Hope is faith holding out its hand in the dark.  -George Iles

Monday, November 30, 2009

NFA Chat Room

The National Fibromyalgia 
Association has launched an 
online Chat Room.
Share your challenges, hopes and triumphs with others in the fibromyalgia community. 
Visit www.carepages.com/fmaware and type in “fibromyalgia” or “NFA” in the search window to meet and respond to others.

Sunday, November 15, 2009

World Me & FM Prayer & Meditation Days

is on December 7th 2009.

Please click here for more details:
How to Participate

Thursday, October 15, 2009

World Me & FM Prayer & Meditation Days

is on November 2nd 2009.

Please click here for more details:
How to Participate

Monday, October 12, 2009

Charitable Thrift Store Suffers

I wanted to share this bittersweet article. I'm really happy to hear that there is a Fibromyalgia thrift store, but sad about the incident. Bless the volunteers hearts who run this organization.

METRO VANCOUVER - Slightly more than a week after the Fibromyalgia Well Spring Foundation opened a new thrift store in Langley, someone has broken the front window and grabbed some goods, the organization’s founder said Monday.

Cheryl Young said the theft early Saturday morning was ironic because the thieves stole from an organization that helps people in need.

“We’re a charity working for people who don’t have a lot of money,” she said. “They’re on pensions and disability.”

Young said she had run the three-year-old organization out of a 9-by-12-foot area in her mobile home in Langley before moving the office to the 2,000-square-foot location at 109-20631 Fraser Hwy. and opening a new thrift store and drop-in centre there on Oct. 1.

She said the organization had gone through a lot of work to open the new location.

The perpetrators of the early morning theft grabbed $35 in cash from a cash box accidentally left near the window and also stole some pieces of costume jewelry, but the big expense will be the cost to replace the window, said Jason Stratman, a volunteer with the organization.

Volunteers run the organization, which seeks to raise awareness about fibromyalgia and offers support through groups in Langley, Surrey, Abbotsford and Chilliwack. The charity is funded by grants and donations.

Young said that the Langley RCMP has no suspects in the theft. RCMP Officer Holly Mark wasn’t able to obtain information on the case during the holiday on Monday.

Sunday, October 11, 2009

How is Neurofeedback Being Used Clinically?

Migraines, Headaches and Chronic Pain

Thearapists and MDs report that the frequency and intensity of migraines are often reduced- and sometimes eliminated. It appears the increased brain stability reduces the brain’s susceptibility to migraines. Clinicians report that improvements tend to holds, and medications can often be reduced. Chronic pain improvements (how the brain manages pain) are often significant, even in the most sever pain syndromes such as RSD.

• Sleep Dysregulation

One of the first changes clients typically report with Neurofeedback training is sleep. Changes often include improvement in insomnia, bruxism, poor sleep quality, difficulty waking, frequent waking, and nightmares.

• Autism, PDD, and Reactive Attachment Disorder

Autism, PDD, and RAD are the fastest growing areas of Neurofeedback. The calming effects of Nuerofeedback produce noticeable results quickly in these severely affected populations.

• Substance Abuse

In a study soon to be published, Neurofeedback was compared with a 12 step program. The population was a crack, cocaine, methamphetamine, and heroine users. Sustained abstinence was 5 times greater with the group that got Neurofeedback taining. This confirms previous published studies with equal results for alcoholics. Substance abuse is an obvious form of poor self-regulation, and self-medication. 50% of this population is ADD/ADHD, many have mood or sleep disorders.

• Epilepsy

Multiple peer-reviewed studies show a reduction in seizures that are non-responsive to medications- and that the training effect holds. An MD recently reported on a 7 year old patient experiencing up to 100 seizures a day. He was uncontrolled on medication, under supervision by Boston Children’s Hospital. With extensive Neurofeedback, he is now seizure free and off most medications.

Neurofeedback is not a treatment that “fixes” these problems. All of these problems at least in part relate to some type of brain dysregulation. Particularly since the 1990s, neuroscience has identified “brain problems”- departures from a normal population that can be seen in a qEEG, SPECT scan, or other types of brain map. EEG training helps improve brain regulation, which usually helps reduce symptoms related to brain dysregulation.

Wednesday, October 7, 2009

The Whitcomb Method

Last year, after watching numerous videos regarding this method. I almost went to see this Doctor. His practice is a three-four hour drive from here.  I was going to take advantage of lodging at a home where someone offer their homes out to patients. I was told that it could take a month or more for treatment to work and stay effective. I was ready to pack up my things and go! However, at the time I didn't have health insurance, and the costs were to much of a burden on us. Well, I really do believe things happen for a reason. After reading these allegations, I'm glad I didn't go after all.

A south Lake Tahoe chiropractor claims he has discovered the cause of a painful, chronic condition. He charges patients thousands of dollars for his cure. But the I-Team has uncovered serious questions about whether it works and whether the treatment is perhaps even dangerous.

A retired investigator for the state chiropractic board tells us this is the one case that he could not forget -- the one that got away, in his words. And he is frustrated that the board has been taking no action.

"It actually doesn't hurt, it actually feels -- feels good," says chiropractor Paul Whitcomb.

For a small town chiropractor, Whitcomb has a sophisticated marketing operation.

He posts videos on the Internet to promote his treatment for fibromyalgia. The symptoms include chronic muscle pain, fatigue, headaches and depression.

Medical experts we talked to say there is no single known cause for fibromyalgia, and no cure. But Whitcomb claims to have discovered the root of the problem -- a misalignment between the first vertebra and the skull. After six days of treatment, one patient makes what appears to be a miraculous recovery.

"I have no pain. I feel fantastic. I'm able to climb stairs," says Joan.

Then, there are the appearances on local TV, like a religious show in New Mexico, his book and a telemarketing center that his son runs out of Orange County.

All this self-promotion has helped build Whitcomb's fibromyalgia relief center in South Lake Tahoe into a thriving business, drawing patients from around the country and the world.

"Just like that. And that's enough. It's that simple," says Whitcomb.

He calls his treatment "The Whitcomb Method," a quick neck manipulation, three times a day, five days a week, for at least two months. The cost -- $7,000 and up. Whitcomb claims a remarkable success rate.

Dan Noyes: "So you're saying 94 percent of the time, 95 percent of the time, it works for people."

Paul Whitcomb: "This is an estimate, but I think that's pretty accurate. It works for that many of the people."

But there is a long list of patients who say the treatment does not work, and the added costs of staying in Tahoe can be expensive.

"My pain was definitely worse. I felt a heck of a lot more depressed, and because I'd been, you know, I'd been duped for ten grand, I mean, who feels great after that?" says former patient Walter Schulte.

Schulte is among at least nine patients who have filed complaints with the California Board of Chiropractic Examiners.

"I contacted maybe 40 to 60 people, and a high majority of them were ill again," says former patient and employee Susan Uribe.

Uribe says she worked at Whitcomb's call center in April and that many of the former patients she contacted were in serious financial trouble.

"A lot of them were crying because a lot of them now were facing bankruptcy," says Uribe.

"Once the word got out that I was investigating it, I was getting calls from all over the country," says Al Dockus, a former investigator with the California Chiropractic Board.

Dockus was the investigator assigned to the case. He retired this March after seven years with the chiropractic board. This is the one case he says he cannot forget.

"When I started working on this case, it was just so egregious what this man was doing to these, to these victims. To me it was a slam dunk," says Dockus.

As part of the investigation, an independent chiropractic expert reviewed the medical records of 10 patients and concluded Whitcomb committed several acts of "unprofessional conduct," including "incompetence... repeated acts of gross negligence...[and] excessive treatment."

Wallace Sampson, a retired oncologist, has spent 30 years debunking alternative medical treatments. He is critical of chiropractic in general, but especially of Dr. Whitcomb.

"With each one of these neck manipulations you increase the chance of a stroke," says Sampson.

There are some studies that question that link, but Sampson says he sees no merit to Whitcomb's technique.

"This is not only below standard. There is no standard that says you could do anything like that, and you shouldn't get away with it," says Sampson.

Noyes: "Is there any outside medical research, anything at all that says that what you are doing works and it is not dangerous to the patient?"

Whitcomb: "There are a couple of neurosurgeons who are doing the same thing who have been doing research in this as well."

Noyes: "Which one?"

Whitcomb: "Dr. Rosner."

That is Dr. Michael Rosner from North Carolina who had his license suspended in 2003 for performing unnecessary brain surgeries on eight patients.

"These are just tools we've developed. We use these for testing," says Whitcomb.

When Whitcomb says tools, he means it. Those are attachments for a socket wrench, outfitted with rubber tips.

Noyes: "You buy this stuff at a hardware store?"

Whitcomb: "Yes, mmm. Actually at an auto parts store."

"This one was totally off the wall. I've never seen anything like it. And anyone I explain it to says, 'You're kidding me. This guy's doing what?'" says Dockus.

Dockus says it has been a frustrating wait. But more than three years after that first complaint, and just a day before our interview, the chiropractic board finally took action.

"I think it did take too long. Yes, absolutely," says Brian Stiger, executive officer of the California Board of Chiropractic Examiners.

The board is moving to revoke Whitcomb's license. The complaint forwarded to the attorney general's office charges Whitcomb with administering "excessive treatment" and making "sensational statements which are intended to deceive the public."

"We have evidence to support taking action against Dr. Whitcomb's license," says Stiger.

"Are we taking advantage of desperately ill people? I think we're providing something for people so they can recover. Is our treatment perfect? It can't be perfect. Nothing's perfect," says Whitcomb.

Whitcomb is not only facing the possible loss of his license, he could also be fined $40,000 or more to cover the cost of the investigation. A lawyer for the doctor tells us he will demand a hearing on the complaint and fight it to the end.


Arthritis Radio

Thanks to the Arthritis Foundation they sent me this tweet I wanted to share.

Follow them @ AFWWPA on Twitter.

Arthritis Radio Episode 9, Part 2: Fibromyalgia: The Mysteries, Diagnosis and Treatment


This interview answers questions such as: What are the symptoms of Fibromyalgia? How is Fibromyalgia treated? What is the course of the condition? And what is ahead for Fibromyalgia research?


Also be sure to check out Part 1 of this interview, which can be found below in our previous post.


Enjoy the interview!


Tuesday, October 6, 2009

A Man With FMS?

A Man With FMS?

Here is a story about a man who struggles before during and after his diagnosis of FMS & CFS. Great read!

Monday, October 5, 2009

Saturday, October 3, 2009

Share Your Fibromyalgia Story

If you have a personal Fibromyalgia story & would like to share it on my blog, please email me at istacey@ymail.com 

Friday, October 2, 2009

What Causes Insomnia?

Insomnia is the body's way of saying that something isn't right. Things that may cause insomnia include stress, too much caffeine, depression, changes in work shifts, and pain from medical problems, such as arthritis.

Many people have insomnia. People who have insomnia may not be able to fall asleep. They may wake up during the night and not be able to fall back asleep, or they may wake up too early in the morning.

Thursday, October 1, 2009

What is Neurofeedback?

I would like to thank tammer17 (one of my twitter followers) for bringing up this topic.

This type of therapy is being use for chronic pain suffers as well. 

I will be posting more information on Neurofeedback along with the effects of the therapy, through out the month. 

Neurofeedback is biofeedback for the brain. Simply put, it exercises and helps “strengthen” the brain, calms it, and improves its stability. It’s easy— virtually anyone can do it.

Using computerized feedback, the brain learns to increase certain brainwaves that are helpful for improved function. The brain can decrease excessive fast or slow
brainwaves that interfere with good function. Over time, the
result is a healthier and better regulated brain.

For example, if someone has excessive amounts of certain 
EEG frequencies, (theta or alpha) in the frontal lobe, they
might experience depression or OCD (Obsessive/Compulsive
Disorder). By training the brain to reduce slower brainwaves
and increase fast brainwave activity, symptoms are often
reduced. Over time, the new brain behavior is “learned.

Neurofeedback, psychotherapy, and medications work hand-
In-hand. Training can be used for patients on or off medications.
There are no known lasting side effects after 30 years of research and clinical use. As the brain stabilizes, other modalities become more effective.

Wednesday, September 30, 2009

Talking to Your Children About Fibromyalgia

Margaret struggled to stop her tears. Jeff, her 10-year-old son, would be bounding through the door any minute, full of energy, smiles, and chatter about how many strikes he pitched at his Little League game. She had promised herself that she would go to this game no matter how much she hurt, how tired she felt, or how difficult it was to move—yet here she was, slouched over the kitchen table, barely able to hold her body upright. She had never spoken to Jeff about fibromyalgia because she didn’t know where or how to begin. She barely understood all the ins and outs of FM herself, so how could she explain it to him?


Adults often underestimate a child’s ability to understand a situation and forget that the ability to cope or “bounce back,” referred to as resiliency in psychological research, is what allows children to adapt and grow in a healthy fashion. In an effort to protect a child from sad or unpleasant information, adults often try to shield them from the truth—forgetting that, from a very early age, children demonstrate an ability to know when something is not as it should be. They can tell when their parents are upset with each other, even if they witnessed no argument. They can sense when a parent or grandparent is not well, even when everyone is careful not to speak about the subject when the child is within earshot. Nothing gets past a child.


So, rather than trying to shield your child from the truth about FM, follow these steps to help your child understand what you’re going through.

  1. Sit down with your child someplace quiet and free of distractions.
  2. Make eye contact with your child, and try to place a comforting hand on your child’s arm or leg. (If the child does not want to be touched, do not take it personally. We all know what it feels like to not want to be touched sometimes.)
  3. Be open and honest. Children know when an adult is trying to sugarcoat the truth or slip something past them.
  4. Use language your child will understand. Explain that the reason why you can’t do as much as you used to, or why you get tired more easily, is because you have have something called fibromyalgia. When they ask what that means, relying on the Latin derivation of the word comes in handy: “fibro” means fibrous tissue, “my” means muscle, and “algia” means pain.
  5. If you start to cry while you are talking, take a moment to regain your composure and let your child know that grown-ups cry sometimes when they are talking about something that upsets them, and that it is perfectly okay. Your child may become tearful seeing you cry, but that’s the perfect time for a hug.
  6. Be clear that, when you sometimes don’t do an activity that you planned on doing, it’s not because you choose to alter plans, or because you don’t love your child; it’s because of excessive pain. Let your children know that you love them no matter what!
  7. Allow your children time to ask whatever questions they may have. Answer these questions as honestly as possible and at a level they can understand. Be careful to not give them more information than they need. If you give an answer, and it is not enough, the child will ask for more information.
  8. Keep your initial talk short—under 10 minutes—because children’s attention span is limited. You can always revsiit the topic at another time. This is a case when you really need to follow the child’s lead. Often kids like to absorb information and think about it for a while before asking additional questions.
  9. Last, but certainly not least: there is no need to argue with your child’s feelings. Remember, those feelings belong to them, and it is not your job to make them see things your way. There are more ways to see and understand things than just from your own point of reference.

Remember, the goal here is to be honest and to produce a strong sense of belonging and understanding for each family member.

Shelley Slapion-Foote, diagnosed with fibromyalgia in 2000, is a licensed psychologist in Florida.


Tuesday, September 29, 2009

Maintaining a Positive Attitude: Ten Strategies

"Have a positive attitude." How many times have we heard that one? While our emotions can not cause fibromyalgia or chronic fatigue syndrome, they no doubt affect our symptoms. But how can we maintain good thoughts when our bodies feel so lousy? This challenge, of course, does not pertain exclusively to chronic illness, but to any time when things do not go as we wish. But in the case of ongoing illness, seeing the positive presents a continuous struggle.

Yet our moods are not perfectly correlated with our physical state. Most likely we can all recall times that despite much pain or fatigue, we were able to cope and even achieve high spirits. Perhaps the weather was perfect, good friends visited, we just accomplished something or helped somebody, making us feel good about ourselves. Other times, depression seems to take hold even when our physical discomfort is at a manageable level. Why is this? Answering this question is the key to finding optimism.


To me, the vicissitudes of fibromyalgia feel like a swim in the turbulent sea -- sometimes it seems we have fallen and the waves continue to crash on our heads, as we fight to rise, only to be knocked down yet again. But that same ocean sometimes allows us to find a wave we can ride smoothly to the shore.


What can we do when we feel under the waves? How can we find the strength to climb back on top, and the patience to know that we will? Here are ten cognitive exercises I use to maintain the most positive attitude I can:


1. Expect bumps! It is important to acknowledge that we will sometimes feel down. Who wouldn't in our condition? But by expecting rather than dreading down time, such periods become more tolerable. In addition, recognizing that we will have blue periods helps keep them in perspective. We will be able to say to ourselves, "I was depressed before, and got out of it; this time, too, it will pass." It is easy to forget that before our illness, there were times we felt down. Now these periods are wrapped up in our medical problems; but everyone gets depressed some of the time. After accepting that we will sometimes feel sad, and even experience self pity, we can concentrate on ways to shorten these periods and make them fewer and farther between.

2. Track the changes. Keeping track of moods helps put ups and downs into perspective. During your best times, make a conscious attempt to capture the feeling. Leave notes on your wall attesting to the way you feel. Living with chronic illness easily creates a Jekyll-and-Hyde persona, where your optimistic self and your flare-up self are not sufficiently acquainted. When we feel bad, it becomes quite difficult to imagine that things can be otherwise. Similarly, during times of improvement, it's amazing how quickly we may forget how bad a previous period was, making subsequent flare-ups not only intolerable but shocking. Counting and measuring the duration of the bad times -- as well as the good ones -- can put them into perspective. It may be that over time, our worst occurs about once a month, although it feels much more frequent. This knowledge is empowering, because we can remind ourselves that a bad flare is, for example, our monthly temporary setback, and find ways to ride it out until our baseline returns.

3. Stockpile fun distractions. We all need to keep lists handy of the things that make us happy. One of the cruelties of our condition is that when we need distractions most, we are least equipped to seek them out. For this reason it is important to compile a list of our favorite activities when we are feeling optimistic to be used when we most need them. People with fibromyalgia often describe how even their worst pain can be put on a back burner, so to speak, when they become engrossed in an activity. This is not only a psychological but a physiological response: our brains can only process so much input at once. When we are engrossed in a beautiful movie, talking to a good friend on the phone, or listening to our favorite music while lying on a heating pad or in the bathtub, we can trick our pain receptors into leaving us alone! Meanwhile improvements in spirit have an added impact on our entire well-being. Laughter is good medicine; while dwelling on our troubles tends to compound them.

4. Shape your perspective. Is the glass half empty or half full? Perspective determines, quite literally, how we view the world. Having a chronic illness creates an ambiguous construction of reality for us. Am I, for example, a successful cripple or an unsuccessful professional? In American culture, much emphasis is placed on independence, individualism, and achievement. Through this lens, developing a condition that makes us feel more dependent and less productive is likely to be a huge disappointment. Yet as we get older, it becomes more likely that we, or somebody close to us, will experience debilitating problems. People are often forced to adapt to sudden, new conditions by adopting a perspective that accommodates change. Our perspectives are shaped by the comparisons we make and the expectations they create. Consider, for example, the immigrant who had been practicing medicine in his home country, but flees to the US to escape a repressive political regime. Here he works as a janitor; after years of medical study, he has lost a prestigious and rewarding occupation. Yet he is thankful for the opportunity to work and wakes each day driven by hope, perhaps, of a better future for his children. Yet his difficulties are also quite apparent. What keeps his spirits up and makes him thankful rather than bitter? His perspective.

5. Create a new self. If we hang on tightly to the "old self" we were, finding the value of our "new self" becomes increasingly difficult. (We may even exaggerate how fit that person was: "I didn't need any sleep, I never felt bad, I could do anything!"). This does not mean we should totally discard our previous conception of self; rather, we need to find a way to integrate the two. In other words, we should seek to find in our new bodies new ways to enjoy and experience the things that we had done before. Consider all the aspects of yourself that you like, and the things that you most want to do; then step by step, find ways to achieve as many of these as you can. At the same time, recognize that our expectations must shift so that we can once again meet them.

6. Don't forget the good stuff. While the physical symptoms of fibromyalgia can feel all-encompassing, there are other parts of our life--our social relationships, passions, family -- that also exist. By focusing on the positive aspects of our life, we become more aware of how many there are: the friends that stuck by us, the things we still enjoy, and the accomplishments we have been able to make, however small, under very different conditions. Because each task now represents a challenge, we should celebrate whatever we manage to accomplish. As we have been told many times, if we shorten the list and pace ourselves whatever we do eventually adds up to something to be very proud of.

7. "Oy, it could be worse." (The Jewish mantra). As comparisons shape our view, it is helpful to find comparisons that will provide a fuller appreciation for what has befallen us. OK, the "eat because children are starving in (fill in the developing country)" did not work for you as a child. But try to think of it this way: Many bad things happen in the world. The odds are that some of them will happen to us. Not because of anything that we have done, but because, as the saying goes, shit happens. It takes only a short view of the evening news to remind ourselves of the horrors occurring every day. So, this is what has happened to us. We too were caught. Let us examine what we have: (a) We know our condition is not terminal, so we need not begin contemplating our pending mortality. (b) As bad as we sometimes feel, our underlying condition is not going to get worse. We have already experienced the worst, and, to our credit, have gotten through it. (c) Although few people achieve permanent remission, many improve significantly. As we understand how our actions and emotions influence our general well-being, we can find ways to partake in more and more activities.

8. Keep the hope alive! There is so much room for hope. It has only been since the 1990s that our condition has acquired any legitimacy from the medical community. We are in a far better position than the generations before us who suffered without ever receiving validation. We know much more about the important roles of exercise, medication, stretching, pacing and meditation to bring relief and a sense of control. Furthermore, as medical research increases, it is only a matter of time before better therapies (and perhaps even a cure!) are introduced.

9. Lean on me! A single most important predictor of how we do is the support network we create. We certainly appreciate what it means when someone helps us when we feel especially lousy. Make sure that, within your means, you continue to be a good friend to those you care about. We still have lots to give. During a good moment, write to a friend that you are thinking about her. Help your family and friends find ways to maintain their relationship with you. Invite them to your place to eliminate traveling (and do not worry what your place looks like! They came to see you, not your housecleaning abilities). Try to be open with family members, while at the same time supportive of their needs. Put yourself in their shoes as often as possible -- it can be scary to have someone you love be sick! Also make sure to seek help outside of your immediate circle so as not to drain your closest friends and family. There are now all sorts of support groups, both live and in virtual computer space.

10. Indulge whenever you can. We have lots of time to focus on our thoughts. Most people do not have the luxury of taking time to relax and think. OK, we did not ask for these "time outs." They are demanded by the needs of our bodies. Nevertheless, we have control over how we use this extra time. Instead of dwelling on what our bodies are not doing, give your fantasy full liberty. Turn these rest periods around to be indulgent time. In our mental playground, we can practice dance steps we used to know (for there will be some times we can dance!). We can use the time to think through problems we face and how we want to spend time when we are feeling ready, or we can analyze a movie we recently saw, say prayers, or mentally write a letter to a friend. The article you are now reading is a product of a spell in the middle of the night, when I lay in bed, unable to sleep. After taking steps to make myself more comfortable, I decided to think about what I would write next. I figured that if I fell asleep, great! But if not, I'd have thought through my next article. It was about this point when I, satisfied, went off to dreamland.


Deborah A. Barrett has a Ph.D. in Sociology from Stanford University. Since then she has worked as a postdoctoral fellow at University of North Carolina at Chapel Hill, Emory University, and Duke University.


Which of The Following Do You Have?

What other condition[s] do you have?

Have you ever had the following conditions?

I know it's really hard to smile some days, but after watching this video you'll be surprised.

Learn How To Meditate Part 1

Part 2

Videos On Fibromyalgia & Chronic Illness Awareness