COMMON MISCONCEPTIONS OF LUPUS

What Is Lupus?

Let’s start by talking a bit about what Lupus is, and why it’s often misdiagnosed. What is lupus? One thing I have noticed since being diagnosed with lupus is that people really have no idea what it is and what it does to the person suffering with it.Lupus is an autoimmune disease that occurs when your body’s immune system attacks its own tissues and organs. Inflammation caused by lupus can affect many different body parts or systems, including joints, skin, kidneys, blood cells, brain, heart, and lungs.

Lupus is very difficult to diagnose because symptoms often mimic other conditions. The most obvious sign of lupus a facial rash that is often referred to as the butterfly rash because it resembles butterfly wings the way it goes across the cheeks and nose. it occurs in many but not all cases of lupus. Source: Mayo Clinic

A look into my life

Symptoms Of Lupus

The most common symptoms are:

  • Fatigue
  • Fever
  • Swollen and achy joints
  • Headaches, confusion and memory loss
  • Loss of or thinning of hair
  • Malar Rash (butterfly rash)
  • Skin lesions, or lesions in mouth and nose (sometimes made worse by sun exposure)
  • Fingers and toes turn white or blue in the cold or under stress(Raynaud’s  Syndrome)
  • Shortness of breath
  • Chest pain
  • Dry eyes, mouth or nose

While these are the most common there are several more and can manifest differently in each patient. The symptoms I suffer with are, painful swollen joints, headaches(constant), ringing in my ears, dizziness and light head (constant), lesions in the mouth and nose, shortness of breath, chest pain, dry mouth, EXTREME fatigue (to the point I can sleep for days), confusion, memory loss,thinning hair, occasional fever, gastrointestinal issues, depression (which at times is overwhelming), rashes, recurring sinus and ear infections and COPD.

I have only recently been diagnosed so treatment hasn’t really been started. I have been researching and investigating natural ways to relieve symptoms. I sometimes think the more medication a person is on the more they need and that’s not what I want my life to turn into if I can avoid it. At the same time, I am so miserable I may have to take the other route until I find out what works for me. The depression is by far the worst part of it for me right now. My faith in God gets me through each day some easier than others.

Misconceptions About Lupus

There are a lot of misconceptions out there, I’m going to list a few I’ve personally dealt with and some I’ve read about during my research.

This is the one that drives me crazy, you don’t look sick. Today I may not look sick but tomorrow I may not be able to get out of bed. Without makeup I look like I have been abused, my eyes are black my cheeks are red and my lips are sandpaper. Some people lose weight I have gained a lot.


Here’s another recently said to me,” I have a co-worker who says they have lupus he’s never sick and doesn’t miss work…so why have you been off work 5 months?” Ahh, I have been dizzy for 5 months and at times can’t bare to move my head. The ringing in my ears is so loud I can’t hear and sometimes I fall asleep talking to people. There are days it’s not safe for me to drive so be thankful I’ve been off work and off the roads. These are the two that have upset me the most.

Here are a few more I read about, some I’ve heard personally others only read about:

  • Men really don’t get lupus. While women are 10-15% more likely to have lupus men do get it
  • That we are lazy. extreme fatigue is very common so we actually need more rest than you do.  (I had 3 naps today it has been a rough one.)
  • Exercise is dangerous. Lupus sufferers have to be careful and do mild exercise that isn’t painful but exercise is not dangerous.
  • You have to have the rash to have lupus. Only about 40% of lupus patients have the butterfly rash
  • Lupus is contagious. I have had this question because of the fevers, lupus is not contagious. It’s not a virus
  • Lupus is rarely heard of. Actually, around 1 million Americans have lupus 90% are women
  • Are you going to die? Another I have been asked, my response…..we will all die eventually. However,  lupus has no cure but with treatments we can live a long full life.

Read more on misconceptions here. Source

Thoughts From A Newly Diagnosed  Lupus Patient

I am not lazy but I am exhausted 80% of the time. Nothing about this has been enjoyable, so saying I’m “lucky” because somehow it sounds like a vacation to you. I would rather feel good and be at work. This is depressing and most days I feel useless and frustrated because I can’t do the things I used to.

The crazy part is this all started with a trip to the emergency room in August 2017 for what I thought was a heart attack (thankfully wasn’t). It was then diagnosed pancreatitis later I find out gall stones. Surgery was put off because of recurring infections. The dizziness and ringing ears started out of nowhere in September (and hasn’t left).  From then on new symptoms keep popping up. I have had cat scans, ultrasounds, mri’s blood test after blood test. I have now had 4 positive ana tests and went for a 5th today by request of the rheumatologist.

Keep this in mind

Please don’t think for one second I’m not sick, because I am. I am also angry, frustrated, depressed and extremely jealous of everyone who has good health and out there enjoying life while I sit here in pain, misery and tears.

I want respect and understanding not pity or doubt. Pray for me, lift me up. Don’t look down on me. Don’t pity me. Offer support, but only if its because you really understand and care.

If you don’t understand what I’m going through ask me what a day, week or month is like for me. Instead of automatically assuming I’m lazy, crazy or making it up.

That’s all for today! If you suffer from lupus or any other autoimmune disease, chronic illness, and pain leave a comment. I will add you to my prayers and maybe we can lift each other up!!

 

Have a Blessed Day Myla

 

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23 thoughts on “COMMON MISCONCEPTIONS OF LUPUS”

  1. Hello Myla,
    I am sitting here bawling as I have just read your post on your journey with lupus. My story is so similar to yours its uncanny!! I was originally diagnosed with gallbladder disease in 2010 then menieres disease in 2012 March 2018 with antiphospholipid antibody syndrome .Which then followed with lupus and chronic fatigue(May 2018) Nov 2018 fibromyalgia .And now something called pc4d which I will talk with my rheumatologist about on the 26 of this month. Like you I have an aversion to medication that does more harm than good!
    If I hear one more person tell me the good out weighs the bad !? My eldest daughter lives in Seattle and she thinks I should start smoking medical marijuana! ? I would really love to speak with you about your endeavor as an autoimmune warrior. My number770-833-2545 Best wishes and abundant spoons. C.Priest

    1. Thank you so much for sharing your story with me!! You have so much going on with your body. I don’t have as much to deal with as you and do hope the DR’s can help you find some relief. I will tell you I started using CBD oil along with Flintstone vitamins with immune support, omega 3’s, b complex. magnesium and calcium supplements and I actually feel better most days. Less pain and better sleep. I will set aside some time to give you a call once I kick the flu. Best wishes Myla

  2. I can totally relate. I have been sick since summer 2019. First my hands and feet started going numb (peripheral neuropathy) along with being able to sleep for days. I also had abdominal pain at the time and was diagnosed with gallstones. Had that removed and was told it was just symptoms of recovering from surgery. I continued to advocate for myself. I was told it was my back, was referred to an Orthopedic dr. Then physical therapy. It’s been a wild ride. I’m on gabapentin and it’s miserable. I just want to be able to function.

    1. It’s a roller coaster ride for sure!!! We know our bodies better than anyone else, yet most of the time DR’sdon’t really hear what we are saying and so we get sent to specialist after specialist until everything else is ruled out. Then they check for autoimmune diseases. I think the process needs to be flipped. Rule out autoimmune first. Gabapentin didn’t seem to have any effect on any of my pain so I don’t take it anymore. I truly hope you find some relief! I started using CBD oil along with Flintstone vitamins with immune support, omega 3’s, b complex. magnesium and calcium supplements and I actually feel better most days. Less pain and better sleep. Best wishes Myla

  3. Hello Myla,
    I, myself, was DX with RA when I was 36, I’m now 49. Over the years I have watched my symptoms which are more Lupus like, but they keep saying it’s not Lupus. On January 6, I was driving to work an started having what I thought was a Heart attack, mine you I’m a nurse so I know the symptoms, they told me I had the flu. To which I had zero symptoms. Since then my heart rate has been all over the place and the fatigue is bad! I put on a brave face an still go work feeling like it’s the safest place to be, as I live alone. The worst part is they keep telling me ” there is nothing wrong with your heart” but yet they still can’t explain it. ?‍♀️It is definitely a struggle and not everyone gets how hard it is. I hope they find what works best for you and you get back to feeling yourself. Best wishes.
    Kim

    1. Your story sounds like mine and a lot of others I have heard. We know our bodies and we know when something just isn’t right. I get up and go to work every day because I feel like I need to be up and around others to survive. Work distracts my mind and I can try to focus on something other than the pain and exhaustion. I truly hope the DR’s find answers for you and can help you feel a little better. I have started taking a lot of vitamins, supplements and CBD oil and honestly, they are helping. Best Wishes and Positive Thoughts, Myla

  4. Helen Grantham

    Hi there, I am in the process of finding out “whats wrong with me” the symptoms of Lupus are all of what I have most of the time not all together, trying to get a doctor to get me tested has been rather testing!! So here I am at the moment waiting for results…….

    1. I have been trying to reply to your comment for a while!! The testing process is draining. I hope you have received results and answers. You are in my prayers

  5. Lanetra Jackson

    Your story melted my heart! I was 28 years old at the time. I started getting sick August 2018. Just came back from a cruise to Mexico. Started having stomach pain, couldn’t keep food down, losing weight. Figured it was from Mexico but the symptoms kept on for months. I have a heart murmur, rheumatoid arthritis, and migraines so being exhausted & joint pain wasn’t new to me. I was seeing different doctors, having blood work done, different scans/tests and everyone kept saying it’s a bug I probably got from Mexico and I’d be fine in a few months. Then the joint pain got severe where I couldn’t move out of bed some days, ankles, feet, hands, wrists, elbows all started swelling up frequently! I got to the point where going to the doctor was pointless since nobody seemed to know what they were doing. Finally I developed a small rash on my left hand that would come and go. Told my rheumatologist about it and him and the dermatologist are the ones that decided to test me for Lupus. I found out the news a week before my birthday! In a sense I was so relieved because it was a whole year of suffering from different things, not knowing what was wrong, and beginning to feel like maybe I was crazy and all these different symptoms were just in my head. I am thankful to know now what it is but at the same time, everyday is a struggle! Exhaustion and joint pain are my #1 struggles!!!! I was once on Prednisone but not currently. It did wonders for me starting out!!! I could finally bend, simple things like raising my hand was now easy! I also was put on Plaquenil which helped as well. I did stop taking it as well as the Prednisone because I’m not one who likes to be on medication long term. I went without taking them for about 5 months. Didn’t really see the difference too much of being on them verses not being on them. I have noticed my hair dropping or thinning a little bit recently and a new rash but I am back on the Plaquenil per doctor’s request. I go twice a year to my cardiologist as well as my rheumatologist to make sure all my organs are functioning okay. I’m still able to work full time but like I said I struggle everyday with either extreme exhaustion or joint pain but I put on a brave and do what I have to do! I encourage anybody reading this whether you have Lupus or not to continue to get answers from these doctors. Don’t let them just send you home and tell you that you’re fine when you’re not. Speak up, speak loud, speak clear!!!!! Much love!!!!! ?

    1. Your story sounds like so many others I have heard. I struggle every day with pain and exhaustion. I didn’t see any results from the Plaquenil, but the steroids do seem to bring some relief. Right now everything is horrible as I am recovering from COVID 19. 10 days in ICU 5 on a ventilator and being revived 2 times the first 5 days has really taken a toll on my body. Another interesting piece of information from the Dr who cared for me with COVID, he says my Lupus test came back negative but that I definitely have rheumatoid arthritis and to get back to my Rheumatologist for further testing as he feels there may be more going on!! I will keep you in my prayers in hopes you find some relief.

  6. nosisa mthembu

    hi..my name is nosisa..i was diagnosed with lupus yesterday because all along i was treated for rheumatoid arthritis..but i kept having swollen legs and feet..painful spine and lower back. now id like to know is ther any home remedies i can use besides having to depend on treatment?

    1. I am so sorry to hear you were misdiagnosed! It seems to be a very common thing with Lupus. Unfortunately, I have not found any home remedies that help enough to say it could replace treatment. Maybe try a naturalist for some advice and please let us all know how you get along with it.

  7. Thank you for this post. It is so accurate and so many people are extremely judgemental. Even other patients can be sometimes because it doesn’t affect them the way it has another patient. It’s unbelievable how often I have to give this speech about how the severity can differ from one person to the next. I was finally diagnosed with Lupus about two years ago. Although I personally share your same reservations of medicine, I have tried everything offered to me by my specialists out of desperation for some quality of life. I have just started gabenpanten last month and for me personally it is the only medicine I feel that has made some positive changes but my mother who has a different autoimmune disease does not find it to work for her at all. Please remember just as the symptoms can vary from person to person so can medications and diet changes! I found my body reacts heavily to food now. This was not the case for me throughout my life, I was able to eat whatever I wanted. That is an extremely difficult adjustment to understand in your mid-thirties. We need to support eachother. This and other autoimmune conditions are so hard to adapt to. I wish the support and education was better, thank you for taking the time to share your knowledge. To everyone struggling, my heart goes out to you. Don’t lose hope. We are called Lupus Warriors for a reason. Stay strong! ?

    1. I am so glad the Gabapentin is giving you some relief. I tried it for a while and it didn’t help me at all. Lupus is a horrible and moody disease it treats us all differently. I am going to keep fighting and keep going for as long as I can!!

  8. Hi Everyone,
    I became really poorly on my 40th Birthday and haven’t really got any better, that was 3 years ago. I was always a work hard, play hard kinda girl, now I’m lucky if I can get out of bed and if I do and force myself to get up and go, I usually end up paying for this with a few days in bed again. My husband even days I thought you was feeling better?. Instead of 43 I feel 93, actually my husband’s grab has got more get up and go than me and she’s 93. After spending some time in intensive care I was diagnosed with Brittle Asthma and Bronchiectasis and have now been signed off permanently, I get comments like Oh you’re lucky you don’t have to work and can stay in bed all day, I’m like yeah I love just existing. I ran a care home before I became ill and I actually thrived with being needed and being kept busy, I actually felt important, now I just feel completely useless and have been backwards and forwards to the Drs with many other symptoms like my skin crawling, rashes, when I’m trying to go to sleep I can hear and feel a thumping pulsating feeling, like my brain is knocking. I have fatigue like I’ve never known, my bones hurt as does my skin. My hands go numb and my body doesn’t know if it’s too hot or too cold, The list goes on… I no longer have a life, I merely exist. The Drs just keep saying I’m depressed and I have anxiety, I asked if they thought I could have fibromyalgia on my last appointment which was a telephone appointment, because since Covid I haven’t been able to see my Dr, I was even offered a telephone appointment for the cardiologist because my heart rate is usually around 150! and because I declined and said I would wait to see them personally and missed my next appointment due to brain fog, they’ve now taken me off the list as have the respiratory team even though I have lung disease!. I feel completely failed by the NHS and am struggling to know who to trust. I feel so alone sometimes and even question my sanity but surely this can’t all be in my head. ???
    Thank you for letting me have a little rant, hope you are all as well and safe as you can be.
    Faye x

    1. Oh my!! Your story really touched my heart. Please know you are in my prayers and please feel free to rant anytime you like!! The brain fog affects my life in ways others can’t imagine.

  9. I look forward to following your journey in hopes that it will help navigate me in mine. My journey began August of 2015 with a tick bite resulting in Rocky Mountain Spotted Tick Fever and a positive ANA. After 5 years, 2 pregnancies, 2 rheumatologists, I finally received a diagnosis of Sjogren’s April of 2020. In the past year my health has steadily declined. Our stories become very similar as of March 5, 2021 when I was hospitalized with Pancreatitis. My rheumatologist was happy, but not, that the pancreatitis event happened because it was the puzzle piece she needed for a Lupus diagnosis (my bloodwork does not/ has not supported a diagnosis although the symptoms do). I am relieved with the diagnosis, yet unsure of where this journey is going to take me.

    1. You have been through so much!! I’m glad you have a diagnosis. Lupus is very hard to diagnose because it mimics so many other illnesses. As of right now, my diagnosis has been changed from Lupus to rheumatoid arthritis and Fibromyalgia which I was diagnosed with over 20 years ago. The RA diagnosis is new and was discovered by Dr’s who treated me for COVID. They determined I had been misdiagnosed. My sister also has been diagnosed with Fibromyalgia and the two of us have decided to start a blog to chronicle our journey. We are trying different products and changing our eating habits in hopes to find relief and live more fulfilling lives in less pain. It’s a brand new blog so we don’t have much on it yet but if you would like to join us on our journey this is our blog https://lifewiththefword.com/

  10. Hi Myla
    It just pains my heart when I hear of others suffering with Lupus…In my mid 20s I was diagnosed with rheumatoid arthritis, then Renaud’s, then crohn’s, the heart issues… somedays the pain was so bad i would just pass out where I was standing…and the fatigue was crazy… this went on for years…one day at my Drs office I said I felt like a bus stop for chronic deceases…thats when I was finally diagonsed with Lupus. for years I took handfuls of harsh narcotics and pills….but nothing seemed to help for long.
    In ’95 I almost died, due to internal bleeding because my gallbladder rotten and my liver was shutting down.
    After I was discharged I began to see a naturopath and gave up on conventional medicine. It took alot of strength and determination but I had 10 glorious years of no pain or symptoms, except tiredness and headaches. I did, mind you, stay on a vegan-ish diet, do alcohol, no coffee, not over doing it and herbal rememdies.
    Several years ago I feel down the stairs and it started a chain reaction that I am still coping with… headaches/migraines, ringing in my ears/hearing loss, mouth ulcers, skin issues(2020 i pretty much had shingles the whole year) swollen sore joints ( a different one each week) shortness of breath, chest pain, digestive issues and you know the list goes on
    I thought I would write to tell you all this because.. yes Lupus is forever …yes people cant see it and you feel you are on your own .. but there is an answer out there. Keep researching natural ways to heal( there is so much more info out there then when I stumbled through in the 80’s) I truly believe that an organic diet plays a huge part of healing…your gut rules your body.
    I have now been diagnosed for 30 plus years and since my gallbladder removal in ’95 have not been back into the hospital, and i am determined to keep it that way. Stay positive and strong and return a silent pray to those who dont understand, that they may never feel your pain.
    blessings

  11. I have had Lupus for probably all my life. I found out for sure in my early 30s. I am 72 now. I have had some really good days, weeks, and maybe even a month. But most of the time I deal with pain, joint damage & replacements, my hands look deformed & I’m having a hard time cooking & baking. I need to cook & bake because I can’t have Dairy or Gluten. Lately I’ve had bouts of vertigo, depression & my balance isn’t good. I shake all the time now. Now keep in mind that I can’t take biologic medications that many of you probably can. Doctors prescribe that for Lupus. I sound like I’m feeling sorry for myself. I probably am. Usually I am upbeat & deal with all of the symptoms. Lately I’ve had to deal with more. I need time to “get used to what this is”. One of the hardest parts is that you don’t look sick. People might think you are lazy. Brain fog is another thing. My memory isn’t good right now. Some people may think you’re crazy or getting alzheimer’s. I will try to pray for all of you. I would love to have your prayers too. Love you all! 💕 Kathy

    1. The hardest thing is learning how to deal with the negativity of others because we don’t look sick. The lack of understanding and empathy blows my mind. I will keep you all in my prayers!!

    1. So many of us share the same or similar stories!! I hope that someday they will be able to diagnose Lupus quicker and maybe a cure or at least better management options will follow!!

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