One Spoon at a Time: A Guide to Autoimmune Disorders
But you don’t look sick.
Those who suffer from autoimmune disorders often hear that they don’t look sick because they have no visible symptoms.
While friends, family, and even doctors may be well-meaning, saying this invalidates the illness.
So, Christine Miserandino, an award-winning blogger who has lupus, set out to educate people on autoimmune disorders with her website ButYouDontLookSick.com, which introduced The Spoon Theory.
Her Spoon Theory, where silverware represents energy, gives an accurate visual of what it’s like to live with lupus. (But this can be applied to any chronic illness or autoimmune disease).
At dinner one night, she handed her friend a bouquet of twelve spoons and asked her to pretend she has lupus and then says what a typical day is like for her.
After each task the friend mentioned – showering, getting dressed, cooking dinner – Miserandino took away one of her spoons. After dinner, her friend had used all her spoons.
This simple exercise became a way to let people know that those with chronic illnesses have choices to make every day and must be selective about how they spent their time.
Also, it stresses how necessary it is to take their medication so they can perform daily activities and spawned the term “spoonie” as a way for those suffering from chronic illness to describe themselves.
Even more importantly, though, it opened a dialogue about autoimmune disorders.
This may lead to questions like:
- What is an autoimmune disease?
- Can a person have lupus and fibromyalgia at the same time?
- What symptoms may they have?
This comprehensive guide will answer these questions and more.
What is an autoimmune disease and why do I need to know about them?
Typically, the immune system’s antibodies prevent you from getting sick.
But when someone has an autoimmune condition, their immune system acts like a bouncer at an exclusive new club and it takes its job seriously.
This means it goes on a power trip and misidentifies the good guys as bad, grabs them by the shirt, lifting them off the ground, and tosses them onto the sidewalk.
Meanwhile, the bad cells sneak past as the good cells lay there bleeding and probably embarrassed.
Okay – that scenario might only happen in movies and the cells don’t bleed. However, there are millions of people living with the results of the bouncer’s (immune system) misidentification of patrons (cells).
According to Genentech, a leading biotech company estimates that approximately 23.5 million people, or eight percent of the population, have an autoimmune disease.
So, this means you may be unaware that a friend, neighbor, co-worker, or someone you know suffers from one.
How do you get an autoimmune disease, anyway? Are they contagious?
Autoimmune diseases aren’t contagious, as some people believe.
How you acquire an autoimmune disease is largely unknown, but doctors have pointed to some factors that may contribute to them:
Gender – Women get autoimmune diseases at a rate of 2 to 1 compared to men, often between the ages of 14-44.
Ethnicity – Some autoimmune diseases are more prevalent in certain ethnic groups.
For example, lupus affects more African-American and Hispanic people than Caucasians.
Genes – Autoimmune diseases can be passed down.
That seems unfair. I think I heard there has been a rise in autoimmune diseases… is that true?
Yes, there has been a rise in recent years.
Researchers suspect the rise of autoimmune diseases is due to environmental factors, like infections and exposure to chemicals.
Also, they believe a diet of high-fat, high-sugar, and highly-processed food is linked to inflammation, though this hasn’t been proven.
They also credit the rise in autoimmune disorders to a theory called the Hygiene Hypothesis, explained by Live Science as a theory that suggests children who live in very clean environments are going to have a more difficult time fighting off germs.
Hmm… I know there’s lupus and a few others, but can someone have more than one autoimmune disorder? Like fibromyalgia and lupus?
There are over eighty autoimmune diseases, but we’ll be focusing on lupus and fibromyalgia, and if you can have them both. To answer that, though, you should understand each.
I know a bit about lupus. What else can you tell me?
So, you know lupus is an autoimmune disease and it works like, well, an autoimmune disease.
Remember talking about the immune system as an overzealous, aggressive bouncer? This Youtube video shows how the bouncer in action.
Lupus is still largely a mystery, though. The Mayo Clinic calls it The Great Imitator because the symptoms of lupus act like those of other ailments, making diagnosis difficult.
It’s also been suggested that some people may be more prone to developing lupus than others.
It’s believed that lupus can be triggered by infections, certain drugs, or even sunlight (since people with lupus are often photosensitive).
Systemic Lupus Erythematosus, or SLE, is a chronic disease that can have phases of alternating (mild to worse) symptoms, such as:
- Severe fatigue
- Joint pain and/or swelling
- A butterfly-shaped rash on the cheeks and nose (the most distinct symptom)
- Hair loss
- Blood-clotting issues
SLE becomes known as lupus nephritis when it inflames the kidneys and causes the following:
- Weight gain
- High blood pressure
- Dark urine
- Foamy, frothy urine
- Urinating during the night
This can often be life-threatening and requires immediate medical care.
Can you tell me about fibromyalgia now?
Fibromyalgia has a global effect on the patient, physically and mentally. This is because multiple systems are affected by fibromyalgia.
It’s characterized by widespread pain in the muscles and soft tissues and is accompanied by various symptoms.
Dr. Marty Ross, who specializes in treating chronic illness, says fibromyalgia “pain can be present in the absence of injury or inflammation and is transient in nature.”
The symptoms of fibromyalgia are:
- Abdominal pain
- Anxiety or depression
- Chest pain
- Cognitive impairment
- Difficulty concentrating
- Low libido
- Tingling in the skin
- Sleep disturbances
Are there any similarities between lupus and fibromyalgia?
Fibromyalgia and lupus are similar in nature and have some overlapping symptoms (like fatigue and issues with memory).
This is the reason people with fibromyalgia are often misdiagnosed with lupus. The biggest common denominator between lupus and fibromyalgia is the pain, though.
Can you have lupus and fibromyalgia at the same time?
A 1994 study by Dr. Gregg Middleton, Dr. Peter Lipsky, and registered nurse Jackie Mcfarlin called The prevalence and clinical impact of fibromyalgia in systemic lupus erythematosus reported that 22% of those with lupus also have fibromyalgia.
Several other autoimmune disorders can occur at the same time as fibromyalgia, such as rheumatoid arthritis and Sjogren’s syndrome in 25% and 50% of cases respectively.
Published in the medical journal Arthritis & Rheumatism, the study indicated that lupus patients with fibromyalgia were more likely to have widespread pain, issues sleeping, abdominal pain, depression, and be sensitive to light and noise.
Thus, they concluded that it’s common for people with lupus to also have fibromyalgia, which generally makes up most of their symptoms. Also, they found that people who have both are less likely to be able to perform daily activities and maintain employment.
That was a lot to take in! What should someone do if they think they may have lupus, fibromyalgia, or any other autoimmune disorder?
Lupus and fibromyalgia aren’t the only autoimmune disorders that can present at the same time; you can have any combination of them.
If you believe you may have an autoimmune disease, the best course of action would be to consult your family doctor.
They will evaluate you and then possibly refer you to a rheumatologist, who specializes in musculoskeletal diseases and diagnosing autoimmune conditions.
Is there any sort of testing for autoimmune disorders?
The journey to diagnosing autoimmune disorders, whether it’s one or a combination, can be a long, difficult process.
Namely, it’s common for people to undergo over six months of testing with several doctors and specialists before they’re diagnosed and can begin treatment.
Though all autoimmune disorders are unique, the diagnosis process is similar: blood tests, a physical examination (where the doctor may look for swelling in the hands and feet), x-rays of joints, and an intake interview.
This also means your doctor will ask you questions about your lifestyle and take a family history (since it’s believed genetics correlate with autoimmune disorders).
Then, they’ll ask about the symptoms you’re experiencing and how they affect you.
The following blood tests may be ordered:
Doctors will test your blood for auto-antibodies. If they are present, the test will be positive. The ANA test is best done during or around a flare-up or you may get a false negative.
Organ Function Tests
The rheumatologist may be particularly interested in your kidney function if they suspect you may have lupus.
Rheumatoid Factor Test
Rheumatoid Factors are proteins that can attack healthy tissue. A normal Rheumatoid Factor is typically between 0.0 and 0.14. Anything higher is usually indicative of rheumatism.
Full Blood Panel
This will rule out certain types of cancers (such as leukemia and bone cancer) and other ailments.
If you are diagnosed with an autoimmune disease, you may have to see your rheumatologist every three or four months for a check-up where you will get blood work. Medication and lifestyle changes, such a diet and exercise, may improve symptoms.
Is there a cure for them?
While autoimmune disorders can’t be cured, they can be managed. Most people with autoimmune diseases can live a normal life when they educate themselves, become proactive in their treatment, and follow the orders of their doctor.
Sometimes, people with autoimmune disorders may go into remission, but they should continue being vigilant about their health.
With careful treatment, they can have a normal life expectancy and not let their disease act as a barrier between them, their goals, plans, and dreams.