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