September/october Fibromyalgia Newsletter

Volume 1, Issue 6

October, 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 : H Y P N O S I S Last month we discussed Craniosacral Therapy as an alternative therapy for pain management. Please let me know if you had any questions regarding that article. “Look into my eyes...Look deep into my eyes... Now count backwards, 10,9,8,7,etc… Hypnosis...Not something I have personally tried but it has been proven to reduce pain symptoms' and believe it or not, it has become a doctor recommended treatment. We have seen hypnosis being used in the movies and on TV in comedic situations where the patient is unaware of what happened, where the hypnosis session has gone wrong & the patient acts like a complete goof. Well, contrary to what we have seen on TV or in the Movies, people who are hypnotized ARE aware of their actions. They won’t do things that they have a moral or ethical objection to. If you are being hypnotized, you do have control over your actions, what you say, and what you will remember. Unless of course your subconscious chooses to “forget” what happened, or that ’fibro fog’ kicks in...lol!!! There are different stages of hypnosis; the first stage is the superficial trance usually used to correct addictive behaviors; the second stage is the

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Amongst the more traditional diagnostic tests used in fibromyalgia diagnosis, one fibromyalgia test that is becoming increasingly popular is hair analysis. Hair analysis, also known as hair follicle testing, is a form of testing generally used in scientific research, drug testing and forensics, but which is now being used more and more to help diagnose and treat a variety of health conditions and diseases, including fibromyalgia syndrome. But how can hair analysis diagnose fibromyalgia? And moreover, how does hair analysis work and how accurate is it? What is Hair Analysis? Hair analysis is a procedure in which a small sample of hair is used to assess an individual’s health. Hair is the second most metabolically active tissue in the body; its makeup is influenced by genetics, hormones, the environment and even perspiration. Protein found in hair tells us what the individual has been exposed to, including radiation, toxins and heavy metals. An exposure rate to toxins of anything above 50% can have a serious impact on the health of the individual. A hair follicle test can also tell us whether the individual has any vitamin, mineral and nutritional deficiencies. Unlike a blood test, which tells a doctor what is going on inside of the cell and what waste is being expelled from the body, hair analysis reveals what is happening within the cells and what is being stored in the body. Hair Analysis: How the Procedure Works A medical professional will instruct the patient as to how

alpha state used to help control pain; and the third stage is the deepest which is usually used by psychiatrists to reach a patients forgotten memories and eventsthis techniques is used to help those who have gone through psychological trauma.

licensed clinical hypnotists. A clinical hypnotist usually will have training in both medicine and psychology.

If you have tried Clinical Hypnosis, or you are going to try it, shoot me an email and let me know how it goes. I am so very curious about it. There are two major types of hypnosis. Clinical I have never known anyone who has done it Hypnosis and Self Hypnosis. With Clinical Hyp- before. nosis, the session is performed in an office by a licensed professional. The patient is hypnotized Until next month…..lots of FibroHugs, Jodie through a series of relaxation exercises. Once the patient reaches the hypnotic state, the therapist In the next Alternative Care Article: hmmm, makes suggestions as to how the patient can I will have to think about it….I was considerchange behavior or thoughts. With Self Hypnosis…..and I guess looking at the definition of this, ing Biofeedback. Any Preferences? I have done hypnosis before. It is done by you in the privacy of your own home. You can learn techniques from clinicians or books. Self Hypnosis is also known as MEDITATION. When I think of it that way, I understand how often I use self hypnosis. I also know how helpful it is. I love meditation. It truly helps to lessen my pain. Of course due to my fatigue I usually fall asleep...lol!!! Others have reported increased relaxation & less sleep difficulties. If you are looking for a therapist to try hypnosis to control your pain, make sure that you find a

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to prepare the sample, including where the hair should be taken from and how much hair is needed. The hair sample is then sent to the lab, where it is tested for toxins. Test results can be affected by the type and condition of hair, as well as a person’s age and sex. What Does Hair Analysis Tell Us About Fibromyalgia Symptoms? Because hair analysis correlated certain levels of exposure to certain diseases, it can help diagnose fibromyalgia symptoms and can be used to establish a healthier fibromyalgia diet, as well as to determine the best fibromyalgia treatment for the individual. Studies have found that the hair samples of fibro patients had a higher incidence of calcium and magnesium levels than their counterparts who did not have fibromyalgia syndrome As a result of the findings, calcium and magnesium supplements were added as supplementary fibromyalgia treatment. Another medical view of hair analysis and its benefits for fibro patients is that fibromyalgia is caused by exposure to certain toxins, such as aspartame, which the body cannot eliminate. As a result, the body creates pain receptors in the muscle fibers, a response which leads to common fibromyalgia symptoms such as chronic

pain, impaired vision and depression. Accuracy of Hair Analysis According to some medical experts, hair analysis has a high rate of accuracy, even more so than urine and blood tests. However, hair follicle testing is still a controversial form of testing within the medical community, and some experts question its validity and point out the lack of accuracy of this testing process. One recent study found that this lack of accuracy was likely due to the absence of standardized lab procedures. However, there are certain factors that can affect the accuracy of hair analysis, including: The area from which hair is taken Environmental factors: where you live and work affects your exposure to toxins The use of hair products Rate of hair growth Multiple testing is usually recommended every few to several months in order to follow up on the patient’s health and to determine whether treatment has led to an improvement of fibromyalgia symptoms. The Costs of Hair Analysis The average lab fee for a hair follicle testing procedure is $85, however overall costs of hair analysis can range anywhere from $100 up to $200. At-home hair follicle tests, in which the individual prepares a hair sample and then mails it to the lab, are a more economic option, averaging about $30 to $70.

Reprinted with Permission by Fibromyalgia-Symptoms.org

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FINDING DR. RIGHT I am so jealous of you if you have found Dr. Right and been able to stay with this Dr. When I was diagnosed, I was sent to a wonderful doc. But hard times fell upon me and I had to change insurances. Truth be know, I had to get on a State insurance. Can you guess what happened? Yep, I ended up with a doc that thinks that if I would just “go do something or exercise more” I would be fine. Yeah, like I don’t do anything. I am a mother of 3 teens and always on the go. I had always worked a full time job as an accountant/bookkeeper and I had always been in decent shape. How frustrating this has been. Recently I was asked how to find just the right doc. The first thing I said was “remember, the Doc is working for YOU, he/she is getting paid by YOU”. It is important to search, research and interview. Here are some steps to take. 1.

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Also attending support groups can give you all kinds of physician information. 3.

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Make a list of your specific requirements: The type of doc you may need. Commonly, a rheumatologist is the specialist that would treat fibromyalgia, but some need to have a good general or family doctor for referral first. Also consider your requirements for location. How far are you willing to travel? Make a list of your potential docs: This is where you will want to compile some data. Name and phone number. Leave room for notes and your appointment date and time. Good sources for locating doctors would be the phone book, Hospital and other doctor referrals, word of mouth, websites, medical societies and of course, associations such as the NFA, ACR, or the FM Network.

Making your call: You are going to want to talk with the office manager first. Ask if they are accepting new patients, about office hours, usual waiting time for appointments, any fees for the interview appointment, does this Dr. treat fibromyalgia, the Dr.’s views on fibromyalgia, and what the normal visit fees are. If you have insurance, ask if the Dr. participates in your insurance. Also ask if you had to go on medical assistance, would the Dr. accept it. Once you have asked these questions, make your appointment for your “no cost” interview, not for an exam. The Interview: At your interview, get there a bit early. Listen and learn. Listen to conversations in the waiting room and if you can among the staff. Listen for complaints. Does the office feel warm and welcome or cold? What is the staff like? Happy, grumpy, are they arguing? Once you are in with the doc, remember you have 10-15 min. Be ready. Have your prepared list of questions ready. Is the doc comfortable with treating FM? Does the doc treat other FM patients? How familiar is the doc with FM? What meds does the doc use in treatment? (Especially in pain control) What does the doc refer out for? (depression, pain, other treatments) How does the doc feel about alternative treatments? How does the doc feel about you asking lots of questions and bringing in research? Go with your feelings. If

your not comfortable don’t choose this doc. 5.

Check credentials: You can do so with the AMA.

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Check with your insurance company: Is the specific doc on your plan? Do you have to have referrals for specialists? What is the policy for out of network docs? Double check your co-pays and limits.

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Finally deciding on your doc: Once you have decided on which Dr. you would like to try, call and make an appointment for a complete evaluation. Let them know that you are a new patient and that you have a multiple of problems. They may want to schedule an extended appointment. Once you have had your appointment, ask yourself these questions: Did the doc focus on my FM as a whole or was the doc narrow minded? Did he offer suggestions? Were all my questions addressed to my satisfaction?

If you were not satisfied, then keep on interviewing. Finding the right Dr. is not easy. Remember taking care of your health is not just the docs responsibility. This requires team work. I find that a lot of times I am telling my own doc what I need. When I come across new research, I bring it in and ask him what he thinks and if we should try it. Sometimes he listens sometimes he doesn’t. Once I get new insurance, I will be finding a new doc as well. Good luck!

FM, Chronic Pain & Relationships Last month I talked a little about how having FM has affected my life. This month I will give you a few tips on how not to burn out your mate with a play by play of your illness and not to burn out yourself with the daily aches, pains and depression. Yes, I know that in order to understand FM and how we are feeling, information is necessary. We want our mates to understand what we are going through. But it is not necessary to do tell them minute by minute. Doing so will drive them crazy. A.

Allocating a couple moments in the morning to see how one another is feeling and to check on the days agenda is best. That way if you are not having a good day and the agenda has to change, then that has been communicated. Also by knowing you are not going to have a good day, your mate will already know that you will have special needs that day,

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make any special arrangements and tend to them. You and your mate should both have someone, other than each other, to talk to regarding your illness. You don’t want to burn out your family and friends, so someone in the business of listening would be best. A therapist, social worker, psychologist, psychiatrist, counselor, minister, etc. Things to confide in friends about could be cause and effect issues such as finances, emotional issues, social issues, etc. Again, just be careful not to burn them out. We know that FM can take days or weeks from us, but not without a fight. When I win, I try to live my life as normal as possible. So should you. (I do lose a lot too) Don’t knock yourself if you do. Some of the hobbies we once enjoyed may not be possible. Find new ones.

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Focus on someone else. By starting this newsletter and taking on FM awareness, the majority of the time, it takes my mind off of my own pain.

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Take an hour once a week to discuss any specific issues that need to be addressed. When I was feeling lonely, Stephen made plans for us to go to dinner and a movie. When he has issues, like me not taking care of myself like I should, I listen and do.

Don’t let FM burn you out on life. Next month, Effects of Chronic Illness on our Marriages/Partnerships. Until then, Love one another unconditionally. Live with each other with understanding. Laugh with your loved ones uncontrollably.

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W h a t ’ s A n d First and foremost, I would like to apologize for not getting an issue out in Aug/Sept. I had a really difficult couple of months. I am back on track and actually really excited about some up coming things. Thanks for understanding, I know you all will. FibroHugs to you. I had a phone call this week. I was asked if I would accept an invitation to do an interview with the local newspaper to tell my story and promote some FM Awareness. What an honor!!! Check this out:

House of Representatives passed HR 2994, The National Pain Care Act 9/24/08The Pain Care Act is designed to improve research, training, education and outreach for pain care. For more information and the text of HR 2994 go to: www.theacpa.org/ news_viewitem.asp?id=194 For links to back issues of this newsletter, you can find them in my blogs on www.myspace.com/

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fibrofriendsforever. For some interaction with other FM patients and to check on Fibro Friends Forever other articles, go to WeAreFibro.org. You can look me up, Jodie, or look up or community, Fibro Friends Forever. Join in on the fun and conversations. This past week (Oct 1st.) I had a booth for FM Awareness at a Health Fair. It was amazing how many people “knew” someone that had it and were interested in learning more. In 2007 The NFA did an awareness survey 45% Never heard of FM 88% of those knowledgeable had FM 63% of those knowledgeable knew someone with FM 67% have just some knowledge of FM 32% incorrectly classified FM as an autoimmune disorder 28% incorrectly classified FM as a type of arthritis 6% incorrectly classified FM as a gynecological condition 57% CORRECTLY classified FM as a pain condition

Review of “Sit and Be Fit: Fibromyalgia Workout” As I mentioned before….exercise isn’t my forte’. But since this seemed so simple and was so short, I thought, what the heck….so with permission from the National Fibromyalgia Association (www.fmaware.org) I thought I would reprint this review for you.

Review: "Sit and Be Fit: Fibromyalgia Workout" Friday, August 15, 2008 FMOnline vol. 8, no. 8 “Sit and Be Fit: Fibromyalgia Workout” Mary Ann Wilson, R.N.; $18.95 (2005)

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Fun and effective, this speciallydesigned workout from the popular Sit and Be Fit™ series on PBS offers a sound physical fitness option for FM patients requiring a low-impact approach to exercise. The 27-minute routine includes exercises for both upper and lower body, with an emphasis on improving range of motion and employing proper posture and breathing technique. While the routine is not intended as a cardiovascular workout, the succession of exercises is entirely capable of stimulating blood flow and heart rate.

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

Have a safe and Happy Halloween!

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.

Body Care Corner Host Mary Ann Wilson, RN, uses a lightweight, 10-inch ball during the routine, but such a ball is not necessary to perform the exercises, as is demonstrated by the physical therapist who joins Wilson during the program to demonstrate modifications of each activity for viewers with different levels of function. Wilson adds another element of variety, and possible progression, to the workout by showing how to execute several of the exercises from a standing position. Wilson is a knowledgeable host and her positive demeanor is inspiring; overall, the upbeat tone of the entire production makes

this workout seem more like a treat than an “exercise routine.” --Reviewed by Monica Tower Sounds good to me…..I am willing to give it a shot….. FibroHugs...Jodie

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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

port group services.

Soon

to include a

monthly, interactive support group meeting.

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You asked and you shall receive. A few of you asked for some information specifically regarding Chronic Fatigue Syndrome. Here is part of it. I will continue with Symptoms and Risk Factors next month.

D e f i n i t i o n Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that doesn't improve with bed rest and may worsen with physical or mental activity. Chronic fatigue syndrome may occur after an infection, such as a cold or viral illness. The onset can be during or shortly after a time of great stress, or chronic fatigue syndrome come on gradually without a clear starting point or obvious cause. Women are diagnosed with chronic fatigue syndrome far more often than men are. However, it's unclear whether chronic fatigue syndrome affects women more frequently or if women report it more often than men do. Treatment for chronic fatigue syndrome focuses on a combination of approaches to relieve signs and symptoms. (webmd)

C a u s e s Of all chronic illnesses, chronic fatigue syndrome is one of the most mysterious. Unlike definite infections, it has no clear cause. Several possible causes have been proposed, including:

 Depression  Iron deficiency anemia  Low blood sugar (hypoglycemia)  History of allergies  Virus infection, such as Epstein-Barr virus or human herpesvirus 6  Dysfunction in the immune system  Changes in the levels of hormones produced in the hypothalamus, pituitary glands or adrenal glands  Mild, chronic low blood pressure (hypotension) The cause of chronic fatigue syndrome may be an inflammation of the pathways of the nervous system as a response to an autoimmune process, but with nothing measurable in the blood as in other autoimmune diseases, such as rheumatoid arthritis and lupus. Chronic fatigue syndrome may also occur when a viral illness is complicated by a dysfunctional immune system. Some people with CFS may have a low blood pressure disorder that triggers the fainting reflex. In many cases, however, no serious underlying infection or disease is proved to specifically cause chronic fatigue syndrome. Lack of medical knowledge and understanding of CFS has made determining and describing the characteristics of the condition difficult.