Thanks to the blog “Purple Thoughts” for this entry. I have read it before and it is well worth printing here. Hope it educates and explains it better than I can.
THE TOXIC FATIGUE OF LUPUS
BY GLORIA ROSENTHAL
Almost all lupus patients have heard the phrase “But you don’t look sick” and we cringe inside, knowing the speaker’s words do not convey the speaker’s true meaning: “You can’t be so sick if you look so well”.
The fatigue that comes with lupus elicits the same reaction. Try to explain the feeling to a friend and the response is often “I get tired, too”. I want to pounce on those words and say “tired? You get tired? I want to screech that the fatigue that comes with lupus is as unrelated to a “tired” feeling as a hang nail is to a broken arm. Calling toxic fatigue a tired feeling is like saying a major flood is a minor trickle of water.
So let’s talk, first about what lupus fatigue is NOT. It is not a tired feeling. It’s not a “want to take a nap” feeling. It’s not a “lazy day, think I’ll take it easy” feeling. It’s not a “wish I didn’t have to do this” feeling. What it is: is a full-body exhaustion that makes you feel as if you have no bones, that if you didn’t have skin wrapped around your body, you would melt down into nothingness like the Wicked Witch of the West. Or that you are a melting candle, except a candle has a wick and there is nothing in your body that feels that solid. On the other hand, your bones can feel so heavy that lifting your arms to wash your hair in the shower is a chore akin to a weightlifter hefting a 200 pound barbell. His task is easier, though, because as soon as he puts the barbell down, he’s through. But after you’ve soaped your hair, you have to rinse it. That means those bone-weary, heavy arms must be raised again and after the shower, these “barbells” must be toted around all day long for they cannot be discarded like the weight-lifters toys.
Eating too, is an exhausting habit, especially restaurant dining. There must be something in the atmosphere and a three course meal that makes the lupus body say. “Hey hold on there, why are you lifting a fork so many times?” or “You broke off one piece of roll and now you want to exert that physical activity again for another piece?”
Am I exaggerating? Of course, but just enough to get a point across, a point that the fatigue that accompanies lupus is not like any other feeling. It is indescribable, but I know that as these words are read by my fellow lupoids, heads will bob up and down in instant recognition, though that frantic activity (head bobbing) will create yet another bout of exhaustion.
How do I handle this extreme exhaustion? If I’m home, I get into bed when it hits though the toxic feeling that accompanies the fatigue makes me think that once I do that, I will never be able to get up again. However, experience tells me I will come out of it and will feel better when I do. I never refer to this melting away as a nap; it’s my afternoon “coma” and my husband tells me it is almost impossible to wake me. If he must do so, it some times takes ten minutes of gentle shaking (and maybe one minute of bulldozing tactics).
If I’m not at home when it hits, and I push through it from sheer will, it will be with me for the rest of the day. Even if I give in to it later, even if I crawl into bed after it has been with me for hours, I will not shake it. Years of dealing with it has taught me why this is so: the fatigue that comes with lupus hits hard and wants to be pampered but it knows, better than I do, just how much coddling it needs. If I bow to it, I’ll revive. If I don’t, the fatigue shakes its finger in my face and says “Okay kid, you asked for it; now it’s the rest of the day for you”. And so for the rest of that day, I am that wicked witch, that melting candle, that weightlifter. I try to work around it. I tell my good friends they have to pick up for lunch out. If I drive to them in the morning, later, with fatigue as my passenger, I will have a foot that’s too weak to depress a brake and arms not strong enough to turn a wheel. Some people understand, some never will. Perhaps this will help the ordinary fatigued person see that there is nothing ordinary about lupus exhaustion. I’m glad I’m finished here, because my body is warning me that a bout is coming and I’d better be going. My bed looks inviting and my fatigue will thank me for “putting it there” by giving me a few good hours later on.
Reprinted from News & Views Number 45 – March 1995 Lupus UK.
European Lupus Erythematosus Federation
For a print friendly version click here THE TOXIC FATIGUE OF LUPUS
I got this list from the lfa webite. It is important to note that this is the tool doctors use to decide if lupus may be the answer. Please read and learn. Thanks! j
Common Symptoms of Lupus
To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.
- Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
- Discoid rash – a rash that appears as red, raised, disk-shaped patches
- Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
- Oral ulcers – sores appearing in the mouth
- Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
- Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
- Kidney disorder – persistent protein or cellular casts in the urine
- Neurological disorder – seizures or psychosis
- Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
- Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
- Abnormal antinuclear antibody (ANA)
People with lupus also may experience symptoms that do not appear among the ACR criteria:
- fever (over 100° F)
- extreme fatigue
- hair loss
- fingers turning white and/or blue when cold (Raynaud’s phenomenon)
This is from the Lupus Foundation of America’s web page. You can read more at www.lfa.org.
What is Lupus
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
- Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
- Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.
- Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
- Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
- Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
- It is believed that 5 million people throughout the world have a form of lupus.
- Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.
- Women of color are 2-3 times more likely to develop lupus.
- People of all races and ethnic groups can develop lupus.
- More than 16,000 new cases of lupus are reported annually across the country.
I am posting this link here because it concerns those of us with lupus. However, I would like to add that while this list is good advice for most people with lupus, some of these things may not impact all lupus patients. The disease is known for manifesting itself in a multitude of ways in each person. In other words, what harms one person may not harm another or cause a flare. So, please read this article from Johns Hopkins and discuss it with your doctor. Enjoy!
Things to Avoid
If you have lupus or a condition that predisposes you to lupus, such as undifferentiated connective tissue disease (UCTD), there are certain foods and medications that you should avoid. The substances listed below have shown to induce lupus signs and flares and should be avoided by people with lupus or autoimmune diseases suggesting “pre-lupus.”
People with lupus should avoid the sun, since sunlight can cause rashes and flares. Some people are more sensitive to sunlight than others, but all people with lupus are advised to be cautious when they are outside. Of course, it would be impractical to completely avoid going outdoors, but try to be prepared. Carry a sunscreen with an SPF of at least 70 and be sure that your sunscreen contains Helioplex, an ingredient that blocks UV-A and UV-B rays, both of which are harmful to people with lupus. Apply sunscreen to all areas of the body, even those covered by your clothes, since most normal clothing items only protect your skin to the level of SPF 5. In addition, carry a hat with you when you know you will be outside. Certain sportswear manufacturers now make hats with SPF built into the material, which may be helpful for people with greater photosensitivity.
(2) Bactrim and Septra (sulfamethoxazole and trimethoprim)
Bactrim and Septra are antibiotics that contain sulfamethoxazole and trimethoprim. They are grouped as “sulfa” antibiotics because they contain a substance called sulfonamide. Bactrim and Septra are often prescribed for bacterial infections, especially urinary tract infections. They are also sometimes given prophylactically (i.e., to prevent infection), especially in people taking immunosuppressive medications. However, it is very important that you avoid Bactrim and Septra, because these antibiotics are known to cause an increase in sun sensitivity and lower blood counts in people with lupus, resulting in lupus flares. Several medications can be used instead of Bactim or Septra for the prevention and treatment of infection; perhaps the most frequently used substitute is Dapsone (diaminodiphenyl sulfone) to prevent Pneumocystis pneumonia.
Scientists believe that three substancs in garlic—allicin, ajoene, and thiosulfinates—rev-up your immune system by enhancing the activity of white blood cells, particularly macrophages and lymphocytes. Scientists also believe that the sulfur components of garlic help to prevent and suppress cancer in the body. For this reason, garlic is often used as a supplement to combat colds and infections. Unfortunately, the enhancement of immune response is counterproductive in people with autoimmune disease such as lupus, because their immune system is already overactive. As a result, people with lupus and lupus-like signs should avoid cooking with garlic and adding it to food. Of course, a tiny amount of the herb will not harm you, but try to consciously avoid purchasing and preparing foods with garlic.
(4) Alfalfa Sprouts
Alfalfa sprouts contain an amino acid called L-canavanine that can increase inflammation in people with lupus by stimulating the immune system. As a result, people with lupus and similar autoimmune conditions should avoid alfalfa sprouts completely.
(5) Melatonin and Rozerem (ramelteon)
Melatonin is a hormone secreted by the pineal gland in your brain that regulates other hormones in the body that control how your body reacts to daily patterns of light and dark. Melatonin release is suppressed during the light hours of the day and stimulated by dark, helping you stick to patterns of nighttime sleep and daytime wakefulness. As a result, melatonin is often used as a sleep aid over other medications. Melatonin and melatonin-containing supplements should be avoided in people with lupus and other autoimmune disorders because they may stimulate the immune system. In addition, people with these conditions should also avoid the prescription sleep aid Rozerem (ramelteon), because it mimics melatonin in the body. It is important that you understand the necessity of avoiding both melatonin and Rozerem, since sleep aids are often used to help people with fibromylagia and other conditions to attain normal sleep patterns. In general, be sure that you speak with your physician before taking any new medications or supplements.
Echinacea is often used as a dietary supplement to boost the immune system against colds and other illnesses. However, because Echinacea boosts your immune system, it may cause flares in people with autoimmune diseases such as lupus. In fact, Echinacea supplements sold in Europe bear warning labels that advise against use by people with autoimmune diseases. As a result, people with lupus and other autoimmune diseases should avoid these supplements. In general, it is important that you speak with your physician before taking any new medications or supplements.
This is a repeat of this post. I thought it maight be worthy of reading again.
Lingo or Medspeak
As someone who comes from a medical professional background (nursing), I had to learn how to medspeak, or the language of medicine with its roots of latin and long unpronounceable words in nursing school. Since my diagnosis, I have found this knowledge to be an asset to understanding what is going on and the variances of the disease. I have also found that many others have been forced to learn the lingo or medspeak upon their diagnosis as well.
When you are diagnosed with a chronic, incurable disease, the first thing many do is look it up online. This can be good or bad. There may be a lot of information out there, some good and some bad, some not important, some important. Some of the information will scare you to death if you read it. For example, when I was first diagnosed with lupus, one of the first things I read was that the life expectancy was ten years. I should point out that I passed the ten year mark about 9 years ago. Unfortunately, that information is still out there and some may stumble upon it and freak out.
With medical diagnoses and prognosis changing every day, it is no surprise that many people are confused by what they find. I think I would recommend if you are researching your diagnosis, start with the national organization in your country. Most times, they have the most current, accurate information available. Once you have waded through the goldmine of information you find there, give it time to digest and process in your mind.
Another great source is to join a support group in your area. You can find out if there are any by once again checking your national organization’s website or calling your local hospitals and asking. Many times, your doctor may even know of any support groups as well.
One of the best ways to investigate the medical lingo is to take it word for word. When you happen on a word you do not understand, stop and look that one word up individually and then try to make sense of it as a whole. Put it in perspective with the sentence. If there is a sticking point, write it down and ask your doctor. Better safe than sorry.
On the whole, always remember that unless it is from an “official” website, it may not be as accurate as it could be. Caution is to be exercised above all and always consult your physician as well.
Since the beast of fibromyalgia has reared its ugly head in my body recently, I decided to review the basic facts of fibromyalgia (fm). I always feel that knowledge is more powerful than ignorance so in my quest for the information, I found this website which has a great description of the basic information of fm. I got this from the website www.prohealth.com. You can find more information there. Here is their article:
What is Fibromyalgia?
Fibromyalgia (FM) is a chronic pain disorder characterized by widespread pain, fatigue and sleep disturbances. It was originally thought to be a musculoskeletal disorder since most of the pain was felt in the muscles and other soft tissues. However, recent research and the advancement of brain-imaging technology is revealing that fibromyalgia is actually a disorder of the central nervous system, which causes abnormal pain processing and results in pain amplification.
The three primary symptoms that are common to almost everyone with fibromyalgia are pain, fatigue and sleep disorders.
Pain: Pain is usually the most prominent symptom of fibromyalgia. FM pain is chronic and widespread, affecting all four quadrants of the body, although not necessarily at the same time. Its intensity may range from mild to profound. FM pain tends to migrate, sometimes affecting one part of the body and sometimes another. Patients also report that their bodies ache all over, much like having the flu. In addition to the aching, FM pain has been described by different people as burning, throbbing, sharp, stabbing or shooting pain. Most people with FM also complain of feeling stiff and achy when they wake up.
Fatigue: While everyone knows what it feels like to be tired, the fatigue experienced by fibromyalgia patients is so much more. It’s a pervasive, all-encompassing exhaustion that can interfere with even the most basic and simple daily activities. Another feature of FM fatigue is that it is not relieved by rest.
Sleep Disorders: Most people with fibromyalgia have problems with sleep. They report having difficulty getting to sleep, waking up frequently throughout the night, and not feeling refreshed when they get up in the morning. Studies have shown that FM patients spend little to no time in deep, stage four sleep because their sleep is repeatedly interrupted by bursts of awake-like brain activity. Since deep sleep is the time during which the body replenishes itself, fibromyalgia patients are not able to get the restorative sleep their bodies need. In turn, this lack of deep sleep can result in making their pain and fatigue worse.
Other Symptoms: Most fibromyalgia patients also report a number of other symptoms and overlapping conditions, which may include allergies, irritable bowel, irritable bladder, headaches, migraines, dizziness, numbness and tingling, sensitivity to cold or heat, depression, restless legs syndrome, chemical or environmental sensitivities, impaired balance or coordination, dry eyes and mouth, vision problems, or problems with memory, concentration and cognitive functioning.
(For more information about specific symptoms, see “Common Symptoms“)
Who is at Risk for Developing Fibromyalgia?
Adult women appear to be at greater risk for developing fibromyalgia than men or children, however, it can affect all ages and both sexes. Historically, 75 to 90 percent of people diagnosed with FM have been women, but new information may eventually change those figures.
FM experts are finding that men often have fewer than the traditional 11 tender points required for diagnosis, yet meet all the other criteria for fibromyalgia. And what was once thought to be “growing pains” in children may turn out to be a previously unrecognized form of FM.
Although fibromyalgia will probably still occur most frequently in adult women, we may soon discover it affects significantly more men and children than once thought.
Another risk factor may be family history, as there is growing evidence of a genetic component in fibromyalgia. If someone in your family has FM, you may be at greater risk of developing it yourself.
How is Fibromyalgia Diagnosed?
Fibromyalgia (FM) should be diagnosed by a qualified physician who is familiar with the illness and has experience diagnosing and treating it. In 1990, the American College of Rheumatology established the research criteria for fibromyalgia, which are now the criteria most commonly used to diagnose it.
For a diagnosis of fibromyalgia, both of the following must be present:
- A history of widespread pain in all four quadrants of the body for a minimum duration of three months, and
- Pain in at least 11 of 18 designated tender points when four kilograms (about 10 pounds) of pressure are applied.
According to the American College of Rheumatology fibromyalgia is not a diagnosis of exclusion. However, there are several other illnesses that have similar symptoms, so it is important that the doctor test for certain comorbid conditions as well. Which particular tests may be necessary will depend upon the individual patient’s symptoms and medical history.
In the past few years scientists have made tremendous progress unraveling the mysteries of fibromyalgia. Although there is still some disagreement as to the cause of FM, there is little disagreement that its onset is usually triggered by some form of trauma. The trauma may be physical, in the form of an injury or illness, or it could be an emotional trauma that produces severe, prolonged stress.
Current research seems to indicate that some people have a genetic predisposition to fibromyalgia, although the symptoms usually do not show up until triggered by one of these traumas.
One popular theory as to the cause of fibromyalgia is that a trauma or significant stressor turns on an individual’s “fight-or-flight” response. This response, designed to help us function in an emergency situation, usually only lasts a short time, then turns itself off.
But when the stress becomes prolonged, the fight-or-flight response gets stuck in the “on” position and the person’s body remains in a state of high alert. Being in a constant state of high alert puts even more stress on the body. This results in, among other things, a loss of deep, restorative sleep, which in turn causes pain amplification throughout the body.
Regardless of what initially triggers the illness, research has shown that fibromyalgia patients have very real physical abnormalities, including:
- Decreased blood flow to specific areas of the brain, particularly the thalamus region, which may help explain the pain sensitivity and cognitive functioning problems fibromyalgia patients experience.
- High levels of “substance P,” a central nervous system neurotransmitter involved in pain processing.
- Low levels of nerve growth factor.
- Low levels of somatomedin C, a hormone that promotes bone and muscle growth.
- Low levels of several neurochemicals: serotonin, norepinephrine, dopamine and cortisol.
- Low levels of phosphocreatine and adenosine, muscle-cell chemicals.
Since the cause of fibromyalgia remains a mystery, most treatment is aimed at relieving symptoms and improving quality of life. Most patients find that a multi-disciplined approach using a combination of prescription medications, alternative/complementary therapies, gentle exercise and lifestyle adaptations seems to work best.
Unfortunately, finding which medications, therapies, etc. work best for a particular patient is generally a matter of trial and error. What helps one patient may not help another. It’s important that the patient, doctor and other healthcare professionals work together as a team to develop an individualized treatment plan.
(For more information about different treatment options, see”Treatment Modalities.” )
Choosing a Doctor
If you have a primary care physician with whom you’ve established a good rapport, discuss your concerns regarding fibromyalgia. Chances are she has other patients with the same illness, but if not, provide her with information you’ve found helpful. She may or may not remain the gatekeeper in your care, but she should be able to help you find a physician who is familiar with fibromyalgia and able to help you.
In the past, rheumatologists were the specialists who diagnosed and treated fibromyalgia. However, since research is indicating that FM is most likely a central nervous system problem, some rheumatologists are no longer taking FM patients. Check with the rheumatologists in your area to see if they will treat fibromyalgia. Logically, if FM is a central nervous system issue, neurologists would be the specialists that should treat it. Unfortunately, most neurologists are reluctant to add fibromyalgia to their practices. A few, however, have jumped on board. Again, check with the neurologists in your area to see if they will treat FM.
If your doctor is not knowledgeable about FM and is not able to recommend someone, your best resource for finding a doctor who is knowledgeable about fibromyalgia in your area is probably a local support group. (Check ProHealth’s Support Group Listing to find a group near you. ) FM message boards are also a good place to ask if anyone knows of a good doctor in your area. (Visit ProHealth’s FM message board.)
Talking with family and friends may shed some light on your search as well. Hearing of a physician with compassion, one who spends time with patients and listens, goes far when making a decision. Overall, you want to find a physician who is committed to learning as much as she can about the condition so she can provide you with the best possible care.
Do a little research on the doctors you are considering. First, check with your insurance carrier to find out which health care providers are covered by your plan. If there aren’t any suitable doctors in your plan, inquire about out-of-network coverage and charges. Next, check out the doctor’s medical credentials and whether there have been any malpractice suits or disciplinary actions against her. Below are just a few resources to help you begin your research:
- American Medical Association’s Doctor Finder includes physician profiling information such as medical school, training and specialty.
- The American Board of Medical Specialties will tell you if your doctor is board certified and in what specialties. “Board certified” means the doctor has completed two additional years of training and passed a national examination. “Board eligible” means the training, but not the test, has been completed.
- Contact your state’s Board of Medical Examiners to find out about any history of malpractice suits.
- Find out how other patients feel about a doctor you are considering. There are several Web sites, like RateMDs.com where patients rate their doctors. This particular site covers doctors and dentists in the US, Canada, the UK, Australia, New Zealand and India.
As with any chronic illness, navigating your way within the medical world will require you to be your own advocate. This means being proactive about your care, staying informed, and being organized about your needs during each appointment. This is not an easy road, and balancing the medical, insurance and care aspects of your health is going to require clarity and work on your part.
Seldom is fibromyalgia a solitary illness. Most FM patients have one or more comorbid (related) conditions. Which came first is one of those chicken and egg questions.
Why do people with FM usually have so many other disorders? The answer to that may be found in a new paradigm proposed several years ago by Dr. Muhammad Yunus. He suggests that many of these related illnesses could be classified as Central Sensitivity Syndromes. Basically, this means that the central nervous system becomes hypersensitive, which stresses the rest of the body and can eventually lead to any number of different disorders. (See “Are Fibromyalgia and Other Chronic Conditions Associated?” for more information on Central Sensitivity Syndrome.)
Some of the related conditions that fibromyalgia patients may have include:
- Migraine disease
- Restless legs syndrome
- ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)
- Irritable bowel syndrome
- Multiple sclerosis
- Temporomandibular joint disorder (TMJ)
- Chiari malformation
- Intermittent cervical cord compression
- Cervical stenosis
- Polymyalgia rheumatica
- Sleep apnea
- Raynaud’s syndrome
- Sjogren’s disease
- Myofascial pain syndrome
- Multiple chemical sensitivity
- Rheumatoid arthritis
- Interstitial Cystitis
- Gulf War Syndrome
I must say that I have done this subject in a previous post but I found new information on a different website and thought I would share it here. It makes for interesting reading. The article cites Daniel Wallace, MD, who is one of the most widely read doctors when it comes to lupus. I hope you learn more by reading this article. It comes from www.hopkinslupus.org.
Signs, Symptoms, and Co-occuring Conditions
Lupus affects everyone differently, but certain signs and symptoms are common. [A sign is medical evidence your doctor finds during a physical exam, such as a specific rash; a symptom is a subjective indication of disease, such as joint stiffness or a headache.] In addition, other conditions, such as fibromyalgia, occur commonly in people with lupus but are not directly due to disease activity. These co-occuring conditions are known to doctors as “comorbidities.” Several signs, symptoms, and comorbidites of lupus are detailed below.
The average human body temperature is around 98.5°F, but many people run just above or below that mark. A temperature of 101°F is generally accepted as a fever. Many people with lupus experience reoccurring, low-grade temperatures that do not reach 101°. Such low-grade temperatures may signal oncoming illness or an approaching lupus flare. Fever can also signal inflammation or infection, so it is important to be aware of the patterns of your body and notify your physician of anything unusual.
Many lupus patients experience joint stiffness, especially in the morning. People often find that taking warm showers helps to relieve this problem. If this habit does not offer comfort and joint stiffness prevents you from daily activity, be sure to speak with your doctor. He/she will examine you for any signs of joint swelling and can speak with you about medications that may ease some of this pain and inflammation, such as over-the-counter pain treatments and NSAIDs. Tenderness of a joint in known as arthralgia, and it is important that your doctor distinguish this from the arthritis (true swelling) that may accompany lupus.
If you experience a fever lasting a few days or fevers that come and go over the course of a few days, you should take your temperature twice daily and keep a record. Certain trends may alert your doctor to specific processes occurring in your body. In addition, a fever of 101°F or more should be given medical attention. If you are taking steroid medications such as prednisone, be alert for any sign of infection, since steroids can suppress your immune system while also masking symptoms of infection. Immunosuppressive medications such as azathioprine, methotrexate, cyclophosphamide, and mycophenolate also suppress the immune system, so if you begin to feel ill when taking one of these medications, notify your doctor immediately.
Increased lupus activity can sometimes cause weight loss, and certain medications can cause loss of appetite. No matter what the cause of your weight loss, you should speak to your doctor to ensure that the loss does not indicate a more serious condition. If you experience a loss of appetite due to your medications, your doctor may suggest alternative medications or solutions to ease stomach discomfort.
Other medications, such as corticosteroids, can cause weight gain. Therefore, it is very important that you speak to your doctor about maintaining a balanced diet while taking these medications. You may need to reduce your calorie consumption; your physician can refer you to a nutrition counselor if needed. Light to moderate exercise can also help you to maintain a healthy weight and cardiovascular system, while also boosting your mood.
Please remember that it is very easy to gain weight, especially when taking steroids, but it is much more difficult to lose it. It is very important that you try to achieve a healthy weight, because women with lupus between the ages of 35 and 44 are fifty times more likely to experience a heart attack than the average woman. In addition, maintaining a healthy weight helps to alleviate stress on your joints and keeps your organs working productively and efficiently.
Fatigue and Malaise
Ninety percent of people with lupus will experience general fatigue and malaise at some point during the course of the disease. Some people find a short 1 ½ hour afternoon nap to be effective in reducing fatigue. However, exceeding this time frame might lead to problems sleeping at night. If you feel that you are tired throughout most of the day and that fatigue prevents you from engaging in daily activities, speak to your doctor. Fatigue accompanied by pain at certain parts of your body may be a sign of a treatable condition called fibromyalgia. Other fatigue-inducing conditions, such as anemia, low thyroid, and depression, can also be treated. If you and your doctor decide that your malaise is due solely to lupus, try to stay as active and mobile as possible during your daily routine. Often this can be difficult, but many people find that slightly pushing themselves to engage in light to moderate exercise actually increases their energy levels. However, you should never push yourself beyond reasonable discomfort.
As many as 10% of people with lupus may experience a condition called Sjogren’s syndrome, a chronic autoimmune disorder in which the glands that produce tears and saliva do not function correctly. Sjogren’s can also affect people who do not have lupus. People with Sjogren’s often experience dryness of the eyes, mouth, and vagina. They may also feel a gritty or sandy sensation in their eyes, especially in the morning. This dryness occurs because the immune system has begun to attack the moisture-producing glands of the eyes and mouth (the lacrimal and parotid glands, respectively), resulting in decreased tears and saliva.
It is important that you speak to your doctor if you experience dryness of the eyes and mouth, since the medications for these conditions must be taken on a regular basis to prevent discomfort and permanent scarring (especially of the tear glands). The Schirmer’s test is usually performed to check for Sjogren’s and involves placing a small piece of litmus paper under the eyelid. Eye symptoms can be relieved by frequent use of Artificial Tears, and an eyedrop medication called Restasis is often used to prevent worsening of Sjogren’s. Evoxac (or pilocarpine) can be used to increase both tear and saliva production, and certain lozenges (Numoisyn) can also be helpful for dry mouth.
Depression and anxiety are present in almost one third of all people with lupus. Clinical depression is different than the passing pangs of sadness that can haunt all of us from time to time. Rather, clinical depression is a prolonged, unpleasant, and disabling condition. The hallmark characteristics of depression are feelings of helplessness, hopelessness, general sadness, and a loss of interest in daily activities. Depression also often involves crying spells, changes in appetite, nonrestful sleep, loss of self-esteem, inability to concentrate, decreased interest in the outside world, memory problems, and indecision. In addition, people who are depressed may suffer from certain physiologic signs, such as headache, palpitations, loss of sexual drive, indigestion, and cramping. Patients are considered to be clinically depressed when they experience symptoms that last for several weeks and are enough to disrupt their daily lives. Patients suffering from depression also often experience a general slowing and clouding of mental functions, such as memory, concentration, and problem-solving abilities. This phenomenon is sometimes described as a “fog.” The cause of depression is not known; sometimes a genetic component predisposes an individual to the condition. Depression is almost never due to active lupus in the brain.
While clinical depression can be caused by the emotional drain of coping with a chronic medical condition and the sacrifices and adjustments that are required of the disease, it can also be induced by steroid medications (e.g., prednisone) and other physiological factors. It is important that you speak with your doctor if you feel you are experiencing clinical depression, because many people who are physically ill respond well to anti-depressant medications. In addition, your doctor may treat your depression in different ways depending on the cause.
Many people with lupus suffer from gastrointestinal problems, especially heartburn caused by gastroesophageal reflux disease (GERD). Peptic ulcers can also occur, often due to certain medications used in lupus treatment, including NSAIDs and steroids. Occasional heartburn or acid indigestion can be treated with an over-the-counter antacid, such as Rolaids, Maalox, Mylanta, or Tums. Your doctor may also include an antacid or another form of GI medication (a proton-pump inhibitor, histamine2 blocker, or promotility agent) in your treatment regimen. Antacids are effective when used to treat occasional symptoms, but you should try to avoid heartburn and acid indigestion altogether by eating smaller meals, remaining upright after eating, and cutting down on caffeine. If heartburn and acid reflux persist (e.g., for more than two weeks), you should speak with your doctor, because your heartburn symptoms could indicate a larger problem.
The thyroid is the gland in your neck associated with your metabolism—the processes by which your body makes use of energy. Autoimmune thyroid disease is common in lupus. It is believed that about 6% of people with lupus have hypothyroidism (underactive thyroid) and about 1% have hyperthyroidism (overactive thyroid). A thyroid gland that is functioning improperly can affect the function of organs such as the brain, heart, kidneys, liver, and skin. Hypothyroidism can cause weight gain, fatigue, depression, moodiness, and dry hair and skin. Hyperthyroidism can cause weight loss, heart palpitations, tremors, heat intolerance, and eventually lead to osteoporosis. Treatment for both underactive and overactive thyroid involves getting your body’s metabolism back to the normal rate. Hypothyroidism is usually treated with thyroid hormone replacement therapy. Hyperthyroidism is treated with anti-thyroid medications or radioactive iodine.
Osteoporosis (bone thinning) occurs when the bones lose calcium and other minerals that help keep them strong and compact. This condition can lead to fractures, bone pain, and shorter stature. Everyone is at risk for osteoporosis as they age, but women experience a greater risk of the condition after menopause. Studies have shown that people with lupus are at an increased risk for osteoporosis due to both the inflammation they experience with the disease and the use of prednisone.
Your bones are constantly being remodeled in a process that removes old bone cells and deposits new ones. In people with osteoporosis, the bones lose minerals faster than they can be regenerated. Medications called bisphosphonates (e.g., Actonel, Fosamax, Boniva, and Reclast) can be taken to help prevent your bones from losing calcium and other minerals by slowing or stopping the natural processes that dissolve bone tissue. In doing this, bisphosphonates help your bones remain strong and intact. If you have already developed osteoporosis, these medications may slow the thinning of your bones and help prevent bone fractures. In fact, studies have shown that bisphosphonates can lower your risk of fractured vertebrae—bone segments that make up your spine—by 50%. Similar studies demonstrate that these medications can lower the chance of breaking other bones by 30-49%. However, when bisphosphonates are not successful, patients may need a daily injection of parathyroid hormone (Forteo) to build bone.
- Wallace, Daniel J. The Lupus Book: A Guide for Patients and Their Families. 1st ed. New York: Oxford University Press, 1995.
Ok, the down time from the title of this post that probably sprang to your mind is a vacation, holiday or something along that line. How great would that be? To take a break and have some fun!
Sad to day, this down time I am talking about is not that type. When you have an autoimmune disease like lupus, one of the most frustrating symptoms is the “toxic” fatigue you can suffer at the drop of a hat. I know, fatigue is not bad, it just means you have worked hard and deserve to rest, right?
Wrong. The type of fatigue I am discussing is the all consuming, total shut down of your body where you have no control of when and how long you will be down. That is the fatigue I have had for the last five days.
It started innocently enough, just sleeping in one day. Or so I thought. It soon manifested itself into high gear and as of today, I have only been awake a total of about 20 hours in five days! No kidding! I mean, I sit in my chair for a few minutes and next thing I know, hubs is waking me up after several hours of me sleeping. I mean, I wonder when it happened and how. It is like a light switch has been flipped. I am “on” and suddenly I am “off”. It is utterly strange and scary when you have this happen.
I did call my rheumy and he said he thinks it may be both fibromyalgia and/or lupus acting up. He is hesitant to prescribe prednisone in case it is the fibromyalgia. He wants to see me on friday. Great… now another of my autoimmunes is acting up too? So in the meantime, I am taking ultram for the pain and waiting for friday. Some days I think I have forgotten how to feel “normal”.
So, as I sit here, or should I say “sleep” here, I hope things will work out and I can feel better soon. Have any of you had this toxic fatigue?
There are a lot of people out there who may wonder why I do the things I do in promoting lupus awareness. The answer is as complex at times as the disease is. In answer to those that really want to know, I will try to explain it.
I have lupus. I live with it daily. It hurts. It is unpredictable. It impacts my life every day in some way. Now, to why I seem to obsess over it, as some would think, is simple. I feel better about myself and validated by studying it and sharing with others. It gives me a sense of accomplishment and allows me to vent my anger over the things I cannot control. It helps me, plain and simple.
Another reason why I give time to this cause is because it helps me feel like a viable member of society, because it is something I know about, and can help others with. I have already had to stop working because of it but it has not stopped me from wanting to have that sense of pride in doing a good job. Self esteem it is called and I could use some since not working anymore. To feel that, I promote lupus and help others understand about it. I ask organizations for grants and donations. I call businesses and discuss participating in the walk. It helps me to feel some control over lupus and to feel that I am doing something even if I am laying in bed and in my pj’s.
You see, I was always a go-getter, the first one at work and one of the last to leave. I enjoy working. I cannot hold a “real” job anymore because of the progression of this disease and the unpredictability of it all. I mean, who would want an employee who cannot say which days they can work and for how long?
In a perfect world, I could do a job from my bed if necessary. This world, unfortunately, is not perfect, yet anyway, and so I muddle on trying to keep my brain from rotting and pushing myself to do things that bring me satisfaction.
I have decided to work, as it were, at being an advocate for lupus. If that makes me a bad person, so be it. If people think I amd welling on it too much, so sorry. I live with it every day. They don’t. If what I do is causing them to think less of me, then they do not have to read. Plain and simple, I need to feel like I am doing something about this unpredictable disease and this is how I cope. Deal with it, or not, the choice is yours.
Sorry if this sounds harsh but I have been dealing with this for a long time now and it has been bothering me. I live my life as best I can with each day and how it presents itself to me. I will not be ashamed of my feelings or my experience. Thanks for allowing me to vent.
This is one of my good friends, Angie and her story of her fight with the wolf, or lupus. Please read and learn more about lupus and the things it does to those who have it. Thanks Angie for sharing your story with us! This is her story, in her own words…
Angie’s Story of Lupus
I was diagnosed with Lupus in 1980 at the age of 8. What started as a rash on my face, which my mom thought was poison ivy, would change my life forever. I had no idea at that point what lupus was or what it could do to my body but through the years I would find out just what an ugly beast it would be…
My first flare happened at the age of 16. I developed sever swelling all over my body. At first the GP my parents took me to said that my pants were too tight (after all that was the style cause it was the 80′s). So the next time I went in I wore a dress and said “Are my pants too tight now??” I know I am a smarty pants, but I wanted the doctor to take me seriously and make the swelling go away. At that point I was placed on maxide and sent to a rheumatologist.
Let the testing begin….he checked me over and decided that I had RA. He took my blood and ran more tests and also decided that I had Mixed Connective Tissue disease. Prednisone would be my next drug that I would be placed on at that point. Prednisone made it hard to sleep and the maxide made me pee a lot. But nothing was taking the swelling away. Next I was off to a Kidney specialist. More tests…I had to give a 24 hour urine sample and more blood. He decided that there was nothing wrong with my kidneys at that point. I was then sent back to the rheumatologist and he placed me on plaquinel. The swelling went down eventually, but we never knew what had actually caused it.
Years past, I married and had two boys even though I was told I wasn’t able to have children. By the time I was 25 the swelling had returned. I went to a new GP (my other GP had passed away at this point). After testing me my GP told me that the symptoms I was having were all in my head. She gave me anti-depressants and sent me home.
AS always the beeper went off, I called and was ready to go. But I waited. You could say I took my time getting things in order this time for fear of the let down. During the wait I called a local company of pilots that donate their time and planes to bring patients to other states. From the airport I took a cab to the hospital. I was in my gown, I had my blood work done and AGAIN the donor liver wasn’t a good one. I had to sit in the hospital and wait on someone to come get me and drive me home.
Or maybe I could say the third time was a charm?? Anyway, after waiting on the list for 3 years I got the call I had been waiting for. It was around midnight on February 17, 2001. My beeper went off and I thought to myself “I am tired..I don’t want to call back and get my hopes up…” I then hesitated. My mind was racing…what to do?? Should I call them? Should I even bother? Then I came to my senses and gave myself a mental slap in the face..what was I thinking?? This could be IT!! I woke my husband and called. I then realized that I didn’t have a ride. My car had broke down. So I called the first person that came to mind. My good friend Ed. He made a beeline to my house and drove me to Nebraska in record time. Pretty sure if he had gotten pulled over he would of had a whopper of a ticket!! Laying in the backseat of his car on the way there I was praying..please God let this be it…
This was IT alright. I was prepped, taken to surgery and 14 hours later it was over. At least the surgical part was. I was told that I was within days of death and that my liver weighed over 12 pounds!! No wonder I looked pregnant!
After he left my nurse decided to get me up and see if I was strong enough to walk. I guess they need to do this within 3 days of surgery due to the risk of blood clots. Anyway, the last thing I remember her saying was “Angela!! Are you ok??” Everything went black.
Today I want to share something with you all, something that means a lot to me. For quite some time now I have been posting on this blog and hoping to educate others about lupus and other autoimmune diseases. That is the reason for this blog, along with giving me an outlet to express my struggles with this disease and also my triumphs.
The reason I have the title above, is that I want to ask a question, “Have you heard about lupus?” Most will think, “yeah, I have” but can you tell me some points you may have learned from this blog? This is not a test, but look over the questions below and see how much you have learned from reading this blog. If you are unsure of an answer, the answers appear at the bottom of the post.
Thanks to everyone who reads this blog (and there are many of you out there). I hope I can make this blog more informative as I go along. Now, on to the questions…
Have you learned how long it takes to get a diagnosis of lupus (on average)?
Do you know what the life expectancy is for lupus patients?
Can you name the three types of lupus?
Do you know what part of the body lupus affects?
Is there a specific blood test for lupus?
Do you know the different drugs that can be used to treat lupus?
10 years average for a diagnosis; life expectancy is the same as normal people on average, although some will not have this result; systemic, discoid and drug induced are the three types of lupus; lupus can affect almost any part of the body; no, there is no one test that can tell you if you have lupus, but an overview of symptomology and tests can prove the diagnosis; there are many and range from over the counter nsaids to steroids and chemotherapy agents.
I asked some friends of mine, fellow autoimmune patients, to tell their stories so I could post them. My thought is that our stories are all different, yet similar as well. It can help others to know there are many of us out here, living our lives and helping others.
I will be posting these stories, with each persons permission, to this blog to help others see that this is something that is needing awareness. So many people suffer from these diseases and yet a lot still do not even know what these diseases are!
I hope you will enjoy reading Kathy’s story. She wrote this story for the Lupus Magazine but it is reprinted here by permission of Kathy herself. Enjoy and learn more about it. Be sure to check out Kathy’s website as well. I know I learned a lot by doing so.
Meet someone with lupus -
Kathy Patterson, Founder of the Lupus MCTD Foundation (Lupus Mixed Connective Tissue Disorder Foundation) First Published in The Lupus Magazine
April 1976… I was a teenager growing up in Modesto, CA. My heath had been fine except in the fall & winter when I would come down with pneumonia, which my parents always blamed me for – I would wash my hair and walk to school with it wet!
One day in April, I came home from school, anxious to to play tennis with my friend at the time, Steve. As I walked inside my parent’s home to change out of my school clothes and into shorts, I started walking in circles, looking at the ground… It appeared to be lifting and changing *patterns* like I was falling in slow motion. I recall the sound of my name being called out by my sister Debby, “Kathy! Kathy!” I then fell to the ground and it felt like electricity jolting through my body. It felt like a large knife in my back, the feeling of falling off a mountain and this was a Grand Mal seizure I was having.
The ambulance whisked me away to Memorial Hospital where I would begin my life as I know it now – hospitals, doctors, tests and the whole gambit of not knowing what caused this seizure. “Unknown origin” is what my Medic Alert bracelet said. I had to wear that for years!
Dr Smith the Neurologist, who I’ve been a patient of since 1975, is still my Nuero to this day. The last scan I had of my head shows scarring on the right side of my brain. That was about four years ago. It could be scar tissue from being hit over the head accidentally in high school while practicing golf swings with a 9 iron. All other scans through the years showed nothing. If I have any different or increased symptoms I am to return , repeat the scan and check for advancing of this scarring.
I was put on Phenobarbital and Dilatin which would make me so sleepy along with the fatigue I was already experiencing in school, I would cut class and hang out at Downey Park and sleep in the sun. It felt so warm, so comfy to just sleep!
It was at this time I met my future husband and he would hang out with me. I never told him I had seizures and we married right after I turned 18. Four months into our marriage I had a seizure, a repeat of the first one. I was walking inside my Mom’s front door and down I went. As always, I would clench my jaws , and sleep for 4-5 hours after the seizure. I’d have a headache from hell afterwards and the top of my head would hurt and my jaws would just ache. It was during that seizure, my new husband found out about the seizures – something I was terribly embarrassed by.
I had many seizures during my pregnancy with my first born, my daughter. But the seizures tapered off then female related health problems started after I gave birth. The typical PMS, heavy periods, migraines from hell that caused many trips to the ER for shots of pain meds, relaxers, anti nausea medication, etc…. According to all the doctors, these symptoms were all related to my menstrual cycle. But living EVERY MONTH in hell??? My bones would hurt so bad in the pelvis area, I’d literally put rice socks *down there* to help my bone pain. The pain went to my knees, it was unreal!
At the time my husband didn’t want me working but I promised him I’d work four hours a day and I’d still be able to clean our home, cook dinner and pick the kids up from school. So I started cleaning houses for other people.
(Many Lupus MCTD – Lupus Mixed Connective Tissue Disorders – patients have been house cleaners. And according to the Mayo Clinic website, there is a study showing exposure to cleaning products enhances the symptoms of MCTD. I still was not diagnosed yet. See: Lupus Risk Factors )
I continued cleaning homes and wearing every wrist guard you could imagine after being told I had inflammation and was prescribed anti inflammatory meds. I was in my 20′s when my oldest sister Sheryl came down with a muscle wasting disorder called Polymyositis. She passed away within a few months of being diagnosed. That was the beginning of my quest to find out why she died – what was wrong with her? Why was she sick?
Little did we know, but our other sister Debby had a blood disorder called Aplastic Anaemia. She often seemed to have either platelets or IV infusions. Then she had a wound that would not heal and she would have to stay inside a special room at the hospital where she was fed extra O2 to help heal the wounds.
We each told our doctors about what the other sister had or had been diagnosed with.
During my 30′s, I’d seen every Orthopaedic doctor there was for pain in my arms, knees, ankles and fingers – only to be told, “It’s inflammation… take an anti inflammatory pill and wear your wrist guards.” But then my right hip pain & weakness started. Again nothing was wrong. I mean, I’ve even been to foot doctors because others just passed me back & forth! From my neck, I have bi-lateral herniated disks and spondylolisthesis in S-1 L5 of the lower spine. Also in my spine, I have a Spina Bifida Occulta (meaning a hole on my spine did not close up when I was born and is known to cause pain and leg weakness). Again no biggie, millions of people have that. The pain and weakness would stop if I quit walking.
I was finally sent to a Rheumatologist and and Endocrinologist. I had a positive ANA and along with my symptoms (inflammation, joint pain, hair loss, fevers, etc) I was diagnosed with Lupus, but another doctor said it was more MCTD. It was then that they noticed I had no pulse in my right ankle. I was eager to learn more… now I had a name for my health problems. But why was I sick too? And with different symptoms?
On the internet there was the AOL medical boards. I wanted to ask questions, but I was extremely shy. I read the boards for two years before I ever posted my first question. I was terrified to type a public message, but reading what all those people had been through was like reading my life story. I got to ask the one question that had been bothering me… “Back in the 1970′s I smoked pot, could that make me sick today?” Immediately, I had ladies emailing me saying they were wanting to know too – that if back in the days, when we were young and we partied , could it have affected us? I mean, could it have been all that THC?
Thus, I began forming friendships with some of the most wonderful people that were so much like me! I felt like I was *one of them* – we were normal Moms and Grandmoms that were sick most our life. Some days I’d just lay on the sofa, no energy to get dressed and the pain was unbearable at times. But when I had good days, I’d be sitting at my computer, reading and absorbing all the information I could on autoimmunity.
After a while the AOL boards were taking a turn south and I saw a better need for group discussions, so five years ago I created: http://www.LupusMCTD.com It was a forum accepting questions 24 hours a day and there was always someone online – after all we don’t sleep well! I created the first live Audio/Video chats to make us more real and to see each patient we were talking to.
I took it a step further and created a radio station giving interviews and promoting Lupus MCTD awareness. Now that Facebook and The Lupus Magazine has taken off, and so many are *hanging out there* I no longer spend all day researching and posting current medical news – something I worked hard at and was proud of.
Now the word is out on Lupus and MCTD, I’m not the lone person in search of support and understanding. We are all in this together ’till there is a cure.
As for my current health, my newest major health crisis is Arteriosclerosis. My Fathers Mother and her Mother both died from complications related to it (It helps to gather family members’ death certificates to tell your medical history to your doctor). But there is a new study out on Lupus and advancing of Arteriosclerosis also known as hardening of the arteries. Last month I had a test to locate my blockages and surgery will be scheduled. I will undergo a total reroute surgery to improve blood flow and to save my toes which remain dark plum/black in color.
I am seeking other LupusMCTD patients to communicate with who are also going through this. As long as I am able to, I am available to offer help, hold meetings and offer emotional support – I understand what you are going through!
* Kathy 51, is currently single and is the Mother to Jennifer 32 and Mikie 31, Grandmother to Alex 6 and Emily 4. She is a native from Anderson, Indiana, now residing in Riverbank, CA.
Lupus MCTD Foundation
Check out the Lupus MCTD Flight of Hope Bracelet Project – Raising funds for the ALR – where all funds go directly to lupus research.
I have found a way to feel better, or at least a little better than normal these days. My normal for the past few months has been a flare with no end in sight. Painful and depressing. For the last few days though, I decided to try a new trick against the wolf. What is it?
Each and every day for the last few days I have made myself lay down for an hour or so and take a nap. Yup, a nap. Guess what happened? Well, I have always felt at my best right after waking, before the pain gets going full tilt. By taking a midday nap, it makes my body feel as it does in the mornings, and I get decently lower pain. Will this keep up? I do not know. For now though, I will take the naps and see if wolfie will lay off of me for a bit.
I wanted to share this because it might help someone else out there too. I figure, like most of us with lupus, that it is worth a shot to try it. Believe me, we try all kinds of things in an attempt to get this disease under control. This is an easy one to try though. Happy napping!
Once again, I found a great article that discusses depression in lupus patients. This information is from the website:
Lupus Disease Activity May Cause, Worsen Depression
- Joan Arehart-Trechel
Both negative life events and lupus disease activity may be capable of contributing to major depression in individuals with lupus.
Fabiano Nery, M.D., a Brazilian psychiatrist who also completed a residency in internal medicine, has long been fascinated by the interface between psychiatric and medical illnesses—and especially by the interface between depression and the autoimmune disease systemic lupus erythematosus.
In 2004, while affiliated with the University of Sao Paulo Medical School, he designed a study to get more insight into possible causes of depression in lupus patients—say, stressful life events or damage to the brain inflicted by lupus. He was particularly interested in the latter possibility since lupus, unlike the autoimmune disease rheumatoid arthritis, is known to be capable of damaging the brain. The brain involvement can be either widespread or focal and may involve inflammation of small blood vessels or interaction of autoantibodies with antigens on neuronal cell membranes.
Seventy-one subjects with lupus were evaluated for the presence of major depressive disorder, the intensity of depression, life events during the previous six months that had had a negative and pronounced impact on their lives, and lupus disease activity. Other health information about the subjects, such as medication use, was also collected.
Sixteen of the 71 subjects (23 percent) met DSM-IV diagnostic criteria for a current major depressive disorder. This finding did not surprise the investigators since other studies have found high rates of major depression in lupus subjects.
Prednisone, a medication used to treat lupus and known sometimes to produce depression, did not seem to explain this high rate of depression because the amount of prednisone used by subjects with and without depression was essentially the same. Yet nine of the 16 subjects with major depression reported having experienced at least one major negative life event during the previous six months, compared with 13 of the 55 subjects without a major depression—a statistically significant difference. This finding suggested that potent negative events might have precipitated the depression. Also, the severity of subjects’ depression was associated with having experienced negative life events, which likewise strengthened the argument that negative events could trigger such depression.
Subjects with major depression, however, had more severe lupus disease activity than did those without a major depression, with a trend toward statistical significance. This finding implied that lupus disease activity might have triggered the depression, and another result bolstered this possibility: Even when stressful life events were taken into consideration, there was still a highly significant link between depression severity and disease activity.
Thus, it looks as if both negative life events and lupus disease activity may lead to major depression in lupus patients, Nery and his group concluded in their study, which is in press with Comprehensive Psychiatry.
Nonetheless, as Nery told Psychiatric News, “if a lupus flare-up can truly trigger depression, then there is still the question of whether the depression is due to brain damage by the disease or whether the patient becomes depressed in reaction to the disease. I would say that both can occur, probably at the same time in the same patient.
“My plan,” he continued, “is to use neuroimaging tools to determine whether specific brain areas associated with mood regulation are damaged during a lupus flare, and try to use these tools to disentangle factors such as psychosocial stress and biological and psychological factors in the development of mood disorders.”
When asked whether these findings have any practical implications for clinical psychiatrists, he replied, “Yes, absolutely. When evaluating depressed patients with systemic lupus erythematosus, consider that the disease activity is an important risk factor for the worsening of the depression.”
The study was funded by Fundacao de Amparo a Pesquisa do Estado de Sao Paulo and Conselho de Desenvolvimento Tecnologico e Cientifico.
An abstract of “Major Depressive Disorder and Disease Activity in Systemic Lupus Erythematosus” can be accessed atwww.sciencedirect.com> by clicking on “Browse A-Z of journals,” then “C,” then “Comprehensive Psychiatry.” ▪
I received this update on benlysta in my email from the lupus foundation of america. Important to read for all of us lupies!
Food and Drug Administration to Hold Hearing on BENLYSTA®
On November 16, 2010, the Food and Drug Administration (FDA) will hold a hearing to discuss the application to approve BENLYSTA® (belimumab) as a treatment to reduce disease activity in adults with active, autoantibody-positive lupus.
If approved, BENLYSTA® will be the first drug to be specifically developed for lupus and the first new treatment for lupus in more than 50 years.
While BENLYSTA® may not be appropriate for all people with lupus, having a new approved treatment for lupus would be a significant step forward and would provide a pathway for future approval of the arsenal of therapies required to manage a disease as diverse and complex as lupus.
Make your voice heard! It is important for the FDA Committee to have a clear understanding of the diversity of the disease and how it impacts people with lupus and their families. You can help by sharing your story about why new treatments are needed and the hope for new treatments in the future.
Email your short statement to Yvette Waples at the FDA, Yvette.firstname.lastname@example.org by November 1, 2010.
I got my first issue of the “Lupus Now” magazine today in the mail and read it cover to cover. It was a great read all the way through! I found an interesting tidbit that I can relate to most days. It says in the magazine that lupies are more prone to being unsteady on their feet and are rather clutzy because of this instability. Wow! They know me!
Not long after reading this magazine, I found myself at a park with six of my grands. My daughter, who is an accomplished photographer (family only for now) was taking pics of them in various places and poses, individually and together. She yelled at me to come over to this tree she was working near with all six of the kids when I found myself literally tripping over nothing and falling hard to the ground.
Needless to say, I am bruised tonight. It could have been worse, much worse. You see I have osteoporosis in my spine from the years of long term high dose steroid use in combatting the lupus. It brought home to me that I really do have to be more careful because in a blink, I could sustain a serious injury and be totally out of commission for a long time.
Ok, it can happen to anyone. However, it is ironic to me that not long after reading that article, it happened to me. Go figure.
On the positive side, the pictures turned out great! Who needs Olan Mills when I have a capable daughter with an artistic flair and she takes much better pictures than most. If you have my fb page, you will see some of her work.
I found this article on thelupusmagazine.com. It addresses the brain fog many lupus patients have had or have and helps others to understand the problem. I found this a good read and wanted to share it for you as well.
Understanding the Unseen Realm of Lupus Brain Fog
by Kim Nault ©
An estimated 70-90 % of SLE patients will experience the infamous lupus brain fog. This is the most common form of central nervous system involvement in SLE and can be mild to severe, and vary from person to person. The lupus brain fog is classified as a manifestation of organic brain disease and is of one of the 19 manifestations of NP-SLE/neuropsychiatric SLE that has a broad spectrum of manifestations, including psychiatric disorders and neurological syndromes of the central, peripheral, and autonomic nervous systems. Each manifestation is vast and complicating and far outside the scope of this sole article.
Sadly, the actual field of NP-SLE is still in its infancy, there is not much research done on this vast topic and not too many doctors fully understand this form of organ involvement. Many assume that the brain fog of lupus is just some quirky annoying problem, that it is not that bad, not that serious of a problem. For more than half the patients with brain fog it will be a quirky, sometimes an annoying and even at other times a comical issue, but for others it will be very disabling. In addition, lupus brain fog notably fluctuates with and without disease activity.
I have heard many heart-wrenching stories, of patients whose very own doctors have ignored or even minimized their conditions and complaints as mere irritants. Some medical practitioners do not regard the lupus brain fog as a disabling issue that reduces their patient’s quality of life. This is unacceptable. Lastly, if such large amounts of lupus patients are living and battling with the lingering consequences of brain fog, than why isn’t someone in the research field really pounding the scientific pavement for us to pinpoint the exact cause of this and yield our patient population better treatments? We deserve better diagnostic tools and therapies in our lives while we try to climb out of the trenches of the cognitively challenged.
There are also a high number of lupus patients with the secondary Antiphospholipid Antibody Syndrome/APS/Hughes Syndrome as well as those with concurrent fibromyalgia, both who seem to encounter more obvious signs of the insidious brain fog. There are many running jokes among patients regarding the effects of the brain fog monster in their lives. While we have to admit that some of the brain fog incidents are indeed hilarious and even downright entertaining to our loved ones there yet remains the silent population within the brain fog group who are overwhelmed with the mental and emotional impairments brought on by NP-SLE.
The lupus brain fog can cause:
• Cognitive Dysfunction (impaired abstract, concentration & reasoning skills)
• Short-term Memory Loss
• Verbal Fluency Dysfunction (difficulty finding words)
• Impaired Recall
Patients struggle with the cognitive impairments and the ripple effects that it has on their lives. To some patients it is embarrassing, frustrating and certainly regarded as incapacitating. I recall a forum discussion where Angie Phillips (NP-SLE/APS patient-advocate, founder/ creator of Ardent Cerebrations: Musings of Lupus Survivors!), earnestly explained that for her, the disabling effects of NP-SLE have been far more devastating than that of the pain caused by SLE. That she has incurred more disability from the cognitive issues relating to CNS lupus, that she would gladly take the pain and have her mental faculties restored to the way they used to be. I too, have described to my loved ones that I have teetered on near organ failure and have accumulated physical impairments, but not to have the consistency of my cognitive sharpness and verbal fluency has rendered me more defeated than anything else I have ever faced.
A few months ago, while at my primary doctor’s office we were discussing organic brain disease and she explained that neurologists had discovered that commencing to treat stroke patients with SSRI (selective serotonin reuptake inhibitors) antidepressants immediately following stroke promoted faster neuron repair and recovery from their strokes. She surmised that if antidepressants use was benefiting recovering stroke victims than people with organic brain diseases will also benefit from using them. Before you scoff at the idea of swallowing yet another pill, you might consider having a frank discussion with your doctor about whether you may or may not benefit from taking an antidepressant.
If you have a health insurance coverage that will cover neuropsychological testing, you may consider having that done. Once the tests are completed, the psychologist will make recommendations of activities that you can do to exercise areas of your brain that are affected by the brain fog. I know some patients who do brain games to exercise their minds and keep themselves as sharp as possible. There are very good games on the internet developed by neurologists and neuropsychologists, and a small amount of time surfing the Web may provide you with a good site to frequent. Do understand that lupus brain fog will wax and wane, some days will be better than others will. Do not be hard on yourself!
Coping and Strategizing – Lupie Cognitive Survival Tips:
• Do not multi-task (it can prove dangerous)
• Do not overbook your daily schedule
• Do not over commit yourself
• Prioritize appointments/events/activities (don’t double book things on the same day)
• Determine your peak energy time of the day (schedule needs around that time)
• Reduce background noises when needing to focus
• Use only one calendar (mark doctor’s appointments in one color)
• Set timers for reminders (cellular phones and your PC have different applications)
• Note pads (one for pocketbook, one for computer desk and one for kitchen countertop)
• Keep things simple
• Learn to say “no” (we do not have to commit to every event or activity)
Do not be hard on yourself! Explain to your loved ones about your frustrations and concerns with how lupus is affecting your cognitive abilities. Some of our loved ones may even have simple suggestions to simplify things in our lives, which may foster better memory and peace of mind. Please do not try to tough things out on your own; this will not produce great results. Be willing to ask others for assistance with things. If you are a type-A control freak of a Lupie, try the Zen Lupie practice of not being a control freak! Living with a chronic illness while life whirls about us, can be at times very stressful. How often do I forget that quality of life begins right smack between my very own ears? As in life, some days will be easier than others will and when we lose our way, another veteran patient stands ready to hand feed us morsels that will lead us out of darkness and place us back on the path of inner strength and hope.
*The best resource in your healthcare is your own doctor. The Lupus Magazine does not endorse or recommend any medication or drug company. This article is informational only and should not replace the medical care of your doctor.
I have noticed in my own experience and others, that when we are diagnosed with one autoimmune disease, sometimes we develop more that will overlap with our original diagnosis. For instance, I have SLE or lupus, and overlapping that I have fibromyalgia, IBS, corneal erosion, raynauds and a host of other autoimmune diseases. I found this information on the website, www.lupus.org from the Lupus Foundation of America. It makes an interesting read…
Lupus and Overlap
Connective Tissue Disease And Overlap Syndromes
The connective tissue diseases are a family of closely related disorders. They include: rheumatoid arthritis (RA), systemic lupus erythematosus (SLE or lupus), polymyositis-dermatomyositis (PM-DM), systemic sclerosis (SSc or scleroderma), Sjogren’s syndrome (SS) and various forms of vasculitis.
These diseases have a number of common features:
- They affect women much more frequently than men.
- They are “multisystem” diseases, capable of affecting the function of many organs.
- They “overlap” with one another, sharing certain clinical symptoms, signs, and laboratory abnormalities.
- Blood vessels are the most common target of injury in all of these diseases.
- The immune system is abnormal and accounts, at least in part, for the observed tissue damage.
Although lupus most often occurs alone, many people with lupus also have symptoms characteristic of one or more of the other connective tissue diseases. In this circumstance, a physician may use the term “overlap” to describe the illness. There are several well-recognized overlaps that may affect people with lupus.
Lupus and Rheumatoid Arthritis
In lupus, joint pain (arthralgia) is common. Joint swelling (arthritis) may be present in some cases, but the majority of those with lupus experience joint pain without swelling or only intermittent swelling. In rheumatoid arthritis (RA), joint swelling is always present and pain is common but less prominent. Because rheumatoid arthritis is more likely than lupus to cause joint deformities and bone destruction, joint replacement or reconstructive surgery is more often required in RA than in SLE. If a person with lupus develops severe arthritis with joint deformities, he/she should be considered to have rheumatoid-like arthritis. In some instances, the physician might have reason to believe that both diseases — SLE and RA — have occurred in the same person. When arthritis develops in the course of lupus, treatment with non-steroidal anti-inflammatory drugs (NSAIDs), low doses of cortisone, and the antimalarial drug hydroxychloroquine (Plaquenil) are usually helpful. People with lupus who have typical rheumatoid arthritis are prescribed the standard forms of RA treatment. These include methotrexate, sulfasalazine and in some cases, more potent drugs to suppress joint inflammation.
Many persons with lupus have muscle pain (myalgia), but a few have muscle weakness due to inflammation (myositis). The “muscle weakness” that people with lupus report is most commonly due to fatigue or high doses of cortisone. In polymyositis-dermatomyositis, the primary problem is muscle weakness due to muscle inflammation. In myositis, weakness especially affects the hips (inability to rise from a chair or toilet seat, or to climb stairs unassisted) and shoulders (inability to lift a weight onto a high shelf or comb one’s hair). Typically, there is little or no pain associated with the weakness. People with myositis have increased blood levels of creatine kinase (CK, a substance that leaks from injured muscle), abnormal electrical activity of muscles (seen in an electromyogram, or EMG), and muscle cell degeneration and inflammation that is found in a muscle biopsy. Prednisone or other cortisone-like drugs are most often recommended for the treatment of myositis, and may be used in combination with other immune-suppressing drugs. Cortisone itself, in high doses, may actually cause muscle weakness of the hips and shoulders, very similar to what occurs in myositis. But in this condition, called “steroid myopathy,” the CK, EMG, and the muscle biopsy do not suggest inflammation, and recovery of strength promptly follows reduction of the cortisone dose.
Lupus and Scleroderma
The hallmark of scleroderma (SSc) is thickened skin (sclero=hard, derma=skin) which affects the fingers, and often the hands, forearms, feet, and face. If skin thickening is widespread, it may extend to the upper arms, thighs, chest, and abdomen. These changes are due to the excessive production and uncontrolled laydown of collagen, the substance normally present in scar tissue. The variety of skin rashes seen in lupus are due to inflammation, rather than fibrosis. These include the facial “butterfly” rash and photosensitivity reaction (rash, hives or blisters immediately after exposure to sunlight or other sources of ultraviolet light). The latter is limited to the skin surfaces exposed. An exception is discoid lupus, which consists of spots or patches of rash, mostly in sun exposed areas (face, ears, extremities), which typically cause scarring and skin pigment changes. The appearance of scleroderma and discoid lupus are entirely different, and should be easily distinguished from one another by your physician.
Other features less common in SLE than in SSc include: scarring of the lower portions of the lung (pulmonary fibrosis); difficulty in swallowing solid foods such as bread or meat; and heartburn or indigestion from stomach acid “refluxing” (coming back up) into the esophagus. Difficulty swallowing and reflux are due to sluggish and uncoordinated motion of the muscle layer of the esophagus (esophageal dysmotility). Scleroderma often leads to finger and hand deformities as well, due to the combination of skin thickening, arthritis, tendinitis and tenosynovitis (inflammation and scarring of tendons and their lining tissues). These processes ultimately result in limited movement of the fingers. Raynaud’s phenomenon — when fingers turn blue or white with cold — occurs in 95 percent of people with scleroderma and in 40 percent of persons with lupus.
The primary treatment approaches to SSc are quite different from those for lupus. Therefore, treatment for scleroderma-like problems in people with lupus should be individualized and directed at the particular problems present at any given time.
Lupus and Overlap
Mixed Connective Tissue Disease
Some individuals have symptoms and signs of three connective tissue diseases, i.e., lupus, polymyositis-dermatomyositis, and scleroderma. At any given time, the combination of problems encountered by the patient may vary considerably, from no active disease to features of one, two, or all three of these conditions at the same time. These persons often (but not always) have one specific blood antibody in their blood (anti-U1RNP antibody) but not the other antibodies commonly associated with SLE, SSc, or PM-DM. Whether this is an entirely separate disease, or a situation in which one person has three diseases, remains uncertain. However, the presence of a single blood antibody is a strong point in favor of a distinctive disease. As in the other circumstances mentioned above, treatment should be individualized and directed at the particular problems present at any given time.
Henrik Sjögren was a Swedish ophthalmologist and the first to recognize that dry eyes and dry mouth were often found in people with connective tissue diseases. These symptoms are caused by the accumulation of immune system cells (lymphocytes) in and around tear and saliva producing glands. The build-up of cells disturbs the function of these glands and leads to reduced production of tears and saliva. This condition also interferes with the protective mechanisms of the eye and mouth. Eye inflammation and ulcers of the cornea, as well as fungal infections of the mouth (thrush), occur with increased frequency in those with Sjogren’s. Rarely, a person with this disorder develops a malignancy (cancer) affecting the lymphocytes (lymphoma). Today, Sjogren’s syndrome is itself accorded the status of a distinct connective tissue disorder.
Sjogren’s Syndrome also occurs in some people with lupus. They have an increased frequency of sun-sensitive rashes and Sjogren’s-related blood antibodies (anti-SSA and anti-SSB antibodies). Women with anti-SSA antibodies are at increased risk of having babies with “neonatal lupus.” Symptoms in the infant can be as minor as a temporary lupus-like skin rash, or as serious as permanent damage to the electrical system of the heart which results in a very slow heart rate (complete heart block).
The best treatments for Sjogren’s Syndrome include: artificial tears (usually satisfactory) and either artificial saliva (most often unsatisfactory) or a saliva stimulant such as pilocarpine, and hydroxychloroquine (Plaquenil). Eye drops containing cyclosporin have also just been introduced and have significant benefit for dry eyes in some cases. Arthritis, fatigue and skin rash in people with Sjogren’s is often treated with Plaquenil.
Frequency Of Overlap Syndromes In People With Lupus
The majority of people with lupus have lupus alone. Between 5 and 30 percent of people with lupus report having overlap symptoms. The likelihood of a person with lupus also having an overlap disease is 15 percent, distributed as follows:
|Overlap Disease||Approximate Rate
|Mixed Connective Tissue Disease||
Heredity And Overlap
It is unusual (less than 10 percent of the time) for a person with lupus to have a close family member (parent, child, brother, or sister) who also suffers from lupus. However, it is common for persons with lupus to have relatives (including grandparents, aunts/uncles, cousins) with other connective tissue diseases such as rheumatoid arthritis, Sjogren’s Syndrome, scleroderma, etc. These co-occurrences raise the possibility that heredity may be a factor in all of the connective tissue diseases. Most scientists agree that important hereditary associations with these diseases are present in some families. Additional research is needed to shed light on this important question.
Prognosis For People With Lupus And Overlap Syndromes
It is important for those with lupus to be aware of the symptoms that might indicate the development of “overlap” features, since these symptoms and abnormalities may be best managed with treatments not typically used for lupus. Fortunately, when an overlap syndrome is present, the symptoms characteristic of the other connective tissue diseases involved are usually mild and not life-threatening.
My area has a Lupus Support Group that meets once a month. The meetings are help the third Tuesday of each month at the Atrium Medical Center. Here is all of the information for those of you in the Middletown and surrounding areas:
Meets: Third Tuesday of each month
Address: Atrium Medical Center, 1 Medical Center Drive, Middletown, OH
Rhonda Roberts, Facillitator
Contact 440-591-7775 or Rhonda@LupusCincinnati.org
Well, once again, here I am expounding the ups and downs of this disease called lupus. The big bad wolf (as it is also known) has taken a big bite out of me lately by keeping me close to my bed and not allowing me to have energy for but a few moments at once. All in all, it has been tough this last five days or so. In keeping with the promise to tell the good with the bad and ugly, I am writing this blog today to share some really good news!
Today was a decent day. I have been out of bed most of the day. Albeit, I have been on the couch for most of it, but I was out of bed! This is a considerable victory for me because a few days ago, it took all my energy just to get to the bathroom. I even babysat my grand Courtney Scarlett for two hours while her mom took my grandson to see the doctor. She is good medicine for me (as are all of my grands). She sat quietly on the couch and watched Dora and Team Umizoomi with Meemaw.
I have found that, contrary to popular belief, children are quite intuitive about adults. In my experience with my grandchildren, I have found that they know when I can or cannot be more active with them. My grandchildren have seen their grandmother in the hospital, taking many pills daily, in bed, on the couch, and basically flat on my back so many times that to them it is a normal thing that I am not able to do much physically with them. On the rare occassions when I am able to do more than my “normal”, they are astonished to see their Meemaw running or jumping or being silly. I have tried not to upset them by having them see me give myself injections of meds, or the pain when I move or walk, etc., but they have learned from infancy that this meemaw cannot do things and they accept me as I am.
It is an amazing thing that children can accept you as you are and love you still, yet most of the world at large seems to not be able to accept you as someone with a disease that doesn’t show. Most try to put you in a category of any of the following: fat/skinny, lazy, attention seeking, hypochondriac, doctor shopping, pill popping, all in your head, making it up, oh please; types of things so they can justify making fun of you or dismissing your illness altogether. We have all had this in some form or another in our disease process. It can even include doctors we are looking up to for help and healing.
I am going offtrack now but on to a rant of mine so here goes…
Ok, here is a tidbit about me. I love to watch the television show “Mystery Diagnosis“. Do you know why? It is because there are many more people out there who have serious and debilitating diseases that have been in the same boat as many of us lupies. They have been to many different doctors, who have told them any number of things and even dismissed them altogether, only to find that one rare gem of a doctor who listened and put it all together.
On this show, I heard a comment from one of the doctors who had helped one of these people to find the correct diagnosis and was treating the patient for it. He made the statement that doctors should know the difference between lumping and sifting. He said doctors should always look at the overall picture (lumping) of the patient and how they present to the doctors versus the opposite by treating each small bit of the disease piece by pice by many different doctors (sifting). For example, if you have lupus, you may have gone to your primary care doctor first, who then referred you to another doctor who treated you for one thing, then sent to another doctor who treated you for another thing, but in the long run, none of them saw the overall picture of the lupus constellation of symptoms. It happens on almost every show on this tv series. It never ceases to amaze me that so many of our doctors out there are just skimming by on the first easy thing they can find to “take care of” the reason for your visits.
I know, there are many good doctors out there. I have several in fact. However, it is by trial and error that I have happened upon them. I really do trust my doctors and the main reason why is that they respect me as a person. If I call or come in to see them, there is a valid reason and they know it. As a former medical professional, I am not some one who is afraid to speak my mind. I have personally “fired” a couple of doctors in my time. I have moved to different states and kept my doctors here in Ohio because I could not find ones who were as qualified and competent as the ones I see here. I have tried to find some, but even if it starts out good, they always seem to let me down by assuming I am some ignorant female who is attention seeking. I have heard that one before. They fail to see that I am sick, truly sick, and only want to be well, or as well as I can be.
The thing I want to stress most emphatically is that we patients are the consumers here. We are the ones who pay the bills. If you are not satisfied with your care, find another doctor. As frustrating as the process may be, in the long run, a doctor who respects you and your feelings is the one you will get the best care from.
One of my doctors that I know as a person as well as a doctor, always gives me hugs when she sees me, either in her office, or in public. She is a nurturing and caring person who believed me when I thought I was losing my mind. She knew that I was not making this stuff up and she kept on until we found out why. We all need and deserve a doctor like this one.
I know, many doctors are overworked and only have a few minutes to give to each patient, however, by being prepared and taking an active role in our medical care, we show them that we are as responsible for our care as they are and a true healer will appreciate us taking that active role. I say beware of those doctors who have a god complex. If they think your ideas or your research or your opinions are of no concern and act like you are silly for any of them, then leave at once and find someone who will take the time and give you their respect. After all, it is YOU who is sick, not them. It can be very enpowering to find where your doctor falls in this equation and enlightening to see how they feel about you and your feelings.
Now what has brought this on, this rant of mine? I read an article that many doctors think patients should not become empowered by researching their diseases and asking questions from this research. Hm… interesting indeed. I think I have made my point on this subject clear. In the meantime, I hope you all find doctors who are genuinely interested in your health and care and give you the respect you deserve. I now will step off my soapbox…
Hello everyone! Today was a great day! Truly! It started by waking up and going to the Walk for Lupus Now walk. Once there, my son and dil came with the baby, my mother came with another granddaughter and I saw old friends I met last year. It was a lot of fun! I also was so happy because we made our team goal of $250! Woot woot! We were $40 short before the walk started and then son and dil gave that and we made it!
I have so many people to thank for the success! We had encouragement from many who donated money to the cause! We also had none who were committed to walking on our team. While some were not able to keep their committment because of very valid reasons, others stepped up to fill the void and we had a great time! It is encouraging to me to see that my grandchildren are being taught by example to give and help others. This powerful lesson can be taught without actions but it means so much more when they see examples of others who are giving of themselves as well.
On that note, I am blessed indeed! Last year, four of my grands walked with me. Also last year, three of those same grands grew their hair and gave it to Locka of Love. They do that every time they grown their hair out. My grand who was walking today is only five and yet she knew to wear her purple outfit and she remembered that only lupus patients wear the lupus hats! I tried to get her to wear mine (since I was not walking) and she told me that since I have lupus, I needed to wear it! From the mouths of babes… she also raised $55 which meant she got a tshirt, a bracelet and a car magnet! She did not know it until they gave them to her! She was so proud and happy!!!
On another positive note, last year we had 17 patients attending the walk and this year we had 25! The word is getting out and not only do these people get input and support about the disease from others at the walk, but they find out where the support groups are in their area and other resources available to them. It is not good that we are increasing in numbers but it shows there are many more out there!
Sadly, one incident did mar the day. One of the friends of several people there got lost and stopped at a restaurant in Blue Ball (named Mom’s) to ask for directions. She was not only completely ignored but blatantly so. You see, she is african american and it appears that the folks at this particular establishment are prejudiced and went out of their way to get her to leave. She cried and we were ready to go back and see what the problem had been. In this day and age, it still shocks me that this kind of behavior is still out there. That is why I put the name of the restaurant and the location right here. No one, and I mean no one, should ever have this kind of treatment in this day and age!!!!
I did not walk. Unfortunately, my lymph nodes in my neck and under my arms are swollen and painful. My mouth is so sore (from sores) that I am unable to eat anything but soft foods. I am also running a bit of fever and really so tired that I can barely function. Yet, after the walk, I drove three hours to Ky. to bring my sil her car back. I am in bed as I write this, medicated (which explains any typos) and in pain from my fingers to my feet and to my mouth and in between. Was the walk worth it? YES! I may be in bed for a few days or so but in the end, I feel a sense of accomplishment in getting our goals met and the walk done!
My sil and bil are such sweeties and they know I need to rest. I am enjoying their hospitality until we return home. In the interim, my son is house and animal sitting and enjoying HIS time alone! It is nice to not worry about things.
That is it for today! Now, I get to start fund raising for next year! The more I can get done, the more we can raise! Thanks to each and every one who helped in any way to make today the success it was! I am truly blessed!
As I woke up this morning, I was wondering what the day would bring. I felt good and went about getting some laundry done and dishes done and other mundane household chores. I was feeling great so I enjoy doing these things when I feel great.
As the day has gone on, I have found my strength waning, and my energy almost all gone. It is like someone has a lightswitch and when it is “on” I am fine (at least for me, lol). The change of energy can occur much like that light switch, and as quickly. I was humming around the house one minute and then in a few more minutes, I was in bed. Yes, in bed. Arms and legs feel like spaghetti noodles, and pain has increased as day has gone on. I took my meds and yet it still hurts.
As I am laying here I noticed that my kitty cat, Shelby, has joined me and is sleeping next to me. If you have read any of my previous posts, you will know how she seems to sense that I need comfort and she stays next to me when I am not feeling good. When I got up and went into the kitchen, she followed. When I came back to bed, she followed. She seems to feel it is her duty to make sure I am ok and if she has to stay by my side, that is what she does. It is amazing to see how intuitive animals can be.
Our dog is even in here with me. I am not sure if she is intuitive, but she wants company so here she is too.
So, in a nutshell, I got the day started off well, then it deteriorated later in the day to where I am now in bed, resting. Have I mentioned how much I hate lupus? It can take a great day and turn it upside down in a matter of minutes, it seems, and make me a slave to the bed. So, I am resting here in bed, playing computer games, and napping off and on. That is how you attempt to tame the beast. If you do not listen to your body, you will get worse, not better.
My Walk for Lupus Now event is Saturday at 9 am. I am hoping to get to walk, but we will see how I feel. I can attend and not walk being as I am a lupus patient, and it doesn’t matter one way or the other. I liked walking last year and walked a mile! woot woot! Last year our team raised $125 and I set our goal this year at $250. Sadly, we will not make it, it looks like, but we have beaten last years total so that is a good thing. It counts!
Several of my walkers have been hit hard with difficulties. One has broken her foot, another tore a tendon and found out her husband has prostate cancer, another one’s husband passed away a few days ago, another one got a new job and has to work, and so it leaves just me, my 5 year old granddaughter, and my daughter in law and other granddaughter to walk and represent our team. Our team name is Beautiful Butterflies. I am the captain. This is only our second year having this walk so I am pleased that it is getting the attention it deserves.
Next year, I will work harder to get some corporate sponsorship and giveaways and raffles and such to earn more money to fund the research we so desperately need for this disease. I, personally, am sick and tired of being sick and tired and I worry about my grandchildren and children developing this disease as a result of genetics and me passing it on to them. I pray that doesn’t happen but you never know. That is my reason for walking, to find a cure. A cure will keep them all safe from the threat of a life in pan and uncertainty. It gives me hope to think it may happen.
Well, I feel a little nappie coming on so that is it for now. I am hoping I can research some of those other autoimmune diseases for a future blog post. I found it interesting to see the list and read a bit about each one. I think others may like that as well. Thanks to you all for reading this blog. I truly appreciate each and every one of you!
I have been whining a lot lately about the bad days, but I am currently enjoying a run of good days so I need to share the good and the bad.
I have had a lot of rest and it seems to have worked in keeping the wolf moving along much slower than normal. I tell you, a day or two of sleep will cure what ails you! At least in lupus, it can.
Things have been crazy around here for a couple of months now. We are attempting to take a house and make it into a home. This involves a major gut job and we are doing it in small increments. In the meantime, we have boxes stacked everywhere and you have to walk around them. In the hall, you have to turn sideways in places to get where you are going. Add packing up my mil and her things and putting them into storage, and getting our stuff out of storage a tiny bit at a time and you get the picture of life in my house right now.
After all the chaos mentioned above, you add this disease lupus, and it can be actually overwhelming for a normal person, let alone a sick one. So, when these good days show up unexpectedly, I tend to over do it. I have been guilty of painting a whole room out in one day, two coats worth. I have also been guilty of washing the laundry and the dishes (by hand) and finishing them in one day. If you throw in babysitting a grand or two and making a full supper, then you see how I operate, especially when feeling decent.
In the end, I think I am feeling better because the doctor gave me new doses of my meds. I think sometimes the doctors are afraid of upping dosages to be therapeutic for the patient. I know this new dosage is helping me be able to do what most people would call “normal” daily rituals many take for granted.
Do you have to stop and think before you head out to the grocery? What if your energy runs out halfway through the store? What if you have to go to bed immediatley upon returning from the store? What if you forget the things you went for and instead buy other things? What about arriving int he parking lot only to find your energy is gone already and you head back home? For most people, this is silly to think about. For lupies, we have these things on our minds all the time. We have to plan meticulously and prepare for every eventuality, including not following through on plans.
There have been milestones I have missed, due to lupus. My daughter and I were scheduled to go see Cher in concert (her farewell concert). I love Cher and so does my daughter. Unfortunately, the week of the concert, my doctor put me on chemotherapy meds which made me weak and sick. You guessed it, I was unable to go to the concert. My mom went with my daughter instead. No amount of wanting to go can help you when you cannot go. The adage of “the mind is willing but the body is weak” is certainly true with lupus.
Whenever I make plans, I always use the disclaimer “if I am able”. How sad it can be for those who really do not understand because at times, some people get angry at me like I am personally responsible for the lupus acting up. Yes, it happens a lot. That is why I wrote it here.
Ok, so now that I have rambled on and on and totally gotten off the subject, I will close this post. I hope it makes sense to you all who read this. It is just my thoughts and how they roam around at times. I hope you all have pain free days ahead and loving and supportive friends and family to help you get through the bad days.
The title says it all… a new day today! It is as if all the last few days never happened and things might be getting better, finally, but I will not hold my breath…so here is today’s installment living with lupus and the ups and downs we experience on this roller coaster ride…enjoy the read!
Well, all the gloom and doom I have been feeling has lifted and this morning, I woke up feeling wonderful. Go figure. I have been in a lot of pain and having my joints all acting awfully. Then, after a few days rest, I am feeling much improved. Not all the way better but indeed improved. Hmmm, I wonder… but I digress…
You see, this disease can do things like this and make you feel like you are losing your mind at times. It is hard to wrap your mind around one day laying in bed and the next feeling good enough to paint rooms and cook dinner. Yet, it is how this lupus treats us. Some days, you can be fine and busy and productive and in an hour or so, be flat on your back in bed. It is the nature of the beast, the beast being the wolf called lupus.
It is the reason many of us have had to leave lucrative careers and retire early or go on disability. It cannot be predicted which days you can work so since those “dream” jobs of working at home are few and far between, we stop working. It can make you feel like a failure when you cannot work anymore like you used to.
So, I did get a lot accomplished today despite the fact that I am still in pain and my joints are still hurting. Just not as bad as they have been. Now, tomorrow we will see if I overdid it. I hope not, but I am afraid that when these good days come, I tend to overdo to make up for the days when I could not do things. When that happens, I pay a heavy price the next day, usually, but I have been pleasantly surprised sometimes too!
My daughter did call today and told me that the school my granddaughter goes to had another mishap with the bus and getting her home. This is the second time in the month and what makes it worse is my granddaughter is only 5 and in kindergarten. If my daughter doesn’t call the school, I probably will. It is reprehensible what they have done in this first month! I am livid and will not settle down until something is done to rectify it or someone listens and makes amends. Poor thing, my granddaughter is dreading school now and she loved it last year! The difference? She attended private school last year and this year she is in public schools. It is a sad commentary on the public school system that these things can occur, especially in this day and time when safety is a major concern.
Another thing that has occurred is that my hubs went camping for a few days with just our dog for company. He enjoyed it but came home today with a stomach bug. Bad way to end a relaxing trip.
Well, now tomorrow is a new day and I hope it will find everyone happy and pain free! May you be able to accomplish all the things on your list and feel a sense of pride and accomplishment in doing so.