Understanding Lupus

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“When I first learned I had Lupus, my doctor handed me a pamphlet, and I went home, read it and cried. When my husband came home from work, I couldn’t even tell him. I handed him the pamphlet and started crying all over again. No known cause and no known cure, resulting in death.”

Many feel the need to hide and keep it quiet. If you get sick too often, you’re “slowing down in your work” or “limping is counter-productive.”

Chronic fatigue, fevers, joint pain, and brain fog are daily reminders.

Cognitive symptoms or Brain Fog affect many of us with Autoimmune diseases.

“Between 20 percent and 60 percent of people with Lupus experience some effect on their cognitive function.” According to Coping with the cognitive symptoms of lupus  from Lupus Foundation of America

Symptoms of Cognitive issues include:

  • Difficulty finding the right word
  • Poor memory
  • Slow processing speed – keeping up with a conversation or problem solving.

Suggested Actions to help:

  • Make a plan and write it down
  • Take your time
  • Trigger your memory with visual cues
  • Do one thing at a time
  • If you can’t remember a word, start with a related word you can think of
  • Channel your strengths 

Fatigue is difficult to explain but imagine waking up in the morning with one of those lead bibs they use at the dentist office for an x-ray on you.

You take a shower and get ready for your day and put on two. At 10:00 a.m your coworker adds three more on your back. After lunch, two more and this continues through your day.

By the end of the day, you’re carrying twelve — and the weight is unbearable.

This is what fatigue is like to me. After a long day, I don’t just need a nap, sometimes I need to lay flat and rest.

Another description of fatigue is explained in the Spoon Theory by Christine Miserandino

She gives her best friend twelve spoons to answer the question, “what is Lupus like?” For each activity she wants to do- it costs her a spoon. When the spoons are gone, you start saying no.

Lupus is different for each patient. Some experience mild symptoms but others have moderate to severe symptoms.

Symptoms from the Lupus Foundation of America include:

1. Fatigue

2. Hair loss/ breakage/brittle or ragged hair

3. Unexplained low- grade fever

4. Headaches

5. Rash butterfly -like on cheeks and nose

6. Painful, joint stiffness or swelling

7. Kidney inflammation including darker urine, swelling of feet or lower legs

8. Pulmonary issues chest pain including asthma

9. Gastrointestinal problems like acid reflux

10. Thyroid problems, weight loss or weight gain

11. Dry or itchy eyes and mouth sores

12. Anemia

13. Raynauld’s syndrome hands and feet sensitivity and pain from cold

Many are prescribed hydroxychloroquine when first diagnosed. “Five or six months later I felt somewhat better. It really took that long to help the inflammation and pain improve.”

I changed my diet. Stopped using aspartame, artificial ingredients, and limited processed foods and preservatives. I still struggle with weight gain brought on by Lupus.

I’ve been diagnosed with Lupus for eight years now although I’ve had it since I was very young. My increased symptoms, also known as flares come and go.

I can recall my first flare when I was about ten. I experienced so much hair loss; my mom took me to a specialist who told me I just needed more sleep. If only that were the cure. Sleep is one of the most difficult things for me now. I can fall asleep, staying asleep is the challenge, and poor sleep increases the fatigue.

Here are 10 Tips to Improve Symptoms from Chris Iliades, MD in Everyday Health

1. Reduce Stress to Reduce a sudden worsening of symptoms called a flare

2. Exercise for Stress Reduction and Joint Health

3. Eat a Heart-Healthy Diet

4. Get enough Sleep

5. Limit Time in the Sun

6. Consider Vitamin D

7. Don’t Smoke this increases inflammation

8. Ask Your Doctor about Alcohol it may interfere with some medications

9. Get Support from friends, family or a support group

10. Get Serious About Your Lupus — learn your triggers

@vidarnm unsplash

You can control some things that trigger your flares.

Limit sun exposure and avoid the sun between 10 a.m and 3 p.m when the U.V rays are at their peak.

Sunscreen is a must, and a big floppy hat or an umbrella with u.v. protection helpful when you can’t find shade.

Drink plenty of fluids. Lupus can be dehydrating, which can then increase the inflammation.

 

The takeaway from this

You can live with Lupus. Learn the symptoms and triggers for your flares.  Get rest when you need it.

Be kind to yourself. 

8 thoughts on “Understanding Lupus”

  1. I was diagnosed in April with Lupus and Psoriatic Arthritis. I have been in a flare up since March. My rheumatologist isctrying diffetent medications but nothing has worked so far. Ibam in tremendous pain and my tongue isceven bothering me.

    Liked by 1 person

    1. Hi Tammy, I’m not a medical professional just a patient myself. I avoid the sun, like a vampire. Heat and humidity are also tough on me.
      Be patient, because the medication take a long time to see any benefits.
      Be kind to yourself, this is a tough disease. Allow yourself time to rest if even for a few minutes.

      Like

  2. I have lupus . It has caused other issues. I’m on pills for every issue. So I’m on 20 pills a day . I fight every day. But I feel blessed. Now I’m fighting weight gain.

    .

    Like

  3. Omg this happened to me too! I was handed a pamphlet and told I was in the Lupus family. I was overwhelmed, scared and angry. To be handed a piece of paper telling me my life will now change forever. Will always remember that moment. That was 13 years ago and I am fighting and still here

    Like

  4. Hi, I’ve been living with Lupus for twenty-three years and it has not been easy. I never knew what was wrong in the beginning before I was actually diagnosed. I was pregnant, but I miscarried 3 times. My OB GYN said to me that something is going on for that to happen. I was asked could he do some testing and I agreed. At that time of testing I was 3 months pregnant. The test results came back saying I had Lupus and that my pregnancy was high risks because of the Lupus. I carried my baby up to 26 weeks and had an emergency C-section and he was born at 1 pound 13 ounces. So Lupus is disease which makes it difficult to carry a baby to full term. My baby now is 23 years old weighing 165 pounds . My days are up and down , I will continue to fight this awful disease.

    Like

    1. It’s a blessing to find a doctor that has an “a ha” moment and wants to search for the answer. I’m very sorry for your loss, I was never pregnant, but adopted two beautiful children.

      Like

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