Friday, December 21, 2012
Reducing Feelings of Resentment in Your Relationship Having fibromyalgia in a partnership or marriage can dramatically change the relationship. Simple tasks that you both took for granted—mobility, housework, finances, social activities, and even making plans for the future—may be sidetracked. As household duties back up and the partner with fibromyalgia tries to take care of themself, the other person in the relationship often feels overwhelmed trying to manage a larger chunk of daily responsibilities. Both parties tend to hide their emotions. The partner who is taking on more duties can begin to feel frustrated, disappointed, sad, or lonely. These feelings can lead to anger or resentment. As the person with fibromyalgia, you may feel guilty and unsure about how to initiate a conversation about the obvious changes in our relationship, but silence can make you and your partner feel more awkward. Here are some strategies to improve communications and handle feelings of resentment with your partner: Initiate Friendly Discussion If the partner who is ill makes a loving effort to initiate discussion that will bring up the spouse’s feelings, the relationship can take a more constructive and supportive course, says Thomas Fuller, Ph.D., a psychologist in Grand Rapids, MI. “This isn’t an easy topic with an easy fix,” Fuller says. “I think the real key is for couples to talk about issues openly and without penalty so things don’t get all bottled up.” Also, you have to consider that while you are dealing with pain, your spouse’s life has changed, too. “Don’t be defensive about your illness or the situation, and accept that your spouse’s efforts, feelings, and struggles are normal. Validate their experience. Verbally appreciate what your spouse is doing to accommodate the situation.” Let them know you recognize the greater effort they are putting forth. Here is what you might say to initiate a friendly discussion: “I know that you are disappointed right now. I know that you love me and are trying not to blame me for being ill. I am so lucky to have a spouse who takes care of things like you do. I am so lucky to have you.” Only You Know How it Feels “Open and honest communication is the best protection against the inevitable hurt and anger that can damage a relationship,” says Connie O’Reilly, Ph.D., a psychologist in Beaverton, OR. “Only you know what it feels like to be in your body, yet it is important that you make a good faith effort to contribute to the household chores, even in small ways. And at the end of a day when your spouse walks in the door and you both realize you’ve not been able to do all each of you had hoped, remember that you are not responsible for anyone’s feeling but your own. Acknowledge the situation, accept that it’s okay, and remain optimistic.” For example: “I realize I did not accomplish many of the tasks I had hoped today. I can understand that you may be disappointed and frustrated. So am I. I plan to go to bed early tonight and try again tomorrow.” Suggest trading some duties and consider all options. While you both struggle to manage the house, parenting and finances, keep in mind the social aspects of a relationship can also suffer. See our articles on Socializing and New Hobbies (Daily Living), to help you as a couple and on an individual basis reap enjoyment out of life.
Letter to Normals: Getting Others to See Your Symptoms by Ricky Buchanan * These are the things that I would like you to understand about me before you judge me … Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day flat on my back in bed, and I might not seem like great company, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too. Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome. Please understand that being able to stand up for five minutes doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover. Imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, “sitting up,” “walking,” “thinking,” “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you. Please understand that chronic illnesses are variable. It’s quite possible (for me it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!” If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute. If this happens, please don’t take it personally. Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct — if I could do it, I would. Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now — it can’t be put off or forgotten just because I’m doing something. Fibromyalgia does not forgive. Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness. If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Fibro then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro. If something worked, we would KNOW. If after reading that you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out. I depend on you — people who are not sick — for many things. But most importantly, I need you to understand me.
The holidays can be overwhelming or the most lonely season of the year. Whatever your circumstances, make the time to do the things that bring you happiness and provide you with a little extra comfort during the cold season. You are not being self-centered. Think of it as self-survival. You have put up with the pain and unexpected symptoms of fibromyalgia all year long. It’s time to focus on your own special needs. Consider these self-help tips: • Sit in a hot tub or sauna to warm up and relax. • Take a long hot bath, but make it special with scented candles, tub pillows or other bathtub comforts. • Give plenty of hugs (and receive them as well) to the special people in your life. If hugging hurts, then just give a snuggle. • Spend quiet time each day reading a book or an entertaining magazine, while sipping a special herbal tea or hot cocoa. • Get your family to help with cleaning all pillow casings and blankets, then surround your bed and favorite couch with them to put a little extra comfort in your life ... and if you share with your family, they will thank you for the great idea. • Liberally use your hot wraps and heating pads. Don't worry about looking fashionable. Just throw a scarf over your wrap and put your comfort first. • If you are hosting guests, close the bedroom door and take a short nap everyday (unless your company is under the age of 12, they can manage without you for a while). Take care of yourself this holiday season and throughout the New Year.
Thursday, December 13, 2012
1. New Preliminary Diagnostic Criteria for FM It’s been 20 years since the American College of Rheumatology (ACR) published the criteria for the classification of fibromyalgia. The old requirement of a tender point exam has been omitted and replaced with a symptom checklist. Now that we’ve introduced you to the new preliminary criteria, we invite you to see how you measure up to this new grading system in the following survey. This does not take the place of a professional diagnosis, but will give you an idea of what is being proposed. You will have an opportunity to comment at the end of the survey. Make sure you have a pencil and a scratch sheet of paper before you begin so that you can write down three simple numbers during the survey. As usual, all information contained in this survey is anoymous. * 1. Age: Age: Younger than 20 21-29 30-39 40-44 45-49 50-54 55-59 60-64 65-69 70 or older * 2. Gender: Gender: Male Female 3. Which one of the following applies? (Check one) Which one of the following applies? (Check one) A physician has diagnosed me with fibromyalgia A healthcare provider has suggested that I might have fibromyalgia I suspect I have fibromyalgia, but have not been officially diagnosed I have a family member or friend who has fibromyalgia I have other painful conditions (such as Lupus, arthritis, complex regional pain syndrome, etc.) but not fibromyalgia I am only taking the survey out of curiosity None of the above * 4. If you have been diagnosed with fibromyalgia, how many years have you had the symptoms? If you have been diagnosed with fibromyalgia, how many years have you had the symptoms? 0-5 6-9 10-14 15-19 20-24 25-29 30 years or more Never officially diagnosed Not applicable * 5. How many years has it been since you were officially diagnosed with fibromyalgia? How many years has it been since you were officially diagnosed with fibromyalgia? 0-5 6-9 10-14 15-19 20-24 25-29 30 years or more Never officially diagnosed Not applicable * 6. Have you ever had a tender point exam? Have you ever had a tender point exam? Yes No I don’t recall 7. If Yes, did you have 11 or more of the 18 tender points? If Yes, did you have 11 or more of the 18 tender points? Yes No I don’t recall * 8. Are you a Member of the Fibromyalgia Network? Are you a Member of the Fibromyalgia Network? Yes No Former member I am not sure The following 3 questions apply to people with fibromyalgia, so if you do not have it please click Not applicable where appropriate. * 9. If you have been diagnosed with fibromyalgia, who officially diagnosed you? (Check one) If you have been diagnosed with fibromyalgia, who officially diagnosed you? (Check one) Rheumatologist Physical medicine and rehab specialist (physiatrist) Pain specialist Primary care physician / family doctor Internist Neurologist Osteopath Chiropractor Psychiatrist Infectious disease specialist Immunologist Acupuncturist Alternative medicine practitioner Nurse practitioner Physical therapist Other No one Not applicable * 10. If you have fibromyalgia, who is primarily in charge of your current treatment? (Check one) If you have fibromyalgia, who is primarily in charge of your current treatment? (Check one) Rheumatologist Physical medicine and rehab specialist (physiatrist) Pain specialist Primary care physician / family doctor Internist Neurologist Osteopath Chiropractor Psychiatrist Infectious disease specialist Immunologist Acupuncturist Alternative medicine practitioner Nurse practitioner Physical therapist Other No one Not applicable * 11. If you have fibromyalgia, how effective would you rate your treatment? If you have fibromyalgia, how effective would you rate your treatment? Not effective Mildly effective Effective Very effective Extremely effective Unsure Not applicable 2. New Clinical Fibromyalgia Diagnostic Criteria - Part 1 Make sure you have a pencil and a scratch sheet of paper before you begin so that you can write down three simple numbers during the survey. Determining Your Widespread Pain Index (WPI) The WPI Index score from Part 1 is between 0 and 19. To answer the following questions, patients should take into consideration • how you felt the past week, • while taking your current therapies and treatments, and • exclude your pain or symptoms from other known illnesses such as arthritis, Lupus, Sjogren’s, etc. * 1. Check each area you have felt pain in over the past week. (It may help to refer to the diagram about the new criteria.) Check each area you have felt pain in over the past week. (It may help to refer to the diagram about the new criteria.) Shoulder girdle, left Shoulder girdle, right Upper arm, left Upper arm, right Lower arm, left Lower arm, right Hip (buttock) left Hip (buttock) right Upper leg left Upper leg right Lower leg left Lower leg right Jaw left Jaw right Chest Abdomen Neck Upper back Lower back None of these areas * 2. Count up the number of areas checked and enter your WPI score here: Count up the number of areas checked and enter your WPI score here: This is your WPI score. You must write down this total from Part 1 on a separate piece of paper before continuing. Exit this survey >> 3. Symptom Severity Score (SS score) - Part 2a To answer the following questions, patients should take into consideration • how you felt the past week, • while taking your current therapies and treatments, and • exclude your pain or symptoms from other known illnesses such as arthritis, Lupus, Sjogren’s, etc. Indicate your level of symptom severity over the past week using the following scale. * 1. Fatigue Fatigue 0 = No problem 1 = Slight or mild problems; generally mild or intermittent 2 = Moderate; considerable problems; often present and/or at a moderate level 3 = Severe: pervasive, continuous, life disturbing problems * 2. Waking unrefreshed Waking unrefreshed 0 = No problem 1 = Slight or mild problems; generally mild or intermittent 2 = Moderate; considerable problems; often present and/or at a moderate level 3 = Severe: pervasive, continuous, life disturbing problems * 3. Cognitive symptoms Cognitive symptoms 0 = No problem 1 = Slight or mild problems; generally mild or intermittent 2 = Moderate; considerable problems; often present and/or at a moderate level 3 = Severe: pervasive, continuous, life disturbing problems * 4. Tally your score for Part 2a (not the number of checkmarks) and enter it here: Tally your score for Part 2a (not the number of checkmarks) and enter it here: You must write down this total from Part 2a on the same piece of paper you wrote your WPI score on (from Part 1) before continuing. 5. What Your Scores Mean You will be asked to enter scores from previous pages. If you forgot to write the three numbers down, or don't remember them, you may hit the previous button below or your browser back button. Your data will not be lost by doing either. 1. Enter your WPI score here: Enter your WPI score here: 2. Add your Part 2a AND Part 2b scores (not just the last number you jotted down). Enter the TOTAL here: Add your Part 2a AND Part 2b scores (not just the last number you jotted down). Enter the TOTAL here: The Symptom Severity Score (SS score) is the sum of Parts 2a & 2b. This total can range from 0 to 12 points. A patient meets the diagnostic criteria for fibromyalgia if the following 3 conditions are met: 1a. The WPI score (Part 1) is greater than or equal to 7 AND the SS score (Part 2a & b) is greater than or equal to 5 OR 1b. The WPI score (Part 1) is from 3 to 6 AND the SS score (Part 2a & b) is greater than or equal to 9. 2. Symptoms have been present at a similar level for at least 3 months. 3. You do not have a disorder that would otherwise explain the pain. For example: If your WPI (Part 1) was 9 and your SS score (Parts 2a & b) was 6, then you would meet the new FM diagnostic criteria. If your WPI (Part 1) was 5 and your SS score (Parts 2a & b) was 7, then you would NOT meet the new FM diagnostic criteria. *The new FM diagnostic criteria did not specify the number of "Other Symptoms" required to score the point rankings from 0 to 3. Therefore, we estimated the number of symptoms needed to meet the authors' descriptive categories of: 0 = No symptoms 1 = Few symptoms 2 = A moderate number 3 = A great deal of symptoms * 3. Did you meet the new diagnostic criteria for FM? Did you meet the new diagnostic criteria for FM? Yes No Unsure * 4. Do you feel the new criteria offers a fair and reasonable assessment of your symptoms? Do you feel the new criteria offers a fair and reasonable assessment of your symptoms? Yes No Unsure * 5. Was this survey helpful? Was this survey helpful? Yes No Unsure * 6. In your opinion, do you think this new criteria: (check all that apply) In your opinion, do you think this new criteria: (check all that apply) Makes it easier for doctors to diagnose fibromyalgia Makes it harder for doctors to diagnose fibromyalgia Makes it more confusing for doctors to diagnose fibromyalgia Makes it less confusing for doctors to diagnose fibromyalgia Is an improvement on the existing fibromyalgia criteria Will lead to a greater misdiagnosis of patients who have other illnesses Will improve the credibility of fibromyalgia patients Will worsen the credibility of fibromyalgia patients No opinion * 7. Do you think this new criteria will lead to better treatment of fibromyalgia symptoms? Do you think this new criteria will lead to better treatment of fibromyalgia symptoms? Yes No Unsure 8. We would appreciate your comments on the new diagnostic criteria. Please do not ask us questions that require a response in the survey comments sections because we will not be able to identify you (everyone is anonymous). We would appreciate your comments on the new diagnostic criteria. Please do not ask us questions that require a response in the survey comments sections because we will not be able to identify you (everyone is anonymous).
A Neurologist’s Approach Many neurologists sub-specialize in the treatment of pain. The Fibromyalgia Network asked several different experts to offer their strategies for treating fibromyalgia. Here is one neurologist’s viewpoint on how to address the pain: Benjamin Natelson, M.D. Neurologist New York, NY As a neurologist, I often use anti-epileptic drugs (AEDs) to help control pain. There appears to be an overlapping neurological system involved in epilepsy, depression, and pain, because similar medications seem to exert an impact on those same systems. AEDs are often good at relieving migraines and they are effective at reducing burning pain. However, their ability to treat the dull, achy, widespread pain of fibromyalgia is not easy to predict. I start a person on one AED, and if it helps but the pain is still bad, I will usually add a second AED with a different mechanism of action. If cost is an issue, gabapentin (Neurontin) and lamotrigine (Lamictal) are off-patent and relatively cheap. If a person has insurance, I may prescribe oxycarbazepine (Trileptal) or pregabalin (Lyrica) because they only have to be taken twice a day, while the others must be taken more frequently. AEDs may be sedating and can reduce nighttime pain—effects that can lead to improved sleep. Regardless of which AED I prescribe, I always start patients on the lowest possible dose, taken at night, and then they increase dose every four days as tolerated. It takes two to three months to reach the target dose of 2,400 mg/day of Neurontin (taken in four divided doses). The target dose for Lamictal is 100 mg three times a day, Trileptal is 600 mg twice a day, and Lyrica is 150 mg twice a day. If a patient does not receive any benefit, or the side effects are intolerable, I switch them to a different AED. Patients may benefit from a healthcare professional, or coach, whom they can communicate with about their abilities and illness concerns. Psychologists working at pain management centers/hospitals may be suitable coaches. Specify up-front that you want help coping with your physical symptoms, not just emotional-related counseling, and use the tips below by Dr. O’Reilly. -------------------------------------------------------------------------------- Finding a Therapist by Connie O’Reilly, Ph.D., Beaverton, OR How do you select a good psychologist, particularly one who understands fibromyalgia? Most psychologists are willing to do a brief consult by phone before you schedule an appointment. Others may be able to consult by email, although some are limited due to confidentiality issues. What to Ask a Prospective Psychologist: •What is your experience in working with patients with chronic pain? •Have you worked with patients that have fibromyalgia? •What is your approach in to helping with such patients? In general, it is important that your psychologist have experience with chronic and painful conditions. However, if you get any hint that the therapist feels fibromyalgia is a questionable diagnosis, keep searching. Listen for this: •Does this professional convey respect and empathy for people dealing with chronic medical conditions, including chronic pain and fatigue? •Does this person recognize that chronic illness disrupts multiple areas of your life, causes a tremendous amount of stress, and can result in concurrent depression and anxiety? •Does this person have expertise in specific areas of concern to you? Identify what you want from a therapist. The better you are at communicating what you want, the more likely you will get it. •Does this person sound like a good fit for you? If not, trust your intuition and keep calling. Evidence suggests the therapeutic relationship is the key to a client receiving satisfying results.
How do you handle guilt? Handling Guilt Most everyone with fibromyalgia or chronic fatigue syndrome knows that they must pace their activities and avoid overexertion, even on a good day. Yet, this philosophy that is so essential for living with these syndromes also requires your family to work harder to make up for your limitations, which may cause feelings of guilt. “The issue of excessive guilt is so universal,” says Connie O’Reilly, Ph.D., a therapist in Oregon who counsels many patients with fibromyalgia and chronic fatigue syndrome. Although many people struggle with feelings of guilt, O’Reilly adds, “This issue happens to be particularly poignant when one has a chronic illness.” Why? You are forced to witness the people you love working overtime to do extra household chores and take over many roles in the home that were once your responsibility. The Fibromyalgia Network Journal includes a full feature on how to handle guilt, with input from four coping specialists. In the meantime, you should be comforted by the following comments made by Thomas Fuller, Ph.D., of Grand Rapids, MI: “Guilt is a sign that you have a conscience, and it is letting you know it is there. People with little conscience act selfishly, and without concern for their impact on others … If you feel guilty about your impact on others, then you are psychologically more healthy, actually.” The trick is to better understand the sources of your guilt and develop ways to control these feelings so that they do not become destructive. Hopefully, the statements above by the two counselors will help ease your struggle with this difficult emotion of guilt. In addition, there are many methods you can use to gain control over these feelings.