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As a writer, needle artist and photographer, I invite you to share my pursuits with me on this site. Among other things, there is a weekly post called “D-mail” that examines the spiritual meaning in current stories, both personal and news events.  I invite your comments at  cathycongerblog@gmail.com

“The act of putting pen to paper encourages pause for thought, this in turn makes us think more deeply about life, which helps us regain our equilibrium.”  N. Platt

As I have Chronic Fatigue Syndrome as well as fibromyalgia, I like to share the latest information that comes across my desk.  Energy, or rather lack thereof, is a major proble for people with CFS and fibromyalgia.  I thought this article by Bruce Campbell was informative and helpful.  Feel free to pass it on to anyone you know who is struggling with this part of the disease.  Cathy

Finding Your Energy Envelope by Bruce Campbell

Living with CFS or fibromyalgia is frustrating. Not only do the two conditions bring pain and discomfort, they also impose limits. If we fight against or try to ignore those limits, the result is an intensification of symptoms. This article and the next one will propose another way to live with CFS or FM. I’ll suggest how finding and honoring your limits (your energy envelope) can give you some control and improve your quality of life.
The Energy Envelope
To use the idea of the energy envelope, think of your situation as having three elements. The first is your available energy. This is the energy you have to accomplish things. It is limited and is replenished by rest and food. The second is your expended energy, the energy you lose through physical, mental and emotional exertion. The third is your symptoms, fatigue, brain fog, pain, and so on. In this view, if you expend more energy than you have available, you will intensify your symptoms. This is called living outside the energy envelope. An alternative is living inside the energy envelope. If you keep your expended energy within the limits of your available energy, you have a chance to reduce symptoms, and over time may be able to expand your limits.
Many students in our program have found it helpful to think of their life using the idea of the energy envelope in this way. To explain higher than usual symptoms, they may say “I was outside my envelope this week.” This statement may sound like an admission of defeat, but it implies the possibility of control: if you can live differently, you may be able to gain greater control of your symptoms.
Finding Your Limits: A Quick Answer
If you would like a general idea of your limits, rate yourself on the CFS & Fibromyalgia Rating Scale. Most of the students in our course have rated themselves between 25 and 45 at the start of the course, but we have had people across almost the full range of the scale.
Everyone’s Situation is Different
CFS & Fibromyalgia Rating Scale
CFS & Fibromyalgia Rating Scale
100 Fully recovered. Normal activity level with no symptoms.
90 Normal activity level with mild symptoms at times.
80 Near normal activity level with some symptoms.
70 Able to work full time but with difficulty. Mostly mild symptoms.
60 Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.
50 Able to do about 4-5 hours a day of work or similar activity at home. Daily rests required. Symptoms mostly moderate.
40 Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.
30 Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.
20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.
10 Mostly bedridden. Severe symptoms.
0 Bedridden constantly. Unable to care for self.Each person’s limits are different, because each person’s situation is unique. To understand your limits, I suggest you look at three factors.
The first, which you can think of as the medical aspect of your situation, is your illness or illnesses. While some people have just CFS or fibromyalgia, about two thirds of the people in our program struggle with two or more medical problems. The most common pattern is people who have CFS and fibromyalgia, but frequently people who have one or both of these conditions also have one or more other medical issues, such as arthritis, back and spinal problems, depression, food and chemical allergies, irritable bowel syndrome (IBS), lupus, myofascial pain, sleep disorders like apnea and restless legs syndrome, and thyroid problems. (For more, see our article on overlapping and related conditions.)
Long-term illness is much more than a medical condition. The second factor that defines your unique situation is your general life circumstances. Illness will have a different impact depending on such things as your stage in life and family situation. In this context, finances and support are particularly crucial.
Some patients find their financial situation to be similar to what it was before they became ill. They may be supported by a spouse or receive disability payments that replace their previous income. For others, however, financial pressures can be great, even overwhelming. Some may live alone, trying to get by on little or no income. Others may feel forced to work when their bodies are asking for rest.
Patients’ levels of support can vary greatly, also. The term “support” applies to both practical and emotional help. Practical support may mean assistance with tasks such as grocery shopping, cooking and cleaning. Emotional support means feeling that someone understands and cares. Some patients have supportive spouses or other family members, while others may find themselves in stressful circumstances. Some people have good friendship networks, others not. Many patients’ level of support can be improved through effort.
The third factor is coping skills. Your ability to live well with chronic illness depends in part on your own resourcefulness. We have seen many people respond to adversity with flexibility and resilience. Luckily coping skills, like other skills, can be learned and improved through practice.
In summary, each person’s situation is different. Your limits will be shaped by your particular combination of illness, financial and family circumstances, and coping skills. While some factors are fixed, support and coping skills can be improved over time.

Weight Gain: Why It’s a Problem With Fibromyalgia, and What to Do About It
by Mark J. Pellegrino, MD*
July 13, 2009
Dr. Pellegrino has seen thousands of fibromyalgia patients in his practice at Ohio Pain & Rehab Specialists, and has had fibro himself since childhood. This information is reproduced by popular demand, and with his kind permission.*

__________

A common problem observed in Fibromyalgia is weight gain. Many patients complain to me that weight gain became a major problem once Fibromyalgia established itself.

It is not unusual for a person to put on a 25- to 30- pound weight gain in the first year after Fibromyalgia was diagnosed. Various factors are involved in weight gain and include:

1. Decreased Metabolism. Various hormone changes can slow down the metabolism in Fibromyalgia. Studies have shown hormone deficiencies or imbalances (cortisol, thyroid, serotonin, growth hormone) in Fibromyalgia. Insulin and other hormones are probably affected as well.

Dr. Leslie J. Crofford** has described hormonal abnormalities in Fibromyalgia and how they interfere with physiologic communication between the brain and the body. Closely linked with hormones is the autonomic nervous system. The autonomic nerves are the small nerves vital in the coordination of the body’s hormones, and thus they play a role in the regulation and delivery of nutrients to our cells.

The hypoglycemic roller-coaster effect is a good example of the combination of hormonal endocrine imbalances and autonomic nervous system dysfunction leading to hypoglycemic symptoms. Overall, neuroendocrine abnormalities in Fibromyalgia probably interfere with the body’s metabolism (by decreasing it), and part of the treatment involves replacing or supplementing hormones to help improve the body’s metabolism.

A slower body metabolism means fewer calories are burned on a daily basis to “run” the body’s machinery. If fewer calories are burned with no change occurring in calories consumed, weight gain will result over time. Also, women in their late 30s and 40s often develop Fibromyalgia along the same time as early menopause (decreased estrogen). This can further decrease metabolism and increase the potential for weight gain.

2. Hypoglycemia [abnormally low blood sugar]. As I mentioned earlier, increased sensitivity to insulin will result in too much glucose being removed from the blood stream and pushed into the muscle. All this extra glucose pushed into the muscles has nowhere to go as the muscles have very limited ability to store glucose.

The body is forced to go into a fat-storing mode where it converts this extra glucose into fatty tissue. Contrary to the popular myth that obesity is a result of eating too much fatty foods, obesity is usually the result of eating too many carbohydrates. A carbohydrate rich diet causes weight gain by converting the extra glucose into fat and, if Fibromyalgia causes more insulin activity and sensitivity, then the weight gain can be even greater.

Another myth is that most overweight people overeat. Actually, most overweight people do not overeat. They may have a craving for carbs, and the carbs are easily converted to fat. Fibromalgia facilitates this process. A diet modified in protein and lower in carbs may help.

3. Medicines. Side effects of medicines used to treat Fibromyalgia can cause weight gain by decreasing metabolism, altering hormones, causing fluid retention, and increasing appetite. The most common offending medicines are the antidepressants.

Medicines such as estrogen and prednisone can also contribute to weight gain. If certain medicines are causing weight gain they may need to be stopped or adjusted depending on the individual’s medical needs.

4. Decreased activity due to pain. People with Fibromyalgia hurt more and are not as active because activity increases pain. Thus, it is difficult to increase the energy expenditure or calorie burning related to exercise and activity. Less calories burned can mean weight gain. Any treatment program in Fibromyalgia must include attempts at increasing overall activity level.

RATIONALE

We’ve discussed some of the basic problems of Fibromyalgia, the metabolism changes and the dysfunctional carbohydrate responses, especially. The problems contribute considerably to many of our most bothersome symptoms, including aching; fatigue; brain fog; irritability; anxiety; dizziness; carbohydrate craving; irritable bowel syndrome; food intolerance; and food sensitivity.

The American “diet aggravates and perpetuates our Fibromyalgia problems. We may have tolerated the higher carb, low fat diet before we got Fibromyalgia, but since we got Fibromyalgia, this diet no longer works for us and it’s probably making it worse.

• Because of our slow metabolism, it is difficult for us to eat less and notice a difference.

• Because of our pain, it is difficult for us to increase our exercise level to burn off more calories.

• Ideally, we need a diet that improves the efficiency of our calories burned by providing us with the right “quality” of food to enhance our metabolism and calorie-burning abilities.

FOODS THAT ARE OKAY

1. Good proteins.

• Meats, such as lean meats, skinless chicken, turkey and fish. Lean cuts of steaks, sausage, and bacon contain higher amounts of saturated fats so they should be kept to a minimum.

• Eggs. This breakfast staple is a great source of protein; egg whites are healthier.

• Tofu.

• Soy meat substitutes.

• Dairy products. These include cheese, cream, butter, skim milk, cottage cheese and unsweetened yogurt. Try for low fat dairy products.

• Legumes. This class includes beans, peas, peanuts, lentils, and soybeans.

2. Good carbohydrates

• All vegetables. Vegetables are a source of carbs that are highest in fiber and lowest in sugar. Some vegetables such as corn have more carbs than others.

• Fresh fruits. Avocado, raspberries and strawberries have the least carbohydrates of fruits. Avoid dried fruits.

3. Good fats

• Plant oils, especially olive and coconut oil. Other vegetable oils are acceptable including soy, corn, sunflower and peanut.

• Fish oils (rich in Omega-3)

• Almonds

• Avocados

4. Others

• Salad garnishes which include nuts, olives, bacon, grated cheese, mushrooms and other vegetables are allowed.

• Flaxseed oil. A healthy supplement which contains essential fats.

• Artificial sweeteners and sugar-free beverages are allowed in moderation. If you feel you are sensitive to aspartame, avoid products that contain it (NutraSweet) or substitute a different artificial sweetener, such as sucralose (Slenda) or saccharin (Sweet’n Low). Stevia is a sweet supplement alternative to sugar. Xylitol is another one of nature’s sweeteners like Stevia that won’t raise blood sugar levels and can substitute for sugar.

[Note: Dr. Pellegrino’s detailed list of FOODS TO AVOID includes what you don’t see here, such as sweets; breads & pastas, especially white-flour based; rice, especially white; potatoes; partially hydrogenated oils (trans fats); carbonated drinks; alcohol except in moderation. Other sections address special eating problems such as food sensitivities & IBS, and Nutritional Approaches in FM - Deficiencies, Symptoms, and Supplement Strategies.]

SPECIFIC DIET STRATEGIES

1. Think Protein Always

A key with this diet is not to eat any carbohydrate foods by themselves, even if they are considered good carbs. “Orphaned” carbs will increase the risk of hypoglycemia/insulin hypersensitivity in someone with Fibromyalgia, so foods that have some protein in them should be consumed every time we eat. Therefore:

• We shouldn’t eat pancakes and syrup for breakfast because it doesn’t contain any protein. Insulin is controlled by the balance of protein and carbs each time we eat.

• If we want a salad for lunch, we should not just eat plain lettuce and vegetables. We need to have a protein source in our salad as well, such as chicken, tuna, turkey, eggs, cheese and more.

• We should not eat a plain spaghetti supper. We should have spaghetti and meatballs (made with lean ground chuck meat) or lean sausage.

• If we crave a snack, we shouldn’t eat a sugar cookie. A small bag of cashews would be a better protein-laden choice for a snack.

Once you are trained to think about protein every time you put something in your mouth, it becomes easier to stay within the framework of the Fibromyalgia diet.

2. Avoid The Rush

Hypoglycemia is often the result of a sudden surge of glucose in our bloodstream after eating a carbohydrate-rich food. The Glycemic Index of foods is a measure of how fast the carbohydrate triggers the rise in circulating blood sugars. A GI over 70 is high. Examples of food with high GI are: Rice Crispies – GI 80; corn muffin – GI 95; mashed potatoes – GI 88.

To avoid a carbohydrate surge, take a few bites from proteins first whenever you eat. Even if you are eating good carbs, if you take the first few bites from protein, you can minimize the carbohydrate “rush”:

• Eating proteins first activates the protein digesting enzymes and slows the absorption of carbohydrates.

• Plus, proteins require hydrochloric acit for proper digestion, carbohydrates don’t. If we eat carbohydrates first, hydrochloric acid may not be activated and subsequent proteins eaten may not be properly digested.

Foods rich in fiber and fats also slow the absorption of carbohydrates.

3. Eat Until Full

Try to eat at least 3 meals a day and have 1-2 snacks. At meals, eat until you are comfortably full but not stuffed. Some people with Fibromyalgia actually do better by eating 5 to 6 smaller meals a day or by eating 3 smaller meals and 2 larger snacks.

Those who are bothered by irritable bowel syndrome sometimes can do better by eating smaller portions more frequently.

Eat slowly and take your time to chew food well.

4. Weekdays: Behave!

I recommend that the Fibromyalgia diet be followed strictly for 5 days each Monday through Friday, and I allow people to splurge a little on the weekends. That is, the diet is 5 days “on” and 2 days not so “on.” This allows people to follow the basic rules during the week (more proteins, good carbs, good fats) but also allows the anticipation of favorite foods over the weekend…

….This Fibromyalgia diet can help decrease sugar cravings, help rebalance your body’s chemistry, especially insulin and blood glucose levels, and can help you shed weight.

_______

* Excerpted with kind permission from Fibromyalgia: Up Close & Personal, © 2005 Mark Pellegrino, MD, and Anadem Publishing Inc. all rights reserved. Readers may purchase this book through Dr. Pellegrino’s office at Ohio Pain & Rehab Specialists (330-498-9865; toll free 800-529-7500).

** “Neuroendocrine Abnormalities in Fibromyalgia and Related Disorders,” Leslie J. Crofford, MD, American Journal of Medical Science. 1998;315:359-366. Dr. Crofford is Associate Professor of Internal Medicine, Rheumatology, at University of Tennessee Health Sciences Center.

An infomative article appeared on March 5, 2011 in the Saturday Magazine of the Wall Street Journal written by Amy Dockser Marcus.  I have had  fibromyalgia and Chronic Fatigue Syndrome since 1986 and like to stay on top of the research literature when I can.  This article was a great overview. If you are interested in reading about Chronic Fatigue Syndrome, please pursue this .

http://online.wsj.com/article/SB10001424052748704005404576176823580854478.html?mod=WSJ_newsreel_lifeStyle

Gearing Up for the Holidays
by Don Uslan MA, MBA, LMHC

The holiday season is a time of year that most people look forward to. After all, gatherings with family and friends should be full of enjoyment. So why does the thought of having company in your home or hosting a holiday event conjure up feelings of stress and awkward moments? What can you do so that the holidays will not land you in the dumpster emotionally and physically? People with fibromyalgia (FM) and chronic fatigue syndrome (CFS) often face special predicaments that keep them from fully enjoying this time of year. Turn a new leaf, and do what you can to prevent your less-than perfect health from putting a damper on the season’s festivities. Gear up to have a ball this year by reading the following common scenarios and advice on how to handle them.

Scenario: Company is coming, the house is a mess, and you don’t have the energy to pick up. How are you going to get your house cleaned? You can suggest that the family gatherings take place at someone else’s home, but you believe that year after year of not hosting builds resentment toward you. You feel awful when you have to say NO because you want to see your family too. As a result, the holidays are a time of feeling badly about yourself, and how can you look forward to that?
Tasks on a sheet of paper, and when your energy allows, start dividing up what you are able to do and what you will ask others to do. Be sure to give them plenty of notice, and call them a couple of times to confirm. A little humor won’t hurt: “You’ve agreed to pick up the soft drinks. If you forget, you may end up as the next Rudolph the Red Nosed Reindeer and on the roof with Santa.” Consider sending out reminder notes, e-mails, or voice mails so people don’t forget. A little “nudging” will go a long way in getting things done. Make a schedule for various tasks at least three weeks in advance. Put “paper to pencil” and note the dates that specific items need to be done by. Allow time for human error and forgetfulness by adding a couple of days if something doesn’t get done.

Scenario: Kids and grandkids want entertainment. This is not the time of year when you drop them off at the local mall or movie theater for a few hours of quiet time for yourself. Youngsters relish the family festivities and want you to be a part of them as well. How do you appease a child who is too young to comprehend chronic illness? What fun activities can you do together to retain your “connection” with the children of the family? Are there ways to pace activities with children to make them feel special throughout the holiday season?
If you are the aunt, uncle, grandmother, or grandfather of little children coming to your house, there is no reason that your physical limitations should dampen their joy of being in your home and spending time with you. You may not be the energetic entertainer you once were (and neither is anyone else), but you can still be the “focus of fun” or the “prophet of play.” Wear a hat, colorful clothing, or anything that sparkles. If you are up to it, you can even wear a costume or paint your face. Looking like fun doesn’t take much energy. Set up a corner of the house as the “toy zone,” and leave out whatever games or crafts you want. Lay plastic down so children feel comfortable making a mess, then, just scoop up the plastic and throw it away when they are done (the plastic is cheap and sold with paint supplies). Make sure to have a constant source of “goodies.” Children don’t care where the food comes from (it can be inexpensive store-bought candy), as long as it’s there and you deliver it with love, affection and attention. Sit with children, read them stories, or listen to their stories. This not only takes minimal energy, but may even be somewhat restorative. Rent videos. (Confession: I watched “Pinocchio” 32 times with my son David when he was 2 years old over the course of a year–I’m not sure who enjoyed it more. I stopped watching it when he started calling me “Gepetto” after I pulled his nose.) Your mind may be fatigued, your body may be in pain, but your creativity can still flourish while you conserve energy.

Scenario: Perhaps you do not have strong ties to your family, or no family at all. What can you do so that the holiday season does not intensify your loneliness?
The term “Holiday Blues” is a very real phenomenon. During the holiday season, people remember the past through the lens of longing for warmth, safety and closeness. During the darkness of winter, you may compare the present with the past, and it may not fare too well. This is especially true if your social support is limited. Isolation is the worst psychological consequence of any illness. It produces a type of depression that can be hard to break out of. Try to preserve whatever social support you may have by making contact with people from the past. Send a year-end letter highlighting stories from your life or anything you think will be amusing. It can be a form letter photocopied on colorful paper, with a short personal note at the bottom. Many will call or write you back, providing you with a sense of connectivity. Give small gifts-perhaps homemade-to neighbors, just because it may feel good. Do whatever you can to break out of isolation before the holiday season. Join a church, synagogue, or any other community group … and enjoy the presence of others. Attend a lecture. Take a class. Go to a concert. Many of these activities are inexpensive or free if you look around. If you are too blue to participate, then enjoy the company of people and listen to conversation. Try to attend to things outside of yourself. Don’t become cooped up indoors; spending time outside of the house helps to combat feelings of isolation. Check out the local mall, if only for the decorations or to “people watch.” Staying alone indoors begets loneliness, which breeds depression. Consider getting a dog or a cat. Some of the best therapy comes from You must conserve your energy. Be sure not to engage in activities or get caught up in situations that make you “feel bad.” Try to gain self-confidence in what you are realistically able to do and acknowledge the real limitations your illness has imposed, even if it is difficult for you (and your loved ones). The more you can accept your limitations, the more those who love you will do the same. Also, don’t view acceptance as a form of giving up, but rather as a necessity for moving on with life.

Keep in Mind … the devotion and love of a pet. The warmth, affection, and interaction can make you appreciate being alive. But, make sure you have the energy to take care of a pet, especially a kitten or a puppy, who require lots of training and extra attention until they mature. Cost is another factor to consider. Even if you get a pet for free, their care can be expensive. The holiday season may be an opportune time to volunteer to dog- or cat-sit for a neighbor … a form of “rent a pet” to see how you do. Remember, the best way to handle isolation is to try to avoid it. Plan NOW to avoid becoming lonely by appreciating the power of being with people and your important need for human contact. Even if fatigue contributes to your feeling that you aren’t up to being with others, realize that you have a lot to offer other people (and pets), even if you don’t know it right now.

Scenario: Living under scrutiny. It is nearly impossible to hide the medications you take, your mid-day nap or after-work crash on the couch, not to mention all of the proactive things you do to make it through the day (stretching sore muscles, applying heat wraps, long soaks in the tub, etc.). From the perspective of your extended family, you appear obsessed with your health and very much a hypochondriac. However, spending the entire holiday trying to explain your illness to other family members seems self-defeating. It gobbles up energy you don’t have and forces you to dwell on the one subject that you want to have a break from. What should you do?
Make it clear that you have a medical condition that forces you to take extra care of yourself. Explain that you don’t wish to make someone else uncomfortable, but that you need to make sure you don’t over-extend yourself. And then … here comes the “white lie” … tell them you have “arthritis”! Yep, after all these years of trying to get an accurate diagnosis, find the right healthcare providers, and receive the proper treatment, you are going to fib and say, “arthritis.” Why? Because people don’t normally challenge arthritis. Friends and family members have a clear understanding and acceptance of arthritis. They know it causes pain and functional limitations, and usually don’t question it. Almost everyone has had a grandmother or aunt with arthritis, and the popular press seems okay with it. If it makes it easier on you, why not simply call it “arthritis” and leave it at that during the holidays? Now, your job is to say no more. You don’t have to explain, justify, share, prove, or compare. You simply have a common medical condition called arthritis. You can only do things in moderation and must take time out to rest. Sometimes, it includes excusing yourself when it’s boisterous and loud, or asking for help in clearing dishes when there are plenty of able-bodied people around. If you aren’t able to perform a task, don’t complain or explain yourself. Stay within your limits to avoid exhaustion and a painful symptom flare up. You can be a gracious host, a friendly conversationalist, a welcoming relative, as long as you do things in moderation. If you quietly excuse yourself to go to your room to rest, no one need be the wiser. Plenty of healthy people do this, so why can’t you? If you need a cane, use one and don’t feel obligated to explain yourself. If asked, simply say, “I need a little extra support,” and then ask them to pass the Christmas cookies. Don’t make a public display of needing to recline or a verbal excuse for your inability to lift or carry. Your body may experience pain and fatigue, but your heart can express joy at this family gathering; your spirit can be welcoming of loved ones; your character can be as charming and as humorous as your limited energy allows. This can be a beautiful and memorable holiday season for you.

Reprinted from Issue #71, October 2005 PO Box 31750 Tucson, AZ 85751-1750 (800) 853-2929 • www.fmnetnews.com Article is for informational purposes only. You must consult your physician for treatment. This article is copyrighted by Fibromyalgia Network.

Laura is pursuing her PhD in archeology, despite her struggle with fibromyalgia.  We support one another!

One of the factors I contend with in my life is fibromyalgia, which I have had for 20 years.  I want to maintain a section of my blog which addresses this disease for those who don’t know about it and for those who have it and need help and advice.  One of the most helpful resources I haver found is the Fibromyalgia Network which has been an advertisement -free resource for people with Fibromyalgia (FM)/ Chronic Fatigue Syndrome (CFS) for 22 years now.  Their journal is excellent for both patients and health care providers.  Here is a comprehensive summary of what fibromyalgia is - taken from the January 2010 issue:

What is Fibromyalgia?

Fibromyalgia produces widespread pain, disturbed sleep, and exhaustion from head to toe.1 Fibromyalgia means pain in the muscles, ligaments, and tendons—the soft fibrous tissues of the body. Although the muscles hurt everywhere, they are not the only cause of the pain. Instead, the diffuse, body-wide symptoms are greatly magnified by malfunctions in the way the nervous system processes pain.2,3

Regional muscle pain not related to arthritis or the nervous system also occurs in the majority of people with fibromyalgia.4 Patients describe this as firm knots in the belly of muscles, often causing restricted movement and radiating pain.5 These muscle nodules are myofascial trigger points and some researchers suspect that these painful areas overlap with the tender points used to diagnose fibromyalgia.6

The symptoms of fibromyalgia are unpredictable and most patients are frustrated by their physical limitations and inability to make plans. You may feel as though you have to “push yourself” to get things done.7

Most patients with fibromyalgia say that their muscles feel like they have been pulled or overworked, and sometimes they twitch or cramp.8 Even the skin may feel badly sunburned.9 To help your family and friends relate to your fibromyalgia symptoms, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply.

Given that the symptoms may be similar to a viral flu, experts in the field of fibromyalgia and chronic fatigue syndrome believe that these two illnesses may be one and the same.10 Gulf War syndrome also overlaps with these two conditions.11

Common symptoms:

Pain - Fibromyalgia pain has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, stabbing, or intense burning. Quite often, the pain and stiffness are worse in the morning, and muscle groups that are used repetitively may hurt more.12 In addition, the severity of regional pains (particularly those in the head, neck, shoulders and lower back) are a strong predictor of a person’s overall pain rating.13 The muscles in these painful areas can feel tight, knotted and rope-like. Pressing on the firm, knotted region hurts and often causes the pain to shoot to other muscles when a myofascial trigger point is present.

Fatigue - This symptom can be one of the most incapacitating for people with fibromyalgia. Patients may feel as though their arms and legs are weighted down by concrete blocks and their bodies may be so drained of energy that every task is an effort.7

Memory and Concentration - Difficulty concentrating and retaining new information may seriously interfere with everyday mental tasks.14 This symptom is referred to as “fibro fog” and may hinder job opportunities. In particular, fibromyalgia patients have serious difficulty retaining new information if they are distracted.15

Sleep Disorders - Patients report trouble falling asleep and more importantly staying asleep, but the unrefreshing quality is what makes the disorder much worse than insomnia. Repeat arousals prevent patients from reaching deep, restorative sleep.16 As a result, the night is spent in “quasi-sleep” and patients wake up feeling as though they have been run over by a Mack truck. An overnight sleep study will likely show repeat arousals with bursts of awake-like brain activity occurring throughout the night, but a specific sleep disorder may not be identified.17

Exercise Difficulties - Moderate intensity exercise activates a powerful pain-relieving system in healthy people, but it makes the pain of fibromyalgia worse.18 This is why initiating an exercise program may make you achy and tired. However, if you do not exercise on a regular basis, the performance of normal daily living activities will start to cause more pain. Rather than give in to the increased pain sensitivity related to exercise, patients are advised to do mild exercise in short intervals (such as five minutes at a time) to keep the muscles fit while not over-taxing them. A study in Sweden revealed that half of the fibromyalgia patients found it impossible or difficult to climb stairs and a majority of patients could not run. Just standing for five minutes was extremely taxing to one-fourth of the patients.19

Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain and bloating, abdominal gas, and nausea represent symptoms commonly found in roughly 40 to 70 percent of fibromyalgia patients.20

Chronic Headaches - Recurrent migraine or tension headaches are experienced by 50 to 70 percent of fibromyalgia patients. Most headaches are rated as severe, occur at least two times per week, and often have a migraine component.21 Referred pain from myofascial trigger points in the shoulder, neck, and head muscles are suspected to be responsible for most tension-type headache and also play a role in migraines.22

Jaw Pain - Temporomandibular joint dysfunction causes tremendous jaw-related face and head pain and affects one-quarter of fibromyalgia patients. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.23

Other Common Symptoms - Non-cardiac chest pain, acid reflux, irregular heart beat or palpitations, shortness of breath, numbness and tingling sensations, the feeling of swollen extremities, chemical sensitivities, nasal congestion, premenstrual syndrome and painful periods, irritable bladder, interstitial cystitis, vulvodynia (vulvar pain), difficulty focusing eyes, dry or burning eyes and mouth, dizziness or feeling faint, profuse sweating, muscle weakness and balance issues can occur.24,25,26 Fibromyalgia patients are often sensitive to odors, loud noises, bright lights, some foods, and often the medications that they are prescribed.27

Aggravating Factors - Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety, and over-exertion can all contribute to fibromyalgia symptom flare-ups.12

Fibromyalgia Quick Facts

  • Affects 3 to 5 percent of the general population28
  • Occurs in people of all ages, even children
  • Men develop fibromyalgia too, although more women are diagnosed with it
  • Symptoms are chronic but may fluctuate throughout the day
  • Roughly one-quarter of people with fibromyalgia are work-disabled12
  • FDA approved the first drug for fibromyalgia in 2007 and more treatments are being developed

Exerpts from the Fibromyalgia Network 2009 enews Alert

Should I Get a Flu Shot?

Many fibromyalgia patients have expressed concern by reports of the seriousness of the H1N1 swine flu virus and have asked if vaccination is advisable. Charles Lapp, M.D., director of the Hunter-Hopkins Center, an FM/CFS research and treatment facility in Charlotte, NC, does not generally recommend flu shots to most of his patients, but there are exceptions. He addresses details on who may or may not be a good candidate for a flu shot on the Resources page of his website.

If you are waiting to obtain a flu shot, Lapp suggests:

  • avoid crowds and sick people (especially coughers and sneezers)

  • wash your hands frequently or use alcohol-based hand cleansers

  • avoid touching your eyes, nose, or mouth with your bare hands

  • stay home if you get sick to avoid spreading the virus

  • call your doctor before going to an emergency room

Symptoms of the flu include fever, cough, sore throat, runny or stuffy nose, body aches, headache, chills, fatigue, sometimes diarrhea and vomiting. It’s important to note that not everyone with flu will have a fever. The Center for Disease Control reports that during the first week of November, overall flu activity in the United States remained high.

Surviving the Holidays Without a Relapse

Thanksgiving really kicks off the holiday season for 2009. For most people, the holidays can be joyous and hectic at the same time. It’s easy for fibromyalgia patients who want to spend quality time with family and friends to overextend themselves and hurt later.

Whatever your circumstances, it’s essential that you make the time to do the things that bring you happiness and provide you with a little extra comfort during the cold season. Don’t view this as being self-centered but rather self-survival. You have put up with the pain and unexpected symptoms of fibromyalgia (FM) all year long, so it is only fitting that you consider your own well-being and try doing one or more of the following each day:

  • Sit in a hot tub or sauna to warm up and relax.

  • Take a long hot bath, but make it special with scented candles and other bathtub comforts.

  • Take a stroll with a partner or friend during the middle of the day to absorb some free vitamin D and marvel at the scenery (weather permitting, of course).

  • Lounge by the fireplace, soaking up the warmth and let the dancing flames just mesmerize you.

  • Give plenty of hugs (and receive them as well) to your kids, grandchildren, partner and other special people in your life. If hugging hurts, then just give a snuggle.

  • Spend quiet time each day reading a book or entertaining magazines, perhaps while sipping a special herbal tea or beverage.

  • 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, heating pads, and ointments such as IcyHot, OrthoGel, and BioFreeze (they all contain peppermint oil to soothe sore muscles). Don’t worry about looking fashionable. Just throw a scarf over your wrap and put your comfort first.

  • If you have out-of-town guests, close your 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).

The point is, you need to take good care of yourself during the next month so you will be ready and energized enough to face the new year. Don’t just survive, thrive.

I have had Chronic Fatigue Syndrome along with Fibromyalgia for over 20 years.  The most helpful Chronic Fatigue Syndrome organization since the beginning has been the Chronic Fatigue Syndrome Association.  They have been publishing the CFS Chronicle for a long time and it has been extremely informative.  They are also very avid acivists in Washington DC and have accomplished a huge amount in the area of funds for major research at the CDC, INH, and many universities around the country.  They publish research results in the Chronicle, as well as helpful articles for laymen, physicians, patients , and care-givers.  To access this organization  go to www.CFIDS.org  You will find info about how to receive the Chronicle and lots of other resources and information.  They just announced a new site as well.  www.solvecfs.org   Check it out as well.

Currently I am going through a crash cycle in my fibromyalgia condition.  It’s not surprising considering what I’ve been up to (or rather, not up to?)  the last six months.  I’m trying to participate in a water aerobics class but I may have to quit, or at least cut back, becaue I feel so much pain and weakness the day after.  Anyway, I know I have to observe enforced rest for awhile, which I hate!

Today the following article came from the Fibromyalgia Health Watch newsletter (a service provided by www.prohealth.com )  and caught my eye.  In all my business and activities and lots of traveling in the last 6 months, I have forgotten to live within my envelope.  This article is a good reminder and is insightful for those of you who don’t realize that this is something a person with fibromyalgia and/or Chronic Fatigue Immune Dysfunction Disorder (or CFS) has to deal with daily.  The article is rather lengthy, but very helpful.

Find Your Limits - How to Put the Push-Crash Cycle Behind You

by Bruce Campbell, PhD*
September 30, 2009

It’s not just physical activity that can drain energy needed to gain better control over symptoms, Dr. Campbell emphasizes, it’s also mental and social activity, and the drain of emotions and stress.

Dr. Bruce Campbell is a recovered ME/CFS patient and former consultant to self-help programs for chronic illness at Stanford Medical School. His nonprofit site (www.cfidsselfhelp.org) offers articles, low-cost online self help courses in moderated discussion group format, and free follow-up programs & support.

__________________________

Having a chronic illness can often feel like living on a roller coaster. You swing between intense symptoms and rest, in a frustrating cycle of push and crash.

When your symptoms are low, you push to get as much done as you can. But doing more than the body can tolerate, you intensify your symptoms and crash. You then rest to reduce symptoms, but then, if you feel frustrated and try to make up for lost time, you may plunge into another round of over-activity leading to another crash.

There is an alternative to this cycle of push and crash: living within limits. Your activity level and the way you live your life affect your symptoms. If you honor your limits, you can gain some control over your symptoms and bring predictability to your life. This article explains how to find your limits; the next article “Finding Your Energy Envelope” shows how to live within them.

The Energy Envelope

One way to explore the idea of limits is through the concept of the Energy Envelope. You can think of your situation in terms of three factors:

1. Available energy: The energy you have. It is limited, and is replenished by rest and food;

2. Expended energy: The energy you lose through physical, mental & emotional exertion; and

3. Symptoms: fatigue, brain fog, pain, and so on.

If you expend more energy than you have available, you will intensify your symptoms. This is called living outside the Energy Envelope. This approach commonly leads to the push and crash cycle described above.

An alternative is living inside the Energy Envelope.

• If you keep your expended energy within the limits of your available energy, you can gain some control over your symptoms.

• If you accept your limits (keeping your activity level within the limit of your available energy), you can reduce symptoms and the severity of relapses, and over time may be able to expand your limits.

This is an upward spiral.

The Fifty Percent Solution & the Bowl of Marbles

Let me suggest a couple of ideas you might use if you wanted to apply the concept of the Energy Envelope.

The first is called the fifty percent solution. Each day estimate how much you think you can accomplish. Then divide this in two and make it your goal to do this lesser amount. The unexpended energy is a gift of healing you are giving to your body.

The second idea is to imagine your available energy as a bowl of marbles. You have a limited number of marbles to use each day. The number may vary from day to day. Physical activity uses some, but mental and emotional activity do as well. With every activity, you take one or more marbles out of the bowl, remembering that stress is a big marble-user and so lessening stress will preserve your supply of marbles for other uses.

The overall idea in both the fifty percent solution and the bowl of marbles is that our limits force us to set priorities in order to control symptoms and bring stability to our lives. Both techniques are ways you can reframe your situation to give yourself permission to do less in order to improve quality of life.

Defining Your Limits

Another way to use the idea of the Energy Envelope is to develop a detailed description of your limits.

This can give you a thorough understanding of what you individually have to do to minimize symptoms and improve your quality of life. If you want to do this, I suggest you look at five different aspects of your life:

1. Your illness,

2. Activity,

3. Rest,

4. Emotions,

5. And stress.

(For more, see the discussion on how to complete the Energy Envelope Log in the “Energy Envelope” chapter of our course textbook. Scroll down)

Illness: The severity of your illness suggests your safe level of activity. To get an initial idea of a safe activity level, you can rate yourself in comparison to other patients on the CFS/Fibromyalgia Rating Scale .

Most of the students in our course have rated themselves between 25 and 45, but we have had people across almost the full range of the scale.

Activity: This factor refers to how much you can do without making yourself more symptomatic. You can divide this into three areas: physical, mental and social activity.

Physical activity means any activity involving physical exertion, including housework, shopping, standing, driving and exercise.

• To define your limits in this area, estimate how many hours a day in total you can spend in physical activity without intensifying your symptoms.

• Because the effects of exertion can be cumulative, you might ask yourself how many hours a day you could sustain over a week without worsening symptoms.

• Also, you can note whether some parts of the day are better than others.

• Finally, you can estimate how long you can do various specific activities, such as housework, shopping, driving, etc.

Mental activity means activities requiring concentration, like reading, working on the computer or balancing a checkbook. Three questions to ask in this area are:

• How many hours per day can I spend on mental activity?

• How long can I spend in a single session?

• What is my best time of day for mental work?

Some people, for example, find they can work at the computer for 15 minutes or half an hour without problem, but that they experience symptoms if they work longer. They may be more productive at some times of the day than at others. They may be able to avoid triggering brain fog or other symptoms if they have two or more brief sessions a day rather than one long one.

Social activity refers to the amount of time you spend interacting with other people. I suggest you think of social activity in two forms: in person and other (e.g., phone and email). Questions to ask yourself about each type include:

• How much time with people is safe for me in a day? In a week?

• Is the amount of time dependent on the specific people involved and the situation? (You may tolerate only a short time with some people, but feel relaxed around others.)

• For in-person meetings, you might also ask yourself whether the setting makes a difference. Meeting in a public place or with a large group may be stressful, but meeting privately or with a small group may be OK.

Rest: This factor refers to the quantity and quality of sleep at night and rest during the day. Questions you might ask about sleep include:

• How many hours of sleep do I need?

• What is the best time to go to bed and to get up?

• How refreshing is my sleep?

Daytime rest means lying down with eyes closed in a quiet environment. Questions here might include:

• How much total daytime rest do I need?

• How frequently should I rest?

Emotions:
Strong emotions like fear, anger, grief and depression are normal reactions to having a chronic illness. This factor refers to the emotions we experience as part of being ill and also to the sensitivity we have to emotionally-charged events. Questions in this area include:

• What emotions are important in my life now and how intense are they?

• What is the effect of emotionally-charged events? (Events with strong emotion often trigger the release of adrenaline, which can be very taxing.)

Stress: This refers both to the sources of stress in our lives - and to our sensitivity to those stressors. In terms of sources, three are crucial: finances, relationships, and things.

• Finances can impose severe limits and be a major source of stress.

• Relationships can be sources of support and help, sources of strain or both.

Physical sensitivities refers to:

• Food,

• Sense data (light and/or sound sensitivity, sensory overload),

• Seasons and the weather (intensification of symptoms at certain times of the year or with different weather conditions).

Your Energy Envelope is a list of your limits. Having an understanding of your envelope can help you to set priorities.

After completing the exercise of defining your envelope, you might decide that poor sleep was the crucial issue for you at this time. Or you might find that a stressful relationship needs attention. In any case, the idea is to understand your limits in detail, so you can control symptoms and decide where to focus your efforts for improvement.

I have had fibromyalgia and Chronic Fatigue Syndrome since 1986.  However, as was common then, nobody had heard of it, and my case was not diagnosed for another 3 years.  I don’t have time right now to tell my whole story, nor do I have time to explain more about this disease (later, dude).  I simple wanted to begin posting fibro-related information in that category in my blog. 

 I have found one of the most valuable resources on fibromyalgia for patients, care-givers, and physicians alike is the Fibromyalgia Network.  They have a very informative website  www.fmnetnews.com and they publish a quarterly publication which has really helpful articles as well as  resources for products that can help alleviate the uncomfortable symptoms of fibro and a contact line to call or email with your questions M-F 9am-5pm Pacific time.  The Network has been around since 1988 and remains on the cutting edge of research and treatments - both traditional and holistic.  They even provide a service that identifies physicians in your area that take fibro patients.  A one year membership entitles you to all these resources.  Go to the website for information on memberships and more!