I’m sure there are many of you who remember James as he was one of our earlier members. We have had a total of 3 active male members in our group since the beginning and all three are now deceased. James was probably the youngest of the three, but none were really what you’d call elderly. It has not been difficult to convince me that when men are diagnosed with lupus, they usually have a continually serious version of the disease. This is not to say that women have an easier time with their lupus.
Please, if you know of any of the members who are having a very difficult time with their illness(es) please let us know. Even if it happens to be a member who is no longer on our mailing list, Jerry & I would like to be made aware. And when you know of one who has passed on, please let us know as soon as possible. Thank you.
Also in that same vein, we thank Martha S., who brought to our attention that Karlene J. is now under hospice care. Karlene moved from the Oregon coast to Salem, OR a few years back to begin a new life after being widowed. She had found a loving new relationship there with much happiness and we lost touch with her. If you remember Karlene please add her to your prayer list. We have a couple of other past active members who are suffering and we are carrying them in our daily thoughts and prayers.
Jerry & I have heard little about the support group meetings on the coast of Oregon but we assume they started back up in September. We have had a few other support groups across the country notify us of their meetings, and they’ve been posted in various places on the forum. Many people benefit from attending support group meetings, others use various group websites for help. National organizations for most chronic illness are available online, along with University hospital sites that share answers to most medical questions.
There are so many who do not have a support group nearby to help with their coping problems, and others who find attending support groups not their cup of tea. But everyone with a chronic illness needs some type of support, questions to be answered, a place to find help. We truly hope everyone finds what they need. J&C
ADHD: Not Just for Kids Anymore
Rich Maloof for MSN Health & Fitness
Submitted by member, Connie Osbon
“I couldn’t concentrate. I always had trouble focusing and felt like I was all over the place. I was spinning my wheels,” reports a bright New York City woman who was recently treated for adult ADHD. “Once I was leaving the apartment for an important interview when I noticed that my dog looked kind of scruffy. Ten minutes later, I was still brushing him—and just totally forgot about the interview.”
Everyone gets forgetful or frazzled on occasion. The contemporary world bombards us with so much stimuli, it’s little wonder that we tap nervously on a desktop or have no brain space left to recall where we left the car keys. But when inattention, impulsiveness or hyperactivity overwhelms a life, it may be symptomatic of ADHD.
Attention-deficit/hyperactivity disorder, or ADHD (or, sans the hyperactivity, ADD), has long been understood to affect children. Symptoms have been studied by exhausted parents and teachers for over 100 years. Only since the U.S. government officially recognized it as a legitimate condition in 1998 has ADHD been widely understood to affect grown-ups. It is believed that between 2 percent and 4 percent of all American adults suffer from ADHD.
What adult ADHD is and is not
ADHD is a brain-based disorder. People with the condition are not simply high-strung or flaky or unwilling to concentrate. It’s a neurobiological condition, meaning that the problem is rooted in the body’s nervous system.
Several studies show that ADHD runs in families, though the condition may not surface at all unless additional genetic and/or psychological problems enter the equation. Note that various parenting styles may make ADHD better or worse, but the manner of parenting cannot cause the disorder.
The legitimization of ADHD has been a relief for many sufferers who otherwise felt guilty about their behaviors or believed they weren’t trying hard enough to overcome them. However, some skeptics charge that a disease is being invented to sell a cure for it. If a valid critique exists, it may be in the aggressive marketing of medications or the casual writing of prescriptions. Neither of these negates the fact that ADHD is a true medical disorder.
Diagnosis: Narrowing the gray zone
There’s no simple test or questionnaire that accurately diagnoses ADHD, so don’t self-diagnose based on a good hunch, a handy Web quiz or even on this article.
“With ADD, the prominent symptoms are attentional deficit, hyperactivity or impulsivity,” says Dr. Steven Safren, director of the Behavioral Medicine Service at Massachusetts General Hospital in Boston. “With any psychiatric diagnosis, the cutoff is whether there’s some functional impairment, meaning that it affects some aspect of your life or is disrupting enough that it requires treatment.”
According to the guidelines of the American Psychiatric Association, ADHD exhibits in a set of symptoms, plus significant interference in at least two major areas of a person’s life.
Major symptoms include:
• Poor attention and excessive tendency to be distracted
• Saying or doing things before thinking them through (impulsivity)
• Chronic procrastination and lateness
• Difficulty starting or completing tasks
• Losing things
• Poor organization and planning
• Excessive forgetfulness
In today's fast paced world, everyone may experience at least one of the following life stressors at one time or another. However, if these events are reoccurring and constitute a major disturbance in a patient’s life, they can indicate a possible ADHD diagnosis. Only a professional can give you an ADHD diagnosis.
Signs of a major toll being taken on one’s life include:
• Being fired from a job or never being promoted
• Major stress in a relationship
• Being put on academic probation
• Financial problems from paying bills late or spending irresponsibly
A qualified physician, psychologist or clinical social worker will want an in-depth interview to explore symptoms throughout your lifetime. (One of the criteria for ADHD is that you had it as a child.) They also glean important information from people who spend time with you, so it’s commonly requested that someone close to you be present in the interview.
Treatment: What to expect
The class of drugs known as psychostimulants are the most widely used prescription treatment for ADHD. Approximately half the prescribed patients are responsive to medication. Those who do respond have about 50 percent of their symptoms abated: They’re able to concentrate, maintain attention and not be so scattershot in their daily lives.
Medication should usually be coupled with counseling. Plus, it’s unclear at this point whether the psychostimulants help a patient learn how to beat ADHD or if relief only lasts as long as the meds are in the system. But, Dr. Safren explains, “The meds can ‘turn down’ the symptoms enough so that patients can gain skills to decrease their impairments and distress.”
Cognitive behavioral therapists help patients get rid of negative thought and behavior patterns, and therefore may provide more specific help than a general psychologist.
If you have a strong sense that ADHD has been disrupting your life, explore your symptoms further with a trusted physician.
You are what you eat (or don't eat!) by Sara
The question of whether or not an official "lupus" diet exists has been around since I was diagnosed (going on 9 years now...), and I'm sure the very first lupus patients were grappling with the same dilemma. Are there foods that can improve the disease? Are there foods that can exacerbate it? Although it seems to me that an official ruling on the subject hasn't been declared, I've been part of several conversations lately where lupus patients, doctors, and nutritionists have agreed that cutting out certain foods can improve life with lupus.
Personally, I've tried many dietary changes over the years to lessen my disease activity, many of which seemed to drastically improve my situation. I've kept up with a few of them, and I'll outline the changes I've made (both permanently or temporarily) below. Please keep in mind that items listed are based upon my own personal experience, and are not to be taken as medical advice.
1) Shopped the perimeter of the grocery store - That's right - just the fresh stuff: fruits, veggies, meats, cheeses, etc. My girlfriend at work told me about this concept years ago, when her husband was found to have a heart condition and instructed to limit his diet to items in the perimeter of the store. Years later, I'm still doing it. What does this eliminate? All of the processed stuff with ingredients you can't pronounce. We're not overzealous about it (you'll still find peanut butter, teddy grahams, and chips in our house), but we actually prefer the fresh stuff. (Eeek! I never thought I'd say that. We used to be a 3-Digiorno-Pizzas-a-week family!)
2) Eliminated, at one time or another and in varying degrees: dairy, night-shade vegetables, soda, red meat, and artificial sweeteners. (Note that the first two items are often thought to have natural inflammatory properties. When I read that years ago, I decided not to add to my troubles - so I cut them out for a time.)
3) Replaced my morning bagel and/or toast with a big, fat fruit smoothie (sans yogurt.) All of that delicious fruit was like one big energy boost. I felt great!! (I've since switched to cereal with milk - I burned out on daily smoothies after several years of it...but I still enjoy one every once in awhile.)
4) Moved our microwave to the garage: That's right - our micro has been boxed up for almost 6 years now...and we haven't missed it for one minute.
A) Food seems to taste a lot better warmed in the oven, B) we never buy packaged/boxed microwave dinners because, duh...we don't have one, and C) we actually have to think long and hard about heating up a snack, because it's going to take at least 20 minutes before it's ready. How many fatty, greasy things do you think I've passed on because it would have just taken too long in the oven? A lot! And you know what I eat instead...fruit, which needs very little preparation. Who would have guessed?
There you go - Despite Lupus' dietary history. Remember, the items above are strictly based upon my own personal experience. I suggest consulting your doctor before making any drastic changes to your diet. And feel free to chime in with your own dietary success stories. I look forward to hearing what works for you!
POSTED BY SARA GORMAN
Don’t forget to pick up a copy of Sara’s book!
Is It Arthritis or Heart Attack?
My friend was having severe chest pain and went to the ER. The final diagnosis was arthritis. Can arthritis cause chest pain?
Answer: Arthritis can definitely affect the chest wall, particularly where cartilage attaches the ribs to the sternum. The most common kind of chest pain in this area is caused by a condition called costochondritis, an arthritis-related syndrome. You may have experienced this if you have ever lifted something quite large and carried it out in front of you, the strain has injured the cartilage. It doesn’t necessarily take lifting a heavy object, however; it may also happen spontaneously.
There is no swelling associated with costo-chondritis, but you may feel twinges of pain with or without movement. The injured area will also be tender to the touch, but the pain can radiate in a larger area alongside the sternum. Costochondritis usually resolves with the use of heat, rest, and antiinflamm-atory medications. In rare cases, I have had to inject steroids into the area where the cartilage meets the sternum. There can also be chest-wall pain with fibromyalgia and myofascial pain syndrome. This pain is more diffuse than that of costochondritis. Other disorders that affect the joint where the collarbone meets the sternum can cause pain directly over that joint, but also can radiate over the entire chest area….these disorders include gout, infection, osteoarthritis, psoriatic arthritis, reactive arthritis, ankylosing spondylitis and inflammatory bowel disease.
Your friend did the right thing by going to the ER, always err on the side of caution.
Arthritis Today Magazine – 06/09
ORAL CONTRCEPTIVES May Trigger Lupus
Results of a large new study suggest oral contraceptives may raise the risk of developing systemic lupus Erythematosus (SLE), particularly within the first three months of use.
Researchers from McGill University in Montreal, Canada, analyzed the medical records of 1.7 million women ages 18 to 45 in the United Kingdom who were followed for an average of eight years. From that population, 786 women developed SLE, and they were compared with similar women who did not develop SLE.
Researchers found that current use of oral contraceptives was associated with roughly 50 % increased risk of developing SLE. The risk was more than doubled, however, within the first three months of use.
Researchers speculate that the risk may be highest for a small subgroup of women who are genetically susceptible.
The results of this study, published in the April 2009 issue of Arthritis Care & Research, were consistent with a similar investigation that used data from the Nurses Health Study.
Previous studies have shown that oral contraceptives are safe for women with lupus who have inactive or stable disease. Birth control pills are not recommended, however, for women with lupus who have antiphospholipid antibodies or who are at high risk of having a blood clots.
Your Health (Medwatch) Brenda Goodman
Stretching For Fibromyalgia, Chronic Fatigue Syndrome,
and Chronic Myofascial Pain - Do it Right
Gentle stretching can be performed by physical therapists and/or practiced by patients at home. Several programs have been fashioned for Fibromyalgia (FM), Chronic Myofascial Pain (CMP), and Chronic Fatigue Syndrome (CFS) patients for this purpose. Stretching is important because it helps to relieve muscle tension and spasm. In difficult-to-treat areas, "spray and stretch" techniques can be used by applying a spray coolant to sore muscles, which deadens pain while the muscles are stretched. Many therapists prefer to ice the muscle, since the spray is a prescription, is flammable, and causes pollution. Ice works just as effectively.
Stretching, as it relates to physical health and fitness, is the process of placing particular parts of the body into a position that will lengthen the muscles and associated soft tissues. Stretching is a simple and effective activity that helps to minimize muscle and joint soreness in FM and other musculoskeletal conditions.
There is a right way to stretch and a wrong way to stretch. So, you must be careful. Stretching can be damaging if done incorrectly. You don't want to do more harm than good! It is important that the following guidelines be followed, both for safety and for maximizing the potential benefits of stretching.
The most important things you need to know about stretching: Warm up the muscles FIRST: Cold muscles can injure very easily and so it is very important to warm up the body before any significant stretching or exercise. The body's core temperature needs to be brought up during your warm-up. This will increase the temperature of the muscles, making them more pliable and loose. A warm-up will also increase the heart rate, blood flow and nutrients getting to the muscles.
As your breathing rate increases, the amount of essential oxygen reaching the muscles rises. A safe warm-up for a FM, CMP or CFS patient might be a brisk walk or a short swim. The warm up should not last more than 10 minutes and it shouldn't be too taxing. If your level of fitness is somewhat low or severe pain is experienced, you need to ease up.
Stretch slowly and gently: Slow gentle stretching helps to relax the muscles of the body. FM & other chronic pain sufferers who use sudden or jerky movements or over-stretch can find themselves in increased pain, muscle strain and even muscle tears. All stretches should be done as if in slow motion and as smoothly as possible.
Don't stretch further than is comfortable: Over-stretching is one of the main causes of muscle strains and tears and so it is important that each muscle is only stretched as far as is comfortable. If you overdo it you can cause the tendons and ligaments attached to the muscle to spontaneously contract which can be painful, to say the least and can cause permanent damage. Stretching should never be painful.
Practice breath control while stretching: Many people tend to hold their breath when stretching and don't even realize it. Holding your breath can cause the muscles to tense and stretching a tight muscle can lead to injury, especially in FM, CMP & CFS sufferers who already have tense and painful muscles. The amount of oxygen and nutrients needed will be greatly depleted if you hold your breath and the muscles will develop excessive lactic acid which is very painful. So make sure you BREATHE!
Doing it Right: Each stretch should be held for around 30 seconds for the maximum effect. Anything less than this will not provide a sufficient length of time for the muscle to relax and lengthen. Each muscle group needs to be stretched a minimum of two or three times in rotation as well. Chronic pain sufferers may have trouble stretching to this extent in the beginning. You should only stretch until you start to feel uncomfortable. Even if you can only handle a few minutes at first, it will be worth it. You will gradually be able to increase the time and hopefully even the rotations. Do a LITTLE every day so you don't end up in so much pain, you that you can't stretch the next day.
I believe you will be amazed at the benefits of stretching when done properly! I sure was! I can do more and I feel better after a good stretch in the morning. It also helps me relax at night.
Erica Thompson is a 40-year-old, Stay-at-Home mom with 3 children and a husband in the military. She was diagnosed with FM in 1995, but suffered from it many years prior to diagnosis and later, diagnosed with Myofascial Pain Syndrome. She has done extensive research and is an expert based on her own experience, her mother's and her grandmother's. Her goal is to educate as many people as she can about FM and all that goes with it, and to give chronic pain sufferers the tools they need to manage their pain and regain the quality of life they have lost.
Have you ever thought about setting a Time Line for the Holidays?
Early December: Decorate for Christmas. Do any local gift shopping I need to. Start addressing the Christmas cards.
Mid December: start wrapping presents, making sure to work in short bursts with rest periods in between. If I have the energy, I might do some baking, however I still have the option to purchase baked goods needed. Mail Christmas cards, and any gifts that needed to be mailed.
Anytime I'm going to a party or event, I do nothing else physical that day and try to keep my schedule light the day after. I do know that I can cancel going to parties when needed.
Start your plans early for any holiday, make lists of everything you need to take charge of. Always understanding that you may ask for help when needed, and that when over-doing you will pay for it with pain and fatigue.
Fibromyalgia’s symptoms real but be cautious in diagnosis
From ACP Internist, copyright © 2009 by the American College of Physicians
By Stacey Butterfield
Rheumatologist Frederick Wolfe, MD, was among the first contemporary physicians to write about fibromyalgia. In the 25 years since, he’s been pulled to the center of fibromyalgia treatment paradigms, especially regarding the involvement of pharmaceutical companies. He recently spoke with ACP Internist about where fibromyalgia came from, the best way to treat it, and how he expects this perplexing disorder to eventually disappear.
(Carolyn’s note…remember as you read this, it is one doctor’s opinion.)
Q: How did you get started studying this condition?
A: When the modern era of fibromyalgia started, there were about four or five of us in the U.S. who wrote about it. We saw people who had certain symptoms and we tried to understand what the symptom complex was and what it meant. I don’t think we recognized what we were creating—that we were going to have a rush of people that have it. That there were going to be disability issues, there were going to be legal issues. That there were going to be societal issues, that there were going to be movements associated with it. When I first started with fibromyalgia you couldn’t get a grant to study it. You sent the grants in and people said, “It doesn’t exist. What are you talking about?”
As fibromyalgia began to be accepted, there was considerable political pressure on NIH [National Institutes of Health] to give out grants. Suddenly, people who never believed in it and thought it was crazy idea were competing for the same sort of grants. It became an academically fundable disorder. With grants, there’s publication and glory and funding. With additional scientific research, suddenly fibromyalgia became established. It became established in academia and publications, but not with community physicians. Community physicians still think that the fibromyalgia concept is a little bit crazy.
Q: Why is fibromyalgia a problem for community physicians?
A: When doctors try to evaluate fibromyalgia severity and consequences, they have a lot of problems and they don’t know what to do. “How do you feel? Are you tired? Are you having sleep problems? Are you having pain?” The patient says, “Yes, it’s terrible. I have all these things.” That’s why physicians really dislike this. It’s really deciding whether people are telling the truth. Fibromyalgia is all based on self-report. I really believe strongly in self-report. But in an illness which has such an emotional overlay, there’s no easy way to deal with severity and its consequences.
Q: Could you explain the debate over whether fibromyalgia is a disease?
A: Nobody has a good definition of what a disease really is. Everybody recognizes that the pain is real and it’s severe and it causes people problems. The question that comes up is diagnosis. To sell drugs, you have to diagnose it. To make it a legitimate disease, that you can study and get grants for, it has to be diagnosed. Insurance companies don’t want to pay for pain. They want to pay for a diagnosed disease. So there’s an enormous effort to try to legitimize it. We have to treat patients as people who need treatment. We have to give them everything we can, but does that mean that we have to believe that a set of symptoms is a disease?
Q: What’s the argument against it as a disease?
A: Fibromyalgia is a socially constructed illness.
It represents a common set of symptoms that all human beings have. The people who are classified as having fibromyalgia have more of these symptoms than others do. It’s part of a continuum rather than a disease. And fibromyalgia isn’t really that different from other illnesses like chronic fatigue syndrome, or fatigue syndromes, or irritable bowel syndrome. Many people with fatigue syndromes also have much pain. If you took out the fibromyalgia tender point requirement, you’d find that the symptoms are all the same.
“Fibromyalgia is all based on self-report. I really believe strongly in self-report. But in an illness which has such an emotional overlay, there’s no easy way to deal with severity and its consequences.”
—Frederick Wolfe, MD
The argument on the other side is that there are real abnormalities. They say we can demonstrate abnormalities in fibromyalgia patients with brain-scanning methods and measure elements in the blood and changes in the immune system. All of these things are different in people with fibromyalgia, and that proves it exists. Well, it doesn’t prove it exists. All pain has to have a biological basis. If you’re schizophrenic and you’re imagining some bad things are happening, it has a biological basis.
What most fibromyalgia research has done is take this upper end of the spectrum, this 5% of the population or less who have these severe symptoms, and compare them with people who don’t have anything whatsoever wrong with them. The real comparison group should be people who have pain and these sorts of problems. We would find that there is a distribution of abnormalities. Fibromyalgia symptoms (“fibromyalgia-ness”) exist as a continuum in all people.
Q: How then did fibromyalgia come to exist?
A: Illnesses such as these are defined by the acceptability of certain symptoms by society. Pain and fatigue, the right doctors, the right moment in time, the right social and political climate, and chance made fibromyalgia catch on. But the symptoms had been there and been reported on for more than a century. They are universal human symptoms.
Q: When an internist sees a patient with these symptoms, what should she or he do?
A: It isn’t necessary to have a diagnosis of fibromyalgia in order to treat these universal symptoms. They’ve always existed. One can have a practical approach. For example, if you have a treatment that cures the syndrome, it doesn’t really matter what the underlying intellectual arguments are. But in a situation where you don’t and where the treatments really aren’t very effective—by the way, the treatments are relatively the same in the fatigue syndromes as they are in fibromyalgia—what one wants to do is to try to improve the patient as much as possible, and you do that often by education, by explaining what’s going on, by trying to deal with issues of anxiety and depression, and by the judicious use of medications. Very often what people with fibromyalgia need are friends, people who can talk with them. They need somebody to be there for them. What one has to do is approach fibromyalgia patients with wisdom and kindness.
Q: Why might you want to avoid diagnosing fibromyalgia in a patient?
A: What one wants to do is try to really understand what’s going on, if it’s possible. I’ve seen 17- and 18-year-old teenage girls who have been diagnosed as having fibromyalgia when in reality what they had was a terrible time in late adolescence with all sorts of stresses in their lives—school problems, things that most of us have experienced in our lives and have survived with. Giving somebody a diagnosis like that is a terrible thing to do. Not only is it terrible because it makes them think there is something wrong with them when there isn’t something wrong with them, but it also sort of marks them for life.
Medical insurance is hard to get. Get into any sort of divorce or lawsuit and that sort of thing is a black mark. Nobody needs the diagnosis of fibromyalgia. Fibromyalgia diagnosis also has societal consequences and fosters medicalization.
Q: Do patients with fibromyalgia need drug treatment?
A: Sometimes. The newer drugs don’t really have any advantage over the older drugs as far as I can see. If you give them amitriptyline or you give them another drug and it works, then that’s fine. Remember, when I say it works, you don’t cure these conditions. So instead of them being 80% worse, they’re 60% worse.
The problem is that nothing really works well enough. For those of us who have done observational studies on this, we don’t really see much benefit from the drugs. You run the risk, by treating people with drugs that don’t work, of making them sick. Internists know very well that the more drugs you use the more likely there are to be adverse effects.
I’ve often seen patients who had been on all the drugs in the world. Some of them have taken 25 different drugs. If they’re still having problems, then no drug is going to really be helpful. Sometimes you need to stop and say, “Enough. What works best for you? Take that.” What one wants to do is prevent switching from doctor to doctor and drug to drug and so on.
Q: What’s going to happen in the debate over fibromyalgia?
A: There will be an end to the fibromyalgia pandemonium, much like there was an end to the Yuppie Flu. I think that it’s going to disappear as an important issue. If you look in the literature, you find four or five articles that say, “Wait a second, the emperor has no clothes on.” There’s been a bunch of studies on family history of depression in people who have fibromyalgia. All of the studies that have looked at this, except those in the hands of very strong believers, have shown the social basis. Someday somebody’s got to stand up and say, “Wait a second, all of these drugs are very expensive and provide minimal sort of benefits.” If that happens, this will disappear as many other things have disappeared. It will be replaced by other things because that’s the way humans act.
Carolyn’s note…I’m sure this will anger many, and cause numerous discussions in others, however it is a valid opinion. I believe we do have many who are “self diagnosed” who either have an illness that has yet to be diagnosed, or who probably have no illness at all. There are those who do suffer hypochondria. So read this and take from it what you can accept and leave the rest. All articles in this newsletter are not necessarily the opinion of the staff, but only of the author of the article.
Do you know the difference between education and experience?
Education is when you read the fine print; experience is what you get if you don't.
—Pete Seegerwww.lupusfibro.com
Don’t forget to check out our forum when you go to the website of MY Lupus/Fibro Support Group.
You will find numerous new articles on various subjects that deal with your chronic illness. If you register you will be able to make comments and ask questions; always you are able to read all the articles.
Can Mycophenolate Mofetil Help Prevent Lupus Flares?•
Mycophenolate mofetil is effective in reducing disease flares in systemic lupus erythematosus patients: a retrospective study Lupus, Volume 18, Number 4, May 2009, pp. 394 – 399
What is the topic?
Lupus disease flares are periods of increase in disease activity. Sometimes flares are detected by changes in levels of antibodies or other proteins in the blood (“serologic flares”), which can occur without the patient knowing, and at other times flares show up as an increase in symptoms that the patient is aware of (“clinical flares”). Depending on the level of disease activity, flares are characterized as “mild/moderate” or “severe.”
Steroids (e.g., prednisone) are often used when lupus patients experience a disease flare. However, long-term steroid use increases the risk for osteoporosis, diabetes, high blood pressure, heart disease, and stroke. Therefore, medicines that can reduce the number of lupus flares may have an additional benefit of lowering steroid use and the risk of complications associated with taking steroids.
What did the researchers hope to learn?
The researchers wanted to see if the immunosuppressive medicine mycophenolate mofetil (MMF), which is sometimes used to treat active lupus, might also help prevent flares.
Who was studied?
The study group consisted of 67 lupus patients who had been treated at the Mayo Clinic in Rochester, Minnesota, over a six-year period (1999-2005). Of the 67 patients in the group, 53 (79%) were women. The patients had a wide range of symptoms, with 54 (80%) reporting skin involvement and 47 (70%) reporting joint involvement. In addition to steroids, all of the study patients had taken MMF, on average for 27 months.
How was the study conducted?
The researchers reviewed the medical records of the study patients for the two years before and two years after they began treatment with MMF. These records included blood tests, patient-reported symptoms, and prescribed medicines. To rate the flares that occurred the researchers applied the SELENA-SLEDAI flare index to the information they gathered from the medical records. They then counted and compared the number of flares before and after MMF treatment, and also calculated the rate of flares per person year.
What did the researchers find?
The researchers found that MMF treatment significantly reduced both the number of flares and the flare rate. For the years before MMF treatment, the researchers’ SELENA-SLEDAI scoring detected an average of a little less than one flare each year for each patient (0.89 flares/patient/year) For the years after MMF treatment, there was only a flare about every two years on average for each patient (0.53 flares/patient/year). Steroid use was also reduced after MMF treatment, with the average daily dose going from 15.4 mg/day to 8.2 mg/day; a decrease of 47.4%.
The researchers broke the results down for mild/moderate and severe flares. Mild/moderate flares were reduced after the MMF treatment from an average of 0.79 to 0.48 flares/patient/year. Severe flares also decreased from 0.1 to 0.04/patient/year on average. When a statistics test was applied to the findings, the changes in mild/moderate flare were found to be significant. Although the changes in severe flare rates did not reach statistical significance, there were probably not enough of them to determine this test.
Only five of the 67 patients in the study reported side effects after taking MMF. Other studies using MMF have shown higher rates of side effects, however. Furthermore, other studies have shown more flares in lupus patients, especially mild/moderate flares.
What were the limitations of the study?
This was a retrospective study, meaning the researchers only had patient records that had been collected in the past. Therefore they had to rely on the accuracy of the past reports, and depend on the doctors at the time of the visit to write down all the information needed to score the flare index. It is much more likely that some flares were missed in a study like this. However, there is no reason to believe that they were more likely to be missed before the patients took MMF than after they started it. Therefore, the differences found in both the number of flares and the flare rate, and the decrease in steroid dosage, and the reduction in severity of flares, remain interesting, in spite of these limitations.
What do the results mean for you?
In this study MMF appeared to be an effective preventive treatment for lupus patients. Especially encouraging is the fact that MMF not only might have helped lower the number of flares, but MMF patients also reduced their prednisone doses significantly, thereby reducing their risk for complications associated with long-term steroid use.
8 Key Strategies for Living Beyond Your Illness
by Shelley
If you’ve recently been diagnosed with an illness than it’s likely you’ve experienced the waves of fear that come with it. That’s only natural. How you ride out these waves of fear can make a big difference in the way you manage your illness and embrace your life. The following are 8 tips to help you courageously manage the news of your diagnosis and set a course for playing an active and empowered role in your quest for wellness.
Breathe: The fear and shock that comes with a new diagnosis can literally take your breath away. Don’t forget to breathe. In order to have a clear head and design a decisive plan for forward action you are going to need to give your mind and body the oxygen it needs to help you be proactive.
Slow Down: Everything tends to speed up in your experience when facing a diagnosis. Your mind can be spinning at lightning bolt speeds, your body feels more revved up than usual, and a sense of urgency looms in all that you do. Learning to slow down and breathe will help you deter confusion, indecision and anxiety and also give your body a more favorable environment to restore itself to wellness.
Acknowledge What’s Working: Even though you may be experiencing physical symptoms from your illness, remember to acknowledge the parts of your body that are free from symptoms. Bring your attention and appreciation to all the systems, cells and functions of the body that are performing well. The more evidence you have that your body is working hard to support you the less you will feel betrayed by your body.
Befriend Your Body: Although your initial instinct may be to flee or disconnect from your body now is the time to create a deepened connection. Listen to your body so you can better understand what it needs from you. I know this can feel hard at first— but right now it is important that you create an allied force with your body and you.
Research with an Intention to Motivate and Inspire Yourself: Others have walked this path. Create an intention to research positive stories of others who have managed their illness well. Set out to be inspired and supported and what you find will most likely be a reflection of inspiration and support.
Acknowledge Your Fears: It takes a lot of energy to run away from our fears—energy you’ll want to reserve for better things. If you don’t face your fears and move through them they can compound the challenges you already experience with your illness. So be honest with yourself about your fears. Acknowledge what they are, write them down, and decide what you will need in order to positively manage your fears.
Train Yourself to Live in the Present: Commit to daily practices that bring you into the “here and now”, and take you out of the negative “What if?” thinking. “What if’s” create confusion, overwhelm, and a lack of direction. They steel your time, focus, energy, and ability to move forward proactively and decisively. The more you practice being present you’ll find that it becomes a tremendous precursor to cultivating peace of mind and action plans that work for you.
Deepen Your Mind/Body Relationship: Your illness may have you feeling powerless at times but you can play a very significant role in your health and wellness—one that makes you feel more in control than you imagined you could be. Indulge in daily activities that help you de-stress emotionally, mentally and physically. In doing so you will find that with practice you can positively influence the health and well-being of your mind and body.
Fibromyalgia and Weight Gain
The Link Between FM and Weight Gain
Why does fibromyalgia trigger weight gain in so many people? There are a number of ontribut-ing factors:
Lack of Sleep. One of the primary symptoms of FM is the inability to get the deep, stage 4 restorative sleep we need. Recent studies have shown that people who do not get adequate amounts of sleep are more likely to gain weight. Lack of sleep causes a reduction metabolism and an increase in appetite, particularly a craving for high-carb and high-sugar foods.
Neuroendocrine Abnormalities. Research has revealed several hormone deficiencies in fibromyalgia, such as serotonin, growth hormone, cortisol and thyroid, which can contribute to decreasing the body’s metabolism. There may also be an increased sensitivity to insulin, causing the body to go into a fat-storing mode.
Decreased Activity. Because of their level of pain, most FM patients are not able to increase their exercise to the levels needed to increase metabolism rates and burn the calories required for significant weight loss.
Medication. A number of medications commonly given to treat the symptoms of FM –– particularly antidepressants –– have the side effect of weight gain.
Weight-loss Strategies
Since our pain makes it difficult for us to increase our exercise enough to burn more calories and our slow metabolism means eating less doesn’t usually help much, what can we do to lose weight? Dr. Pellegrino has developed a food plan designed to improve our metabolism and calorie-burning abilities by providing us with the right “quality” of food. He recommends:
Eat a High-protein, Low-carbohydrate Diet. Focus on good proteins like lean meats, eggs, dairy products, tofu, soy meat substitutes and legumes. Limit carbohydrate intake to vegetables and fresh fruits. Include good fats, such as plant oils, fish oils, almonds and avocados. If you need a sweetener, use a natural sweetener like Stevia or Xylitol. Avoid sugar and other sweets, breads and pastas, rice, potatoes, partially hydrogenated oils, carbonated drinks, and alcohol except in moderation.
Eat Proteins First. Never eat carbohydrates –– even good carbs –– by themselves. Always eat a protein first. When you eat a protein first, the protein digestive enzymes are activated, which then slows the absorption of carbohydrates.
Eat Until You’re Full. At meals, eat until you’re full, but not stuffed. Eat slowly, chewing your food well. You should eat five or six times a day. It can be three regular meals and two small snacks, three small meals and two larger snacks, or five small meals. Experiment and see what works best for you. If you have irritable bowel syndrome, you may find that you do better eating small portions more frequently.
Give Yourself a Break. Follow this diet strictly Monday through Friday, then allow yourself to splurge a little on the weekends. Knowing you can indulge a little on weekends should make it easier to stick to the diet through the week.
Check With Your Doctor - Before starting any new diet or exercise program, it is always a good idea to check with your doctor. You might also want to talk with your doctor about testing you for things like thyroid, yeast or fungal overgrowth (Candida), hypoglycemia, and hormone deficiencies, since these things can also contribute to weight gain.
____________
Source:
Pellegrino, M (2005). Fibromyalgia: Up Close & Personal. Anadem Publishing.
Kase, L (2007, October). Magic Power of Sleep. Reader's Digest, 110-115
A New Medication for Lupus?
Frequently Asked Questions regarding BENLYSTA™ (Formerly Lymphostat-B)
What is BENLYSTA?[/b
]BENLYSTA is a human monoclonal antibody that is being investigated as a potential new treatment for lupus. A monoclonal antibody is a type of protein made in the laboratory that is developed to find and attach to only one type of substance in the body.
How does BENLYSTA work?
BENLYSTA is a human monoclonal antibody that specifically recognizes and blocks the biological activity of B-lymphocyte stimulator, or BLyS® (pronounced bliss), a naturally occurring protein which was discovered by scientists at Human Genome Sciences (HGS). Elevated levels of BLyS prolong the survival of B cells which can contribute to the production of autoantibodies -- antibodies that target the body’s own tissues. Previous studies have shown that BENLYSTA can reduce autoantibody levels and help control autoimmune disease activity.
Who developed BENLYSTA?
BENLYSTA is being co-developed by Human Genome Sciences (HGS) and GlaxoSmithKline (GSK).
What clinical research has been conducted on BENLYSTA?
HGS released Phase II clinical trial results for BENLYSTA in June 2006. The results demonstrated that it significantly reduced disease activity versus a placebo in patients with clinically active lupus, and appeared generally safe and well-tolerated. In July 2009, HGS announced positive top-line results from the Phase III clinical trial, BLISS-52, which will continue to be analyzed.
Results from the Phase III BLISS-76 clinical trial are expected to be released in November 2009. The design of the two trials is similar, but the duration of therapy in the two trials is different, 52 weeks for BLISS-52, and 76 weeks for BLISS-76.The BLISS-52 study was conducted primarily in Asia, South America, and Eastern Europe, and BLISS-76 is being conducted mostly in North America and Europe.
What are the results of the BLISS-52, Phase III BENLYSTA study?
The study demonstrated that lupus patients who were treated with BENLYSTA had improve-ment in overall disease activity without clinically significant flare-ups in one or more isolated organs when compared to patients who received the placebo (inactive agent). The patients receiving BENLYSTA also were able to reduce their intake of steroid medications. The study is the largest ever to be completed for lupus and the first Phase III (late stage) trial of a new biologic immune therapy for lupus to succeed in meeting its primary endpoint and most of its secondary endpoints.
If BENLYSTA is approved by the FDA, what does it mean for people with lupus?
While clinical trials are still ongoing, assuming success, BENLYSTA could represent a breakthrough in the treatment of lupus. If approved, BENLYSTA could be the first drug approved to treat lupus in more than 50 years AND would be the first drug developed specifically for lupus since the disease was discovered more than a century ago!
What makes BENLYSTA different from other lupus treatments?
BENLYSTA could be the FIRST FDA-approved medication specifically designed for the treatment of lupus. Current medications are borrowed from other diseases and conditions and some are used off-label, which means they were never approved by the FDA for lupus. These drugs include high doses of steroids, antimalarial medications, immunosupressive drugs, and organ-rejection drugs -- many which have serious and devastating side effects.
When will the drug be available for patients?
More information on this issue will be available after the results of BLISS-76, a longer-term Phase III clinical study, are released this fall.
The results from the BLISS-52 study and the BLISS-72 study will be submitted to the U.S. Food and Drug Administration (FDA) for review. The review process can take anywhere from six months to several years to complete. ONLY after receiving FDA approval will the drug be available to patients.
What side effects have been found with BENLYSTA?
In earlier Phase II studies, BENLYSTA has shown no increase in overall or serious side effects or infections. More information will be available on this issue as the data continues to be analyzed along with the results for the BLISS-76 clinical study which are expected to be released in November.
Are there other treatments being researched for lupus?
There are several promising treatments in the near-term pipeline. More companies are involved in lupus research and there are more potential new therapies being investigated than ever before.
Why has it taken so long to find a treatment for lupus?
Lupus is a complex disease. It can affect multiple organ systems and symptoms can range in severity from one day to the next. And it can affect each person differently with varying responses to treatment. The complexity presents challenges in evaluating potential new therapies. With each research study, regardless of the outcome, there are new discoveries that help pave the way for new therapies.
[b]Hell Fire's Rain"... an FM poem
by Debra Van Ness
Mornings of stiffness filled with such pain; My soul slowly drowning in Hell Fire's Rain. I am alone with this coward that won't set me free; Fibromyalgia just won't let me be.
Such an unfitting term to picture this beast, wrapping me tightly in Hell Fire's feast. Hours of sleep spent only in vain; He beats at my body inflicting more pain.
Invisible silence, the most evil trick; No Evidence to prove that I am so sick. Twisting my muscles he drains me of life; No energy left to mother or wife.
Trudging through motions of everyday tasks, no one can believe me and no one will ask. Sympathy not a desire of mine, if they ask I shall say that "Today I am fine."
No need to mention what leaves them confused, I walk alone in Hell Fire's shoes. Unrelenting miseries don't leave for long; my life is the lyrics of Hell Fire's song.
I feel like the servant of everyone's call, I believe that my body has given its all. Yet I cannot stop and lie down in my bed; I suppose I would wither if joy was all dead.
Explanations bring stares blank and so cold; They refuse to believe what they are told. I do not appear to have some disease. I should be "able to do as I please".
Oh sweet belief reveals their mistrust as I continue to do all that I must .If they swirled for a moment into my body of pain, they could feel all the embers of Hell Fire's Rain.
They would awaken to an invisible monstrous flu; Feel a body of stiffness that refuses to move. They could feel what it is like to be so dismissed, sitting alone in the silence of Hell Fire's mist.
They could tell everyone how sick that they feel; They would know how the monster hides as it steals.
He burns, he twists, he is tingling and numb; He is sharp, He is dull.....
He is Hell Fire's sun.
With medical jargon they will never explain what it is like to live in Hell Fire's Rain.
Debra A. Van Ness (A fibro sufferer and survivor
Financial Statement
This is the first financial statement for –
My Lupus/Fibromyalgia Support Group
January 2009 Balance Forward: 476.26
INCOME:
Donations 642.27
Savings 117.29
Interest .18
-----------
Total 769.74
Sub- Total 1236.00
EXPENSES:
Postage: 270.81
Printing: 206.82
Donation: 50.00
---------
Total 527.63
Ending Balance as of October 2009: 708.37
86% of the members donated during this period, & we comped 14% of the members who donate time or services to the group. We dropped 16 who had not donated or been in communication with us. The $50 was donated to San Joaquin County CFIDS & FM Support Group who furnishes us with a great monthly newsletter. Carolyn & I take care of the office supplies, medical books & newsletters. Jerry
Are you a cancer survivor who had limitations in activities of daily living prior to your cancer?
I invite you to participate in a study to help us understand how cancer survivors who had a functional limitation or disability (such as lupus or fibro) prior to being diagnosed with cancer take care of their health. You can earn up to $ 25 by completing a questionnaire packet. If you are over the age of 21, and interested in participating in this study, please complete the information requested on this page. You can fax it to 512-475-8755 or call 1-800-687-8010 (free), 512-232-3492. You must have completed an active treatment to participate.
Heather Becker, Ph.D.
The University of Texas at Austin
School of Nursing
heatherbecker@mail.utexas.edu
What is your cancer diagnosis? _____________________________
Have you completed active treatment? ____ yes ____ no
Are you limited in any way in any activities because of physical, mental, or emotional problems? ____ yes ____ no
Did this functional limitation exist PRIOR to your cancer diagnosis?
____ yes ____ no
Name______________________________ Email____________________
Address____________________________________________________
City/State/Zip_______________________________________________
Phone ________________________
Date of Birth ____/____/_______
Understanding the Challenges of Cancer Survivors With Pre-existing Disabilities
We know so little about the cancer experience of people who had a functional limitation, such as fibromyalgia, chronic fatigue syndrome, and polio, prior to their cancer diagnosis and treatment. If you have completed active treatment for your cancer, I invite you to participate in a study to help us understand how cancer survivors who had a functional limitation before being diagnosed with cancer take care of their health.
Your information will help health care providers work more effectively with survivors such as yourself. You can earn $ 25 by completing a questionnaire packet. If you are over the age of 21 and have completed active treatment, please call us 1-800-687-8010/512-232-3492 or email us for more information at: sookjunga@mail.utexas.edu
Primary Investigator:
Heather Becker, Ph.D., The University of Texas at Austin.
heatherbecker@mail.utexas.edu
This research is funded by National Cancer Institute.
http://www.utexas.edu/nursing/html/rese ... ancer.html
Hi there……
Since I used the front page for other information, I decided to use this page to up date you where Jerry & I have been and what we are up to. I need to add a bit of an addendum to my doctor’s appointment back in the last newsletter. My liver enzymes were high… I went off the cholesterol med for 30 days… it did make a slight improvement. I am totally off cholesterol meds now, and have since found out that is normal for anyone found to have any liver abnormalities. It is a possibility that it leads to something referred to as “fatty liver”, and maybe cirrhosis of the liver. Only time will tell. (It does not have to do with alcohol use.)
Next I confided with the doctor that I’d had a bout of diarrhea & not able to shake it, asked if I could have an E coli test. That came back negative followed by tests on the balance of bacteria, parasites, & Giardia -- all were negative. Spent several weeks on a pro-biotic but found it really wasn’t needed before being sent to a Gastro-Intestinal specialist. He ran the same tests along with antigens, all still negative. There is no pain or bleeding, just many trips to the bathroom which is partially being helped with one Imodium every 3or four days.
I decided enough testing for now and if anything worsened, I’d seek help “on down the road”. We packed up the motorhome, said our good byes to friends and family in Tennessee and headed for South Carolina. You may remember that South Carolina was the only state we had not been in. It was time to complete our “every state visit”.
South Carolina was such a true southern state with charm, beauty and history to the max! We chose to view it from the city of Charleston, & we certainly were not disappointed. It’s a port town with great walkways and parks on the water side. The town of Charleston is actually on a peninsula surrounded by numerous islands. It’s a military area with bases for the Army, Air Force, Navy, and Coast Guard. We spent our time camping in the Fam(ily) Camp at the Air Force Base. Some of the sites we took in included a horse drawn carriage tour of the city with an 8th generation tour guide who was very well versed on the area; a paddle boat tour that took us out to Fort Sumter; walked thru the old slave auction place that now is an open air shopping center; toured a Tea Plantation (the only one in the U.S. now); and visited a 400+ year old sprawling Oak tree that was absolutely humongous with branches that burrowed into the ground and back out again. We learned that the Spanish moss hanging from the trees is actually a home for tiny mites; all the homes are 3 or 4 stories high with each story having a veranda with hanging fans; the reason for the big hanging fans is both to cause a breeze, and to discourage mosquitoes. It was a great place to spend a week.
We are now at Rainbow’s End in Livingston, Texas & our tiny house. We were greeted with lots of branches, leaves and pine needles to rake, pick up, bag and dispose of…and the problem is, there’s more every day. We did have two trees removed, but don’t think that will make much difference. Our bedroom was not very level so we had someone out to jack it up a bit and secure it from happening again…while under the house it was discovered we had termites and a couple of main boards that were bad. Today we were sprayed for termites and next week they will be back to drill one wall and fill the little holes with foam to keep us from further damage. We are now level, termite free and poorer….but I’m sure we are in a much better place.
There was a full week of Octoberfest Celebration here in the park…this Escapees Camping Group loves to eat. Pasta dinner on Monday, Soup Supper on Tuesday, BBQ was Wednesday, Thursday—Potluck, along with breakfast each morning, and lunches in the park at noon. We had entertainment each night with Blue Grass groups, one man bands, dancing & vocalists. We shared dinner with them each night, but were busy during the day with carpenters, termite sprayers, and tree cutters. It was a fun but busy week.
Where are we spending our winter months? May start with the gulf coast of Texas before heading on to New Mexico & Arizona??? We take it a day at a time. We wish you all a very happy, but mostly a healthy holiday !! We’d love to hear from you all…J & C
Seven Strategies for Reducing Guilt
By Bruce Campbell
Guilt is a common reaction to Chronic Illnesses Some people blame themselves for getting ill thinking they might have avoided becoming ill if they had lived differently. Other people feel guilty about no longer contributing as they used to, while others lament that they aren't the spouse or parent they wanted to be.
Adjust Your Expectations: Guilt is often triggered by perfectionism, holding ourselves to standards that don't fit our new capabilities. Rather than adjusting our standards to meet our new limits, we may measure our performance against either the person we used to be or the person we had hoped to be. You can reduce guilt by adjusting your expectations so that they match your new level of functioning. One place to start is by doing a reality check on your expectations. On the left side of a piece of paper, list all those things you no longer do but think you should do, for example, fix elaborate meals, drive kids to their activities or earn a living. On the right side, write your judgment of whether the expectation is realistic.
Reframe (Change Self-Talk): Part of the process of adjustment is changing our internal dialogue or self-talk, so that it supports our efforts to live well with illness rather than generating guilt. One person in our program says that she used to chastise herself for taking a nap. Her self talk was "you are weak and lazy for having to rest." Now, when she goes to take a nap she tells herself, "I am helping myself to be healthy. I am saving energy." Similarly, when feeling tired, you can say "This fatigue is not my fault. So I don't need to feel guilty about not being able to do everything I used to. You can change your habitual ways of thinking about yourself to make them more accurate and more friendly.
When Feeling Guilty, Shift Your Attention... even if feeling guilty is inevitable, we can control how we respond when feelings of guilt arise. Guilt can draw our attention to ways in which we have failed to live up to our standards and can motivate us to act differently.
If the feeling is not productive, it may be better to respond to guilt by turning our attention elsewhere. As another person wrote, "It's better not to go some places in your head, so I've learned how to control my own thoughts." Another said that when she is caught up in feelings of guilt, she tells herself things like ‘this isn't my fault' .
If You're Wrong, Apologize and Make Amends:
Guilt can be helpful if it motivates you to take better care of yourself in the future and to treat those around you with more care. If being undependable bothers you, you can use guilt over canceling out on commitments as an impetus to be more consistent in pacing. Another person said, "I was so embarrassed by canceling out on people that I promised myself I would do better.
Educate Others (Within Limits):In addition to adjusting your expectations for yourself, others expectations of you will have to change as well. One is to educate people emphasizing that they are long-term conditions that impose significant limits and require adjustments of the person who is ill and those around her. The process of educating family and friends is usually a gradual one, often taking several years.
Learn Assertiveness: Another strategy for reducing guilt is to be assertive, standing up for you by stating what you will and won't do. You must learn to say No! You can be happy to rest while others go do something else…tell them it is OK!
Practice Relationship Triage: A final strategy is to reevaluate your relationships, practicing what we call relationship triage: making explicit decisions about whom to include in your life, concentrating on the more valuable or necessary relationships and letting others go. You may decide that some people will never understand your condition or accept that you are ill. In some cases, you might choose to end a relationship.. Do what is best for you, and limit contact if necessary.
Is Fibromyalgia an Autoimmune Disease?Some websites and books called fibromyalgia an autoimmune disease, but others say it's not. Is fibromyalgia autoimmune? No, fibromyalgia is not an autoimmune disease. In autoimmune disorders, the immune system attacks parts of the body. In fibromyalgia, irregularities in hormones, neurotransmitters (messengers in the brain) and enzymes (substances necessary for chemical reactions) are responsible for symptoms. Some researchers, however, suspect the immune system may be somewhat irregular in people with fibromyalgia.
MY Lupus & Fibro Support Group’s newsletter includes a wide variety of information on lupus, fibromyalgia and related syndromes. The articles are not necessarily the opinion of the group, but are those of the authors. We STRONGLY recommend that you always seek the advice of your physician before trying any new treatment. There is no set charge for the newsletter but we do encourage donations which must be sent to the address on the front page. We always enjoy hearing from you and insist you do contact us once a year to remain on the mailing list. We are a TWO point group which includes our website & forum: www.lupusfibro.com along with this newsletter. Fair Use Notice: This newsletter may contain copyrighted material the use of which has not always been specifically authorized by the copyright owner. Such material is made available for education purposes, to advance understanding of human rights, democracy, scientific, moral, ethical, and social justice issues. It is believed that this constitutes a “fair use” of any such copyrighted material as provided for in Title 17 U.S.C. section 107 of the U.S. Copyright Law. This material is distributed without profit, and often at a financial loss. If you wish to use copyrighted material from this newsletter for purposes of your own that go beyond “fair use”, you must obtain permission from the copyright owner.
