| Updated: 10/20/04 |
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| CFS MANAGEMENT |
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| Since there are no known and proven cause(s) for CFS nor proven treatments or cures, this may be the most important section of this website. We have tried to incorporate everything of importance on living with chronic illness. If we have missed something useful or important, please let us know as soon as possible. 8 VICIOUS CYCLES THAT BLOCK CFS HEALING In our research, we ran across this concept by Dr. R. Podell. He states that there are 8 cycles (problems) that you have to manage if you are going to have a reasonable lifestyle. Cycle #1: NON-RESTORATIVE SLEEP. People with CFS usually have some form of sleep problem(s) that worsens physical and mental stamina. He says that sleep problems increase sensitivity to pain. Cycle #2: DISORDERED BREATHING RHYTHMS. He says that more than 50% of PWCs develop a disordered pattern of breathing. They usually take small rapid breaths that only use the small muscles of the chest instead of slow, deep breathing that uses the large muscles of the abdomen, sometimes going far enough to hyperventilate. Shallow breathing makes people feel tense; where as, slow, deep breathing creates feelings of calmness. Cycle #3: INACTIVITY LEADS TO PROGRESSIVE LOSS OF PHYSICAL FITNESS (DE-CONDITIONING). When I had my heart attack, 3 weeks in ICU/CCU made me so weak that I could barely sit up in a chair for more than a couple of minutes. It took a long time for me to get enough physical strength to even function period. A body that is active allows its entire function to improve; such as, improved blood flow. Blood is needed to cleanse the liver, improve digestion, reduce physical stress from functioning at reasonable levels, et al. Cycle #4: MAGNESIUM LOSS IN THE URINE. This is something we don't normally think about. However, low magnesium increases pain and vulnerability to stress. Cycle #5: HORMONAL IMBALANCES. Physical and mental distress trigger the release of hormones as well as other hormone disruptions. Cortisol, that can promote tissue breakdown, depresses the output of other hormones that promote growth, thyroid, and sexual hormones. Cycle #6: BLOOD SUGAR INSTABILITY. The adverse effects of the previous cycles mentioned above play havoc on blood sugar and insulin systems. A rapid decrease in blood sugar causes stress hormones to surge, including adrenalin and cortisol. Other symptoms of hypoglycemia include mood instability, depression, light-headiness, foggy brain, fluid retention, and fatigue. Cycle #7: MIND/BODY TENSION. Long term illness and felling badly tightens up muscle tension and increases pain and stiffness. Mental tension often creates feelings of anxiety and a sense of not being in control-all of which continues to cycle. Cycle #8: LOSING PERSPECTIVE, LOSING HOPE: Long term illnesses tend to make us frustrated that we will never get well again. We lose optimism and sense of perspective and proportion, making small setbacks look like catastrophes that often make us angry which further suppresses immune function. It becomes a heavy burden for us and the people around us which is usually our loving family. The cycles continue. I would like to add a cycle #9: INACTIVITY PLUS THE CYCLES ABOVE INCREASE OUR CHOLESTEROL AND AFFECT A HEALTHY HEART. You may not notice it if you have not had a heart attack I have had blood work weekly, monthly, bi-monthy, etc. I can see that my cholesterol goes up and down depending on how I feel and the activity level I'm able to maintain. Activity increases your HDL (good cholesterol) and lowers your LDL (bad). I am totally convinced that my inactivity and poor eating habits because of the lack of sleep played a major role in my class 4 heart attack which almost killed me. Remember, if you die of a heart attack, you do not die from CFS. In our research, we have seen too many things that make CFS/CFIDS destructive and maybe deadly. DO NOT TAKE THIS ILLNESS TOO LIGHTLY. LIFESTYLE CHANGES: You are ill, whether you want to admit it to yourself or not, or others believe you or not. You will have to change your lifestyle and live within your reduced abilities. If nothing else, the "8 vicious cycles" above should convince you of the need to change your lifestyle. Pare down your schedule, reduce stress, lower your expectations, schedule your day (week, month) carefully, eat right, rest to recharge your batteries, take time off, but don’t avoid exercise or activity. This section will assist you in making your lifestyle changes. Prioritize the aspects of your life, and never forget the important ones . UNDERSTANDING HOMEOSTASIS: SELF-HEALING: At the moment, we know very little about Homeostasis and request that anyone with better knowledge of this let us know. However, from what little we know, the underlying basis is something we should always remember with chronic illnesses: It is absolutely vital for everyone afflicted with a chronic illness to hold onto the fact that their body is a self-healing mechanism. Broken bones mend; cuts heal; and most health disturbances, from infections to digestive disorders, get better with or without treatment. The natural balance or nature of our bodies is to be healthy. The body helps chronic illness to fight its way back to health, Despite what we are going through (the illness, fatigue, pain, etc.), our bodies are trying to make us well. We need the positive attitude that indicates that we know that we will get better. And, our bodies are self-healing mechanisms assisting us to reach our goal of health again. We must help ourselves and our bodies to do their job. CFS MANAGEMENT REQUIRES US TO LISTEN TO AND HEED WHAT OUR BODIES ARE TELLING US. PERSONAL JOURNALS: Every person with CFS should (MUST) keep a daily journal. Get notebooks to keep a record, every day that you can, of such observations as how you feel, what you do, what you take, and what seems to make you feel better or worse. The things that you do or take that make you feel worse (more CFIDSy) are called TRIGGERS. Triggers are mentioned in several sections of this site. The fact is that the things that you do to make yourself feel better or worse are extremely important to know and to try to understand. A good journal should give you information which you can use to determine your capabilities, endurance, value of treatment, etc., not only for now , but also to be used in the future, to manage and treat your CFS to the best of your ability. Use it to discuss treatments and health levels with your doctor or caregiver. Keep track of any changes in activity, medications and/or treatments to determine their benefits or the lack thereof. When you analyze your illness and your activities, remember the day after the day after effect. That is, if we over-do today, we probably will suffer the worst effects for 2 to 3 days afterward. This means that you regulate what you do, not that you do nothing. Remember that since your journal is private, it is a great place to vent your anger and frustration. We all go through stages of both. It is also a good place to get them down and organized so that you can discuss them with someone who may be of help – sometimes just a good listener. It is also a good place to list what you were able to do and count your blessings. In other words, get things in proper perspective. GET A GOOD PHYSICIAN: If you do not currently have a doctor who understands you and CFS, try to find a new doctor who will work for you and with you. There are still too many doctors who think CFS is in your head or have a limited knowledge of CFS. Some doctors have told us “I don’t believe in CFS”. We need physicians who will work with us and understand what we are going through and try to help us. For instance, we all suffer from pain and need something better than an aspirin. We need doctors who will do their own research on CFS to help not only us, but all of their patients. You can help your doctor to learn and understand CFS better by having your doctor look at this website or take special articles or printouts, especially the ones that apply directly to your present condition. Because CFS symptoms change and can often mask other problems, a good physician should continually be on the lookout for other medical problems. Local support groups usually have a list of doctors. If you are unaware of a support, go to a good search engine and type in "CFS support groups". ACTIVITY: Like the “sands through the hour glass”, people with CFS only have so much energy and strength. We must use our energy wisely, learning what we can and cannot do without triggering a setback and feeling worse. (Keep in mind that the amount that you can do is not always the same from time to time.) Give the “hour glass” sufficient time to refill by allowing yourself to recuperate. Use your journal to determine your limitations, which can vary from day to day. Remember, with CFS, if you over-do today, you will pay for it tomorrow or sometime in the future. Therefore, it is extremely important to “manage” everything you do, leaving sufficient time for resting and recuperation. In other words, pare down your schedule to a pace that you can live with. Lower your expectations to a reasonable level for the number of errands you can run, chores, and goals. But, you must keep your mind active in a positive way to help with “brain fog” and concentration. We find reading, crossword puzzles and computer games to be a great help in working our minds. Again, don’t forget to prioritize the important things in your life, especially your spouse, children, family, and friends. You need their support, and they need to know they are important to you also. AVOID AND MANAGE STRESS: The number one “killer” or trigger is physical and/or emotional stress. Stress somehow contributed to the cause of our CFS, as we confirm almost daily, and many doctors feel stress is the cause of CFS. It can make you feel worse or even totally ill within minutes, depending upon the degree of stress and how well you can manage it. Learn and use emotional and physical stress management. Obviously, try to avoid stressful situations or manage the stress as well as you can. If you have problems managing stress, get a prescription for a mild tranquilizer from your doctor to use only when you begin to feel the effects of a stressful situation. Valerian is a very mild tranquilizing herb that you can also take if your doctor agrees. There are many consultants, books, articles and websites on stress management and these are good sources for methods of handling our severe stress problems. The following is a simple way to manage stress: Your life is getting out of control! Don’t panic! Instead of thinking that you have to rearrange your life in one fell swoop, take 20 minutes to get a grip on your stress. 1. Take deep breaths for a few moments and allow yourself to calm down. 2. Reach for protein or something healthful, rather than junk food. 3. Write down what you need to do. Write in your journal. Get your priorities straight. 4. Just get out and walk. A walk of 5 to 10 minutes with your mind concentrated on your stride and rhythmic breathing will reduce a lot of stress. Or, just step outside for a few moments and breathe deeply and slowly. If necessary, check with hospitals or other community health groups to find a class in Stress Management or even try yoga which is supposed to be very good for stress. DEPRESSION: DEPRESSION DOES NOT CAUSE CFS/CFIDS. I know that most of us are very tired of hearing this. However, many of us do get “depressed” now and then because of the frustration of this dreadful disease. There is a difference between depression and frustration. Prozac and Zoloft are the current favorites for true depression. (Some doctors will prescribe these as a “cure” for CFS. It isn’ t!) Depression is not something you recover from overnight. You will need to be on medication for some period of time, and you will need to develop a positive attitude. Talk with your doctor about how long you may need the medication and about stopping or reducing this or any other medication. Keep in mind that we all get “frustrated”, especially with CFS. This does not necessarily mean that you are clinically depressed. Take that break mentioned above and be thankful for what you can do, rather than being frustrated with those things you cannot do at the moment. DIETS: A key element of CFS management is maintaining a good, balanced, healthy diet, supplemented with a reasonable regimen of herbs and vitamins to help maintain the best overall physical health. However, diet is a big problem for us in many ways, and it needs to be monitored regularly to make sure we are getting the best nutritional health we can. Food allergies and/or chemical allergies are a major problem to many people and may give symptoms of CFS. If there is any chance that allergies could be a problem, please make sure you check it out with your doctor who might run tests and recommend a treatment for you. Another problem we have is that we often feel so bad and weak that we “know” if we just eat something we will feel better. For most of us, this means we “snack” on foods that are’t really good for us and that hinders getting proper nutrition. Other times, our energy level is so low that we just don’t have the strength or energy to fix or even eat a proper meal. Learn to prepare meals with extra servings, which can be reheated later. Excess weight aggravates CFS just as it does any other illness, especially muscle and joint pain and weakness. When we are not active, we burn and need fewer calories, making it easy to pick up extra weight. A prudent diet is recommended: carbohydrate based rice, potato or pasta, fresh fruit, vegetables, light meals, and a heart healthy low fat/ low cholesterol diet. Some people feel better if they avoid sugar, caffeine, alcohol, artificial sweeteners, and tobacco. Eating healthily is not really that difficult, especially with all the low fat/low cholesterol products that are available today. Low fat does not mean low calorie. Be label readers and watch “serving amounts”. If you are into the “low-carb” diet, be sure that you get proper nutrients. DRUG DOSAGE: A major concern with people with a chronic illness, such as CFS, is the way the body reacts to various medications. This can be another reason why certain medications help some people and not others. CFS magnifies our own normal problems such as allergies or even catching a “simple cold”. It has been demonstrated that it is better to start treatments on PWCs (People with Chronic Fatigue Syndrome) with lower than normal dosages, because “normal” dosages sometimes give us adverse reactions. All this does is make it more difficult for us and our doctors to treat this terrible disease and medications are expensive. SUGGESTION: Use your journal to keep track of your illness, medications, and dosages. Note what seems to help or make you feel worse. If you have an adverse reaction, tell your doctor immediately and consider a lower dosage. If you start with a lower dosage and can tolerate it, try it for a period of 4 - 6 weeks to determine benefit, then possibly try a slightly stronger dosage for 4 - 6 weeks. You and your doctor should usually allow 4-6weeks before deciding whether or not a treatment is working, except in cases of adverse reactions. Don’t be afraid to discuss medication and dosages with your doctor. This is your body and you should understand what is being done for it. When it comes to CFS, this is a team effort between you and your doctor(s) and make sure they are on your side. There is a problem that needs discussing with illness and cures: We and our doctors have been having problems treating our infections. For over 6 months, my blood work has shown a slightly high white blood cell count, which means I have a mild infection. We know it is in my mouth, throat, and possibly lungs. We started off with the strongest antibiotic we could use. Next, we went to 3-days-in- a-row shots. Still no success. Now we are trying an old mild antibiotic and adding a new one. Things seem to be going in the right direction, but not there yet. Well, onward and hopefully forward. We are not currently taking any medications for our CFS. However, we do have medications for stress (Tranxene), pain (Tylenol 4 and Vicodin), and sleep (Klonopin) when needed. We use supplements and vitamins for regular control. EXERCISE: We constantly feel some level of weakness, fatigue, tiredness, and exhaustion. It is quite easy to give into that feeling. There are 2 schools of thought on exercise, especially with FM. However, we believe daily exercise and activity are mandatory to obtain and maintain the highest level of activity and ability you can, but we don’t mean jogging 5 miles a day or a hard workout at the gym. Lack of physical activity itself can lead to obesity, lethargy, muscle weakness, and other health problems. Most authorities currently agree. We found out from my heart attack that the best method for developing an exercise program is to begin with a comfortable level of exercise which will not tire you out or set you back. When I got out of the hospital, I could barely sit in a chair. We (my wife and I) started off with walking 5 minutes twice a day around the house or in the fresh air if the weather permitted. If my heart and I handled that okay, we increased it by 1 minute the next day. We continued this until I could do 30 minutes at a time, with short breaks, if needed. We then added light weights and basic fitness exercises to strengthen our muscles. Obviously, some days are not as good as others. Do what you can. If you are too ill to exercise for a few days, drop back to a comfortable level and begin increasing strength and endurance again. When my wife’s CFS had an extreme setback in 1997, we found that the only way she was able to come back at all was by beginning with one trip around the house, going through each room and gradually increasing from there. That is, develop and stick to a routine of modest, regular exercise. Remember, overdoing exercise when your symptoms flare up can trigger a relapse. The real problem here about exercise is the level you and your body can tolerate. You must remain within you level of comfort and ability. (Please read “A Heart to Heart Tale” to understand our reasoning. EMOTIONAL SUPPORT: CFS is a debilitating, frustrating illness. Most people are usually extremely hard on themselves about how badly they feel and how little they can accomplish. We do not need doctors, family, or friends to tell us “it is all in your head” or “shape up” or “why didn’t you get that done” or “I don’t believe in CFS” or .... We all need understanding, support, and prayers that a real cause and cure will be found quickly. Many studies have shown that love, faith, and moral support help chronically ill patients recover faster and live longer. People with CFS are no different. There are CFS support groups throughout the country and the Internet which help many sufferers. Sometimes just a good friend to talk with and vent frustrations will help to give you a positive attitude and even make you feel better. (Don’t forget that a journal is a good private way to vent your frustration as well as count your blessings.) Any chronic illness puts a strain on a family and other loved ones. CFS can strain family relationships and causes some marriages and relationships to fail. Despite how you feel, you must remember the extra effort we put upon our loved ones and other caregivers. We need our families to understand us and understand that what we are going through is real. Of course, there will be conflicts that will need to be worked out. If it gets too bad, family counseling may help smooth the bumps. We need to understand our “caregivers” point of view, too, and not put unnecessary stress and effort on them. We should always appreciate what they do for us and try to give as much as we can in return. Our case is special since we both have CFS along with our individual problems, so we try to work as a team and be aware of each other. ENERGY LEVELS: “Energy = strength + endurance.” Fatigue means that you don’t have any energy. However, within “fatigue”, we do have various levels of energy which enable us to get things done. Obviously, managing your exertion, proper rest and sleep, etc., play an important role in determining your “energy levels”. However, there are some other things which may help. (1) If you are in the early stages of CFS and are completely down, a simple B-12 shot frequently given by your doctor can often do wonders. After awhile, the shots seem to lose their effectiveness. (Like most medications, we develop a tolerance to them.) However, taking a good time- released B-12 tablet once or twice daily is just good precaution and may possibly help, along with a good B-Complex such as a B-100 tablet. (2) NADH is being touted by many as being extremely helpful in creating energy. However, the recommended dosage is for 3 to 18 months. We have tried NADH on several occasions and have found little benefit. Thus, it seems you might want to try NADH for at least a 3 month period, but results seem to be based upon how serious your current level of CFS fatigue is. (3) Steroids can help on a specific needs basis, such as when you have to get enough strength to at least see the doctor today. However, long term use has not been shown to be effective and can cause serious side affects. (4) Adrenal Energy supplements seem to help a little, but, again, long- term use is questionable. If you and your doctor feel you have an adrenal problem, test for trouble. Other specific treatments are available. It seems a little early to discuss treatment, but if you are new to this disease, you seek HELP and QUICK ANSWERS as you are not yet ready to understand this is a long term illness. The fact that it is a long term illness is what this website is all about. We are attempting to help each other with our own experiences, FATIGUE: What a terrible term for us to “live” with. The old “everybody gets tired; you just live with it and keep going” is what gives CFS its bad name. Instead of “chronic”, we prefer “debilitating” which means inability to function. There is also no easy answer to or help for CFS fatigue even though we all continue to seek the “magic bullet” that will make us whole again. Unfortunately, “management” is the best aid in handling fatigue, along with the elimination of other medical conditions that also cause fatigue such as colds, flu, infections, even depression and “undue stress”. Some vitamins and herbs (specifically discussed in the “SUPPLEMENTS” section) do seem to help over the long haul. Artificial stimulants such as cortisone do not really help unless you have thyroid problems that should be treated as such. If you “need” additional strength for a day or two, cortisone could possibly help, although you and your body will pay for it later. Any stimulant that will give you an energy rush, such as sugar, candy, caffeine, and energy drinks, will wear off, either gradually or suddenly, leaving you more fatigued than you were before. Some things, such as advertised “energy pills”, seem to have adverse effects on our bodies and make us weaker and ill probably because our bodies and immune systems are so messed up. Some doctors believe CFS is caused by an under active thyroid (hypothyroidism) and us shots of cortisone. For most of us, our thyroid test show that we are within normal range even if it is on the low side. These doctors feel that cortisone should still be used in this case. The "Lancet" (England's answer to The New England Medical Journal" reports a long term study that showed no long term benefits to cortisone. On a short term basis, cortisone could be used if you need a serge of energy, but make sure you and your doctor agree. When stopping, your body will need time to adjust (you'll pay for it). Hyperthyroidism is a very serious medical problem you need to be worried about even if you take herbal assistants. IBS (IRRITABLE BOWEL SYNDROME): This is a serious problem for many people with CFS. The problem is that there is no real cure or major help for it. Your best treatment is to eat regular and balanced meals along with exercise. What is needed is fiber, but be sure you drink plenty of water with it. A bulk fiber laxative such as Metamucil can help. Also, an antispasmodic, a muscle relaxant, like Bentyl or Lesim may also help. ProHealth now has an IBS Relief formula that might prove helpful. IMMUNE DYSFUNCTION: No matter what may ultimately be the “cause” of CFS, we all know that our immune systems are messed up and suffer. It is very easy for us to catch a cold, flu, or anything else that seems to be around. And, when we get sick, we get very sick. As we tell our children, if they catch a cold; we catch an extreme case of flu. There are 2 simple things to help: (1) try to avoid people who are ill and (2) wash your hands and brush your teeth frequently as many germs are picked up by the hands and live in the mouth. You should use an antibacterial soap (See "Miscellaneous Medical Information": A study showed that their appeared to be no difference between antibacterial soap and regular soap. The key was regular, good hygiene.). People with CFS should protect and enhance their immune system with proper nutritional supplements, proteins, and perhaps hormones. Free radicals play a role in causing damage to the immune system. CONCENTRATION/MEMORY PROBLEMS: Most people with CFS suffer from “brain fog” or an inability to think, concentrate, and/or remember. It is a very frustrating problem. With your doctor’s approval, Ginkgo Biloba and vitamin B are probably the best aids for mental alertness. Recent research sort of gives Ginkgo biloba a toss up whether it really helps or not. At this point, we continue to use ginkgo and have some faith in it. However, the mind is like a muscle: using it helps. Use it or lose it! Reading (especially mysteries), crossword puzzles, computer or board games, memory exercises and even watching good television programs are good concentration and memory aids. Carry on conversations with an understanding friend and don’t give in to it. Some days will better than others. It’s frustrating, but we all go through it. Sometimes we have very interesting disjointed conversations, but we listen to each other and try to be patient and help to fill in the blanks. My comment usually is, “Nouns and verbs are a pain”. A recent report in "HEALTHNEWS" continues to support active, challenging mental activity to help keep the mind working properly. From studying Alzheimer's, the people who regularly used their mind effectively along with "sufficient exercise" delayed or failed to develop Alzheimer's during the test period. SLEEP/REST: Sleep is one of the "vicious cycles". Sleeping problems are a way of life with CFS. Even “8 hours of sleep” does not necessarily replenish our energy or refresh us - if we are lucky enough to get 8 hours. You need recuperative sleep. Try to stick to a routine that you can live with. It is the best way to “train” your body to sleep when it is supposed to do so. If necessary, take regular rests and/or naps during the day. If you have difficulty sleeping, ask your doctor for a very mild sleeping pill without “drug after- affects”. Klonopin (Clonazepam in generic form) is a prescription to assist in sleeping which is often prescribed because it is effective, non-habit forming, and inexpensive. Two others are of special note: (1) AMITRIPTYLINE is another sleep aid prescribed. In low doses it may be used to help with sleep as well as improve daytime alertness and energy. It is also supposed to relax muscles and decrease muscle/skeletal discomfort which most of us suffer from. The surprising thing with AMITRIPTYLINE is that it does not help me sleep, but it acts as a “brain pain” pill that helps reduce muscle pain and the need for pain medication. (2) SONATA is one of the newer kids on the block. It is special in that its effects begin within 20-30 minutes and will only last a couple of hours; so, it will not have side effects the next morning, even if you take it late at night. If you don’t feel you need a prescription, talk to your doctor about Valerian and Melatonin as they seem to be effective. Java is a stress reducer and relaxant. Quality of sleep is important. Warm baths, standard bedtimes, lemon balm and mental relaxation techniques help induce sleep and ease anxiety, muscle spasms, and calm nervous systems. Remember that you did all you could do today, so put it to rest. Tomorrow is another day and “the first day of the rest of your life”. You might want to check out "Eight Simple Steps to an Agile Mind in the "Miscellaneous Medical Information" section. VITAMINS/HERBS: From frustration and necessity, most people with CFS resort to vitamins and alternative herbal health supplements. If you do your research, you will find that most of the recommendations and “testing conclusions ”suggest “improvements within 90 to 180 days”. The way CFS cycles, we all feel better or worse over a 90 to 180 day period, sometimes day to day or hour to hour. Therefore, a person with CFS needs to work with their doctor and carefully test things for themselves. Remember that herbs are “medicine” and react with other medicines that you may take. MAKE SURE YOUR DOCTOR KNOWS ALL VITAMINS AND HERBS YOU ARE CURRENTLY TAKING AND NEW ONES BEFORE YOU BEGIN TO TAKE THEM TO MAKE SURE THEY DO NOT INTERFERE WITH OTHER MEDICATIONS OR YOUR HEALTH. If, from your journal and general well-being, you do not see an improvement within 30 to 90 days, the odds are that the herb and/or vitamin is not working and save your money. Also, remember our bodies get used to vitamins and medications pretty quickly; so, we go off and back on vitamins and herbs - one at a time - on a periodic schedule for 30 days or so to give our bodies a chance to readjust. CFS MANAGEMENT requires you to take a pro-active role in your life and your medical treatment. Now we get to CFS Patient Management: First, after you have been diagnosed with CFS, your doctor(s) should dispel the misinformation about the disease. They should use a medical team approach: prescribe symptomatic treatments, urge stress reduction, introduce slowly a graduated exercise, suggest a rehabilitation therapy to develop energy conservation techniques, schedule regular follow-up visits, and give emotional support. Continue to the next page for further information. |
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