| Updated: 5/31/05 |
CFS MANAGEMENT - CONTINUED |
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| ` PATIENT MANAGEMENT We ran across this several years ago in our research. I would like to give credit to the authors of this piece, but it has been too many years and missing notes prevent it. Supposedly, it is for your doctor, but you should read the summary below and, maybe, take it to your doctor. From some things mentioned, I believe it came from an Australia Medical association source since I have never run across a doctor who had the time to do this. This is our summary of the article. First, your doctor is supposed to know and advise that CFS is a debilitating in all patients, but it is not usually a progressive disease. The disability stem from a combination of symptoms such as fatigue, muscle and joint pain, sleep disturbances, cognitive difficulty. And “in some patients”, from associated depression. “Patients need both symptomatic treatment and emotional support.” (You can tell that this is not an American work because we are lucky to get 5 –10 minutes from our doctors.) Today, some research is leading to believe that CFS is a very serious and possibly progressive. “It is vitally important for the doctor to be the patient’s advocate.” Then they are to “forging a therapeutic alliance based upon on trust and open exchange can counter misinformation”. In the absence of any proven treatment, carefully selected therapies should be tried. At the same time, the patient (you) need to be cautioned to avoid exotic, untested remedies that may be harmful. The doctor “should be on the lookout for other medical problems and avoid the assumption that every new sigh or symptom is a manifestation of CFS.” It is also important that you doctor tells you the various tests available to determine aned/or treat an illness. You, the patient, should have a voice in selecting the best for you (and your insurance). It is important for people with CFS to slow the pace of their lives, and avoid or reduce their exposure to situations that may be physically or psychologically stressful, “Having a chronic illness is stressful in itself.” As usual, counseling could help the patient and family adjust to the uncertain course of this illness and the affects upon the patient and the family. The patient should consider support groups which can be found in many of the larger cities or use the various chat rooms or message boards that exist for CFS/ME/FM. They even suggest that patients and family should know that no definitive diagnostic approach exists and to gather other information. After referrals to specialists for specific illnesses, they go into some of the things mentioned earlier in this website. Then one of our favorites, psychiatric problems need to be actively considered and treated by a psychiatrist who if familiar with CFS or other chronic illnesses. It seems that they cannot let go the idea that CFS has a psychological basis. But, we may over react because it has been drilled into our heads that it is a psychological depression or something. Optimistically, we hope they mean they realize a chronic illness can produce temporary depression or other psychological problems. They believe that patients should receive guidance about balancing activity and rest, to set realistic goals, to create flexible plans to account for fluctuations in energy and symptoms, and remain positive about recovery. Let us not forget the specialists when appropriate. They should add here that we must learn things that trigger our illnesses for the worse. Also, they need to make sure the family and caregivers fully understand this also. For children and adolescents, the doctor should with the school to limit class times, if necessary, and to resume normal attendance gradually. A home tutor can help them keep up with their classes. Now they go into treating the symptoms with the mildest drugs and work they way up the scale if needed. Non-sedating antihistamines may help with allergic problems. Now they get into some studies both doctors and patients should be aware of. For instance, the mention a double-blind, placebo controlled CFS therapy trials have found no or limited utility for most other drugs. One test was that an antiviral drug acyclovir results were similar to placebos. They also note that allergies are more prominent in CFS patients. (We give two interpretations to this: 1) People with allergies have been over treated to the point their immune systems have be altered, or 2) CDS has messed up our immune systems to the point that we find we are now allergic to things we were never bothered by.) This report we found recognizes a strong link between CFS and hypotension. I am neither a doctor or even within the medical profession; however, every time I hear this or read about this, I would like to reduce my stress by hitting doctors with a 2x4 to get their attention, I had CFS years before I had heart problems. I know what hypotension is and how it feels. There are times my blood pressure dropped so much that the medical professionals were considering raising the foot of my bed above my head to force blood down into my body to help raise the blood pressure. I know that hypotension can show some of the symptoms of CFS, especially dizziness, loss of balance, and extreme inability to do much of anything. Now that Dr. Chaney has had a heart transplant, I may get an important ally about hypotension. They mention several other studies for treatments with varying facts and help. Most of these will be discussed in the “Treatment & Supplements” sections. We also found “The ME Checklist” which first asks “is the diagnosis right?”, They briefly touch on many of the areas we have already listed: Rest, Get organized, Sleep, Prioritize, Nutritional Supplements, Diet, Elimination Diets., and Avoid unusual emotional or physical stress. They briefly cover some of the paternal causes of CFS/ME: Chronic low Grade undiagnosed Infection, Carbon Monoxide Poisoning, Gut Symptoms, Chemical Sensitivities, Chemical Poisoning, Depression and Allergy Treatment. Principles of Management [The following is something we ran across in our research. It belongs in this section, and we have placed it here in the original form. Again, we would like to give credit where it is due, but we are not sure where is came from. We believe it come from a proposed draft for defining CFS by an Australia medical group. If we are incorrect, please let us know immediately,] Once the diagnosis of CFS is made, the doctor should establish an individualized management plan through a process of active discussion with the patient. The available pharmacological and non-pharmacological approaches should first be outlined, along with the role of continuing medical care and the place for physical, social and workplace (or school) rehabilitation programs. The importance of a collaborative approach between patient and doctor should be stressed. The plan should be designed within the framework of the patient's attitudes towards different modes of treatments. (Our doctor recently took on a new patient who "had Lyme disease" and had been treated for it for years. When our doctor went through the file, he found the test for Lyme disease, and it was negative. Remember to continue to do your own homework.) The goal of treatment should be progressive improvement towards, and maintenance of, maximal achievable functional capacity. While it is very unlikely that any single treatment will provide a "cure", current treatment approaches can result in a significant reduction in disability over time. It is important, however, to give the patient a clear expectation that sustained improvements are rarely achieved in short time frames (days to weeks) but many patients can return to acceptable levels of functioning over longer periods (e.g. three to six months). Moreover, sustained improvements are rarely achieved without some setbacks and exacerbations of symptoms along the way. Frequent switching from one form of treatment to another in search of an elusive "cure" should be discouraged as it is likely to result only in frustration and continuing disability. If patients are made aware of these possibilities at the outset they will be less likely to abandon useful treatments prematurely. To facilitate the reduction of disability, active approaches to the control of key symptoms (e.g. pain, sleep disturbance and depressed mood) using standard modalities should be explored. These may include the use of analgesics, non-steroidal anti- inflammatory drugs (NSAIDs), antidepressants and/or hypnosedatives. If these pharmacological agents prove helpful for the patient, their ongoing use should be reviewed regularly and coordinated with appropriate non-pharmacological forms of care. For example, short-term use of hypnosedatives may assist at the beginning of a structured sleep-wake cycle modification program (Hickie and Davenport, 2000). Similarly, use of analgesics and/or NSAIDs may be necessary during the early phase of a physical rehabilitation approach. Or, if an antidepressant agent (e.g. moclobemide) improves a patient's sense of subjective energy and wakefulness, this can provide an opportunity to embark on a return to school or work, or a social activity program (Hickie et al. 2000). As with other chronic disorders, the patient's attitude to their illness experience, their understanding of the nature of the disorder and its likely course over time, and the relationship between doctor and patient, are all likely to have a significant impact on long-term outcome (Cope et al. 1994). Doctors who take an active approach to the provision of accurate information and to discussion of the key issues with their patients on an ongoing basis are likely to achieve the best results. This does not mean that the patient and doctor need necessarily agree about all treatment decisions (e.g. the use of alternative therapies). It does, however, mean that they should agree on realistic goals for the outcomes of conventional medical treatments. The significant non-specific (placebo) response rate in controlled treatment trials for people with very chronic and disabling forms of CFS (*) is likely to be a reflection of these essential components of good clinical practice (Frank, 1983; Elkin et al. 1989). As a general principle of good management of patients with CFS, it can be useful to introduce the concept of self-monitoring of key symptoms and associated disability. This can be achieved through a variety of standardized instruments (e.g. SPHERE [*], Brief Disability Questionnaire [*]) and/or activity, sleep-wake cycle or pain diaries. These allow both the doctor and patient to develop an accurate picture of whether progress is being achieved with a particular treatment approach, or whether there has been spontaneous improvement over time. Such monitoring may also alert the doctor to the emergence of a change in key symptoms or disability. When people with CFS develop significant new symptoms, or experience a marked change in symptoms, they should be carefully reassessed. New symptoms should not automatically be assumed to be part of the CFS symptom complex. Within this context the emergence of depression and other psychiatric complications is particularly relevant (Wilson et al. 1994). BEING A GOOD PATIENT There is a question and answer section in our local paper called “Ask Dr. Donahue”. We are regularly amazed by some of the questions. Our most usual comment is “why didn’t they ask their own doctor”. You must take a pro-active role in your own health. TELL THE DOCTOR EXACTLY HOW YOU FEEL: My wife is a great list-maker which we find necessary when seeing our various doctors. First, put together a complete medical history together and keep it current. If possible, include as much of the medical history of your family as you can concentrating on the serious illnesses. (Genetic history plays an important role in your health.) Give it to you doctor and every specialist you see. Even if you have seen your doctor for years, it helps him understand you as you cannot expect the doctor to remember every patient’s medical history, If he refers you to a specialist, don’t assume that the specialist has sent him a report of his treatment. If you keep your history current, give him a new copy to bring him up-to-date. In addition, give your doctor a complete list of all medications you take. It is also important that you include vitamins and supplements. Use your journal to make your list complete. Give the nurse who does the work-up a copy; so your doctor will have a few moments to read it before he sees you. Keep a copy for yourself because it is quit easy to miss something when seeing the doctor because of the short time he sees you. ASK QUESTIONS: If the doctor says something you don’t understand, ask the doctor to explain it over in a way you understand. When the doctor gives you a prescription, make sure you are told what it is, what it is for, and what are the possible side effects of the medicine. People like us with CFS have an unusual problem in that we never really feel well (even when we “look great”. We need to treat our worse symptoms first. Avoid the urge to cure everything even if your doctor tries or wants to do so. The only way we know whether a treatment is working or not is to limit our treatments. If you have a serious adverse affect from a medication, let your doctor know immediately. UNFORTUNATELY, WE MUST SEE OUR DOCTORS ON A REGULAR BASIS: Tell the doctor the affects of the previous treatment. Bring you doctor up to date on your health (remember your list). If the previous treatment has not made you feel better, tell you doctor. If it has eased your previous condition, you can go to the next most important symptom on your list. MAKE YOURSELF A MEDICAL HISTORY AND PRESCRIPTION LIST: If you have a computer, this is very easy to do. (There is a commercial on TV talking about cholesterol which says that there are 2 sources: you and your family,) So, start your medical history with your parents, siblings, and, if necessary, serious illnesses and deaths of your greater family including grandparents, aunts, uncles, cousins, et al. Include in your history, any childhood illness including broken bones. Continue your Medical History up to today listing anything that happened to your and even a strange problem even if it is not an illness. All doctors want to know about surgeries; so make sure you list everything and make sure it is easy for the doctor to pull out. If you keep your histories in your documents, they are very easy to keep current. If necessary, write it out by hand, keep it (let the doctor make a copy), and update as needed. Make a list of all medications you are currently taking. Include the prescription name (and generic, if you can find it), the dosage (i. e., 500 mg or 1 tsp), when you take it (number of times a day also), and why you take that prescription (blood pressure, cholesterol, sleep, antibiotic (for what), et al. Keep your list current to give to your doctors each time you see them. (Remember, they don't remember what you take, and it isn't condensed in you medical file. If you have been through problems like I have, I think my doctor is one his 8th or 9th file right now which does not include the medical files we had transferred when we moved here. If you really want to it right, keep an up-to-date list of all vitamins and supplements you take including dosages and number of time a day. CFS MANAGEMENT requires you to take a pro-active role in your life and your medical treatment. |
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