I intended to write this follow-up post on my experience with Dr. Whitcomb and his Neurologic Relief Centers Technique last Monday, but have been sidelined by a bad flare-up. Yes, I do attribute my flare to the workshop and testing technique, but even so, I intend to give you a fair account of the workshop, although as with everything on my blog, it will be full of my opinions. It may be a lot to follow, so I hope I have managed to present a readable review.

The logistics of the day went like this:

I was initially invited to the workshop by a local acupuncturist who I will call “Dr. J.” The workshop began at 1PM on Friday, July 24. The local acupuncturist as well as several other local chiropractors actually paid for a training session with Whitcomb. They spent all of Thursday and Friday morning training to learn his technique. Then at 1PM on Friday, myself and the other patients whom each practitioner invited arrived for a lecture by Whitcomb. After the hour long presentation, we broke off with the practitioner who invited us to be tested to see if the technique would benefit us.

So What is This Technique?

The technique involves several minutes of firm pressure to either the anterior or posterior neck trigger points. The pressure is intended to release the tension on the nerves that travel through the meninges, and relive the pain and symptoms this tension causes. Whitcomb attributes most symptoms of FM to this compression. His name for this is meningeal compression, which he uses interchangeably with Fibromyalgia.

I brought three of my support group members with me. As you can imagine, given my impression of Paul Whitcomb and his clinic, I approached this event with a healthy amount of skepticism. Adding to my skepticism was the information one of my resourceful members shared with me about Whitcomb. He is still under investigation by the California Board of Chiropractic Examiners. There is still a possibility that he may lose his license for charges of administering “excessive treatment” and making “sensational statements which are intended to deceive the public.” He has recently closed his practice in South Lake Tahoe and is traveling nationwide to teach his technique. The reason he gave during the presentation for this move is to eliminate the need for patients to travel to him.

Whitcomb’s Presentation

The presentation Whitcomb gave was full of dramatizations: “Fibromyalgia patients are closest to prisoners of war.” “The Fibromyalgia patients who came to my clinic did not want to continue living.” “Eighteen percent of Fibromyalgia patients commit suicide.” I am really curious to know where he got that number, but unfortunately he did not allow for Q & A. He never once described Fibromyalgia patients as type A, as givers, or as overachievers, which in my experience is closer to the truth. Instead he painted a very bleak and desperate picture of us. Most of his claims were dramatic and over-the-top. He did not share anything about FM that I did not already know, but he did supply us with many statistics about his practice and the tremendous results he gets; such as 85% of his patients remain symptom free, only 6% lost the benefit of his correction and treatment after leaving his clinic. It makes me wonder why he would choose to close up shop.

As we moved on to the testing part of the workshop, we were all required to sign a waiver agreeing to let our test be recorded on video and used at their discretion. I refused, as did the other members of my group. I attended this workshop to research and share as much information as I could about Whitcomb’s technique. I would not agree to have my image shown in support of it and without my knowledge. Dr. J expressed our concern and they agreed to let him test us without being filmed.

I think because we were not being filmed, Whitcomb basically left Dr. J on his own, while paying closer attention to the chiropractors he trained and their patients who were being filmed. Also, Whitcomb unfairly sold Dr. J on training with him. He told Dr. J that “the test is the technique,” but then during the presentation he said just the opposite, because the chiros learning the technique also learned a particular adjustment that an acupuncturist like Dr. J is not legally qualified to perform. When I questioned Dr. J about this he said, “Yeah, I guess he kind of fooled me there.” So the “technique” that Dr. J paid to learn and implement into his practice is not complete. I really feel like Whitcomb snowballed Dr. J and any other non-chiro who paid to learn his technique.

And Now I Share Why I Have Been in a Flare

My first instinct was to not be tested, and I wish I had followed it. Instead I sat and watched many patients receive the technique and seemingly have instant improvements. One older gentleman with Parkinson’s had a noticeable reduction in his tremors. Another man was able to lift his arm above his head for the first time in months. I should note that we were not all fibromyalgia patients in the room, although the presentation was geared specifically to FM. After observing for some time, I was just too curious to opt out, so I hopped up on the table and let Dr. J proceed. After a short palpation he concluded I was sorest and tightest at the trigger points on the side of my neck below my ears. I concurred with this assessment.

He used metal rods with soft ends to place steady, firm pressure on my neck for five minutes. It did not take long for me to begin to feel nauseous. I tried to breath through it. Dr. J frequently check with me to see if I had a reduction in pain. I had rated my pain a 6 on the 1-10 scale, with 10 being worst. That day my neck, head, shoulders, upper back and hips were painful. I did not feel any change as I laid there. He asked me to focus on my hips. Laying still I felt no difference, but when I moved my hips, I eventually felt a reduction in pain. After the test, upon standing, my right hip was free from pain, and my left was improved. There was no improvement to my neck, head, shoulders or upper back.

I remained nauseous for sometime after the test. I had driven my members, and did not feel well enough to drive right away, so it gave us an opportunity to stay and talk about the workshop. The test had zero effect on two of my members, and two of us had a slight decrease in our symptoms. For one member the pressure was too painful to bear. Her pain level had been very low to start the day, and after her reaction to the test, Whitcomb remarked he wasn’t sure why she was even being tested if she had no pain. He told the second member who did not experience any relief that she was just being difficult. When I remarked to him that I did not experience any relief in my upper body he said I just needed to have the test performed longer. We all felt underwhelmed by the experience. It did nothing to change my opinion of him that his care for FM patients is motivated most heavily by his bottom line.

Conclusion

The proposed follow-up with Dr. J was to involve an initial consultation, and then three consecutive days of treatment, which would require three visits each day. After the three days of visits he would reevaluate and propose further treatment. It is expected to take weeks or months for complete healing, and then there is likely to be maintenance to assure the meningeal release holds. Given that I have been in a flare since receiving the test at the workshop, and that the improvement I felt in my hips lasted only an hour or two, I called Dr. J and told him I was not interested in pursuing this treatment. He then told me hed decided not to implement the technique into his practice, and that he too was underwhelmed by the experience. I have to say I think he made a very wise decision.

So there you have my experience and my opinion on the matter. I feel like a little guinea pig, but I am happy to have had this experience to share. When Whitcomb had his Web site up, there were a lot of testimonials of people who swear by his technique. One of my members who attended the workshop has personally spoken with several of his former patients who claim to be symptoms free. She was considering attending his clinic and did a tremendous amount of research. She was the most hopeful of us last Friday that his technique would benefit her, but unfortunately she was one of the two it did not.

If Whitcomb comes to your community to teach his technique, I cannot recommend that you attend his workshop, but as we all know, what works for one will not for the other. Even after this particularly bad flare, I still plan to keep an open mind about treatment options available and useful to us. But I most certainly will not be having my meninges released anytime soon!

NOTE: On Tuesday October 27, FibroHaven was moved from a WordPress domain to its own URL. In doing so the comments of each and every post have been affected. They are no longer chronological or nested (if they were a direct reply to a previous comment). It happened on each post, but because this particular post has been so active it is especially troublesome to try and follow the comments logically. I apologize for this confusion and we are trying to fix it, but it appears it may not be possible.

I can assure you no censoring or editing of comments has occurred. If you are interested and brave enough, feel free to read the comments and try to piece them together. I do warn you against taking things out of context as that has already happened. To avoid any more confusion, I am turning off comments on this post until the issue is resolved. If you have something you absolutely must say in response to this, feel free to email me at fibrohaven@gmail.com.

Cheers,

Dannette

10/28/09

 

To the AP editors:

The recent Associated Press story on fibromyalgia hardly qualifies as news; it merely regurgitates the same arguments that have been published in the past and offers the opinions of the same two men who have built careers out of drawing attention away from the hundreds of scientists who continue to make amazing scientific strides toward understanding the underlying cause(s) and pathophysiology of what fibromyalgia patients experience. By perpetuating this message, the article implies that it is more acceptable to debate names or labels for this “set of symptoms” and to point fingers at the usual “villains” (i.e.: pharma and the nonprofits who accept money from them), than to focus on the millions of desperate, patients who deserve to have a voice in the discussion. The fact is that credible medical institutions and organizations recognize fibromyalgia as a life-altering disease; the fact is that patients who suffer with FM depend on the medical system (including pharmaceutical companies) to help them inform the public that this is a very real illness and that they need treatments, including pharmaceutical agents, to help them get through each day—and to look forward to some sort of quality of life in the future.

This article misinforms readers in a way that undermines and victimizes innocent people. By telling only selective parts of the story the author is perpetuating misperceptions and making it difficult, if not impossible, for readers to grasp what is truly important: that we need to stop debating and pointing fingers and start asking why it is perceived as acceptable to stigmatize a patient population just because medical research hasn’t yet provided us with all the information needed to understand that particular illness. Every illness seems to go through a stage of having to prove its legitimacy, but why should the patients be suspect during that phase of research?

Why would AP print information that is simply not true—i.e.: people with fibromyalgia are “more likely to have a history of mental illness and are economically disadvantaged?” That is totally false, as is the writer’s statement that the National Fibromyalgia Research Association received pharma money to fund Dr. Clauw’s functional MRI study. The money for all of the NFRA’s funded research came from the founder (the husband of a fibromyalgia patient), general donations, and revenue generated from a nonprofit bingo game. (Yes, the FM community has had to rely on bingo games to fund our research!)

How can we allow the system to fail millions of people whose only “fault” is to have developed a devastating illness? Along with the rest of the fibromyalgia patient community, I look forward to the day when society (including the medical community, the media, and our government agencies) accepts the responsibility of treating fibromyalgia patients like any other group of chronically ill patients; when it is a given that fibromyalgia will be further studied, that treatments will be developed and made accessible to patients, that the media presents the facts rather than perpetuating threadbare controversies.

Now that would be news worth printing.

Sincerely,

Lynne Matallana
President, National Fibromyalgia Association

 

For more information on The National Fibromyalgia Association and President Lynne Matallana please visit the NFA website.

It has been nearly thirteen years now since the onset of my FM. At the time I was a healthy and active person. I worked full-time in management at a high-energy, high-stress job which I thrived on. I had one speed during this period of my life – fast and furious! In addition to working full-time, I took evening college courses. I had an active social life which kept me going the nights I was not in class. I was physically fit and active – rollerblading, hiking, backpacking. My days were full and my down time was pretty much non-existent.

And then early one morning as I was showering for work, everything changed. It was about 5AM. I had my back to the water and turned towards the wall to grab the shampoo. I felt my feet slip out from underneath me and understood immediately I was going to be hurt. There was nothing I could do. Slowly I started falling to my right, out of the tub and towards the toilet. There was only the thin, filmy shower curtain to slow my progress. With nothing to grab hold of, and no way to stop my momentum, all of my body weight was behind the impact as my head smacked into the porcelain toilet tank. The collision was strong, solid and in that moment painless. I fell to the floor stunned, awaiting the pain that I knew was lying just beneath the shock.

From there my memories are vague. I recall the nurse in the ER asking me “Can you point to your nose for me?” I recognized the word “nose,” but I could not contribute the familiar word to any part of my body. I hit my head just above my right temple. The impact was so hard I broke the lid to the toilet tank. Don’t think that hasn’t been a source of humor for my family over the years! It is one of the reasons my husband and I named our business Hard Head Media (the other being that he is the most stubborn person in the world!).

I was on disability for 6 months trying to recover from this accident. I never did. The trauma to my brain improved, but the symptoms of Fibromyalgia began to set in. The all over body pain was the worst of it. It was so bad I had to lay in bed naked because I could not stand to feel clothes against my skin. Even the weight of the sheet was sometimes too much. PAIN! Everything else was gone and pain became the dominant fixture in my life. Each time I complained to my doctor I was feeling worse, she said “You couldn’t possible be. Enough time has passed. You should be feeling better by now.” It would make me so angry and desperate to sit in her office and plead with her for help, only to be handed another prescription for drugs. I did not want to mask the symptoms, I wanted them to GO AWAY!

I was persistent. Finally she sent me to a Rheumatologist who then sent me to a Neurologist. The Neurologist was fun! I was his last patient of the day. My appointment was for 4PM. At 5:30PM I was still sitting in his waiting room. First he tried to send me away, but I refused. I wanted answers and he was going to give them to me. He took one look at me – not my chart, just me – and said “You want me to tell you you have a brain tumor. Well I am not going to tell you you have a brain tumor. But if it turns out you do have a brain tumor, you are the kind of person who will sue me.” He was a lovely man. We still exchange Christmas cards to this day! But he did finally do one thing right for me. I sat in his office determined and unintimidated and he finally consented that he thought I had Fibromyalgia. I had never heard the term Fibromyalgia before, but I was relieved to have finally been given a name for what he believed was causing all of my symptoms. He referred me to a pain specialist and she was the one who helped me get my symptoms under control.

Dr. DuQuett is her name. She was (probably still is) a no muss, no fuss kind of doctor. She was firm, direct, and not for a second did she encourage me to feel sorry for myself or let myself feel victimized. She is the one who refused to extend my disability. She forced me to redefine my life and discover how I could still be a productive person, even with a chronic pain condition. Tough love. First she put me through 16 weeks of therapy at a pain clinic though. There I learned how to reduce my symptoms with physical and aquatic therapy, meditation and relaxation, and biofeedback. I have said it before, I believe she gave me an incredible gift. I still suffered through many Fibromyalgia flare-ups after my treatment, and there were times that I did wish I was on permanent disability, but the majority of the time I managed, and sometimes I even thrived.

From when my treatment at the pain clinic ended in 1997 until the next inciting factor in 2006, I managed fairly well. My life was different. Fibromyalgia was a constant presence, but I learned to adjust to my new reality. I became a freelance sales rep and grew my territory into one of the top in the nation. I continued with my evening college courses, and in 2004 graduated with a degree in Literature and Writing. I got married to the amazing man who I had just started dating 6 weeks before the tub accident. We bought our first home together and traveled frequently. Life was good. But that all came to a screeching halt on the day my Fibromyalgia got superpowers! Dunt, dunt, duhn!!!

To be continued…

Continued here: How my Fibromyalgia Got Superpowers.

I HATE DRUG COMPANIES! I hate that their sole purpose is to profit off the needs and health concerns of the public. I hate that they view every illness as an opportunity to line their pockets. I hate that they perpetuate a culture of sickness by treating symptoms and not caring to find a cure. Why would they ever want to find a cure. A cure would be disastrous to their bottom line. I hate that they find a way to create need through their marketing and sales techniques. I hate that they look specifically for disease and illnesses that are marketable. I hate that they have now zoned in on Fibromyalgia and that FM is now the newest, trendy marketable disease. Don’t believe me? Well then let me share with you what the company analyst for Savella had to say.

Savella is the newest FDA approved drug for the treatment of Fibromyalgia. Cypress Bioscience and Forest Laboratories are partners in the creation of Savella. Here is what their analyst had to say:

“With the approval of Savella, we expect Cypress Bioscience to become one of the few profitable biotech companies starting in 2009,” Citi analyst Dr. Lucy Lu said in a note to investors. “Moreover, we view fibromyalgia as a real and significant market opportunity, which is large enough to support multiple successful drugs given the heterogeneous nature of the disease.”

I have bolded and italicized the part of the statement which infuriates me. They are letting their investors know that they have hit the disease jackpot – a real and significant market opportunity. Fibromyalgia is a complicated and multi-symptom disease, heterogeneous if you will,  and no two patients experience it the same way. What a wonderful opportunity these complexities present to drug companies. Savella is just the beginning, but if Savella only treats the pain symptoms of FM, then they will have to create a drug to treat the fatigue. And once they have succeeded in masking the pain and fatigue of FM, well then they can work on another PROFITABLE drug for the brain fog and cognition issues. With a disease like Fibromyalgia the opportunities are endless, and that is exactly what Dr Lucy Lu was expressing to their investors in the above statement. She is promising them multiple successful drugs for the treatment of Fibromyalgia.

I feel physically ill right now, but I am sure they are working on a drug for that too!

Well this is one Fibromyalgia patient who refuses to line their pockets. Call me silly, or stupid, or stubborn, but I will not be a passenger on their drug highway. This is the main reason I have made the decision to battle my FM without the use of prescription drugs. In no way am I critical of those of you who are taking prescription medication to treat Fibromyalgia. I know personally of many people who feel they could not function without them. I am not saying that there is not a need for drugs and drug companies, but I am angry and disgusted with the monopoly they have over healthcare. I believe the more profitable Fibromyalgia becomes, the more pressure drug companies will put on researchers and doctors to NOT find a cure. My abstinence will not give them any less power, but for now it is the only stance against them that I can take.

But as a side note, if you are looking to diversify your portfolio, stocks of Cypress Bioscience Inc. surged 33 percent after receiving FDA approval for Savella.

CLINICIAN’S CORNER Treatment of Fibromyalgia Syndrome With AntidepressantsA Meta-analysis         Winfried Häuser, MD; Kathrin Bernardy, PhD; Nurcan Üçeyler, MD; Claudia Sommer, MD  JAMA. 2009;301(2):198-209. Context  Fibromyalgia syndrome (FMS) is a chronic pain disorder associated with multiple debilitating symptoms and high disease-related costs. Effective treatment options are needed. Objectives  To determine the efficacy of antidepressants in the treatment of FMS by performing a meta-analysis of randomized controlled clinical trials. Data Sources  MEDLINE, PsycINFO, Scopus, and the Cochrane Library databases were searched through August 2008. Reference sections of original studies, meta-analyses, and reviews on antidepressants in FMS were reviewed. Study Selection  Randomized placebo-controlled trials with tricyclic and tetracyclic antidepressants (TCAs), selective serotonin reuptake inhibitors (SSRIs), serotonin and noradrenaline reuptake inhibitors (SNRIs), and monoamine oxidase inhibitors (MAOIs) were analyzed. Data Extraction and Data Synthesis  Two authors independently extracted data. Effects were summarized using standardized mean differences (SMDs) by a random-effects model. Results  Eighteen randomized controlled trials (median duration, 8 weeks; range, 4-28 weeks) involving 1427 participants were included. Overall, there was strong evidence for an association of antidepressants with reduction in pain (SMD, –0.43; 95% confidence interval [CI], –0.55 to –0.30), fatigue (SMD, –0.13; 95% CI, –0.26 to –0.01), depressed mood (SMD, –0.26; 95% CI, –0.39 to –0.12), and sleep disturbances (SMD, –0.32; 95% CI, –0.46 to –0.18). There was strong evidence for an association of antidepressants with improved health-related quality of life (SMD, –0.31; 95% CI, –0.42 to –0.20). Effect sizes for pain reduction were large for TCAs (SMD, –1.64; 95% CI, –2.57 to –0.71), medium for MAOIs (SMD, –0.54; 95% CI, –1.02 to –0.07), and small for SSRIs (SMD, –0.39; 95% CI, –0.77 to –0.01) and SNRIs (SMD, –0.36; 95% CI, –0.46 to –0.25). Author Affiliations: Department of Internal Medicine, Klinikum Saarbrücken, Saarbrücken, Germany (Dr Häuser); Department of Anesthesiology, Emergency Medicine and Pain Therapy, University of Saarland, Saarbrücken (Dr Bernardy); Department of Psychosomatic Medicine, MediClin Bliestal Clinics, Blieskastel, Germany (Dr Bernardy); and Department of Neurology, University of Würzburg, Würzburg, Germany (Drs Üçeyler and Sommer).

Conclusion  Antidepressant medications are associated with improvements in pain, depression, fatigue, sleep disturbances, and health-related quality of life in patients with FMS.

 

Even though I have made the personal decision to control my Fibromyalgia without the use of prescription drugs, I will continue to follow and report upon the research that is being done. I think any and all research is very important to the continued advancement in Fibromyalgia awareness and I am happy to pass it on. I hope this information is useful to you.

1. I think I have that too.

2. My sister-in-law has fibromyalgia and she’s still working. She says it helps to take her mind off the pain.

3. But you look okay.

4. Is that a real disease.

5. Maybe you just need some B vitamins.

6. Do you have any percocet? I could sure use one right now.

7. Well, we all start to ache when we get older.

8. Can you hold this box for me? I can’t find my keys.

9. Does this mean you won’t live as long.

10. Well, just try to look on the bright side.

Linda Meilink goes on to qualify each thing on her list, and these clearly come from her own personal experience. But it got me to thinking. What has been said to me over the years that has just made me cringe? So here is my list.

1. Did you see that commercial for the new drug that cures Fibromyalgia? – Now this drives me nuts because, A) It does not CURE Fibromyalgia. It is an anti-seizure medicine which has proven to reduce pain in FM patients. B) Pain is just one of the symptoms of FM and it does nothing to address the others – fatigue, fibrofog, dizziness, sleep disorders, etc. C) It has its own list of side affects that some of us would rather not expose ourselves to, and D) I chose not to take prescription drugs to treat my FM.

2. Fibromyalgia is what they diagnose you with when they are not sure what is wrong with you. - ARGH!!! I heard this most recently from someone who was quoting his friend – AND HIS FRIEND IS A DOCTOR! FM is still under-researched and misunderstood, but it is real, and recent testing is going a long way to prove that. Now if everyone in the medical field would just open their mind to the possibility, great progress could be made.

3. If you would just exercise you would feel better. - It is not that simple. Yes, gentle exercise can be beneficial for fibromyalgia, but it can and does cause flare-ups. It is a matter of slowly building up your tolerance, but forgive us if we do not go out of our way to deliberately cause ourselves more pain. It really is a vicious circle. If you knew something you ate would make you healthier, but that you were going to throw up violently each time you ate it, could you?

4. You can’t be here by 10AM, how about 11:30AM? - Uh, no. When I am down, I am down. I will not magically get better in an hour and a half. But thanks for being flexible!

5. Well it is really common. - Okay, so does that mean it should be easier to deal with? Are you equating it to acne or ingrown toenails? I just don’t understand this comment. Pain may be common, but it is still painful. Common does not equal easy to live with. And part of what makes it seem so common is that it is currently being over-diagnosed, but that is for another post.

6. A lot of people are much worse off than you are. - First off, this is absolutely true. I have a lot of fortune in my life – friends, family, etc. But everything is contextual. This is my life, and this is what I struggle to live with everyday. Somedays I manage well, but others I am a total and complete mess. Does that mean that I am being insensitive to my neighbor who has terminal cancer? No, I don’t think so. It simply means I am struggling and could use a little empathy. So reminding me that it could be worse does not make me feel better, it simply makes me feel guilty for indulging in a little self pity.

7. How is your back? - I got this one a lot after I was first diagnosed 11 years ago. The original injury which brought on my FM was to my neck. I had never had issues with my back, and yet numerous people asked me this. Often the same person more than once. Pretty ungrateful of me to not appreciate their interest in my health, but it always confused and frustrated me. This is a much more appropriate question since the accident two years ago. My back is killing me right now!

8. Have you tried acupuncture? - I would love to try acupuncture, but who can afford it? It is not something you can do one time and reap the benefits of it. It is something you need to do repeatedly, and it is costly. I have not always had insurance, and when I have acupuncture/massage is not covered. It is too bad that holistic medicine is for the most part not covered and that it is so expensive.

9. Maybe you are just depressed. - For a lot of patients Fibromyalgia and depression do go hand in hand, and until recently many doctors believed that FM came out of depression, but that is not the case. Many women with FM have never suffered from depression. I have had some pretty low days, but I can honestly say that I have never been clinically depressed. FM has changed my life so dramatically I have had a lot of trouble adjusting and adapting. I have been mad, sad, angry, unreasonable, and a few times I felt close to losing my mind – but tell me, could you be physically tortured and never respond dramatically to it?

10. Silence. - No response is sometimes the worst response. I have had new doctors sit and smile condescendingly at me while I explained to them I have Fibromyalgia. They never say it, but I know they are thinking that it is not real, that what I am experiencing can be explained away, that I am weak, and a hypochondriac. They say a lot by sitting there saying nothing at all and I hate them for it. I hate their close-mindedness and their pre-judgement of me. I can never get past their silence.

So that is my list. What is on your list?

NOTE: My husband thought this was a little edgy and he could tell I was clearly not feeling well when I wrote it. The very nature of the subject tends toward negativity. I hope this is not too abrupt to read but I am choosing not to edit myself.

This year Rob and I are resolved to improve our health. We are both turning the big 4-0 in 2009 and have decided we want to spend the next decade healthier than we did the last. Because of my Fibromyalgia we have not been able to do the hiking, backpacking and other outdoor activities we once enjoyed doing together. An unfortunate side affect of my FM limitations has been that Rob no longer has his partner in crime to do all those activities with. Even something as simple as walking the dogs has become a solo activity for him.

Even though my doctor released me several months ago, I have frankly been fearful to start exercising again because I know it will lead to pain and to flare-ups, and I live everyday trying to avoid exacerbating my Fibromyalgia. And yet I firmly believe that I need to exercise to strengthen my core and my muscles, which will enable me to better manage my FM. Crazy, vicious circle! Well I think we have found the place that will encourage both of us to exercise and improve our health, and as our gift to each other this year we bought a membership.

Today is actually the grand opening of a brand-new-state-of-the-art Wellness Center which was built just a couple of miles from our house. When I first drove past the two-story, 58,000 square foot facility I had no idea what I was looking at. So I went to their website and found this description:

The Wellness Center offers the only health and fitness experience of its kind in the region. A fully-integrated health and fitness campus sets the stage for a comprehensive, medically integrated environment focused on your total well-being, ranging from day-to-day health maintenance to sports performance training and rehabilitation.

We also place a priority on personalized service. Our team of degreed and certified fitness specialists, dietitians and health educators are able to work collaboratively with you to develop a personalized fitness program that will help you achieve the positive benefits of exercise including:

• Improved quality of life
• Reduced risk of heart disease, diabetes and cancer
• Weight control and enhanced body composition
• Healthier bones, muscles and joints
• Increased flexibility
• Increased muscle strength and endurance
• Increased cardiovascular fitness
• Lower blood pressure
• Reduced stress
• Healthier outlook

After reading this my interest was peaked, so Rob and I went on a tour last month, and before we even got out of the locker room we were convinced this was the place where we could both commit to getting our health back. Not only do they have every high-end piece of gym equipment you would expect to find, but included in the membership are cooking and nutrition classes; meditation, yoga, pilates & qigong classes; three indoor pools with aquatic fitness classes; personal trainers and physical therapists. They even have massage and accupunture, but they do cost extra.

We were beyond impressed with the Wellness Center. Rob calls it a fitness country club. They have everything I need to ease myself back into exercise and they are all about improving health and wellness. I have been interested in Qigong for quite some time, but the only place I could find that offers it is 45 minutes away. Now it is just down the road, and if all is well I will be taking my first class this Thursday. So we are excited, and RESOLVED to get the most out of the Center and improving our health. As a team I believe we can do anything. To quote Rob, we will be “looking fine in 0-9.”

Busy for me with FM is different that it used to be – parties, dinners, lunches, shopping, decorating – I used to thrive on everything Christmas. Now I have to pace myself. I no longer decorate rooms with Christmas paraphernalia, now I am happy to have a simple tree decked out with all of my favorite Polish Glass Ornaments. I love my ornaments. Here are a couple of my favorites.

Poinsettia

Santa Pillow

Madonna & Child

Noah's Ark

I have been collecting these ornaments for years. They are a little pricey, but since my hubby is a Polack, I figured I would honor his heritage by not purchasing the “Made in China” versions. Each year when I break them out to decorate the tree, it is like I am discovering the ornaments for the first time again. I unwrap Noah’s Ark and it is like “Oh yeah, this one is so cute!” You can’t see them in the photo, but there are two of the cutest penguins on the back. I just love the detail that goes into each ornament.

Details! I used to obsess over the details of getting all of my decorating and shopping done. It was like I was constantly competing with myself and what I had done the year before. And once I had all my shopping done, I couldn’t just wrap my presents, I had to WRAP my presents – lots of bells and whistles – fancy paper, handmade bows, elaborate tags and embellishments. I was obsessive. Now that I am writing about this I am starting to think I was nuts! I can’t believe the amount of pressure I put on myself, because certainly no one else was pressuring me.

I have really let all (most) of that go now. Now I just sit back and enjoy what I can do, and I don’t fret over what I can’t. I have already postponed one lunch with a friend, and a dinner planned with my in-laws, and you know what, it is okay. It is okay that I just finished decorating my tree last night, and that there are no signs of Christmas anywhere else in the house. And it is okay that this is only my second blog post in a week.

Boy, don’t I sound all evolved in my current state of acceptance? Well it has taken me 11 years of living with Fibromyalgia to get here. And really I have to attribute a large part of it to this blog. It is like I have finally admitted a deep dark secret, and the burden to be “normal” has been lifted. I was a closet Fibromyalgian! It is such a relief to take off the super girl cape that I used to put on everyday and finally admit – I hurt today, I have limitations today, I don’t think I can make it today. The pressure I felt before was all self induced, no one asked me to try to be super girl. I did it to myself. I think I am being much nicer to myself these days, and I will probably enjoy Christmas much more because of it.

Last week the Chronicle Herald published an article about the results of a recent Qigong trial done on people living with chronic pain.  According to the researcher, Dr. Mary Lynch at Quenn Elizabeth II Health Sciences Centre, “their quality of life and their level of pain got better. And this is just through a simple series of gentle, dance-like moves.”

What is Qigong?  

From the Qigong Institute:

Qigong (chee-gong) is “Energy techniques” or “Energy Skills,” the ancient Chinese internal arts used for over 5000 years to promote health, emotional happiness and spiritual development.  These methods combine movement or postures, breath or mantra, and mind intention to balance and enhance one’s vital, life-energy.  It has been popularly referred to as Chinese Yoga and moving meditation.  These methods formed the early root of Chinese medicine and are still considered an integral part of modern Chinese medicine, along with acupuncture, acupressure, and herbal medicine.  Today millions of people practice Qigong in China and around the world to successfully treat a myriad of diseases, to improve general health, support longevity, and to promote psycho-spiritual growth and happiness.  Most notably, Qigong practice can provide profound relief to stress and strongly enhance the immune function.

The patients in the study performed by Dr. Lynch practiced several simple Qigong movements for 45 minutes a day.  Positive results were found in all patients who practiced the movement for six months.

After “Googling” Qigong and Fibromyalgia together, I found other studies that confirmed Qigong is effective for treating the pain and the multiplicity of symptoms associate with Fibromyalgia.  Some patients showed improvements after only 5-7 sessions over a three-week period.

Before reading the article in the Chronicle Herald I was unfamiliar with Qigong, but after researching and learning of the positive outcomes for people who suffer from chronic pain, I looked for Qigong practices where I live.  I am always in search of natural and holistic means of managing and improving my Fibromyalgia, and Qigong appeals to me greatly.

I found two local practitioners and have already signed up with one.  I emailed her and asked her to tell me more about Qigong and if she had any information on its benefits for people with FM.  Here is her response:

I can firstly say, yes if I were you I would give it a go! Like anything consistent practice will be the way to tell if it is helping your situation because at first like anything it maybe challenging. Your feet remain in one position for the hour practice while your arms move in conjunction with your breath. I guide the entire hour so you always know what to do, as well as help you follow your breath to be with your internal energy. The idea is to cultivate energy, for healing- so there you go- Qigong brings healing energy into your core and circulates it throughout the body to remove stagnation and create lymph flow and detoxification. As a massage therapist I know fibromyaliga influences people’s energy differently but usually they are in need of more of it. This will help! The practice helps build your arm muscles that may fatigue at first but because you tune into Source energy you will feel supported through it by the energy field around you.

Her email was very energetic and encouraging and I am really looking forward to my first session with her – Wednesday night at 5:45.  I am excited but I am also expecting that I will have to take several breaks throughout the hour and I am also anticipating an increase in my pain level and quite possibly a flare-up.  But I am going because I do believe that, however painful, movement and flexibility is important and these are two areas I need to improve greatly if I ever hope to improve my Fibromyalgia.

Wish me luck!  And look for my follow-up post on Thursday.

NOTE:

In a continuing effort to live well with Fibromyalgia, I am going to be researching and trying new and different things to help maintain my health.  I will report on my research and my own personal experiences, but I am not a doctor and therefore will not be telling anyone to try what I do. If you think you may benefit from my experiences, please check with your doctor to see if it is right for you.

Over the years my sister and I have learned it is better and more fun to laugh about life’s predicaments rather than cry. We have numerous inside jokes, and fibromyalgia is fair game when it comes to our humor. Anyone who suffers from FM understands that your once fertile and competent brain becomes a mush of confusion and incoherence. The corresponding joke is that I “used to be the smart sister.”

It is true. I was once her “go to” whenever she needed an answer on most anything. But since developing FM I have been reduced to the baby sister she feels the need to shelter and protect. I have to say I love how nurturing she is of me, but I MISS MY BRAIN!

The last few days Health and Fibromyalgia blogs have been a buzz with a study just published by The Journal of Nuclear Medicine, which claims there is verifiable evidence of abnormal brain activity in patients diagnosed with Fibromyalgia.

Dr. Eric Guedj at Centre Hospitalier-University de la Timone in France conducted the study by performing brain imaging called single photon emission computed tomography, or SPECT.

The imaging showed that women with the syndrome had “brain perfusion” — or blood flow abnormalities —compared to the healthy women. The researchers then found that these abnormalities were directly correlated with the severity of disease symptoms.

An increase in blood flow was found in the brain region known to discriminate pain intensity, the researchers found.

The findings were published in the November issue of The Journal of Nuclear Medicine.

The result of this study has many positive implications for people with Fibromyalgia.

Cognitive functioning, memory and concentration problems

This is one of the greatest complaints and issues people with FM have. We have lovingly come to refer to this as Fibrofog, because that is what it is like – like walking around all day in a fog. It is hard to process thought clearly and sometimes even speak in coherent sentences. For me this has been the most frustrating thing I deal with. I am not the smart sister anymore! And the greater my pain level the thicker the fog.

I always believed it was more that just fatigue from poor sleep and unrelenting pain. I genuinely believed there was something wrong with my brain process, and now there is verifiable proof of this. There is an increase of blood flow to the area of the brain that discriminates pain intensity, but the study also shows there is a decrease of blood flow within an area involved in emotional responses to pain.

Reinforces that Fibromyalgia is a real disease/disorder

Fibromyalgia is called the “invisible syndrome” because lab tests and X-rays cannot diagnose it. To date there is only the trigger/tender point test used to diagnose FM. Developed in 1990 by The American College of Rheumatology, the criteria is that a patient must feel pain in a minimum of 11/18 tender points throughout the body.

For the many health care professionals who remain skeptical of the reality of Fibromyalgia, the tender point test is not proof enough.  But with the reinforcement of the brain imaging study, Fibromyalgia is more likely to be seen as a real disorder. This will hopefully translate into more testing and better healthcare for patients with FM.

Thank you Dr. Guedi!  Now when my sister tells me I am not the smart sister anymore I can tell her my brain is abnormal.  I have an excuse!  Then I will remind her that her only excuse is that she is blonde!

Quote source, Kathleen Doheny, HealthDay Reporter, Monday, November 3, 2008.