November/december Fibromyalgia Newsletter

Volume 1, Issue 7

November/December, 2008

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 : B I O F E E D B A C K Last issue we discussed Hypnosis Therapy as an alternative therapy for pain management. Please let me know if you had any questions regarding that article. This month I had been considering doing an article regarding Biofeedback. I wasn’t committed to it because it wasn’t something I was too familiar with. Well, after further research, I have decided to go ahead and do the article on Biofeedback. Wow!!! What interesting and potentially helpful information. If you have fibromyalgia syndrome, I am sure you are sick and tired of the chronic pain, morning stiffness, and other symptoms that you are suffering from. Biofeedback therapy might be just the treatment you need to help relieve your discomfort. Biofeedback operates on the theory that you can reduce your fibromyalgia symptoms by influencing your body through your own willpower. (Would that be “mind over matter”? Let’s see how Biofeedback works.)

Biofeedback therapy uses a machine to record electric impulses emitted by your body, in the form of temperature, muscle twitches, and brainwaves. The biofeedback machine then "feeds back" these impulses to you in the form of lights and beeps, which are displayed on a biofeedback monitor. For example, when your temperature increases, the number of beeps that you hear also increases. The object of the therapy is for you to find a way to reduce the number of lights and beeps that are fed back to you. This will relax your body’s electrical impulses and reduce your symptoms. With training, you can eventually apply this knowledge without the use of a machine. (This makes me think of the monitor used during labor. You know the one that registers contractions. I could watch it rise and fall. I used it to help me with how I dealt with each contraction. It worked great for me.) Biofeedback therapy was designed to treat a variety of illnesses including chronic pain disorders, paralysis, and fatigue. It has also proven helpful in relieving some types of psychological illnesses, such as obsessivecompulsive disorder. Biofeedback has also

A S S O C I A T E D Fibromyalgia has often been called the "great imitator" because so many of its symptoms mimic those of other disorders. As a result, it can often be difficult to receive a proper diagnosis of FM. However, there are subtle differences between many of the illnesses and FMS. Learning more about each of these disorders can help you figure out just how fibromyalgia is distinct from them. Making a list to compare the differences is helpful. (Or you could email me) Common disorders that FM is often mistaken for include  Lyme Disease; Lupus; Osteoarthritis; Rheumatoid arthritis; Cushing’s Syndrome; Hypothyroidism; Cervical spinal steonosis

C O N D I T I O N S

People with fibromyalgia are also at greater risk of developing a number of other disorders, many of which can exacerbate your current fibromyalgia symptoms keeping you in that vicious cycle I spoke of before. These disorders and conditions may be (but not limited, by any means, to): 

IBS; Osteoporosis; Endometriosis; Carpal Tunnel Syndrome; Sjogren’s Syndrome; Crohn’s Disease; MS; CFS; Anemia; Seasonal Affective Disorder (SAD); Yeast Infections: Hypoglycemia and more.

proven to be helpful in reducing various symptoms of fibromyalgia. (Ok, How???) Biofeedback works by training you to better recognize your body’s own reactions to stress. When you are exposed to stress, emotional or physical, your body responds in various ways. Your heart beat may increase, your joints may hurt, or your hands might feel cold. By showing you, through beeps and lights, how your body is feeling or reacting, biofeedback helps you to become more attuned to your body’s needs. (Hmmm, I know that I am hurting. It would sure be nice to know why and what triggers specific aches and pains) Biofeedback also works by using rewards to get you to correct disturbances in your body. During the therapy you are "rewarded" for reducing your stress in the form of a reduction of beeps and lights. When practiced enough, your body will eventually automatically correct itself. There are a number of different types of biofeedback therapy. They are often used together in order to achieve the best effect. Continued on Page 2

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Fibromyalgia can also affect the way your body functions. FMS impacts the Cardiovascular System and the Nervous System. Please remember that these are not the limit of conditions that FM can be associated to. If you have any questions about any of these, or need help researching/understanding, please let me know. I am always here to help.

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C o m m u n i c a t i n g Are you communicating with your doc? Yes you say? Ok, are you communicating honestly with your doc? Yeah, that’s what I thought. Well, with some of you that is. I bet that over half of you are not being honest with Mr./Ms. Doc. I am going to give you ten reasons why you’re not being completely honest. The reason I know this? They are the same reasons I’m not being completely honest with my doc. Here is what you are thinking: 1.

The doc won’t listen or truly care.

2.

The doc will say “your just depressed”

3.

The doc doesn’t believe in FM

4.

The doc doesn’t believe YOU

5.

The doc will think you’re a hypochondriac

6.

The doc won’t think your symptoms are important

7.

The doc will think you just want drugs

8.

You have too many symptoms that you think the doc won’t want to deal with them all

9.

The doc will be judgmental

10. You are embarrassed of all your symptoms These are all legitimate reasons. This is because some docs have failed us or others in the past.

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We can do something about making communication with our own docs better. Here are a few things we can do: 1.

Educate ourselves about our own illnesses. I have said it before and I will say it again. We are responsible for our own health education and how we are taken care of,

2.

Prep for your appt. We all know how the docs like to overbook. They give us what, 10 minutes? Even though we see them all the time, they don’t remember anything about us. Bring your list of meds, your list of recent symptoms, what you discussed last, your progress and your questions.

3.

When you speak, be specific with details, don’t whine, but don’t be arrogant either. Even though we may know more about our condition than the doc does, he is the one taking care of us. (Side point: just because they are the doc doesn’t mean we have to accept inadequate care. We are paying them for a service. Get what you pay for. I have said it before, they work for you.)

Regarding Educating ourselves. I really think it is so important to do as much as possible to learn about our health issues. If you are doing research on the internet, please make sure it is a reliable source. Getting information through a chat room is not a reliable source. Going to the library is good. I have purchased some good books from bookstores and from the Arthritis Foundation. You all know that I am always willing to do research for you. Just forward me your questions. If you want a good reading list, let me know that too.

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Now in regard to point number 2. It frustrates me when I see my doc and I have discussed an important issue with him and the next time I talk to him he can’t remember a dang thing. I have learned that it is important for me to write down what we discussed, how things have progressed, and any questions I had. After all, like I am going to remember????? LOL!!! In the email I am attaching a little something I created a while back to help me with my doctor visits. I have emailed it to some of you already, usually as you become part of my “little” family I email it out. Now for point number 3. When you are trying to explain, let’s say a pain in your foot, don’t just tell the doc your foot hurts. Be specific. Tell the doc that after being on your feet for 10-15 minutes your foot gets a pounding pain in your heel. As for your tone, we all know how to tune out the kids when they start to whine. What makes you think the doc isn’t going to tune us out? As for being arrogant, what is that saying, we attract more flies with honey. Need I say more? I know it is hard to respect someone who isn’t respecting us. So, if this is what is happening between you and the doc, guess what? Time to switch docs. Next month let’s discuss how you know when it’s time to get a new doc. In love and health. Jodie

FAMILY & FRIENDS PLEDGE TO CARE:

Biofeedback Continued EMG biofeedback is the most common type of biofeedback therapy and is especially useful for fibromyalgia patients. It is used to correct muscle pain and stiffness. A biofeedback device called electromyograph measures electricity given off by your muscles. (I had an EMG on my arms and it told the Doc that I had mild Carpal Tunnel Syndrome in both arms) Peripheral Skin Temperature (PST), this type of biofeedback measures electrical impulses given off by the flow of your blood. This provides information about your skin temperature, which can be used to fight persistent cold or Raynaud’s phenomenon. EDR monitors electricity produced by your sweating reflexes, and is also known as sweating biofeedback. It is used to correct anxiety and depression. EEG biofeedback measures the type of waves that your brain produces. It is helpful in correcting all sorts of ailments, ranging from depression to sleep disorders.

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Breathing biofeedback gives you information about your pulse rate and how fast you are breathing. It is used to help correct anxiety and fatigue. Biofeedback has proven to be very effective in reducing symptoms of fibromyalgia syndrome. It helps to: increase physical functions; decrease tender points; minimize pain; decrease disordered sleep patterns. In one recent study, fibromyalgia patients who attended 15 biofeedback sessions experienced a decrease in their number of tender points, as well as improvements in their muscle stiffness and pain symptoms. These benefits lasted for up to six months. If you are interested in trying biofeedback therapy, there are a number of resources that you can turn to. Biofeedback is normally practiced by licensed professionals, and is commonly used by psychologists, psychiatrists, neurologists, and physical therapists. Your doc/ health care provider should be able to refer you to a reliable practitioner.

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



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.



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



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



UNCONDITIONALLY LOVE the people in my life who have FM.

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a n n o u n c e m e n t s

I have attached to the email an article I found called “Why Exercise Will Help Your Fibromyalgia”. I enjoyed the article and it’s simplicity.

Fibromyalgia AWARE Magazine is now being sold in over 6,200 CVS Stores Nationwide. Go check it out in the feature section.

I did the radio interview. It was quick & basic. I wish I had to opportunity to say more, another time perhaps. Here is the link: www.kvpr.org/shows/ quality_of_life.php#recent-shows. Copy and paste it into your browser. Choose the show for the 25th . If you have any problems let me know.

Happy Thanksgiving & Merry Christmas!!!

Check with your insurance company about alternative therapies. If they don’t cover them, they might have discounts for them.

For links to back issues of this newsletter, you can find them in my blogs on www.myspace.com/ fibrofriendsforever. Nov 3, 2008—A new brain scan study concludes that fibromyalgia is related to abnormalities of blood flow in the brain. See the email attachment “Fibromyalgia a”

Fibromyalgia and Sex (not for sensitive eyes) & no blushing Ok my dear fibromites; it’s time for “the talk”. Yes, THAT talk. If you have FM, you may also be having problems with your sex life or relationships. You could be experiencing loss of libido (did I just say Libido?) or having difficulty with sexual performance. It's also possible your libido (is sexual desire better?) is healthy, but the deep muscle pain and stiffness of fibromyalgia may keep you from enjoying sex the way you used to. Below is some information I researched regarding the issue, and I am going to speak openly. A healthy sex life is important for many reasons. Not only does sex strengthen an intimate relationship, but sexual intercourse boosts endorphins.

Endorphins make us happy. So, what causes the loss of sexual desire with fibromyalgia? Some of the medications, such as the SSRI antidepressants can cause a loss of desire. Also, for some, if it isn’t enough that we have gained a ton of weight due to the drugs and are feeling a bit insecure, we have to deal with the constant pain, fatigue, anxiety and depression that the FM itself causes. Well, if it hurts all over, then how the heck can a fibromite have sex? Some fibromyalgia patients give up all together. That just isn’t the answer. It is still possible to have an intimate relationship. You just need to work with your partner to find the most comfortable posi-

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 & Your Relationship tion during sexual intercourse. For instance, if you have fibromyalgia with low back pain, you may find that having your partner on top or lying on his or her side is most comfortable for you. Or, if you're a woman who has fibromyalgia and hip pain, you might use a pillow between your knees to stabilize your body during sexual intercourse. (Check out www.liberator.com for positioning pillows ) Just because you've "always had sex one way," does not mean that's the only way. You need to be patient, take it slowly, and find the best sexual positions that allow you to be intimate without causing further pain. The trial ‘n’ error phase could be fun. Keep in mind, there is no right or wrong way to be intimate with your part-

ner. You may just find lots and lots of different and fun ways to have sex. There are some ways to minimize your pain prior to sex as well. Try taking a hot shower or soaking in a warm bath. (You can do this with your mate for intimate, quality time) You can also try some light stretching or some yoga. (or have your mate help you with some stretching) Doing these things after sex help with the pain too. (I should teach classes...LOL) One of the most important things is to talk to your doctor/healthcare provider. Sometimes they may help with medical treatment. Ya’ never know. FibroHugs to you all...Jodie

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 sup-

change, grow and become strong F r o m You asked and you shall receive. part 2.

port group services.

Soon

to include a

monthly, interactive support group meeting.

“ yo u ”

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

S y m p t o m s Chronic fatigue syndrome is a flu-like condition that can drain your energy and, sometimes, last for years. People previously healthy and full of energy may experience a variety of signs and symptoms. People with chronic fatigue syndrome exhibit signs and symptoms similar to those of most common viral infections. Unlike flu (influenza) symptoms, which usually subside in a few days or weeks, the signs and symptoms of CFS can last much longer. They may come and go frequently with no identifiable pattern. Primary signs and symptoms In addition to persistent fatigue, not caused by other known medical conditions, chronic fatigue syndrome has eight possible primary signs and symptoms. Chronic fatigue syndrome symptoms include: Loss of memory or concentration Sore throat Painful and mildly enlarged lymph nodes in your neck or armpits Unexplained muscle soreness Pain that moves from one joint to another without swelling or redness Headache of a new type, pattern or severity Sleep disturbance Extreme exhaustion lasting more than 24 hours after physical or mental exercise According to the International Chronic Fatigue Syndrome Study Group — a group of scientists, researchers and doctors brought together by the Centers for Disease Control and Prevention (CDC) to determine a standard method for defining and diagnosing chronic fatigue syndrome — a person meets the diagnostic criteria of chronic fatigue syndrome when unexplained persistent fatigue occurs for six months or more along with at least four of the eight primary signs and symptoms. Additional signs and symptoms In addition, people with chronic fatigue syndrome have reported other various signs and symptoms that aren't part of the official definition. These include: Abdominal pain Allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise Bloating Chest pain Chronic cough Diarrhea Dizziness, balance problems or fainting Dry mouth Earache Irregular heartbeat Jaw pain Morning stiffness Nausea Chills and night sweats Psychological problems, such as depression, irritability, anxiety disorders and panic attacks Shortness of breath Tingling sensations Visual disturbances, such as blurring, sensitivity to light, eye pain and dry eyes Weight loss or gain If you have chronic fatigue syndrome, your symptoms may peak and become stable early on, and then come and go over time. Some people go on to recover completely, while others grow progressively worse.