Sunday, 22 December 2013

Living With Lupus: Fatigue

Do you suffer from that horrible, overwhelming fatigue that makes you feel like you have been hit by a truck and reversed over several times? If so, you are not alone. 90% of lupus patients experience some degree of fatigue, with many experiencing that life-sucking fatigue that knocks you off your feet and pushes you to the ground. The Lupus Site say that " these symptoms may vary from severe, to fleeting or persistent. As many of my fellow lupus patients will testify, lupus fatigue is more than 'just being tired' or 'feeling a little sleepy'. Most lupus patients experience extreme fatigue, which cannot be improved with sleep. It is always there, a stubborn presence in our lives that refuses to go away. It is
difficult trying to explain the sort of fatigue we experience to the people in our lives who don't have lupus. "Everyone gets tired," is what they usually say in response. "Just get some more sleep," others say. "You just need some exercise," the doctor sometimes says. Yes, everyone gets tired. But lupus fatigue is extreme and debilitating. We can't just 'push through it,' and no amount of sleep will help it at all.    

A Canadian study of 100 women with lupus found that we are simply not imagining or exaggerating our fatigue; they found that lupus patients have more fatigue than others (no sh*t Sherlock!) The researchers also found that the fatigue was caused by many various factors, not just from the disease process. Fatigue can be influenced by pain levels, mood (fatigue seems more common in those experiencing low mood and depression), disease severity, by how well you sleep (quality and quantity of sleep), your activity levels and on the level of support you receive from friends and family.

The researchers found that there are two types of fatigue experienced by lupus patients: physical and mental fatigue: 

Physical fatigue is where you feel physically unable to do something, like being too tired to get out of bed, or move. The researchers say "You should listen to it. Rest. Sit down or just collapse in bed for awhile." The researchers found that physical fatigue was associated with poorer quality and quantity of sleep, as many lupus and fibromyalgia patients will testify. I would like to add that I believe that physical fatigue can also be related to pain levels, disease activity and how well you pace yourself. The study suggests undertaking exercise to help with the physical fatigue, but the problem with this is that many lupus patients are too sick to exercise. It is not because we are lazy, it is simply because we are too ill. Standing up is an achievement for me most days, let alone exercise! If you can exercise, great, go for it! But if you can't, please don't beat yourself up about it. It is not your fault. However, there are other ways to help with the fatigue, which I will discuss shortly. 

Then there is the mental fatigue, which resembles the brain fog many lupus patients experience. I find mental fatigue very exasperating. I am a student of biology at university and compared to the focused, productive student I used to be at school ten years ago, I barely recognise myself. My brain feels like it is wading through mud and I feel like I am being constantly followed by a foggy cloud, which sucks the thoughts and life out of me. I find it very hard to concentrate and focus. I often end up reading the same thing over and over again and nothing will sink through. I seem to have no short-term memory and I'm always forgetting what I am meant to be saying half-way through my sentences. I curse myself for this, though I know it is not my fault, because the fog makes me feel dumb and stupid.  To those who don't understand, I appear slow, or anxious or bird-brained. Just like physical fatigue, this sort of fatigue is very difficult to explain to those who don't walk in our shoes. 

The researchers found that mental fatigue may be influenced by pain levels; the greater the pain, the more severe the mental fatigue. I can certainly vouch for that. Being in physical pain is physically exhausting and when you are in severe pain every single day, it becomes mentally exhausting. They also found that depression tended to be associated with mental exhaustion. In my opinion, I feel that depression is often a reaction to the frustration and despair caused by mental fatigue. 

There is not a magic cure for mental and physical fatigue, however there are little things we can do to help us out. WebMD's online lupus centre have some good resources on this subject. Firstly, here are some of the suggestions they have on dealing with lupus fatigue: 

1.  Treat Underlying Conditions That May Cause Fatigue

“Fatigue with lupus is sometimes caused by an underlying medical problem, such as anemia, fibromyalgia, depression, or a kidney or thyroid problem. And in some cases, it can be a side effect of medication,” says Meenakshi Jolly, MD, MS, director of the Rush Lupus Clinic and assistant professor of medicine and behavioral medicine at Rush University. “In these cases, we can often treat the fatigue by treating the condition or changing the patient’s medication.”
Ask your doctor to check if your fatigue may be related to another condition or a medication. If it is, find out about treatment.

2. Get Enough Rest to Prevent Fatigue

Most people do best with at least seven to eight hours of sleep each night. If you have lupus you may need even more sleep.
“It’s important to develop good sleeping habits,” says Jolly. “It can really make the difference in getting a good night’s sleep.”
  • Take time to relax before bedtime. A warm shower or bath can help.
  • Avoid alcohol and food or drinks that contain caffeine after dinnertime.
  • Don’t watch TV right before bedtime because it can be distracting. Read a book instead.
If there are times when you know you won’t get a full night’s sleep, you may need to plan to make it up the next day.
Even with a full night’s sleep you may need to take several rest periods throughout your day. “Some people may need to plan short periods of rest after each activity,” says Jolly. “This gives your body time to catch up and can make a big difference in how you feel.”

3.  Prioritize Activities When Living With Lupus

It’s easy to feel overwhelmed by all the things you need to do. Keeping an activity schedule for day-to-day basics can be a way to help organize your time. This way, you can plan for the things you need to do and make sure you have enough time to rest in between. When planning your schedule, do the things that are most strenuous when you feel your best. And try to break up bigger projects into smaller tasks. But try to be flexible. If you don’t have enough energy one day, don’t force yourself to do everything on your list. Reschedule those tasks instead.

5. Keep a Diary to Track Lupus Fatigue and Learn to Say No

“One of the most difficult things for people with lupus is learning to say no,” says Jolly. But if you want to have energy for the activities that are most important to you, then it’s a must. Focus on listening to your body and saying no to activities you know will leave you exhausted. Do what you need to do for yourself.
Keeping a diary is a good way to track how you feel. “A diary can be a great tool to help you learn what types of activities make you feel good and what makes you feel lousy,” says Jolly. “It can really help some people connect the dots.”
Stress can also add to fatigue, so try to avoid activities you know will increase your stress level. Instead, try to build relaxing activities into your day.
“Having lupus forces you to look at your life differently, but it doesn’t have to be negative,” says Utterback. “Lupus has actually given me a lot of gifts, such as teaching me to slow down and learning how to put myself first.”2

If you would like to try these tips, or have tried them, and would like to share your experiences, please leave comments at the end of this blog post. 

As a final note on lupus fatigue, I will leave you with Christine Miserandino's Spoon Theory video; which if you have not heard about already, provides an excellent way of explaining lupus fatigue to others: 

Thank you for taking the time to read my blog post. I hope that you have found it useful and I also hope that you enjoyed  it! Please leave any comments you may have below. 

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Saturday, 21 December 2013

Another Ten Things You Should Know About Lupus

Here are another ten things you should know about lupus: 


Lupus can affect the heart and the rest of the cardiovascular system. It can cause heart diseases including pericarditis, myocarditis, endocarditis, atherosclerosis, heart disease and heart failure. Pericarditis, myocarditis and endocarditis are diseases which affect various tissues of the heart, caused by inflammation. Lupus patients have an increased risk for heart disease, due to factors including high blood pressure and steroid treatment. Steroids can increase the cholesterol levels in your blood. Heart disease occurs when cholesterol builds up in your blood, which accumulate into 'plaques' that clog up your blood vessels and arteries (atherosclerosis). This decreases blood flow, which can result in a heart attack if blood flow to the heart is interrupted. If the doctor suspects that you might have heart involvement, he/she will arrange blood tests, chest X-rays, an electrocardiogram, or an echocardiogram may be used to find out if you have a heart condition caused by lupus.


Low white blood cell counts are common in lupus, either due to active lupus, or certain medications (some immune-suppressant drugs), or another illness. The medical name for low white blood cell count is leukopenia. White blood cells are cells of the immune system and they are designed to protect the body from infection. There are several types of white blood cell: neutrophils (neutropenia is the medical name for low levels of these), monocytes and lymphocytes. Low white blood cells may make a person more susceptible to infection, which is why doctors carefully monitor your white blood cell count. 


As lupus can potentially affect everything and anything in the body, lupus patients often undergo a wide variety of tests, to diagnose lupus and other problems, and to monitor the lupus itself. However, there "are many challenges to reaching a lupus diagnosis. Lupus is known as "the great imitator" because its symptoms mimic many other illnesses. Lupus symptoms can also be unclear, can come and go, and can change." No two lupus patients are ever the same; lupus affects each person differently and in terms of treatment, what works for one, may not work for another. Therefore, treating lupus must be individualised for the patient. 

Diagnosing lupus is often a long and complicated process. The Lupus Foundation of America (LFA) say that the doctor will evaluate "your current symptoms, laboratory test results, your medical history and the medical history of your close family members (grandparents, parents, brothers and sisters, aunts, uncles, cousins)". The LFA add that "all of this information may be necessary for a doctor to make a diagnosis of lupus. A variety of laboratory tests are used to detect physical changes or conditions in your body that can occur with lupus. Each test result adds more information to the picture your doctor is forming of your illness." 


Blood disorders are common in lupus, according to the Lupus Foundation of America. They add that the most 'often affected by lupus are the red blood cells, the white blood cells and platelets', with the most common issues including anaemia (low level of haemoglobin or red blood cells), hemolytic anemia (destroys red blood cells),abnormal blood clotting, thrombocytopenia (low platelets) and leukopenia (low white blood cell count). Your healthcare provider should regularly arrange full blood counts.


Vasculitis is another autoimmune disorder that can coincide with lupus. Vasculitis means inflammation of the blood vessels. Vasculitis causes the immune system to attack the blood vessels, causing inflammation. There are a wide range of symptoms, depending on which part of the body is being affected. These may include: severe fatigue, fevers, weight loss, muscular and joint pain, peripheral neuropathy, visual problems, neurological problems (if the vasculitis affects the brain) such as headaches, seizures, strokes and mood disturbances, gangrene, and skin problems such as rashes, ulcers and petechiae. Vasculitis affects everyone differently and no two vasculitis patients are ever the same. Some people have mild forms of the disease, whereas others have more severe, life-threatening vasculitis. oms can be mild, or moderate or severe, or life-threatening. Just like lupus, vasculitis is diagnosed with a wide range of tests and medical history etc. Blood tests may include checking for ANCA and inflammatory markers such as CRP and ESR. Full blood counts are often arranged, because vasculitis can cause blood disorders like anaemia. Other diagnostic tests may include x-rays, MRI, ultrasound, electrocardiograms, biopsies, physiological tests and angiograms. Vasculitis is treated similarly to lupus, with biologics, immune-suppressants, steroids or cyotoxic drugs. 


Eye problems are quite common in lupus and include syndromes such as uveitis, nerve damage, scleritis and Sjogrens. 

The middle layer of the eye is called the uvea. Uveitis is the inflammation of this middle layer. Symptoms include: pain in the affected eye, blurred vision, bloodshot eyes, light sensitivity, visual distortions and a feeling of soreness. I have had uveitis before and the pain was horrific. It was treated with steroid eye drops and pain-killing eye drops. It took about a week for the treatment to work. Uveitis is a common disorder that occurs in lupus and other conditions that affect the immune system. Scleritis is the inflammation of another part of the eye called the sclera. 

Sjogren's is another systemic autoimmune disorder, which can affect the eyes and the rest of the body. The main symptoms include sore, dry, or sticky eyes, dry mouth, fatigue, joint pain and other symptoms including swollen salivary glands and rashes. It can affect the gastrointestinal system, the kidneys, lungs, liver and other organs. The dry eyes and mouth are the most common symptoms of Sjogrens. This disorder is commonly associated with disorders such as lupus, rheumatoid arthritis and other autoimmune rheumatic disorders. 

Information about treatment of Sjogren's: 
Currently, there is no cure for Sjögren’s syndrome. However, treatments may improve various symptoms and prevent complications.
In addition to over the counter (OTC) eye drops and mouth preparations, prescription products for dry eyes and dry mouth are available. They include Evoxac® (cevimeline), Salagen® (pilocarpine hydrochloride) and NeutraSal® for dry mouth and Restasis® (cyclosporine ophthalmic emulsion) and Lacrisert® (hydroxypropyl cellulose ophthalmic insert) for dry eye.
Some patients are prescribed immunosuppressive medications to treat their internal organ manifestations. Physicians may also prescribe other medications for systemic manifestations or severe flares. Since Sjögren’s syndrome affects each patient differently, a personalized plan should be developed by you and your physician, dentist and eye care specialist about how to treat your various symptoms.
In addition, many symptoms and problems of Sjögren’s syndrome can be treated with over-the-counter medications. These medications can help to alleviate different types of dryness and pain, but you should check with your physician when adding these medications to your regimen. He/she may have suggestions for what products you should use and may also give you some tips on how and when to use them.


Brain fog is a common complaint amongst lupus patients and is one that affects me quite badly. I find it hard to concentrate and I regularly forget my own, what day, month or year it is; why I walk into a room, where I am and what I am doing; I get tongue-tied and forget what I am meant to be saying halfway through my sentences, forgetting the words for things (or getting them muddled up) and I do whacky stuff, like putting the kettle in the fridge, or putting the remote control in my bad because I mistakenly think it is my mobile phone. If I listed all the odd things I have done during my fogs, I could probably write you a novel or two. Here is some practical information and tips for dealing with brain fog: 

Many patients have told me about their experiences with what they, like you, call “brain fog.” They say they have trouble remembering things and can’t think as clearly as they used to. It can be very alarming when this happens. Loss can be felt on many levels, from the practical loss of memory and the ability to think clearly to the general loss of what makes you uniquely you—your identity. People tell me all the time about the things they haven’t been able to do anymore because of lupus. Many have had to come to terms with these losses by redefining themselves and finding a “new normal.”
Doing this takes time. It’s a process that involves coming to terms with the way you now think and remember. This loss can be very difficult, but it does not mean you are defeated.

Meanwhile, there are practical things you can do to help your memory and fight back against “lupus fog”:
  • Make “To Do” lists to keep track of your tasks. People say, and I agree, that it feels so good to cross things off the list, so not only will it help you remember, but you could feel a great sense of accomplishment.
  • Use a calendar to remind you of appointments; electronic calendars can even be set to send you reminders.
  • Use alarms to help you remember tasks and appointments. Many cell phones have a built-in scheduler with an alarm.
  • Use a Days-of-the-Week pill box or other type of pill organizer to monitor when to take medication. Some even come with alarms.
  • Keep belongings in obvious places, and always in the same place. For example, always place your keys on a hook near the door, or your cell phone charger in your purse. It’s a comfort to know where things are!
  • Declutter. Being organized will help you find things. And letting go of unnecessary items can feel surprisingly liberating.
  • Label drawers, cabinets and shelves if you need help remembering how you organized your things.
  • Stock up on Post-It notes and place them strategically, where you’ll actually see them! Do you have to remember to pick up paper towel tomorrow? Write it on a Post-It and stick it on your front door. You’ll see it on your way out.
  • Keep a pen and pad on you at all times – in your pocket or purse. If you are out and about and happen to spontaneously remember something or are told something important that you don’t want to forget, you have a way to make sure you remember the information later.
  • Leave yourself voice messages on your cell phone or voice mail.
  • Keep a little digital camera in your purse to take pics and remind you of places you’ve been and things you’ve done. Cell phone cameras work for this too. Download and organize every month or so, to jog your memory and keep track of where you’ve been and what you’ve done…
If you are in the middle of a fog and are feeling frustrated or upset, don’t forget to pause and breathe. Remember that these challenges do not define you or your intelligence. You will get through the moment.


Lupus is a very complex condition and therefore requires complex management. As I often say, no two lupus patients are the same and every patient experiences different symptoms. A lupus patient needs an individualised treatment plan, which is managed by a multi-disciplinary team of healthcare professionals and by the patient himself/herself. Treatment will be tailored to your individual needs. Here is a brief overview of the lupus treatments available at this time: 

Treatments may differ, depending upon the person with lupus and the physician. There is, however, a general consensus on several forms of treatment:
  • physical and emotional rest
  • avoidance of, or protection from direct sunlight
  • healthy diet
  • prompt treatment of infections
  • avoidance of known allergens and aggravating factors
  • female patients must plan pregnancy for times when the disease is in remission
  • Medications most frequently used to control symptoms are nonsteroidal anti-inflammatory drugs (NSAIDs)
  • antimalarials
  • corticosteroids
  • immunosuppressants (or cytotoxic drugs)
  • other medications may be necessary to control specific manifestations

I'd also like to add that drug therapies using monoclonal antibodies are being used more often these days (e.g. rituximab) and in 2011, a new drug of this kind was invented, which is called Benlysta. Benlysta is the first lupus drug to be made in over 50 years. For more information about this drug, here is some further information: 


Muscle pains are quite common in lupus patients. "Two-thirds of people with lupus complain of muscle aches (myalgia), typically between the elbow and neck or the knee and hip. The muscle doesn't actually weaken, although in about 15 percent of people with lupus it become inflamed at some point, a condition called myositis," SLE Lupus Foundation says.

Myositis means 'inflammation of the muscles', and is another autoimmune disorder sometimes associated with lupus. I suffer with this condition too. It is often debilitating and I tend to struggle more with the myositis than I do with lupus. Symptoms of myositis may include muscle weakness, muscle pain, rashes, difficulty swallowing, muscle wasting and generally feeling unwell and tired. At times, my myositis has been so bad that I have been unable to lift my head off my pillow, or lift my arm to do my hair. I regularly struggle with climbing stairs, sitting down and getting up off a chair, swallowing, getting into and out of the bath, and generally getting out and about. It is usually diagnosed through a combination of medical history and tests, which include EMG, muscle biopsy, MRI, CT scans and blood tests checking your muscle enzymes (e.g. Creatinine Kinase) and other inflammatory markers. Myositis is usually treated with steroids and immune-suppressants, similar to lupus. I am one of the rare myositis patients who do not take steroids for this illness (though I do need them!) because I experience severe depression, mania and anxiety, whenever I take oral steroids. This is probably because I have had mental health problems for most of my life, so I may be more susceptible to the mental health side effects of steroids. 


Most lupus patients will experience joint pain, caused by the inflammatory processes of lupus. "Most people with SLE develop some joint and muscle pains. Sometimes only a few joints are affected, whereas other people have many joints affected. The small joints of the hands and feet tend to be the ones affected most. The pains may 'flit' from joint to joint. Joint stiffness is common and is usually worse first thing in the morning. Mild joint swelling may occur but severe arthritis with joint damage is unusual." Doctors call this 'lupus arthritis'. Symptoms of this include stiff, painful, swollen joints with redness and warmth over the affected joint. Lupus arthritis can potentially affect any joint in the body. The Lupus Foundation of America says "Compared to rheumatoid arthritis, lupus arthritis is less disabling and less likely to cause destruction of the joints".

What can be done about the joint pain? Here is some excellent information from the SLE Lupus Foundation

A doctor first needs to determine what is causing your discomfort, and rule out other possible causes. You may get some relief by applying heating pads to painful areas or taking warm showers and baths to lessen stiffness. Alternatively, try cold packs — this helps some people. If the joint is severely inflamed, handle it very carefully. Rest and elevate it (pillows and blankets are good props) as much as possible, and avoid putting weight on it. Also stay away from activity that increases pain, tenderness, swelling or the sensation of increased heat. A physical therapist or friend (he or she should get trained) can gently move the inflamed joint to prevent extreme stiffness. Finally, anti-inflammatory medications often help with pain and to reduce inflammation; ask your doctor for guidance.

For the rest of this article, click on the link to the page:

Thursday, 19 December 2013

10 Things You Should Know About Lupus


In autoimmune disorders like lupus, the immune system does not work in the way it should. The immune system is what protects our bodies from aliens like bacteria, viruses and other such nasties. When the body comes into contact with any of these aliens, it makes antibodies - the Jedis, which attack and destroy any invading aliens. An immune system that functions normally, it can tell the difference between aliens and body tissue, so that the antibodies only attack the bad guys and leaves the good guys alone. In autoimmune disorders, the immune system cannot tell the difference between good and bad, and it produces these nasty autoantibodies (the dark side of the Force), which attack both the good and bad guys. The immune system turns against the body, (hence 'autoimmune'; 'auto means self') you are up against the full might of your immune system, which attacks body tissue just as savagely as it attacks invaders. This autoimmune mechanism is what causes the inflammation, pain and swelling in autoimmune disorders like lupus. The SLE Lupus Foundation explains, "When you have lupus, your immune system has stopped working properly, and antibodies that normally protect you against infection are misdirected and react against substances in your cells or tissues. This may cause inflammation, injury and pain [to your body and organs]." 


It is not yet known what exactly causes lupus, although doctors and scientists think it may be caused by a combination of genetics, environmental factors " possibly hormonal factors combine in some way to cause the condition."*  The LRI add that while " lupus can run in families, it most likely takes external factors to trigger the illness, such as overexposure to ultraviolet rays or the use of certain drugs. Infection, trauma, stress, surgery and hormones may also trigger lupus." Please be aware that lupus is NOT a sexually transmitted disease, NOR can it be transmitted from person to person in any other way. LUPUS IS NOT CONTAGIOUS. *


The most common lupus symptoms may include fevers, blood disorders such as anaemia and blood clots, skin rashes (including the infamous butterfly rash), hair loss, severe fatigue, muscle and joint pain and swelling, pleurisy, oral and nasal ulcers, sun sensitivity, kidney disorders, weight and appetite loss, seizures, psychosis, depression, organ involvement, lupus 'fog' (cognitive dysfunction) and migraines. Because lupus can potentially affect every and any organ in the body, the symptoms are wide-ranging; lupus affects every patient differently. No two lupus patients are ever the same. Similarly, treatments that work well for one lupus patient may not work in another, and vice versa. There may be other symptoms not mentioned on the list above. The intensity of the lupus is also different for every lupus patient; some may have mild forms, others may have moderate, or severe, or life-threatening. Treatment of lupus must be tailored to the individual patient.


Diagnosing lupus is often very difficult and can take a long time. It can be a very frustrating experience. Lupus is known as the 'great mimic', because the symptoms are often similar to other illnesses, like MS, arthritis, Lyme disease and many others. There is no single lab test which can diagnose lupus, so physicians use a number of diagnostic tests, your medical history and conduct physical examinations to come to a final diagnosis. Many physicians use the American College of Rheumatology's lupus criteria to help them diagnose lupus. If you meet at least four out of the eleven criteria, then it is highly likely that you have lupus:
The “Eleven Criteria of Lupus”

1. Malar rash – butterfly-shaped rash across cheeks and nose

2. Discoid (skin) rash – raised red patches

3. Photosensitivity – skin rash as a result of unusual reaction to sunlight or sometimes a flare of other lupus symptoms after sun exposure

4. Mouth or nose ulcers – usually painless

5. Nonerosive Arthritis – (bones around joints do not get destroyed) in 2 or more joints with tenderness, swelling or effusion

6. Cardio-pulmonary involvement - inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)

7. Neurologic disorder - seizures and/or psychosis

8. Renal (kidney) disorder - excessive protein in the urine, or cellular casts in the urine

9. Hematologic (blood) disorder - hemolytic anemia, low white blood cell count, or low platelet count

10. Immunologic disorder - antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin

11. Antinuclear antibodies (ANA) – positive test in absence of drugs known to induce it. 

The Lupus Research Institute adds that a "positive antinuclear antibody (ANA) test does
not automatically mean you have lupus. Your immune system is your body's natural defense against disease. A positive ANA blood test shows that your immune system is making an antibody (protein) that reacts with components of your body's cells. This is called autoimmunity and may or may not be harmful to your body. So while a positive ANA may be associated with an autoimmune illness like lupus, it does not mean you have the disease. Approximately 20% of the normal population will have a positive ANA test; positive tests are also seen in other conditions, such as thyroid disease, certain liver conditions, and other autoimmune diseases." 


Some lupus statistics provided by the Lupus Foundation of America:

  • Although lupus can strike men and women of all ages, 90 percent of individuals diagnosed with the disease are women.  Most people will develop lupus between the ages of 15-44. 
  • 20 percent of people with lupus will have a parent or sibling who already has lupus or may develop lupus.
  • The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus.
  • Systemic lupus accounts for approximately 70 percent of all cases of lupus. In approximately half of these cases, a major organ, such as the heart, lungs, kidneys or brain, will be affected.  Cutaneous lupus (affecting only the skin) accounts for approximately 10 percent of all lupus cases.  Drug-induced lupus accounts for about 10 percent of all lupus cases and is caused by high doses of certain medications.  The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.
  • Lupus is two to three times more prevalent among women of color -- African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders -- than among Caucasian women.  
  • A LFA survey of its members suggests that more than half of those afflicted with lupus suffered at least four years, and saw three or more doctors before obtaining a correct diagnosis of lupus.
  • About 5 percent of the children born to individuals with lupus will develop the illness                              



Hair loss is quite common in lupus patients, whether it is caused by the lupus itself or by certain medications such as methotrexate. The Mayo Clinic say that "lupus causes widespread inflammation that usually involves your skin — particularly on your face and scalp. Lupus can cause the hair on your scalp to gradually thin out, although a few people lose clumps of hair. Loss of eyebrow, eyelash, beard and body hair also is possible. In most cases, your hair will grow back when your lupus is treated. But some people with lupus develop round (discoid) lesions on the scalp. Because these discoid lesions scar your hair follicles, they do cause permanent hair loss. Lupus can also cause the scalp hair along your hairline to become fragile and break off easily, leaving you with a ragged appearance known as lupus hair. Hair loss may be an early sign of lupus, before the disease is diagnosed. But many other disorders can cause hair loss, so consult with your doctor if you notice unusual hair thinning or hair loss". 


Lupus can also affect the gastrointestinal (GI) system. The GI system consists of your mouth, throat, oesophagus, liver, pancreas, gallbaldder, intestines and rectum. Problems with the digestive system can be caused by the lupus itself, or by certain medications or by another illness. Acid reflux is a common problem, which is where stomach acid rises back up through your oesophagus, causing the familiar 'heartburn' sensation. Acid reflux is a chronic condition. There are medications that can help with this. Other problems include chronic constipation and side effects of certain drugs which cause symptoms like diarrhea, nausea and peptic ulcers. Steroids and NSAIDS such as aspirin-type drugs can irritate the stomach lining and potentially cause peptic ulcers. Gastroparesis caused by autonomic dysfunction is a common, but serious condition that can sometimes affect lupus patients. Other problems include pancreatitis,  IBS (irritable bowel syndrome), gastritis and liver problems (hepatic vasculitis, lupus hepatitis, medication side effects etc).


Lupus can affect the kidneys. 1 in 3 lupus patients have kidney involvement such as lupus nephritis. Lupus nephritis occurs due to the lupus causing "inflammation in your kidneys, making them unable to properly remove waste from your blood or control the amount of fluids in your body." Symptoms may include swelling of feet and other limbs, high blood pressure, blood and/or protein in urine and foamy pee. Lupus nephritis is a very serious illness and can lead to complications, such as end stage kidney disease. If your doctor suspects kidney troubles, he or she will order blood tests for creatinine and BUN. Lupus nephritis damages the affected kidney. It is treated in the same way as SLE lupus, depending on the severity of the kidney damage. Other causes of kidney problems in lupus patients may include infections (e.g. UTIs, kidney infections) and damage caused by certain medications e.g. aspirin and other NSAIDs.


Lupus patients are more likely to suffer from migraine-like headaches. Headaches and migraines are other common symptoms of lupus, which can occur with or without a flare. They can be quite painful and debilitating, producing typical migraine symptoms like vomiting, severe pain, visual distortions, sweats, light sensitivity, fatigue and nausea. Lupus headache is managed much like conventional migraine, using painkillers, anti-inflammatories, vasoconstrictors, & sometimes beta-blockers, or tricyclic antidepressantsWhat distinguishes these migraines from ordinary ones is that lupus migraines tend to respond better to steroids than traditional migraine treatments. Patients may respond to a 1 week trial of 20-60 milligrams of prednisone daily, which is rarely useful to migraine sufferers.


Depression is very common in lupus patients. It can either be a primary symptom of lupus, or caused by certain medications such as steroids or is a reactive depression. Symptoms of depression include low mood, fatigue, tearfulness, apathy, suicidal thoughts, anxiety, despair, sleep disturbances, irritability, weight and appetite changes, difficulty concentrating, loss of interest in things you used to enjoy and negative thoughts. Depression is usually treated through a combination of medication and talking therapies, depending on the cause and severity of your depression.

It is not surprising that people with chronic, painful and debilitating illnesses experience reactive depression. Constantly dealing with pain and illness takes its toll on our state of mind. People with chronic illness often have a lower quality of life; even more so if the pain or illness itself is poorly controlled. Lupus is an unpredictable and uncertain disease, and dealing with it is very stressful. It is hard to make plans, or look forward to the future when there is no way of predicting when the next flare up will happen. When we have no control over what happens to us, we may feel frustrated and helpless. Other issues, such as social isolation, loss of employment, money troubles, relationship breakdown, loss of independence and having to rely on others for even the most basic needs can also take their toll on us. Feelings of guilt occur because we worry about being a burden and not being able to do much for ourselves. 

Never be ashamed about seeking help for your depression. It takes a lot of strength and courage to ask for help. It is not a sign of weakness, or because you cannot cope. Depression is an illness just like a physical illness. It is not your fault. Always know that.   

For further information and for advice about how to manage this issue, please visit Healthline


Tuesday, 26 November 2013

The Spoon Theory

The Spoon Theory

by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
Cartoon image of Christine Miserandino holding a spoon

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino
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Sunday, 14 July 2013

Icy Fingers and Toes: A Guide to Raynaud's

My feet and hands are pure white and ice cold, like blocks of ice. I could probably create Arctic ice shelves with my extremities (hey, at least that would counteract the effects of global warming!). I have a strange cold burning sensation in my hands and feet, ears and nose. The colder my extremities get, the more painful they become, which aggravates the joint pain. Usually, I will wear several pairs of socks, no matter what the weather is like. What is this odd thing?  

It is called Raynaud's Syndrome.

Raynaud's  is defined as '...a condition in which cold temperatures or strong emotions cause blood vessel spasms that block blood flow to the fingers, toes, ears, and nose.'1 

During Raynaud's episodes, the blood vessels of the affected area(s) constrict, which decreases the circulation of your blood and therefore, the supply of blood to the affected area. The extremities are most affected, because the body is constantly concentrating on keeping our internal organs warm; so hands, feet, nose, ears etc, take a back seat.  The reduced blood supply causes discolouration of the skin of the affected area and that horrible cold iciness of our hands and feet (depending on what part of the body is affected). 

Primary Raynaud's is a condition that occurs on its own i.e. it is a primary condition, not caused by secondary to any other cause, which often 'begins in people younger than age 30'.2

Secondary Raynaud's can occur in connective tissue disorders such as lupus, scleroderma, Sjogren's, hypothyroidism, the occupational disorder vibration white finger, arthritis and other various illnesses. 


During an episode of Raynaud's, it usually starts with my fingers or toes changing colour, from pale white with an icy or numb sensation, then blue; purple; and red, with a burning sensation. When it affects my ears and nose, it feels like my head has been dunked in a cauldron of boiling hot oil. The icy and burny sensations can be very painful at times, and it makes handling things like ice and hot cups torturous. These episodes occur randomly, without warning and may last anything from a few minutes to a few hours. 

How is Raynaud's treated? 

The most essential course of action is to treat whatever is causing the Raynaud's (if it's a secondary condition). There are various medications that a doctor can prescribe to help with Rayanaud's.

Medications (which act on the blood vessels by relaxing them) include: 

Calcium channel blockers, which are medicines that widen the blood vessels to improve circulation of the blood. A commonly prescribed calcium channel blocker is nifedipine

Angiotensin converting enzyme inhibitors (ACEs), which are medications which also widen the blood vessels for improved circulation. Examples include captopril, lisinopril, enalapril and quinapril. 

Angiotensin II receptor antagonists are drugs that block a chemical made in your blood called angiotensin II. This chemical narrows the blood vessels, so drugs like valsartan and iberartan, stop this chemical from doing so, thus allowing for improved circulation.   

Selective serotonin reuptake inhibitors (SSRIs) are anti-depressant medicines that also widens the blood vessels and examples include sertraline (Zoloft/Lustral) and fluoxetine (Prozac). 

In extreme cases, intravenous infusions of prostacyclin are prescribed. This drug also widens the blood vessels.    

Lifestyle changes can also help alleviate the symptoms of Raynaud's. Here are some changes you can make: 
  • Cut down on caffeine (which is easier said than done for me!) 
  • Reduce your stress levels, as can aggravate Raynaud's (this too is easier said than done, as life with a chronic illness is stressful)! 
  • Quit smoking. Cigarettes cause blood vessels to constrict, which reduces the circulation in your extremities and aggravates the Raynaud's. I quit smoking three years ago and I haven't looked back. It was difficult, so please ensure you get all the help you need. Ask your healthcare provider for advice. 
  • Ensure that you keep warm and especially wrap up warm if you're going out in cold weather. The Mayo Clinic in the US advice is to  "Wear a hat, scarf, socks and boots, and mittens or gloves under mittens when you go outside. Put them on before you go outside. A hat is important because you lose a great deal of body heat through your head. Wear a coat with fairly snug cuffs to go around your mittens or gloves, to prevent cold air from reaching your hands. Wear earmuffs and a face mask if the tip of your nose and your earlobes are sensitive to cold. Run your car heater for a few minutes before driving in cold weather.
  • If you are able to exercise, regular exercise can help improve your blood circulation. Please consult your healthcare provider before embarking on any sort of exercise.  
  • Wear woolly, or thermal, or chunky socks. One of the best things I have ever bought in my life so far are microwaveable slippers. You can find these on websites like eBay or Amazon. You can also find other useful objects, such as hand warmers, thermal gloves, wrist warmers, ear warmers (knitted is best) and thermal underwear. 
  • The Mayo Clinic in the US recommend: "Wear socks. When taking food out of the refrigerator or freezer, wear gloves, mittens or oven mitts. Some people find it helpful to wear mittens and socks to bed during winter. Because air conditioning can trigger attacks, setting your air conditioner to a warmer temperature may help prevent attacks. You may also find it helpful to use insulated drinking glasses."
  • Taking Evening Primrose oil is said to help increase prostacyclin (a chemical made in the body that widens blood vessels). Before taking this supplement, speak to your doctor first as it may not be the right thing for you. 

Do you have Raynaud's? 

Below is a link to a Raynaud's screening quiz: 

Please remember to discuss any worrying symptoms with your doctor; if you suspect that you may have Raynaud's, mention this to your doctor so they can investigate and treat the condition. 

For further information and advice, the following links are helpful: 

Raynaud's information 

General Raynaud's information

UK-Based information leaftlet on Raynaud's

Raynaud's information: PDF

A wiki article:  Secondary Raynauds

Information on Raynaud's can be found here 

New York Times article on Raynaud's can be found here 

Raynaud's support in the States: 

Raynaud's support in the UK:

I hope you have found this article useful. Thank you for reading! :) 


2. See above.