Wednesday, May 15, 2013
The tongue has been recognized as an important diagnostic tool for millennia, dating back to ancient Chinese medicine. Even modern Western doctors will ask you to stick out your tongue when you go for a check-up. As discussed in this article, the color of your tongue, as well as the appearance of any bumps or lesions, can tell you a lot about your health. So find a mirror, stick out your tongue, and see if any of these common tongue indicators say anything about your health.
A White Tongue
One of the most common tongue issues that can signal larger health problems is a white coating, or white spots. Generally, the cause of a white tongue is bacterial. You may be suffering from an oral yeast infection, also known as thrush, or an infection of the throat, such as strep. Or, because your mouth is connected to your digestive system, a white tongue may indicate an overgrowth of bacteria in your gut.
While doctors don’t know exactly what causes it, oral lichen planus is another concern indicated by a white tongue. Experts believe that improving oral hygiene, staying away from cigarettes, and avoiding acidic and spicy foods might help get rid of the white coating if this is the case. A less common, but potentially serious, cause of a white coating on the tongue is leukoplakia, an excess of cell growth in the mouth that can sometimes act as a precursor to oral cancer.
A Bright Red Tongue
If your tongue is a bright cherry red rather than its usual pinkish hue, you may be suffering from a vitamin deficiency. A bright red tongue can indicate anemia, which means you should up your iron intake. Alternatively, you may be short on B vitamins, which you can pack into your diet with nuts, shellfish, and lean meats.
A Purple Tongue
In the body, purple and blue hues generally signal a lack of oxygen, which remains true when talking about your mouth and tongue. If your tongue is purple, your circulation may be off, or you may be suffering from bronchitis, asthma, or another lung issue. High cholesterol, including blockages and plaques in the arteries, may also cause your tongue to turn purple.
A Dry Tongue
There are a whole host of causes of a dry tongue and mouth, ranging from the minor to the serious. People who tend to breathe through their mouths, as well as smokers, have a tendency to wind up with tongues that feel dry and sticky. Many different medications, especially cancer treatments like chemotherapy and radiation, also come with dry mouth as a common side effect. And of course, minor dehydration often first appears as a feeling of dryness on the tongue or in the mouth.
However, a dry mouth can also indicate some more dangerous issues that you might want to talk to your doctor about if you can’t find an immediate cause of your symptoms. A number of diseases, ranging from diabetes to Parkinson’s disease to HIV/AIDS, can cause dry mouth. Nerve damage stemming from injury or past surgeries can also play a role in the development of oral dryness. Finally, injuries affecting the salivary glands themselves also prevent the proper amount of moisture from being maintained in your mouth.
Thursday, April 25, 2013
What are antidepressants and why are they involved in lupus treatment?
Anti-depressant medications are used to treat clinical depression or pain. Depression and anxiety are present in almost half of all people who have lupus and can be caused by the disease itself, by medications used to treat the disease, or by inadequate coping mechanisms. 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. Lupus 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.”
Some people think that people with chronic illnesses like lupus feel sad or depressed because they are sick. This notion can cause physicians and loved ones to dismiss or overlook clinical depression in people with lupus. 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), lupus involvement of certain organs such as the brain, heart, and kidneys, 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.
How do antidepressants work?
Most antidepressants work by slowing the removal of certain chemicals—neurotransmitters—from the brain. Neurotransmitters are chemicals that carry messages between neurons (nerve cells in the brain) and are important in the normal functioning of your brain. However, an imbalance in the amount of a certain neurotransmitter can cause a slowing of communication between neurons, and your normal feelings, emotions, or thoughts may become impaired. Antidepressants help people by making certain neurotransmitters associated with depression (specifically, dopamine, norepinephrine/noradrenaline, and/or serotonin) more available to the brain. The availability of more of a certain neurotransmitter means that more of this chemical will reach is target neuron, increasing communication and connectivity (neurotransmission) between the nerve cells in your brain and thus reducing certain symptoms of depression.
What kinds of medications are categorized as antidepressants?
Anti-depressant medications include four main kinds of drugs—tricyclic antidepressants (TCAs), selective serotonin reuptake inhibitors (SSRIs), selective serotonin and norepinephrine reuptake inhibitors (SNRIs), and lithium. Other types of medications are also used, including venlafaxine (Effexor), bupropion (Wellbutrin, Zyban), mirtazapine (Remeron), and trazodone (Desyrel). Anti-anxiety medications and/or hypnotics (for insomnia) may be recommended in addition to antidepressants to help combat certain symptoms, and several combination therapies are also available.
How well do antidepressants work?
Six out of 10 people will feel better with the first antidepressant they try; however, the other 4 people will need to try another antidepressant until they find the one that is right for them. In addition, most people will need to take an antidepressant regularly for at least 6 weeks until they feel the full effect. You may also need to keep taking them for longer periods of time, even for the rest of your life.
What should I keep in mind while taking antidepressants?
Antidepressants can cause side effects that may mimic or intensify certain lupus symptoms. For example, antidepressants may cause an increase in the drying of mucous membranes, which could further aggravate symptoms in people with Sjogren’s syndrome (dry eye/dry mouth syndrome). In addition, antidepressants have been associated in rare cases among the general population (both non-lupus and lupus patients) with worsening of feelings of depression and suicidal thoughts. This side effect is especially prevalent early in treatment, during an alteration of dosage, or in people under 25. If you feel you are experiencing this effect, contact your doctor. You may need to stop the medication if symptoms worsen. However, you should not stop taking your medication without first speaking with your doctor. While most antidepressants are considered to be nonaddictive, suddenly stopping your treatment or missing doses can cause feelings of withdrawal, a phenomenon called discontinuation syndrome. Symptoms of this condition include nausea, headache, dizziness, lethargy, and flu-like symptoms. If you feel you should stop taking antidepressants, work with your doctor to slowly decrease your dose before you stop.
Types of Antidepressants
Tricyclic antidepressants (TCAs)
Amitriptyline (Elavil, Endep)
Amoxapine (Asendin, Defanyl, Demolox, Moxadil)
Doxepin (Adapin, Sinequan)
Imipramine (Tofranil, Janimine)
Nortriptyline (Aventyl, Pamelor)
Tricyclic antidepressants (TCAs) have been on the market since the 1960s. These drugs were the most commonly prescribed antidepressants until the late-1980s, when selective serotonin reuptake inhibitors (SSRIs) were introduced. TCAs work by inhibiting the reabsorption (or, reuptake) of three neurotransmitters in the brain that can affect mood and behavior, namely serotonin, norepinephrine, and, to a lesser extent, dopamine. Tricyclic antidepressants are named for their chemical structure, which contains three rings of atoms.
Nowadays, TCAs are used mainly in very low doses at night to help with pain and to restore natural sleep patterns. TCAs work as an analgesic (pain reliever) for many neuropathic pain syndromes (pain resulting from disturbances in your nervous system). They can also help people with problems sleeping—including those with fibromyalgia, a syndrome that causes fatigue, generalized weakness, and pain amplification—to regain normal sleep regimens.
TCAs are less selective than other antidepressant medications in the cells that they affect. For example, TCAs also block certain cell receptors in your brain, which can cause certain side effects. The potential side effects of TCAs include drowsiness, dry mouth, changes in appetite, impaired thinking or confusion, blurred vision, constipation, water retention, dizziness, impaired sexual function, increased heart rate, headache, low blood pressure, sensitivity to sunlight, weight gain, nausea, and weakness.
People with narrow-angle glaucoma or an enlarged prostate should avoid TCAs, and those with a history of seizures or thyroid problems should use them with caution. Speak to your doctor if you experience any of these conditions; only she/he can decide whether TCAs are the right choice for you.
If you are pregnant, may become pregnant, or are breast-feeding, speak to your doctor about whether continuing therapy with TCAs is right for you.
Selective serotonin reuptake inhibitors (SSRIs)
Escitalopram oxalate (Lexapro)
Fluoxetine (Prozac, Sarafem, Symbyax)
Fluvoxamine (Luvox, Fevarin, Dumyrox)
Paroxetine (Paxil, Pexeva)
Selective serotonin reuptake inhibitors (SSRIs) are usually preferred over other antidepressants because they are associated with fewer side effects. These medications are particularly helpful in the early stages of depression, and some studies suggest that SSRIs are most useful for people with more minor forms of depression. SSRIs work by preventing the reuptake (reabsorption) of serotonin by nerve cells (neurons) in the brain. In doing this, SSRIs cause more serotonin to be available in the brain for the sending of nerve impulses (neurotransmission), improving mood. The term “selective” stems from the fact that these medications work only to affect serotonin and not other neurotransmitters.
SSRIs generally come in tablet form. Some are available as extended- or controlled-release tablets, usually labeled XR or CR. In addition to causing fewer side effects than other antidepressants, SSRIs are generally less likely to interact with other medications, and they are less harmful in the event of an overdose. Most SSRIs share the same side effects and mechanism of action, but some do have different chemical characteristics, meaning your body may respond differently to different SSRIs. For this reason, it may be beneficial to try a different SSRI if one causes certain side effects or does not work particularly well for you.
Side effects of SSRIs include nausea, impaired sexual function or desire, headache, diarrhea, nervousness, rash, agitation, restlessness, increased sweating, weight loss or gain, drowsiness, or insomnia. If you experience nausea from your medication, you may benefit from trying a controlled-release tablet instead. In addition, be sure to speak to your doctor about any other medications you may be taking, especially other medications that may affect serotonin levels such as St. John’s wort. Very high levels of serotonin in the brain, which can occur when SSRIs interact with other antidepressants, can cause something called “serotonin syndrome.” Signs of serotonin syndrome include confusion, restlessness, hallucinations, extreme agitation, fluctuations in blood pressure, increased heart rate, nausea, vomiting, fever, seizures, and coma. This rare but serious side effect requires immediate medical attention. For this reason, you should not take any other form of antidepressants while taking SSRIs or within two weeks of each other, without the knowledge and permission of your doctor.
In addition, be sure to speak with your doctor if you are pregnant or may become pregnant. Certain SSRIs, namely Paxil, have been associated with birth defects. In 2006, the FDA issued a warning that women taking SSRIs during pregnancy—especially after the first 20 weeks—were at a risk for persistent pulmonary hypertension, a condition that makes it difficult for your newborn baby to breath outside the womb.
Serotonin and norepinephrine reuptake inhibitors (SNRIs)
Serotonin and norepinephrine reuptake inhibitors (SNRIs) are a class of antidepressants that are used to treat depression and certain anxiety disorders. They work by inhibiting the reabsorption (reuptake) of certain neurotransmitters associated depression, namely serotonin and norepinephrine. In doing this, SNRIs increase neurotransmission (communication) between the nerve cells in your brain and thus help to elevate mood. SNRIs are generally believed to cause fewer side effects than older antidepressant medications such as tricyclic antidepressants. However, SNRIs do have some potential side effects, including nausea, vomiting, dizziness, insomnia, drowsiness, trouble sleeping, abnormal dreams, impaired sexual function and desire, headache, constipation, excessive sweating, dry mouth, tremor, gas, anxiety, agitation, and abnormal vision.
Like SSRIs, SNRIs can also cause “serotonin syndrome” if taken in conjunction with or within two weeks of other medications that increase serotonin in the brain, including St. John’s wort. Serotonin syndrome requires immediate medical attention and can cause confusion, restlessness, hallucinations, severe agitation, fluctuations in blood pressure, increased heart rate, nausea, vomiting, fever, seizures, and coma.
In addition, you should not take venlafaxine (Effexor) if you have uncontrolled high blood pressure or high cholesterol, since this medication is known to raise blood pressure and cholesterol levels, even in healthy individuals. Your doctor may recommend that you get additional blood pressure and cholesterol checks, even if you experience normal levels. In addition, people who have narrow-angle glaucoma or raised intraocular pressure should also avoid all SNRIs.
If you are pregnant or may become pregnant, you should talk to your doctor about whether SNRIs are right for you. These medications have been deemed category C drugs by the FDA, meaning they have shown side effects to the fetus in animal studies but have not been adequately studied in pregnant women. You and your doctor should decide together upon the appropriate course of treatment during pregnancy. SNRIs should be avoided during the third trimester to avoid certain complications in your baby. Evidence suggests that SNRIs taken after the twentieth week of pregnancy increase the risk of persistent pulmonary hypertension, a condition that makes it more difficult for your newborn baby to breath outside the womb.
Lithium (Eskalith, Lithobid)
Lithium (Eskalith, Lithobid) is used to treat manic depression, a condition characterized by severe mood changes, ranging from a state of excitement and elation to feelings of severe sadness and depression. Lithium works to reduce the frequency and severity of manic-depressive states, but it is not yet known exactly how lithium works to help stabilize a person’s moods. However, it is known that lithium alters the flow of sodium through nerve and muscle cells in the body, interferes with the production and uptake of certain neurotransmitters, affects the concentrations of tryptophan and serotonin in the brain, and interrupts the signaling of dopamine receptors in the brain. Lithium has been used to treat manic depression since the 1950s, and the most common preparation, lithium carbonate, was approved by the FDA in the 1970s. The effects of the medication are usually felt after about 1 week of treatment, but it can take up to 3 weeks to feel the full benefits.
Before starting treatment with lithium, be sure to tell your doctor if you are on a low-sodium diet, since lithium interferes with the regulation of sodium and water levels in the body. Be sure to drink plenty of water throughout the day. In addition, you should always take lithium with food (to prevent stomach upset) and at the same time(s) every day to keep the amount of drug in your body at a constant level.
Lithium can cause certain side effects. The most common side effects include hand tremor, dry mouth, altered taste, weight gain, increased thirst, increased frequency of urination, impotence, decreased sexual desire, and kidney abnormalities. Nausea, vomiting, and diarrhea can also occur but usually disappear as therapy continues. Taking the medication with food can help to alleviate some of these gastrointestinal side effects. Lithium can also cause low blood pressure and decreased heart rate. Approximately 1 in 25 people taking lithium develops an enlarged thyroid gland (goiter); low thyroid levels (hypothyroidism) have also been reported. Signs of this condition include dry skin, hair loss, hoarseness, increased sensitivity to cold, and swelling of the feet, lower legs, or neck.
Once you start treatment, your doctor should work with you to monitor the amount of lithium in your blood. If lithium blood levels get too high, your dosage should be reduced. Certain signs of high blood lithium levels include loss of appetite, vision problems, exhaustion, muscle weakness, muscle twitches, tremor, unsteady walking, confusion, seizure, arrhythmias, slurred speech, and coma. Once your lithium dosage is stable, you should get blood tests every month, kidney function tests every 3-6 months, and thyroid function tests every year.
Lithium can interact with many medications, including some commonly prescribed in lupus treatment. These medications include most blood pressure medications, NSAIDs, and some other medications (e.g., antidepressants). For this reason, be sure to tell your doctor of any medications you may be taking before starting treatment with lithium.
If you are pregnant or may become pregnant, you should not take lithium, since studies in pregnant women have shown a serious risk to the fetus. In addition, since lithium is secreted into the breast milk, women who are breast feeding should be very careful when taking lithium. Your doctor can advise you on the best course of treatment if you are pregnant, may become pregnant, or are breastfeeding.
Bupropion (Wellbutrin, Zyban)
Bupropion (Wellbutrin, Zyban) is another type of antidepressant classified as a norepinephrine and dopamine reuptake inhibitor (NDRI). NDRIs work by preventing the reuptake of these neurotransmitters in the brain, which in turn elevates mood. Bupropion is used to treat clinical depression and seasonal affective disorder (SAD) and is sometimes implemented in smoking cessation. It can be prescribed either alone or in combination with other antidepressant therapies, such as SSRIs. The exact mechanism of action of bupropion in the brain is not known, but it is thought to work differently than other antidepressant medications.
Side effects of bupropion are generally similar to SSRIs and SNRIs and can include agitation, dry mouth, insomnia, headache, nausea, constipation, and tremor. 4 out of every 1,000 people taking bupropion in doses of less than 450 mg/day experience seizures, and this risk increases by ten times in doses exceeding this amount. Bupropion can also increase blood pressure, so be sure to speak with your doctor if you have hypertension. In addition, be sure your doctor knows about other medications that you may be taking, especially other antidepressants.
If you are pregnant or may become pregnant, talk to your doctor about whether you may take bupropion. One study has suggested a small link between bupropion use in the first trimester and the risk of congenital abnormalities, but other studies must be performed to accurately evaluate this risk. Nursing mothers should avoid bupropion because it is secreted into breast milk.
Wednesday, April 24, 2013
Tips for the Newly Diagnosed
Don't let pain from Fibromyalgia (FM) and Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME), keep you down. Small changes to your daily routine can keep you active and enjoying life. Here are some tips to help you improve your quality of life with FM and/or CFS/ME.
Always Believe in Yourself
And what you are feeling both emotionally and physically. No one can tell you that what you are experiencing is not real! FM and CFS/ME are chronic medical disorders just like diabetes, hypertension, and asthma. While there are still gaps understanding these disorders, and disagreements among researchers as to specific causes, the symptoms are very real, and your suffering is legitimate.
Never Feel Guilty
FM and CFS/ME aren't something you wished for, and they aren't something you can wish away. Healthcare providers have had trouble accepting FM and CFS/ME as bona fide medical conditions because of the lack of readily available blood tests or X-rays that show there is something wrong with the FM and CFS/ME patient's body. However, research studies have revealed problems in such areas as the chemical content of the spinal fluid, the manner in which certain endocrine glands and the autonomic system respond to stress, in brain function, and in patient performance during tests of cognitive and physical function. FM and CFS/ME are not psychiatric conditions or character flaws.
FM and CFS/ME Can Wax and Wane
So on the days that are extra challenging, remember that it will get better. FM and CFS/ME involve much more than just pain. In fact, surveys of patients have consistently suggested that fatigue may be just as problematic, if not more so. Other leading symptoms that are associated with these disorders include sleep disturbances, stiffness, and problems with concentration and certain forms of memory. While many clinicians associate FM and CFS/ME with depression, it appears that anxiety-related issues may be more prominent. Appropriate therapies can help keep flares under control, and good self-management techniques can help stave them off.
You're Never Alone
FM and CFS/ME can sometimes make you feel very alone. Keep in mind that over 10 million Americans have FM and/or CFS/ME and feel just like you do! Our Support Group Database consists of 638 Support Groups in 16 countries worldwide that offer support to people with FM and/or CFS/ME. Help is just around the corner.
Get Enough Sleep!
Many of us are plagued by sleep disturbances, so it is extra important that you do everything you can to make sure that you sleep as well as possible. Go to bed at the same time each night. Develop a bedtime routine. That will help your body to know that it is time to relax. If your bed is uncomfortable, consider getting a new mattress. If a new mattress is not financially feasible, a mattress pad and new pillows might help. Make sure that your bedroom isn't too hot or too cold.
During the day when you get tired, it is important to rest. Rest can be lying down in bed with a book for half an hour or watching TV with your feet propped up. It can be doing a sitting task at work. Whenever I am tired, I do something to make myself more comfortable. That invariably leads to me having more energy for the next thing I need or want to do.
Find A Good Healthcare Provider
Some doctors are more familiar with FM and CFS/ME than others. Ideally, the relationship between a healthcare provider and a patient should be comfortable and based on mutual respect. When considering potential providers, patients should do some "homework." Do they have good reputations among professional colleagues, and do their patients speak well of them? Do they have a positive attitude toward FM and CFS/ME, do they keep up with current insights on treatment options? These are all questions you need answers to when searching for a healthcare provider. Our Doctor Database consists of 5953 doctors in 80 countries worldwide that specialize in helping people with FM and/or CFS/ME.
Try Hot Baths
Soaking in a hot bath is an excellent way to relieve stress and relax your muscles. Thirty minutes in a hot bath (or even better a hot tub) can be a great way to start the day or a relaxing part of your bedtime routine.
Use Gentle Massage
Ask you partner or a friend to rub an aching back. Aching arm or leg muscles can even be massaged by yourself. The trick is keeping the massage gentle. You don't want to trigger a pain reflex, just to signal to your muscles that it is ok to relax.
Ask For Help!
This one is perhaps the most difficult but very important. There are most likely people in your life who would be happy to help out on an occasional or regular basis. Even asking for help with little things can make a huge difference. Can your partner bring you a drink so you don't have to stand up? Can your kids make their own lunches? Is your mom willing to run some errands for you when she is going out to do her own? Asking others to help you with simple things will give you more energy for the important things.
Don't Be Afraid of Pain Relievers
Talk to you doctor about what types of pain relievers might be best for you and then when you need them, take them. I know too many people who suffer because they are afraid of their medication. If you are worried about possible side effects, talk to your doctor and pharmacist about it and change medications if necessary.
Leave Work Stress at Work
Life is hard enough without bringing home stress from a stressful job. This is especially important when you have FM and CFS/ME. Carefully consider each of the sources of stress at your place of employment and come up with a plan to improve things. Can you alternate physical and nonphysical tasks? Share sources of stress with co-workers. It will not be to your benefit to take all the worst things on yourself. If your job causes a lot of stress, see if you can cut back on hours or transfer to a different position or location. It might even be in your best interest to leave. Usually there are other options for cutting work stress, but if your job is making you sicker, it might be best to cut expenses for awhile and find less stressful employment or another way to support yourself.
Keep The Lights On!
Sunlight improves mood and reduces stress. It also helps in the production of vitamin D. Vitamin D deficiency has been linked to bone pain and muscle weakness. Try to take a leisurely walk outside each day, or if you aren't up to it, just sit in a sunny spot and relax. Obviously there are times of the year in some climates where sunshine is a rare occurrence. During those times, keep your house as bright as possible. Turn on the lights when you get up in the morning and don't dim them until it is time to start your bedtime routine. You will find your mood brighter and have fewer FM and CFS/ME symptoms.
Learn to Listen to Yourself
The thing that has helped me the most is learning to stop regularly during the day to see how my body and mind are doing and then to do what is necessary to make myself more comfortable. So many things can make bad flare days worse. Learn to ask yourself if you are hungry or thirsty or need to move or rest. Have you been on the computer too long? Do you need company? It is too easy in our busy lives to just push past our needs, but in the end, learning to listen and respond to yourself, will lead to a happier, less stressful, and less painful life.
Never Give Up Hope!
Every day we are making advances in the awareness, research and treatment of FM and CFS/ME. People, organizations, companies, and medical experts are all working to ensure a better future for people with these medical conditions! There is hope. In the last 15 years, medical science has made tremendous strides in our understanding of the basic pathology of these disorders, and advances are rapidly being made in the manner in which they are being treated.
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand: These are some things that can help you to understand, and help, people who suffer from, often debilitating, chronic pain.
1. Remember that being sick doesn't mean that the sufferer is no longer a human being. Often the chronic pain sufferer spends most of their day in considerable pain and exhaustion. If you visit or live with them, they may not seem like much fun to be with, but they are still as aware as you of everything and have needs just like you, but they're more or less stuck inside a body with constant issues over which they have little or no control. Just like you, they still worry about studies, work, family, friends, and most of the time, would like to hear you talk about your interests and happenings, too.
2. Learn the code. Chronic pain sufferers will often talk differently from people free from constant pain. Living with fatigue, irritability, and sadness at their plight, many sufferers learn to bottle up their feelings and use code to cover up the level of pain. There's also a number scale for pain that doctors teach chronic pain patients early in their treatment. By habit, they may describe their pain on a scale of 1 to 10 where 1 is "no pain at all, feel wonderful" and 10 is the worst pain they ever had in their life. Their pain level ten may be outside your experience, it depends on what you've been through in life.
Don't assume that just because the chronic pain sufferer grits their teeth and says that they're fine that they are. They could very well be covering up, fed up with the lack of understanding in others as to the constancy of their pain.
Accept that words may be inadequate to describe how the sufferer is truly feeling. Think about a time when you experienced pain, like a broken leg, or a very nasty virus that pounded at your head and every muscle in your body. And multiply that and think of it being constant, every day, without respite. It's hard to find the words for that sort of pain.
3. Recognize the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but chronic pain sufferers have often been sick for years and their pain-filled lives have caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they're in. They don't want to be miserable all the time but they often have to work hard at not being miserable. So, if you're talking to them, and they sound happy, it means they are happy, that's all. It doesn't mean that they're not in a lot of pain, or that they're not extremely tired, or that they're getting better, and so forth.
Respect that the person who is in pain is trying their best. Avoid saying, "Oh, you're sounding better!" or "But you look so healthy!" They are merely coping; sounding happy and trying to look normal. If you want to comment on that, it's certainly welcomed.
Look for the signs of pain over the words, so that you can read between the lines. Things that will belie the chipper attitude include restlessness, shifting about, grimacing when they think you're not noticing, sweating, sleep disturbance, teeth grinding, poor concentration, decreased activity, and perhaps even writing down suicidal thoughts or language.
4. Listen. The previous two steps made it clear that chronic pain sufferers can speak in code or make lighter of their pain than is the reality. The next best thing that you can do is to listen to them properly, and to make it clear that you both want to hear what they have to say and that you really have heard it. Use your listening skills to decode what they're hiding or minimizing.
5. Understand and respect the chronic pain sufferer's physical limitations. Being able to stand up for ten minutes doesn't necessarily mean that the sufferer can stand up for twenty minutes, or an hour, or give you a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn't imply that they will be able to do the same today. With a lot of diseases, a person may exhibit obvious signs of immobility, such as paralysis, or total immobilization due to weakness, etc. With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up and each day has to be taken as it comes. In many cases, they don't know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Insert "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, to this step, as the curtailment on a sufferer's ability to be responsive applies to everything that you'd expect a person in good health to be able to do. That's what chronic pain does to its sufferers.
6. Leave your "pep talk" mode for your kids and your gym buddies. Realizing that chronic pain is variable, keep in mind that pep talk can be aggravating and demoralizing for the chronic pain sufferer. As already noted, it's quite possible (for many, it's common) that one day they're able to walk to the park and back, while the next day they'll have trouble getting to the next room. Therefore, it's vital that you don't fall into the trap of saying: "But you did it before!" or "Oh, come on, I know you can do this!" If you want them to do something, then ask if they can and respect their answer.
Get over the need to give platitudes about the value of exercising and fresh air. For a chronic pain sufferer, "getting out and doing things" does not make the pain vanish and can often exacerbate the problems. Bear in mind that you don't know what they go through or how they suffer in their own private time. Telling them that they need to exercise, or do some things to "get their mind off of it", may frustrate them to tears, and is not correct advice, especially if you're not medically trained and haven't got a clue. If they were capable of doing some things any or all of the time, they would.
Remember that chronic pain sufferers are constantly working with doctors and striving to improve and do the right things for their illness. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain; not to mention the recovery time, which can be intense. You can't always read it on their face or in their body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
7. Never use throwaway lines. Assuming you know best by making such statements as "Ah well, that's life, you'll just have to deal with it", or "You'll get over it eventually. Until then, you'll just have to do your best", or worst of all, "Well, you look well enough", etc., are lines that might make you feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope. Psychologist Mark Grant suggests that you throw lifelines rather than throwaway lines, by saying something like: "So how have you survived?"
Admit it when you don't have answers. Don't paper over your ignorance with platitudes or bold allegations not based on fact. There is no harm in saying "I don't know" and then offering to find things out.
8. Check your own patience. If you're impatient and want them to "just get on with it", you risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.
A chronic pain sufferer may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
Be very understanding if the chronic pain sufferer says they have to sit down, lie down, stay in bed, or take these pills right now. It probably means that they do have no choice but to do it right now, and it can't be put off or forgotten just because they happen to be somewhere, or they're right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
9. Be sensitive when suggesting medicines or alternative treaments. Prescription drugs, over-the-counter medicines and alternative therapies can have side effects and unintended consequences. Some may not appreciate suggestions, and it's not because they don't want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven't worked carry the emotional pain of failure, which in and of itself can make the person feel even lower. Of course, if there were something that cured, or even helped people with a particular form of chronic pain, then they should be made aware of it. There is worldwide networking (both on and off the Internet) between people with chronic pain. Those can be good resources. Be sensitive in how you bring it up.
On the other hand, never be afraid to ask them about how satisfied they are with their treatment. Mark Grant says that it is important to ask helpful questions about whether the chronic sufferer thinks their treatment is satisfactory or if they think their pain is bearable. He suggests that people rarely ask these open-ended "helpful questions" that would help the chronic sufferer to open up and really talk.
10. Don't be put off if the chronic pain sufferer seems touchy. If that's the appearance, it's probably because they are. It's not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.
11. Be helpful. The chronic pain sufferer depends a great deal on people who are not sick to support them at home or visit them when they're too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. You can be their link to the "normalcy" of life. You can help them keep in touch with the parts of life that they miss and desperately want to undertake again.
12. Balance your carer responsibilities. If you are living with a chronic pain sufferer or supporting such a person on a regular basis, you need to maintain balance in your life. If you don't take care of your own needs, health, and work-life balance, being around the chronic pain sufferer can bring you down even though you're probably trying hard not to be. Avoid suffering from carer burn-out by getting other people to help, taking time out, and curtailing your guilt trips. Care for this person as much as you're able but also care for yourself.
Pain is a difficult thing to describe to another person. It is felt personally and it is based in both psychological and physical parts of us. The best thing you can do is to never assume that you know how it feels for that person. Sure, you know how it feels for you but each of us is different and it's impossible to get right inside a person's skin and feel their pain.
Depression causes people to show less emotion, which can in turn mask the pain because the sufferer ceases to make it known. Always be on the look out for signs of depression and do not confuse this with there being any less pain.
Avoid being judgmental about drug use pursued by chronic pain sufferers. If medical marijuana improves their life, why debase that respite with moral uptightness?
Chronic pain suffers are not making it up and are not hypochondriacs.
Further to the point about hypochondriacs, it was also pointed out on a back pain course that people who "imagine" they are suffering from debilitating pain are likely to be feeling as much pain.
Comfort those with chronic pain, and let them know that you are there for them.
I hope this helps some people, hugs and Blessings Jayde
Tuesday, September 18, 2012
In this day and age, the diagnosis of an illness such as lupus is not a death sentence. In fact, it is far from it. Most people with lupus have to adjust their lifestyles in some way but can expect to enjoy an almost normal life.
The key to living a good life with lupus is knowing about the condition, understanding what your limitations are and making the absolute most of what you have. So read on, learn about the condition and if there is anything you are unsure about, ask your doctor or contact your closest lupus organisation.
- What is Lupus?
- What causes Lupus?
- Who is most often affected?
- Are all cases of Lupus the same?
- The signs and symptoms of Lupus
- How does Lupus affect the body?
- Diagnosing Lupus
- Laboratory tests
- Treating Lupus
- Lupus in different groups
- Tips for living with lupus - Help yourself to a full life
- Commonly asked questions
- Where can I go for further information and support
- The history of Lupus
What is Lupus?
Lupus is an autoimmune disease. A normal healthy immune system recognises and destroys foreign objects like bacteria and viruses. With autoimmune diseases, however, the immune system starts to attack objects that are not foreign. Hence the term "auto" (self) "immune."
With lupus, the immune system produces an excess of proteins called antibodies that attach themselves to various structures in the body. The accumulation of these antibodies in the tissues can cause inflammation, damage and pain
What causes Lupus?
Despite many years of research, the cause of lupus is still not known. Scientists believe there are several things that may trigger the formation of the antibodies, including genetic, hormonal and environmental factors. Some of the possible triggers include:
- Hormones (females between the age of 15 and 45 are most commonly affected)
- Certain medications
- Dietary factors
- Viruses and bacteria
- Exposure to UV light
Who is most often affected?
Although lupus can affect anybody, 90% of lupus patients are women. Of these, 90% develop the condition during their reproductive years.
Lupus affects people the world over, although there is a higher incidence in certain regions of the world and in certain ethnic groups. For example, in the United States, African Americans, Latinos and Asians are more commonly affected than Caucasians. Lupus is more common in the Philippines and China than in Japan.
Are all cases of Lupus the same?
There are two main types of lupus:
- Systemic lupus erythematosus (SLE) – almost any organ or system of the body can be affected in this form of lupus. In most patients, only the skin and joints are affected (this is called minor organ threatening lupus). In others, SLE also affects the kidneys, lungs, heart, blood vessels and/or brain (this is major organ-threatening lupus).
- Discoid lupus (also known as chronic cutaneous lupus erythematosus) – usually appears as a red scaly rash on sun-exposed areas such as the face, scalp, arms, legs or trunk. Discoid lupus is generally a milder disease than SLE. It is usually diagnosed by its appearance and by skin biopsy. A small number of people with discoid lupus will develop SLE. However, most patients with discoid lupus have their condition confined to the skin only.
Other milder forms of lupus sometimes occur. In subacute cutaneous lupus, skin rashes, sun sensitivity and joint aches are the main symptoms.
Drug-induced lupus is usually a transient form that develops as a reaction to certain medications. It clears up when the medications are ceased.
The signs and symptoms of Lupus
Lupus is a very variable condition. While it has many characteristic symptoms, most patients will never experience all of them. Similarly, no two patients experience identical symptoms.
The severity of the disease also varies. In some patients symptoms appear suddenly and are relatively severe, while in others the disease remains at a low level for several years before diagnosis. For most patients, however, the frightening descriptions of life-threatening disease in medical textbooks never occur, and the condition remains mild and readily manageable.
Lupus runs an unpredictable course. For some people, symptoms subside after treatment of the initial acute attack. For others, periods of "remission" are punctuated by brief "flare-ups" of disease.
Several symptoms are seen in the initial stages of lupus. These include:
- Fatigue, weakness and lethargy
- Joint pain or swelling (experienced by about half of patients)
- Skin rashes (around one in five patients)
How does Lupus affect the body?
Lupus can affect many parts of the body. The most common symptoms are described below. In addition, most patients feel tired or weak.
Skin Almost any type of skin rash may occur with lupus, affecting around two-thirds of patients. The characteristic lupus "butterfly" rash of the cheeks and nose is seen in about one-third of patients, while one in five patients experience mouth sores. Hives and altered skin colour (a lightening or darkening of the skin in places) can also occur. One-third of patients experience Raynaud’s phenomenon, where their fingers turn white then bluish on exposure to stress, cold or vibration.
Joints Joint pain (also known as arthralgia) and inflammation (arthritis) are common features of lupus. Nine out of 10 patients experience some form of joint pain, most commonly occurring in the hands, wrists and feet. Joint pain - which is often accompanied by stiffness and/or swelling - is most severe in the morning and eases later in the day.
Hair During active disease, significant hair loss, or alopecia, can occur. Usually the loss is only temporary and can be treated with a variety of remedies. Certain lupus medications, such as anti-malarial drugs and corticosteroids, may encourage hair growth.
Tendons When tendons are inflamed, they can tighten, causing fingers to pull into abnormal positions such as "trigger fingers". This is, however, an unusual problem.
Muscles Muscle ache, known technically as myalgia, may occur in up to two-thirds of patients. The muscles between the elbow and neck, the knee and hip are most frequently involved. Muscle inflammation or swelling is less common, but requires treatment, as unlike myalgia, it can lead to permanent muscle weakness.
Lungs A thin lining called the pleura surrounds the lungs. Inflammation of this lining is called pleuritis, a condition that affects around one-half of lupus patients at some stage during their life. This causes chest pain when deep breaths are taken.
Heart Inflammation of the sac surrounding the heart, the pericardium, is called pericarditis and affects about a quarter of those with lupus. The main symptom of pericarditis is chest pain below the breastbone that is often relieved by bending forward.
Kidney A condition called lupus nephritis sometimes develops when the delicate filtering mechanisms of the kidney, the nephrons, become inflamed.
Blood Lupus can affect the cells of the blood system and the components of the system that are involved in blood clotting. The most common complaint is anaemia, or too few red blood cells in the bloodstream. As red blood cells carry oxygen to tissues, patients with anaemia will often feel tired. Drops in the levels of white blood cells (defenders against infection) and platelets (which help the blood to clot) are also seen in some patients.
Immune system A condition known as lymphadenopathy, or swollen lymph nodes (most people know lymph nodes as "glands") can sometimes occur.
Brain and nervous system Inflammation of the blood vessels of the brain can cause a variety of symptoms, including depression, seizures and visual disturbances.
Lupus is not an easy condition to diagnose. Symptoms are often similar to other illnesses and tend to come and go. Diagnosis is usually made on the basis of clinical symptoms and on the presence of certain antibodies in the blood. There are 11 symptoms or signs that help distinguish SLE from other conditions. Four or more of the symptoms described in the table below, not necessarily occurring at the same time, indicate SLE.
Symptoms that indicate SLE
Malar rash Rash over the cheeks
Discoid rash Scaly red or raised rash
Photosensitivity Reaction to sunlight – skin rashes that develop or become worse on exposure to sunlight
Ulcers Nose or mouth ulcers
Arthritis Inflammation of two or more joints, but the inflammation does not damage the joint
Serositis Inflammation of the lining of the heart or lungs
Renal disorder Excess protein or cells in the urine
Neurological disorder Seizures and/or abnormal behaviour when there are no other likely causes
Haematological disorder Lower numbers of red or white blood cells or blood platelets (these disorders are known as anaemia, leukopenia and thrombocytopenia, respectively)
Immunological disorder Testing positive in laboratory tests for one or more antibodies that are distinctive of lupus (eg anti-DNA antibodies, anti-phospholipid antibodies, anti-Sm)
Anti-nuclear antibody Testing positive in laboratory tests for a protein known as the "anti-nuclear antibody", a protein indicative of lupus.
A doctor will carry out a number of laboratory tests to help diagnose lupus. These include blood and urine tests (looking for urinary protein and red blood cells).
In the anti-nuclear antibody (ANA) test a sample of blood is taken and tested to see if it has anti-nuclear antibodies – antibodies that react against the nucleus of human cells.
While a positive ANA test points to lupus (virtually all people with SLE test positive), it is not diagnostic of lupus. A positive ANA test is seen in several other conditions, such as rheumatoid arthritis and some viral diseases. Sometimes even perfectly healthy people will be positive for ANA. If the ANA test is positive, the doctor will take into account whether the patient has other symptoms of lupus before diagnosing the condition. ANA-negative lupus is rare but not unheard of – patients in this situation will usually undergo more tests before their lupus is confirmed.
The anti-deoxyribonucleic acid (DNA) antibody test is similar to the ANA test. In this test, the antibodies tested for are those that react against DNA, the genetic material contained in the nucleus of human cells. It is more specific for lupus than the ANA test, as only rarely do people with other conditions test positive for anti-DNA antibodies. The drawback of this test is that the antibodies are only found in two-thirds of lupus patients.
Further blood tests may be carried out to see whether the levels of complement proteins in the blood are lowered. The presence of anti-Sm (sometimes called the extractable nuclear antigen or ENA) is also diagnostic of lupus.
The aim of treating lupus is to reduce inflammation in tissues and bring under control the abnormalities in the immune system that cause the inflammation. Treatment also enables the patient to live a fuller life. As no two patients are alike, treatment is tailored to the individual, taking account of the severity of the disease and the organs involved. There are four main groups of drugs used to treat lupus.
- Non-steroidal anti-inflammatory drugs
Used for pain relief and inflammatory conditions such as rheumatoid arthritis, NSAIDs are very useful for many lupus patients, Aspirin, ibuprofen and naproxin are examples of commonly used non-steroidal anti-inflammatory drugs (NSAIDs).
These drugs vary in their effectiveness a drug that one patient finds very effective may be of little or no use to another. This means several NSAIDs may have to be tried before a suitable one is found.
NSAIDs are used to relieve the fevers, headaches, muscle aches, malaise and arthritis that can accompany lupus. However, they are not disease-modifying drugs – they will not put lupus into remission or alter the underlying immune process.
The main side effect of NSAIDs is stomach irritation that can lead to ulcers. A new class of medications related to traditional NSAIDs, called COX-2 inhibitors, reduces this particular side effect.
- Anti-malarial drugs
You may well ask what malaria has to do with lupus? Nothing as it happens, except that many years ago it was fortuitously discovered that anti-malarial drugs reduced lupus symptoms in soldiers at war. Since then anti-malarial drugs have been used widely to treat lupus.
These drugs are particularly effective when the skin and joints are involved.
Two anti-malarial drugs are used in Australia to treat lupus – hydroxychloroquine and chloroquine.
Anti-malarial drugs such as hydroxychloroquine help bring lupus under control in many body systems. Skin rashes, mouth ulcers and hair loss improve in the majority of patients. Joint swelling and aching decreases.
Anti-malarial drugs have few side effects, although it may take several weeks before they start working. The most common side effect is nausea.
It is recommended that patients have their eyes examined every six months, as anti-malarial drugs, and in particular chloroquine, sometimes damage the eye.
Corticosteroids are hormones, now produced synthetically, that have very similar effects to the steroids produced by our bodies. At their naturally low levels, they control a number of processes in our body. When used medicinally at higher doses, corticosteroids dampen inflammation and are very effective at relieving the symptoms of active lupus.
The dose of corticosteroids must be regulated to maximise benefit and minimise side effects. For patients with severe disease, they are the drugs of choice and are given at high doses. Moderate doses are taken during severe flare-ups of non-major organ-threatening disease. Patients with chronic, mild lupus receive low doses and are usually switched to another disease-modifying therapy that has fewer side effects.
At moderate to high doses, taken for weeks to months, corticosteroids can cause a variety of unwanted side effects such as heart palpitations, agitation, weight gain, changes in facial appearance, rapid heart rate and sleeplessness. Side effects from long term therapy (over a period of months to years) are more serious and include raised blood pressure, diabetes, increased risk of infection, and osteoporosis. Over time, corticosteroid doses can be reduced, but patients need to be "weaned" off the drug so that their own body can learn to produce the substance again. Prednisolone is an example of a commonly used corticosteroid.
As their name suggests, immunosuppressants suppress or dampen the immune system. In a disease that is caused by an over-active immune system, they are a logical and very effective choice. Commonly used immunosuppressants are cyclophosphamide and methotrexate.
Immunosuppressants can have serious side effects and for this reason they are usually reserved for severe cases of lupus. They are generally used when serious major organ-threatening disease is present and steroids alone are not enough to control the disease. They are also used when patients cannot tolerate high doses of steroids. For this reason, they are often referred to as "steroid-sparing agents", as they spare the patient the potentially toxic effects of long term steroid treatment.
Patients receiving immunosuppressants are monitored closely for such side effects as anaemia, lowered white blood cell counts and hair loss. They are also at an increased risk of infection and possibly cancer.
In this day and age, with early detection and effective treatment the prognosis for lupus patients is not one of doom and gloom. The prognosis depends on a lot of things, and varies from patient to patient.
Most patients with milder forms of lupus can expect to live a normal life span. This includes subacute cutaneous lupus and SLE that is not major organ-threatening. For major organ-threatening lupus, life expectancy depends on the patient’s race, where they live (and whether they have access to good medical care), their age, their genes, and most of all how severe the disease is. Lupus is fatal in only a small percentage of cases.
- Lupus flares
Many patients experience lupus "flares" – periods where the symptoms of lupus return. Unfortunately, there is no way of knowing how long such flares will last or how severe they will be.
What triggers these flares is not entirely clear, and probably differs from person to person. Almost universally, however, emotional and lifestyle-related stresses are found to have at least some role in lupus flares. Sunlight, an infection, certain medications or even pregnancy may cause disease flares in some people. During these times it is particularly important that patients take good care of themselves.
- Lupus and pregnancy
As most women affected by lupus are of child-bearing age, it is natural that they will question whether they can become pregnant and successfully give birth to a healthy baby. The good news is that in the majority of cases, there is no reason why a woman with lupus cannot have children.
Before considering pregnancy it is important that patients talk to their doctor and are informed of any potential risks for themselves and the baby. It is preferable for lupus to be in remission and to ensure that any medication being taken will not adversely affect the pregnancy.
Lupus does not usually lower fertility, but sometimes women with lupus may have an antibody in their blood that increases the risk of miscarriage. Any woman with a history of more than two unexplained miscarriages should be tested for this antibody (the "anticardiolipin antibody"), as treatments to enable a successful pregnancy are available.
Q & A
Will lupus flare up during pregnancy or after the birth? Whether or not lupus will flare up during pregnancy cannot be predicted. However, lupus flares during pregnancy are far less likely if the illness has been quiet for the six months leading up to conception. If it does flare, it is likely to be mild and in the first trimester. After this, the foetus begins to produce hormones of its own that can help to keep the mother’s disease under control.
In the first weeks after birth new mothers may experience lupus flares but this can be controlled with corticosteroids.
Will lupus medications harm the foetus? Many medications are harmful to a developing foetus. Corticosteroids, however, are safe medications to use during pregnancy.
Will the baby be affected by lupus? A very small number of babies are born with what is known as "neonatal lupus". This is a type of lupus that is only seen when they are first born and does not persist past infancy. Whether or not a baby will develop this condition depends on whether the mother has certain antibodies in her bloodstream – if she does not, there is no risk. If she does, the risk is low but she will need to be monitored more closely during the pregnancy. In most babies neonatal lupus will clear up independently but in some it will require medical intervention.
Can babies be breast-fed? Babies can be breast-fed, although it is advisable to switch to formula three months after the birth. A breast-feeding mother cannot take most lupus medications because of the possibility they may harm the baby. The longer she breast-feeds the longer she is at risk of experiencing a disease flare.
Are my children at increased risk of lupus? While genetic factors play a role in increasing the risk of developing lupus, this illness is only "passed on" to 5-10% of successive generations. This highlights the fact that while genes are important, they do not fully explain why lupus appears in a certain individual and whether or not your children will develop lupus.
Lupus in different groups
Although lupus is most common in young women, it is not unheard of in children. Most children are diagnosed around puberty, although there are rare cases in children younger than 5 years.
Symptoms in childhood lupus are very similar to adult lupus although they are usually more serious. For this reason, children are generally given more aggressive treatment that aims to control the disease before it involves major organs.
Lupus is much more rare in men than women (occurring at a rate of approximately one man for every nine women) but does occur. Unlike women, who tend to develop the disease between the ages of 15 and 45 years, there is no distinct "risk period" where men are more likely to present with lupus. Men tend to experience slightly different symptoms that are often more severe than in women.
Older age groups
Few people develop lupus in old age and it is generally a much milder disease. Those who have had lupus for some time will usually find that their lupus calms down, with only a few symptoms such as photosensitivity and joint pain persisting.
Tips for living with lupus - Help yourself to a full life
Just because you have lupus does not mean you should stop living your life. Do your best to remain on top of the disease – a bit of careful planning and thought will go a long way.
Some tips for staying on top of lupus:
Make sure you get plenty of rest.
Make an effort to do some exercise this will help prevent muscle weakness and fatigue – but don’t overdo it.
Listen to your body if you feel fatigued, take a rest. This may mean taking daytime naps or restructuring your schedule.
Try to avoid becoming anxious or stressed, if you can’t avoid stressful situations, learn how to de-stress. Try yoga, meditation, walking, a relaxing bath or talk to your family, friends or support group about your anxiety.
Remember the sun can trigger flare-ups avoid excessive exposure to the sun and always cover up. Use maximum strength sunblock that protects against UVA and UVB rays
Avoid contact with people who have an infection potential sources of infection such as large crowds (buses, trains and concerts), children and babies.
Find out as much about lupus as you can this will help take away the fear of the unknown
Eat well from each food group if you are on a special diet, make sure you stick to it. Your doctor is trying to help you – so follow his or her instructions and advice.
Keep a list of your symptoms and any questions you might have for your doctor.
Always keep a record of your medications. inform your doctor regularly
Always take your medications as you have been instructed.
Visit your doctor regularly particularly if you feel as though the disease may be flaring up.
Certain things can trigger lupus see if you can work out common triggers for your symptoms. That way you can avoid them next time.
Do not smoking smoking will lower your health so try to quit
Do not over-exert yourself physically or emotionally.
You are not alone there are many other people in your situation. A support group is only a phone call away.
Commonly asked questions
Q & A
Why me? It is a good question and one that many people will ask. The short answer is – we don’t know. Scientists are working hard to find out why some people develop lupus while others do not. The answer may be the key to warding off the disease before it takes hold.
Is lupus genetic? There is good evidence that genetics play a role in deciding who will develop lupus. But just how large a role that is differs from person to person. Some people are more susceptible, genetically, to developing the disease. Whether or not they actually develop lupus may depend on their lifestyle or which viruses or medications they come into contact with.
Can other people ‘catch’ my lupus? Lupus is NOT infectious. There is no need for you to quarantine yourself.
Can I take oral contraceptives (the pill)? You will need to discuss this with your doctor, but in many women with lupus, oral contraceptives can be used without problems.
Do certain things trigger lupus flares? While there are no universally accepted triggers, you may find that sun exposure, certain foods, medications or activities affect your condition. Emotional stress is commonly implicated in lupus flares. It may be useful to keep a note of the things you did or ate prior to a lupus flare – this may help you to identify any triggers.
Am I going to have lupus for life? At present there is no "cure" for lupus, but there is effective medication that will bring the disease under control – often permanently. As you grow older, it is likely that the disease will settle down.
Is there a special diet I should follow? No, but you should eat a healthy, nutritious and well-balanced diet and try to maintain ideal body weight. If you know that a particular food triggers your lupus, it is obviously wise to avoid it.
Where can I go for further information and support
If you have any questions about lupus or your medication, you should ask your doctor. In addition, there are a number of lupus associations and support groups across Australia that can provide invaluable help to lupus patients.
These organisations provide support and information to patients and their families, as well as promote understanding and awareness of the condition in the community. Further research and development in lupus and its treatment is funded by the efforts of these organisations.
The history of Lupus
- Lupus through the ages
Lupus was first described way back in the time of Hippocrates in Ancient Greece.
- The history of lupus
"Lupus" means "wolf" in Latin. There are at least two explanations why the word "lupus" was chosen to describe the disease we now know as systemic lupus erythematosus.
One explanation is that lupus was so named because the common butterfly rash seen on the cheeks and nose of many lupus patients is similar to the facial markings of a wolf. An alternative explanation relates to the early use of the word "lupus" to describe skin ulcers. In the sixteenth century, certain skin ulcers were compared to a hungry wolf eating the sufferer’s flesh.
In the 1800s doctors named another disease involving skin lesions "lupus erythematosus". These lesions were not ulcers but rather were red regions where the skin was thinner than normal.
When doctors discovered that a bacterium was responsible for many of the skin ulcers that were called lupus and that these ulcers cleared up with antibiotic treatment, they realised that lupus erythematosus was a separate condition. It was not until 1872 that doctors realised lupus erythematosus affected parts of the body other than the skin. The condition was given the name lupus erythematosus disseminatus, and the first of the symptoms were documented.
Proudly sponsored by an educational grant from Sanofi-Synthelabo
Friday, September 14, 2012
The benefits of dandelion, the common weed known as Taraxacum officinale, are wide. From the prevention of breast cancer to the help of eczema-like skin problems, this common weed is a miracle plant that shouldn't be ignored.
Dandelions pop up in lawns and fields throughout the world. They are everywhere! Children the world round have spent many an hour blowing the seed heads and counting the puffs to determine the time. However, due to its medicinal properties the dandelion is not seen as a weed to get rid of but rather a herb to cultivate. It is cultivated in China, France and Germany.
Dandelions are interesting plants. Their yellow flowers close up tight when rain is soon to fall and there are a number of variations in leaf characteristics. Some are darker green and slightly furry, with rounded serrations, some are brilliant green, less hardy in hot weather, with sharply-indented longer leaves, but all have the same medicinal value.
In Italy and other European countries well know the benefits of dandelions, and you will see women bent in the fields in spring picking the tender dandelions for salads. And for those growing this herb for herbal medicines the plant is harvested for dandelion tea and tinctures in the early summer before the plant blooms.
Dandelion leaves are used as a powerful diuretic. The root is also used, and usually harvested after 2 years of growth. The root is a blood purifier and helps both the kidneys and the liver to remove poisons from the system. For centuries, dandelion root has been used to treat jaundice.
The common dandelion contains a number of vitamins and minerals essential for maintaining good health. They contain calcium salts, manganese, sodium, sulphur, vitamins A, B, C, D, and that necessary liver-regulating substance, choline.
Benefits of Dandelion and Anemia
Dandelions are a rich source of iron and vitamins, and when compared to carrots, has more carotene than carrots when comparing portions. Dandelions also contain high levels of potassium. For generations, herbalists have used dandelion root to treat anemia to as it has a high iron and zinc content and is rich in vitamins.
Benefits of Dandelion and Bladder Infections and Premenstrual Syndrom (PMS)
Dandelion is a very different diuretic. Most diuretics cause a loss of potassium. Dandelion leaves, however, are rich in potassium therefore, when using dandelion as a diuretic this results in a net gain of this vital mineral. Because of its high potassium levels, dandelion also alleviates leg cramps and muscle spasms. Due to its diuretic properties dandelion helps to relieve fluid retension in premenstrual syndrom (PMS) and counteracts urine retention in bladder infections.
Benefits of Dandelion for Constipation, Hemorrhoids, and Indigestion
Dandelion root is used as a liver cleanser as it stimulates the production of bile which in turn transports potentially noxious compounds to the stool. The increase of bile aids in the relief of constipation without causing diarrhea, and in turn helps with hemorrhoids. If you have gallstones it is advisable not to take dandelion as the increase of bile flow could increase pressure against the stones.
Benefits of Dandelion for Irritable Bowel Syndrome (IBS)
Using dandelion along with 4 other herbs in combination were found in a Bulgarian study to help 95% of the sufferers with the relief of IBS after just 15 days of treatment.
Benefits of Dandelion for Osteoporosis
Dandelion is a rich source of boron, which helps to raise the estrogen levels in the blood, and in turn helps to preserve bone. It is also a rich source of calcium and a fair source of silicon, which some studies suggest helps strengthen bone.
Benefits of Dandelion for Losing Weight
European herbalists frequently suggest dandelion tinctures for losing weight. Many people look fatter than they are through water-retention. As dandelion root is a diuretic is reduces water weight. As it cleanses the liver and stimulates the rate of bile flow, it also helps to improve the fat metabolism in the body.
Benefits of Dandelion and Dandelion Coffee
Dandelion coffee is made from the roots of the plant. They are dug up in the second year of growth, and roasted.
Dig up the whole plant in the autumn. Cut off the leaves, and use in salads, or put through the juicer, or add to the compost heap where they are always very welcome. Then wash and dry the large tap roots (rubbing off the small hair rootlets), and dry in a cool oven till quite brittle. Roast them to a light brown when needed and grind as coffee.
One or two teaspoons brews a cup of a very pleasant tasting dandelion coffee.
Dandelion beer is another option. Pull up one pound weight of leaves and tap roots of the dandelions. Wash well, add rind and juice of 2 lemons, then add 2 gallons of water. Boil for 15 minutes. Strain the liquid over 2 lb raw sugar, add 2 oz cream of tartar, and half an envelope of lager yeast. (You can use 3/4 fresh yeast cake but the taste is not as good. ) Let the liquid stand in stainless steel or ceramic bowls for 3 days, covering lightly. Never use aluminum vessels for making herb beers.
Bottle in brown or dark green bottles, cork well and it will be ready to drink in a week. However, it tastes better after leaving it for two. It has a bitter taste to it, but it is very refreshing on a hot summer's day, and also very good for you in the process.
Use Dandelion with Care
If you are thinking about cultivating dandelions be careful where you grow them. Dandelions expel ethylene gas. As ethylene inhibits the growth and height of nearby growing plants, you will need to place your dandelions well away from the other plants you are cultivating.
However, you can also use this to your advantage. As ethylene is also used extensively in the artificial ripening of fruit, planting dandelions in your orchard will help aid in the early ripening of your fruit crop.
Although it is obvious that there are lots of benefits of dandelion use there are also some precautions to take.
Dandelion may increase stomach acidity and ulcer pain. If you have gallstones or biliary tract obstructions, you should not take this herb. People with known allergies to yarrow and chamomile should use dandelion with caution.
Never use dandelion as a substitute for pharmaceutical drugs for hypertension. If you are taking diuretic drugs, insulin, or medications that reduce blood-sugar levels, you should use dandelion only under a physician's supervision.
Hugs and Blessings Jayde
Friday, August 17, 2012
It is believed that lupus affects people between the ages of 18 and 35 onwards, however children can also be a victim of this disease..
THE FOLLOWING IS A MEDICAL GUIDE ABOUT CHILDHOOD LUPUS....
THERE IS A LOT OF INFORMATION ON ADULT LUPUS, BUT NOT SO MUCH ABOUT CHILDHOOD FORM...............
I WAS BORN WITH LUPUS BUT IT IS NOT VERY COMMON TO BE BORN WITH THE DISEASE... USUALLY IT IS ONSET IN THE LATTER TEENS......
Thomas J. A. Lehman M.D., F.A.A.P., F.A.C.R.
Chief, Division of Pediatric Rheumatology,
Hospital for Special Surgery, New York
Professor of Pediatrics,
Weill Medical College of Cornell University
Caring for a child with lupus is one of the greatest challenges a family can face. After the diagnosis, the first step for every parent is to learn as much as possible about the disease and the special needs of a child with lupus.
Parents will need to educate the child with lupus and their other children as well as their child's teachers, and family friends. This article will address some of the medical considerations of which the family must be aware. It also will address the social and psychological concerns which can have a major impact on the outcome for children with lupus and their families.
Is lupus the same in children and adults?
At one time lupus was thought to be more severe in children than in adults, but most physicians no longer believe this. It is true that children diagnosed with lupus often have been ill for a longer period and are more likely to have significant internal organ involvement, than most adults with lupus. This may be because many children are not recognized as having early lupus until the disease has become worse. As a result children with lupus often are required to begin aggressive therapy soon after diagnosis.
The first step for every family is to be sure the diagnosis is correct. Lupus is a highly variable disease.
* Some children have obvious disease symptoms with fever, rash, and kidney involvement.
* Others may only complain of not feeling well, being tired, and weight loss.
* Some children may look fine, but may have blood in their urine or other unseen problems that require additional tests that will help the physician to make the diagnosis.
* Although a positive ANA is generally required to make the diagnosis, there are many children with positive ANAs who do not have lupus.
If you have questions about your child's diagnosis you can contact the Lupus Foundation of America (LFA) for a list of chapters with experienced doctors in your area.
Once the diagnosis is established, parents are immediately concerned about what will happen to their child. While lupus can be a severe and life-threatening disease, many children with lupus will do very well.
The prognosis of lupus in childhood depends on the severity of the internal organ involvement:
* Children with significant kidney or other internal organ disease require aggressive treatment.
* Children with mild rash and arthritis may be easily controlled.
However, lupus is unpredictable and no one will be able to predict with certainty the long-term outcome for a specific child. Success in every endeavor is a combination of hard work and good luck. None of us can control good luck. This article is intended to help you get the best outcome for your child by explaining to you the importance and nature of the hard work.
Following doctor's orders
Compliance with physician instructions has been shown to be one of the most important factors in determining outcome for people with SLE .
Research suggests the severity of a child's lupus is determined by many factors which science has not been able to control. However, some very important aspects of treatment that require special attention can make a difference in the outcome of this diseasefor example:
* taking medications as directed
* having blood or urine tests when requested
* keeping scheduled doctor appointments
* following instructions about avoiding too much sun.
Children have special needs
It is important that those caring for the child, i.e., parents and medical professionals, understand these needs. Very important factors in the successful treatment of this disease include:
* The parents' understanding about lupus
* The reasons for the prescribed medications
* The expected outcomes
* Any problems to be aware of.
Everybody with lupus is different
Much of the information and advice for children with lupus is the same as given to adults. You are encouraged to read the other pamphlets available from the Lupus Foundation of America for this information. This article emphasizes only those aspects of lupus and its treatment which are peculiar to children and young adults.
Treatment for childhood lupus is dependent on the degree of severity of the disease. The most important subject for parents of children with lupus is dealing with the side effects of these drugs.
Corticosteroids (e.g. prednisone)
Many children with lupus require dosages of corticosteroids that produce side effects. The most obvious changes that occur are:
* weight gain
* a Cushingoid (rounded, puffy face) appearance
* unwanted hair growth
* stretch marks
These changes are easily visible to other children and may upset you and your child. Over time corticosteroids can cause other more serious problems:
* weak bones
* poor growth in height
* atherosclerosis (fatty deposits in blood vessels that can affect blood flow)
No one wants your child to have these side effects. Side effects can be minimized by keeping the dosage as low as possible, while still maintaining effective control of the disease.
Cytotoxic drugs are one alternative to high doses of corticosteroids. These drugs allow a dramatic reduction in the corticosteroid dosage, often to a level without obvious or severe side effects. This is often a major medical and psychological benefit to children.
However, cytotoxic immunosuppressants carry several risks.
* Short term, cytotoxic drugs carry the risk of damage to the bone marrow that can cause bleeding or make the child unable to fight off an infection. Careful monitoring usually reduces these risks.
* Cytotoxic drugs may increase a child's risk of developing certain forms of cancer.
* There is also evidence that cytotoxic drugs may interfere with the ability to have children in the future.
These are scary problems. Doctors must balance the risk of these future problems against the benefits of better control of the lupus and less corticosteroids. These are complicated decisions no one is happy facing. However, many more people are greatly helped than hurt by these drugs. There is additional important information about immunosuppressive drugs in other pamphlets from the Lupus Foundation of America.
Due to fear and frustrations, parents may turn to other treatments, such as herbal "remedies" or "miracle cures." However, these alternative methods of treatment have not been properly studied for their effects on the human body. They must be subjected to rigorous research studies before they are used, so children are not put in jeopardy. Everyone caring for people with lupus is committed to finding better alternatives to current therapies.
Behavior and responsibility
One of the most difficult problems for every parent is how to let their children "grow up" without letting them take unnecessary risks. This is even harder for parents of children with lupus. The key concept must be, "as normal as possible." Every decision you face with your child (school trip permissions, friends, a sleep over, etc.), ask yourself, would you let them go if they didn't have lupus?
The only big exception is exposure to excessive sunlight, which is known in some instances to make lupus worse. A child with lupus may not be able to go to the beach for the day, or sit out in the sun by the pool. If you are unsure, ask your physician.
Special steps parents should take
If your child is participating in short activities, e.g. visiting friends or going to a movie, usually no special arrangements are necessary.
For longer activities, where a child may be away overnight, the situation can be more complicated.
* If they are old enough you can simply send them with their medications.
* In general, children over the age of 10 should know their medications and when to take them.
* If the child is under age 10, be sure there is a reliable chaperone who can take responsibility for the medication and its administration.
* No matter where your child goes, it is important that they carry your doctor's emergency phone number where someone will find it easily if the child is injured or becomes ill.
* For longer trips you should also make sure the chaperone has your doctor's emergency phone number.
* A "medic alert" bracelet should be considered for any child or teenager who is on chronic corticosteroid therapy.
* Some children resent wearing a bracelet, but it can be worn around the neck or even on an ankle, where it is less obvious.
* Unpredictable events do occur, and these "alert tags" provide crucial information and can speed appropriate treatment when a child doesn't know or can't give the necessary information.
* If your teenager resents these as an "emblem" of the disease, let them pick the style and color. Remind them that lots of adults wear such bracelets.
* If necessary you may choose to compromise on a wallet card with their diagnosis and emergency contact information.
Educating your child
The feeling of being overwhelmed can be a very real feeling for parent and child. However, educating yourself and your child can help to alleviate some of the worries and concerns.
How to approach your child is dependent on your child's age. Of course no two children are the same, but these general guidelines can help.
1. For children younger than age 10, excessive explanations aren't very helpful.
* During this period children rely on their parents to "fix everything" and have little sense of responsibility.
* While your child should know that they have lupus, you don't have to spend a lot of time trying to explain it all.
* They will need to understand that lupus is a disease, and that it's not their fault they have it.
* They need to know they didn't get lupus from doing something wrong, that it is not something they caught from someone, and that they cannot give lupus to anyone else.
2. It is important that your child understands the need to take medicine.
* For older children you can begin to explain the names of the medicines and the doses.
* For smaller children this isn't helpful. Sometimes well-intentioned parents go to great lengths to explain every detail to their children as if they were small adults. Under the age of 10 this information is often misunderstood and despite the best intentions it may do more harm than good.
3. For children 10 and older it is important to begin explaining the nature of lupus.
* The transition from a small child who must simply do what they are told, to a mature self-reliant adult, may be a difficult one under the best circumstances. Thus it is important that children with lupus must be allowed to assume a progressively greater role in taking their medications and making choices about their care.
In addition to coping with your feelings and those of your spouse, and your child, you will rapidly become aware that you have to:
1. Educate the school faculty and leaders of organized activities in which your child participates. On behalf of your child, you will have to explain: * absences for doctor's visits
* changed appearance
* restrictions in activities.
* Your doctor and the local Lupus Foundation of America chapter office can be very helpful in this regard.
2. You may also wish to educate your neighbors and friends. Not everyone will be aware of what lupus is or how a person gets lupus. You may help them understand that it is not contagious, and that a person who has lupus is genetically predisposed.
* Sometimes this can be done by sharing information available in pamphlets supplied through the Lupus Foundation of America, or by writing the LFA and requesting information about the disease.
3. Lupus support groups are a good way to help the parent and child meet other children who have lupus, as well as their families, to learn more about their disease and explore ways to cope.
You can ask your doctor or the LFA for assistance in answering additional questions.
Is your child angry?
It is important to recognize that your child will have days when they are upset about having lupus- just as you are upset that they have it! They will be upset about the side effects of their medications and upset about the limitations placed on them because they have lupus. The fact that it's no one's fault doesn't make it better.
You must treat your child just like you would if they were angry about something else. Occasional problems are normal. If the problems become prolonged you may need professional help. No one has a single solution that will work for everyone.
Is your child depressed?
There is a whole pamphlet dedicated to depression in lupus provided by the Lupus Foundation of America. It is very important that parents be aware of this problem. Children who become depressed about having lupus may stop taking their medication without telling their parents. This can be disastrous.
* Watch the medicine bottles.
* Are they getting empty?
* Do you need refills as often as you used to?
* Even if you are the one administering the medication everyday, stop sometimes to watch and make sure the pills are being swallowed, not spit out when you turn around.
* You might be complying with the all the doctor's advice while your child is not.
* If you discover that your child hasn't been taking their medication, talk about it with them, and be sure to let your doctor know.
No one likes being sick!
It is important to remember that most children hate being sick. Often this hatred will be expressed as:
* hatred of the pills
* hatred of the blood tests
* hatred of the doctor's visits
* hatred of advice from parents
Frequently this can be dealt with by reasoned discussion and making sure the child knows why they have to do unpleasant things. Few children in the pre-teen and early teenage group realize their actions may have permanent consequences-that if they do the wrong thing they can't simply "be forgiven and start over." At some point they need to understand that doing the wrong thing could make them very sick.
If you and your child can't work it out, get help
Don't be afraid to ask your doctor for help if you are having trouble getting through to your child. Some children require psychological intervention. Improperly dealt with, a child or young adult's resentment about having lupus may result in risky behavior that could affect their well-being.
Not only does having lupus cause psychological problems, but lupus itself may cause problems with thinking. Sometimes what a child who is refusing their medicine needs is more medicine. It is important to understand the psychological problems, as well as the effects that lupus can have on cognitive (thinking) impairment.
Asking, "What if?"
Even children who appear to be doing well with their lupus can have questions they may be afraid to ask. In the middle and late teenage years, "children" are beginning to think about their life as adults. Children with lupus will wonder:
* Am I going to be able to get married?
* Will I be able to have kids?
* Will I be able to earn a living?
The answer should always be that you expect them to lead productive lives. Since most children with lupus will live well into adulthood, it is important to make sure they understand the importance of doing all the things that can medically help them achieve this goal.
Could anyone else in my family develop lupus?
Studies have shown that close relatives of adults and children with lupus are more likely to get lupus than are individuals randomly selected in the general population. However, the risk is still very small (about 1/50).
As many as one-third of the sisters of a child with SLE may be ANA positive. Physicians have now had the opportunity to follow groups of sisters for many years. Roughly one in 10 have gone on to develop SLE over a 10-year period. However, this also means that nine out of 10 did not.
If one of your other children has symptoms which make you think they might have lupus, have them evaluated by your physician.
There is no specific test for lupus
Remember, a positive ANA does not make the diagnosis of lupus. In the absence of symptoms sufficient to warrant treatment with prednisone, it is appropriate just to carefully monitor the ANA-positive sibling and/or mother of a child with lupus.
One special situation is when a relative of a child with SLE is placed on one of the drugs associated with drug-induced SLE. Often this can be done safely, but these relatives may develop lupus-like symptoms when placed on certain anti-seizure drugs and anti-tubercular drugs.
Lupus: a combination of genetics and environment
Family studies of children with SLE also have shown an increased frequency of serologic abnormalities in the mothers. Because usually these are healthy mothers without evidence of disease, this was surprising. This finding strongly supports the hypothesis that SLE results from the combination of a genetic predisposition and an environmental exposure.
Serologic abnormalities in the fathers were much less common, but that doesn't mean they don't contribute to the genetics of SLE. It only suggests that expression of those genetics as a serologic abnormality may be influenced by sex hormones.