January/february Newsletter

Volume 2, Issue 1

January/February 2009

Fibro Friends Forever Butterflies are symbols of metamorphosis. Fibromyalgia gives us the opportunity to change, grow and become stronger.

A l t e r n a t i v e T h e r a p i e s f o r P a i n m a n a g e m e n t T h i s m o n t h : N e u r o f e e d b a c k Similar to biofeedback, which we discussed last time, Neurofeedback (NF), or EEG biofeedback, helps reduce your fibromyalgia symptoms by changing your brainwave patterns. Helpful for treating many symptoms of fibromyalgia, ranging from depression to chronic pain, NF can help eliminate discomfort due to fibromyalgia. Wouldn’t eliminating our discomfort be wonderful?!? NF is an easy and pain-free form of fibromyalgia treatment, it allows a person to "learn" a new way of creating brainwaves. By altering brainwaves, the negative fibromyalgia symptoms associated with old brainwave patterns disappear. The main goal of this therapy is to give a person the conscious control to alter their brainwaves. During a NF training session, electrodes are placed on the scalp and ears. The precise

M e d i c a l Just as there are many, many fibromyalgia symptoms, there are just as many treatments. Treatment for fibromyalgia is very comprehensive and usually involves more than one health care provider. This could include: Your family doc, An Internal Medicine doc, a Neurologist, a Rheumatologist, a chiropractor, occupational therapist, physiotherapist, etc. Currently I am using my Family Doc and a Neurologist. With all types of treatments, the goal is to minimize our symptoms and improve our general health. Brain mapping is one diagnostic procedure that can help to better identify certain discomforts. This can help us to receive appropriate treatments. Furthermore, since the symptoms of fibromyalgia come and go and change, treatment is an ongoing process rather than management of a single episode.

locations for these electrodes will be determined by the NF practitioner. Once in place, the electrodes will send a signal to a computer, which then translates these signals to reflect brainwave activity. The therapist will be able to see brainwave patterns on one screen while for the patient, the feedback will be relayed through video, sound, or vibration. There are many different disorders and ailments that NF has been shown to be useful for. The most widely researched is ADD/ ADHD, although its use in treating those suffering from seizures, teeth grinding, and cerebral palsy, among other things, has also been examined. The role NF has in treating fibromyalgia has also been lightly studied with positive results. NF has also been found helpful for treating a number of

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symptoms of fibromyalgia, including: Depression, Anxiety, Chronic Pain, Sleep disorders, Managing stress, Chronic headaches & Short term memory loss. NF is used for Chronic Fatigue as well, although this area has not been as thoroughly researched. NF is often done in a clinical setting. Although the initial appointment may run as long as two hours, the therapist will need to review medical and family history, meetings thereafter will likely last between 40 minutes and an hour. Just how often one will need to go for a "training session" will depend on the issues patients are seeking help for as well as the results hoped for. Anywhere from one to five times a week may be normal. On average, most people notice a change in condition within the first 10 classes, Continued on Page 4

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With the help of our health care providers, we should be able to come up with a unique treatment plan that addresses our own particular needs. Our treatment plans should continually change as our condition changes. Since individual manifestations of fibromyalgia vary from patient to patient, so do most successful forms of treatment. Finding a health care provider that provides us with our own proper treatment is essential. Hopefully the tips you read in my newsletters will help you find the right doc and help you to build a healthy relationship with him/her. My hope with publishing these newsletters is to help you to work with your doc in finding the best treatments for your individual case. What works for one patient may not work for another. While one person may

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prefer a specific type of treatment, like massage therapy or heat therapy, another may find biofeedback or guaifenesin therapy to be more beneficial. Same with medications. What works for one patient may not work for another. By working with your health care team, you can find the appropriate type of treatment just for you. Finding a doc or specialist that you prefer and that works with you is very important. Finding the right medical treatments that work for you is also important. Communicate with your doc. It may take a few different types of treatments before you find the right one.

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Ok, now that you have learned to find a new physician, and how to communicate with him, now we are going to learn when it’s time to give up the doc you have and find a new one. I should know, I have had to do that. I know that once you have established a relationship with a doc, it is hard to decide if it is time to go looking for a new one. Our relationship with our docs is personal and if we have been with the same one for years, it is even harder to make that call/ decision to find a new one. So, if you are unsatisfied or unsettled with your current doc, and not sure if it’s time to start looking for another, here are 10 signs to look for:

1. Your doctor doesn’t listen to you. Does your doctor routinely interrupt you after one or two sentences? Do you find your doctor attending to other matters while you are trying to explain your symptoms? (i.e. answering his cell phone while with you) Does your doctor repeatedly ask you questions you’ve already answered? It’s time... 2. Your doctor doesn’t believe you’re really sick. Do you find your doctor frequently attributing your symptoms to age, stress or hormones? If you have a chronic illness like fibromyalgia or chronic fatigue syndrome, does your doctor dismiss it as either non-existent or a “wastebasket diagnosis”? (Mine did) Does your doctor imply that most of your problems are psychosomatic? It’s time...

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6. Your doctor refuses to refer you to a specialist.

Are you hesitant to tell your doctor about supplements you’ve been taking for fear of the lecture you’ll receive? Does your doctor make you feel foolish if you inquire about an alternative treatment like acupuncture or massage therapy? It’s time…

If you ask for a referral to a specialist, does your doctor refuse without explaining why? (It took my Doc about 4-5 months before he finally let me see a specialist) Is your doctor offended if you ask for a second opinion? It’s time...

4. Your doctor refuses to look at ANY information you find on the Internet.

7. Your doctor views each appointment as an isolated event.

Does your doctor reject anything found on the Internet regardless of the source? Is your doctor unaware of the fact that there is a great deal of quality, respected medical information available on the Internet (for example, most major medical journals, National Library of Medicine), or is anything found on the Internet dismissed without further investigation? If so...it’s time...

Does your doctor fail to review your chart at each appointment to refresh his memory, look for symptom patterns, and observe treatment history? Do you get the feeling your doctor has no idea who you are? Does your doctor treat you like a new patient, asking you the same questions you were asked at your last four appointments? It’s time...

If you ask to have a lab test run or request a new medication, does your doctor usually refuse without explaining why? When you express concern about something, such as a symptom or medication side-effect, does your doctor tell you not to worry about it without addressing your concerns? If you say you think you might have a particular disease or condition, does your doctor say, “No, you don’t have that” without telling you why that’s not a possibility? It’s time...

Well here are some short but sweet things you can do for them: 1. There are brochures available with great info that you can give them. Also providing them with some print outs from the internet can be helpful. However, don’t overwhelm them. 2. Asking for help is not easy, but letting your friends and family know if you need help can be helpful to both you and them. 3. Have one of them go to the doc with you. Maybe if the doc has a couple minutes he wouldn’t mind answering a cou-

8. Your doctor is rude, arrogant, or inconsiderate. Is your doctor’s attitude one of “Do what I tell you to and don’t ask questions”? Does your doctor make you feel as if you are wasting his valuable time? Does your doctor talk to you in a condescending or patronizing manner? When you ask a question, does your doctor ever make you feel foolish or stupid? Does your doctor routinely keep you in the waiting room for several hours? Do you usually have to leave multiple messages before getting a response? It’s time...

FAMILY & FRIENDS PLEDGE TO CARE:

Helping your Family Help You Your family is not sure what FM is and even worse they are not sure how it affects your life. What are you going to do? It can be frustrating on both ends. Look at it from both view points. You are thinking…”they need to understand you and what you are going through”...They are thinking…”I don’t understand, she looks fine, why is she being this way?”…

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3. Your doctor dismisses all alternative treatments as quackery.

5. Your doctor is unwilling to consider your ideas.

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ple of their questions that they may have. 4. If you are having mood swings, explain yourself and that you don’t think you would make good company. It’s better than being a “brat” to someone and they won’t resent you. 5. Don’t tire out relationships with constant complaints. They want to be there for you, but not if we are always complaining. 6. Offer to help others when you can. That way they won’t feel that the help only goes one way. I guess the best thing is to provide information. The more they understand about FM, the more they will understand you. Your relationships with friends and family will be so much better.

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ALWAYS STAND BESIDE LOVED ONES with Fibromyalgia and support the patients quest for a better quality of life.

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ACT AS AN ADVOCATE to insure that loved ones receive the best possible medical care.

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BE RESPECTFUL OF LOVED ONES PHYSICAL LIMITATIONS and help, or get help, when it is needed.

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EDUCATE OTHERS about FM and encourage them to provide people with FM support and understanding.

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ADVOCATE for improved treatments, expanded research and increased awareness and acceptance of FM.

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UNCONDITIONALLY LOVE the people in my life who have FM.

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W h a t ’ s A n d Well, if you hadn’t noticed, I added a page to the newsletter. Since some of my articles have been going longer and I have had to cut so many of them short, I added this page so I can use it as a “continued” page for those specific articles. I hope y’all don’t mind. Check it out, I am getting ready to start my second year doing this newsletter. March will be one year since I started. I can’t believe it. It is so exciting and it gives me some new motivation.

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is expected to be in pharmacies by March 2009 Check with your insurance company about alternative therapies. If they don’t cover them, they might have discounts for them. NF is a great example of what you could ask for. Happy Valentines Day

For links to back issues of this newsletter, you can find them in my blogs on www.myspace.com/ fibrofriendsforever. Savella was approved by the FDA for the management of fibromyalgia on January 14, 2009. While it was in clinical trials, Savella was known by its generic name, milnacipran HCl. Savella is a selective serotonin and norepinephrine dual reuptake inhibitor. Savella

Fibromyalgia & Pregnancy If you have fibromyalgia and are thinking about getting pregnant, it's important to learn all you can about both conditions. Sometimes, symptoms of fibromyalgia -- such as pain, fatigue, and depression -- are thought to be signs of the pregnancy itself. As a result, they may be undertreated. In addition, the added stress of having a baby may cause fibromyalgia symptoms to flare, making you feel much worse. Managing fibromyalgia during pregnancy is possible. But you need to spend time learning about the effects of pregnancy on symptoms of fibromyalgia syndrome (FMS).

You also need to stay in touch with your fibromyalgia specialist when symptoms flare.

All material in this newsletter is provided for information only and may not be construed as medical advice or instruction. No action or inaction should be taken based solely on the contents of this newsletter. Instead readers should consult their physician or other qualified health professionals on any matter relating to their health and well-being. Readers who fail to consult with appropriate health authorities assume the risk of any injuries. The publisher is not responsible for errors or omissions.

Fibromyalgia & You

stress, especially in the first three months. With pregnancy, there are changes in the levels of estrogen, progesterone, and other hormones. Also, since the time after a pregnancy can be difficult for How does fibromyalgia affect mothers -- even those without pregnancy? Along with weight fibromyalgia -- it's important to gain, your body is out of balance, be aware of the possible increase and your shape takes a different in pain and other symptoms that form. There are few studies on may occur after giving birth. fibromyalgia in pregnant women. However, a recent study at Temple University found that women Are fibromyalgia medications with fibromyalgia had more safe during pregnancy? At this symptoms of pain during pregtime, no fibromyalgia medicanancy than women who did not tions are completely safe to use have fibromyalgia. Also, fibromyalgia symptoms seemed to during pregnancy. In fact, doctors be exacerbated during pregnancy. recommend that women with Pregnant women with fibromyal- fibromyalgia go off of painkillers and antidepressants before they gia may experience significant become pregnant. However, be pain, fatigue, and psychological

sure you talk with your doctor before you stop any medicines. What treatments are recommended for fibromyalgia during pregnancy? To avoid letting fibromyalgia interfere with pregnancy, know what steps you can take to ease the symptoms. The safest treatments for pregnant women with fibromyalgia may include massage, exercise, yoga, meditation, and rest. If you suffer with fatigue and ache all over, make sure you rest 20 to 30 minutes at least two or three times a day. A warm shower or bath is a good way to ease pain. Also, use gentle stretching exercises and exercises recommended by your doctor for relief. (Continued on page 4)

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although further training will likely be necessary. Total length of the treatment will vary from patient to patient and be dependent on their issue. For example, individuals seeking help for ADD may require 40 or more appointments while those dealing with chronic pain may need less than 20 sessions. Patient and the NF trainer will discuss what the right length of treatment is for circumstance. This can usually be determined within the first few sessions. Few adverse side effects of NF have been found when the technique is practiced properly and under professional guidance. As for results, because the brain is effectively being taught a new skill, once this skill is learned and mastered, it can be retained and continuously used. Therefore, it is thought that, in most instances, the results of NF are permanent. Depending on where a person goes for NF training and the experience of the professional offering the training, one session may cost between $50 and $125. Some insurance providers may cover some of the cost or offer an annual cap on services. In some cases, it may be necessary to provide the insurance company with both a diagnosis and prescription from either a doctor or a psychiatrist before being issued re-imbursement. Medicare also covers NF in some instances for certain conditions. Here is a link with some great info regarding NF to provide your doc or insurance provider. http:// www.eegspectrum.com/HealthProfIntro/ ManagedCareProviders/ Depending on some things I have going regarding my own treatment, I may just provide my own doc with the info and see what he says.

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Is It Time To Find A New Doc? Continued

Pregnancy & Fibromyalgia Continued

9. Your doctor’s staff is frequently rude or unreliable.

Why is exercise important for fibromyalgia and pregnancy? Exercise helps keep you fit. It strengthens muscles, keeps joints flexible, and boosts mood by increasing serotonin in your body. Serotonin is a neurotransmitter that scientists have found to be related to fibromyalgia. Neurotransmitters are chemicals that send specific messages from one cell to another. While only a small percentage of serotonin is located in the brain, this neurotransmitter is believed to play a vital role in mediating moods.

Are staff members rude to you in person or on the phone? Have there been times that your messages were not given to the doctor? Do they fail to call in prescription refills in a timely manner? It’s time…(this was one of my biggest reasons for changing)….. 10. Your doctor refuses to cooperate with other healthcare professionals as part of your healthcare team. Is your doctor unwilling to take the time to connect and compare notes with other members of your healthcare team (for example, specialists or physical therapists)? It’s time... To Switch or Not to Switch Should you look for a new doctor if even one of these signs is true of your doctor? Not necessarily. It depends on what is important to you. You really need to take everything into consideration and decided. For myself, it wasn’t just one thing that made me do it, it was one thing too many that broke the camels back, so to speak. There is no such thing as a perfect doctor. Personalities vary and a doctor that you love, may be intolerable to another patient. Ultimately, the decision is yours. Just remember that you deserve the best healthcare you can get. Your doctor provides a service––healthcare. You are paying for that service. I have said this before, the doc works for YOU. You don’t work for the doc. If you’re not receiving satisfactory service, you need to take your business elsewhere.

Too much stress can lead to permanently low levels of serotonin. That, in turn, can lead to aggression and feelings of depression. Lack of exercise can aggravate low serotonin levels. On the other hand, increased levels of serotonin in the brain are associated with a calming, anxiety reducing effect. In some cases they are also associated with drowsiness. Having a stable level of serotonin in the brain is linked with a positive mood. Are women especially affected by levels of serotonin? It appears that women may have a greater sensitivity to changes in serotonin. Mood swings during the menstrual cycle or menopause or following the birth of a baby are induced by the action of hormones on neurotransmitters. Various factors can have a positive effect on serotonin levels. These include sunlight, certain carbohydrate foods, some hormones, and exercise. Exercise acts as nature's tranquilizer, helping to boost serotonin levels in the brain. Studies show that exercise also triggers the release of epinephrine and norepinephrine, which are known to boost alertness.

In love and health, Jodie What exercises can I do with fibromyalgia during pregnancy? Yoga along with other stretching and normal daily activities during pregnancy, consider exercising in a warm swimming pool. The heat might help ease the fibromyalgia pain while the stretching and other low-impact exercise can keep your muscles and joints flexible and strong. The water temperature should feel comfortable but not hot. In a pool, water temperatures from 83 to 88 degrees Fahrenheit are usually comfortable for exercise. But if you're pregnant, ask your doctor. Do not use a whirlpool bath or spa or hot water in your bath during pregnancy. Doing so could harm fetal development. Learn all you can about fibromyalgia and pregnancy before you get pregnant. Then, you will be well prepared once you do get pregnant.

Fibro Friends Forever has been created for P A I N

M A N A G E M E N T S U P P O R T

Fibromyalgia and Pain Management Awareness. Its mission is to help those with FM & chronic pain disorders to change, grow and

1003 N. Maritza Pl. Porterville, CA 93257

become stronger. Our goal is to make every-

Phone: 559-756-0894 E-mail: [email protected] myspace URL: myspace.com/fibrofriendsforever

fibromyalgia (chronic pain) on a daily basis.

one aware of the issues that face those with Education is the key to our health. Along with informational services, we provide email support group services.

change, grow and become strong

to include a

monthly, interactive support group meeting.

F r o m You asked and you shall receive. part 3.

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A few of you asked for some information specifically regarding Chronic Fatigue Syndrome. Here is

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In some cases, chronic fatigue syndrome (CFS) develops after an illness such as mononucleosis (mono) or flu, or after a period of unusual stress. But it may also develop without warning, even if you have not been sick. The fatigue may come upon you gradually or quite suddenly. Because fatigue can be vague and can be caused by many things, you might not pay attention to the problem for several weeks or months. It is hard to say what is normal with CFS because the diagnosis often is not clear for some time. In general: Symptoms are worse at the beginning. Later, you may feel better for a time and then feel worse again. Or, your symptoms may disappear entirely. Many people improve in a year or two and do not have a relapse. Some people continue to have severe fatigue and other symptoms for many years. Research shows that the seasons affect when many people get CFS. The highest numbers of people who develop the illness are diagnosed from November through January. Some people find the fatigue, pain, and thinking problems caused by CFS greatly hamper their lives, but other people are not nearly as affected. Most people are still able to perform some of their usual activities at home and work, but they often are unusually tired after they do them. People often have to cut down on social and recreational activities to save their energy for work and family. Other people have trouble doing most or all of their daily activities, including work and the basic chores of daily living. They may have to carefully plan how to best use their energy. People who are most severely affected by CFS may have difficulty getting out of bed and may require help with basic activities such as dressing, eating, and bathing. Dealing with depression As with many long-lasting illnesses, you may develop depression at some point. Between 50% and 66% of people with CFS do. Here are some important facts to keep in mind: Your mind and body are connected and influence each other. Physical illnesses can be made worse-or better-by feelings and attitudes, and vice versa. Your fatigue is real, not imaginary. It is your body's reaction to a complex interaction of both emotional and physical factors. To successfully manage your CFS and get back to normal, you need to pay careful attention to how what you are doing and feeling affects your symptoms. CFS is often made worse by depression or anxiety. Like any other medical illness, these conditions may need to be treated. Helping your depression or anxiety can, in turn, help your other CFS symptoms. This does not mean that your symptoms are all in your head. It does mean that your mental health can affect your physical health. If you have CFS and feel depressed, talk to your doctor. Medicine for depression may help you feel better and help you cope with the stresses of having a chronic illness. Some of these meds may even help with other symptoms.