to chronic fatigue, brain fog, and more. Dr. Mark Hyman has a great explanation here.
- Vitamin/mineral deficiencies – Very common. Check your B12 & 6, D, magnesium, selenium, and iron. Make sure they’re in *optimal range*, not “normal”. That’s outdated lab data.
- Thyroid – Most of us have underlying thyroid disorders that are causing our brain fog, fatigue, hair loss, and weight gain. Here’s a hint, if your TSH levels are over 2.0, you have thyroid dysfunction. Conventional doctors don’t usually care until your levels are so ridiculously high that you can barely live.
- MTHFR gene mutation – Very common too.
Once they pinpoint the underlying triggers of Lupus and your symptoms of lupus they continue a mix of the conventional method and over time, reduce those while adding more of the following:
Low Dose Naltrexone
section 2 of this blog goes into more detail.
- LDN is FDA approved for treating alcohol and opioid addiction at 50mg+. Off-labeled at 1.5-4.5 mg, it’s used for cancer, Lupus, Hashimoto’s, Fibromyalgia, Chrons, MS, and IBS.
- It blocks opioids by attaching to opioid receptors without activating them.
- Increases dopamine levels which are very low in the chronically ill. Making you happier, the ability to better manage emotions, less pain, and inflammation. LDN contains your immune system allowing it to function better and become more reliable.
- Side effects: Possibly headaches, Vivid/lucid dreaming for sure, Insomnia in the beginning and if it continues, take it in the afternoon instead of at night.
- If your doctors ask what it’s used for, tell them It’s called Opioid-Induced ImmuneModulation. Endorphins are usually low in those with chronic conditions. This helps increases the natural production of neurotransmitters.
- Compounding pharmacies across the USA and Canada can make Low-dose Naltrexone as a 3 month supply for $25-85 ish dollars.
- Anti-inflammatory treatment for chronic pain, Modern Wonder Drug
- Avoid supplements and foods that fuel the fire. Here are some examples of what to watch out for when companies claim their products “help”, “boost”, or “protect” your immune system.
- Avoid these – Echinacea, Olive Leaf, Garlic, Cat’s Claw, Elderberry, Ashwagandha, St. Johns Wort.
- Immunoregulators are best.
- Pycnogenol – My favorite. It helps reduce common symptoms of lupus without loweirng your immune system.
- Vitamin D3, not D2 because D2 is the synthetic version that our body can’t actively utilize and has a hard time recognizing it. Vitamin D3 helps decrease brain fog and balances our immune system while helping support our bones and joints.
- Collagen peptides – Lupus ages us because we’re constantly fighting ourselves. This collagen is life-changing. I am wrinkle free AND it helps feed my brain and joints nutrients with the added non-GMO vitamin C and hyaluronic acid.
- Hormone Therapy
- Primrose oil
- Nutrient Balance
Cannabinoidiol (CBD) is a natural game-changer for anyone suffering from chronic inflammation, chronic pain, autoimmune conditions, and even cancer. CBD, Cannabis/Marijuana, and Hemp are NOT the same thing.
- Our body has a separate system that responds directly to compounds in cannabis, CBD and THC are two of the compounds. It’s called the endocannabinoid system.
- There are no long or short term side effects that will hurt us.
- If you are unable to respond well to CBD products it can be due to ECDS or because the product you bought was filled with olive oil and hardly any CBD. Companies don’t have to be honest with you, so it’s important to shop smart.
If our cells live off of a balanced mixture of various vitamins that are naturally found in our plants and animal products like magnesium, B12, and B6, doesn’t it make sense that we need to eat nutrient-dense food so that they can work to their best ability to protect us? Sounds pretty logical.
That’s why we’re all going back to the simple days (30 years ago) before our food was altered with nutrient-like chemicals and autoimmune diseases were rare.
- Gluten– Gluten is not a natural protein anymore. The gluten we eat today is NOT the same as the kind our ancestors had. It’s lab-created and feeds inflammation. In fact, it’s so similar to our thyroid that our body starts to get confused and attacks our thyroid while attacking gluten. Causing GI symptoms, brain fog, and joint pain. It sounds like lupus.
- Dairy – Natural dairy may not be as bad. Now, it’s full of antibiotics, hormones, and feeds inflammation. Since lupus is an inflammatory disease, we’re feeding it even more.
- Soy – Natural soy is great, processed soy(soybean oil, soy milk) is known as an estrogen disruptor. Lupus is an estrogen dominant autoimmune disease. Let’s avoid that so we can better regulate our hormones.
- Histamine – Do you get rashes a lot? This could be why.
- Paleo – This is my favorite because it’s not so strict like AIP, but removes most of the inflammatory foods like gluten, dairy, and soy.
- The most logical diet known to man. “So, instead of loading up on meat, vegetables, and seasonal fruits, we’ve become a species “dependent” upon grains – bread, pasta, rice, corn, and so on.” The approach for the past 30 years is not natural and our body is responding via symptoms and disease.
- AIP – Type of diet that removes all inflammatory type foods so that our gut(where our immune system is located) can heal and have a break from being bombarded. It’s sick and tells us via the symptoms we experience. Listen to your body, it will thank you!
- Basically, its a strict version of paleo. Nuts, seeds, eggs and nightshade vegetables are prohibited because they trigger inflammation even if you don’t “feel” an allergic reaction, it’s still happening in your body. Most start the AIP diet to reduce symptoms and inflammation caused by autoimmune conditions.
- Anti-histamine diet – Histamine causes your blood vessels to swell, or dilate so that your white blood cells can quickly find and attack the infection or problem. Many people have histamine intolerance due to IBS, SIBO, and leaky gut for example. By avoiding histamine foods, you can help your body heal and reduce inflammation.
- Keep in mind, histamine intolerance is not the same as a food allergy, which is why allergy testing may show that everything is A-okay, when clearly it’s not.
Now you’re the expert on Lupus! Want more people to understand how serious Lupus is? Share on social media to help teach friends and family how serious Lupus is and what you go through each day! Don’t forget to tag @lupushealthshop
How has lupus changed your life? Comment below, let’s chat!