Fibromyalgia is such a bitch! Just go back and read my last post written on a good day when I was feeling lucky and supported. How dramatically different is this post. Don’t get me wrong. It is not that I am all of a sudden sad and hopeless, I am just once again humbled by the overwhelming nature of Fibromyalgia. I was just given a very firm and intense reminder of the unpredictable and debilitating status of my health.

Today is a new day, the start of a new week. The mirror is kinder and gentler today. Everything in my life that was put on hold last week is still here this week. My blog! Oh how I miss my blog on the days I am down and out. It is my lifeline. Those of you who left comments – even though I did not reply to them, they really helped me feel connected during my flare – THANK YOU!

So, now to regain my momentum. First thing, now that my brain is starting to function again, is to make a list of all the things I want to accomplish. Second, remind myself to take it day by day. No pressure, just keep moving forward and progress will happen. Third, honor my limits. It is so easy once you get on the good side of a flare up to try and make up for all the time lost. I am not going to do that. That time is gone, I cannot get it back, and trying to would only stress my body and possibly send me back in to a dark hole like last week.

Lastly, I am going to remind myself that I am so much more than my pain and fatigue. It is a part of who I am, not all I am. Fibromyalgia took last week away from me, but this is a new week. I will continue to work towards progress in all areas of my life, because yes, even though my blog is all about Fibromyalgia, my life is not. Seems weird that I have to remind myself of that, but then if you have ever been through a flare, you know exactly what I mean.

As each meeting does, last night validated all of the work I put into organizing the group, because each meeting and each interaction rewards me, supports me, and encourages me. I feel blessed and honored to be a part of the group, and proud that I played a part in bringing us all together. After each meeting, members are asked to rate the meeting and leave a comment about their experience. I would like to share with you a comment left by a new member attending her first meeting.

Dannette called the group “a bunch of scientists” once and that’s a pretty apt description. Very rarely have I ever run into people who were so interested in learning without having a (well at least I didn’t sense one…) hidden agenda. The people were kind and generous with both listening and talking and the interaction is a lot of fun. It is very obvious to me that Dannette nurtures this group and puts a lot of careful thought into how to best meet the needs of the members. The people who have joined the support group but have not yet attended a function are really missing out. This truly is a support group.

 

Can I tell you how happy this comment made me. Of course I appreciated what she wrote about me personally, but it was her overall impression of the group that pleased me the most. She sees the group as I do – kind and generous people who respect and support each other, and who are actively interested in improving their lives. We are a realistic bunch and recognize that there are so many layers to Fibromyalgia, and each book we share, topic we discuss and positive results we report is just a part of a piece of this million piece puzzle. But together we are a much greater force than each of us is alone.

A group like this does not just happen. First it takes someone to decide to make it happen. And that someone needs to be commited – despite their own health issues – to nurture the group and put “a lot of careful thought into how to best meet the needs of the members.” But that is only the beginning. Then people need to join the group. And then the people who join need to trust their instincts and honor their need for support by participating. And when all those pieces come together, a night like last night happens – a night of sharing and caring and community.

I can’t tell you how much I wish I could create a group just like this for each and everyone of you. Everyday in comments on my blog, on Twitter, in message boards, I see the need for more connection, more support and more interaction for people suffering with Fibromyalgia and other invisible illnesses. My heart literally aches with the need to help. I feel like it is my purpose, and nights like last night reinforce my commitment.

So what am I going to do about it? I have been brewing a plan for awhile now. It is a slow brew due to the faulty filter and machine I call my brain, but it is brewing non-the-less. My blog Fibromyalgia Haven is just the beginning of my passion to create a Fibromyalgia community for everyone, like the small FM community I am lucky enough to have created here locally. I am lucky to have this group, but the key is, I created my own luck.

“Diligence is the mother of good luck.” – Benjamin Franklin

“Luck is what happens when preparation meets opportunity.” – Seneca

“I’m a great believer in luck, and I find the harder I work, the more I have of it.” – Thomas Jefferson

And that is the truth about luck. The harder I work, the luckier I get. I am here in this place, poised to heal and to help others heal, because I have worked for it. I am going to continue to work at it. It is the commitment I make to myself and to anyone who wants to join me on my journey. You are all invited, but it is up to me to make sure the journey reaches everyone, even those of you so far off the beaten path that you are certain no one will ever find you or care that you are there. I care! And as my wise friend Hillary reminds me often – you are loved, and you are not alone.

Gluten is the complex protein found in wheat, barley, rye and some oats. For many, our bodies are unable to digest these proteins properly. That headache you experience after a meal of pasta may be an indicator that you are gluten intolerant. If you feel sleepy and lethargic after a French toast breakfast, your body may be having too hard a time trying to break down the food you are consuming.

New evidence suggests that as many as 1 in 7 are gluten sensitive, or gluten intolerant. Many chronic illnesses are associated with gluten intolerance: Fibromyalgia, chronic fatigue, rheumatoid arthritis, thyroid disorder, and diabetes. It is also thought to be the cause of infertility in some women. Gluten intolerance should not be confused with the less common and more severe auto-immune disorder, Celiac Disease.

If you suspect you may have sensitivity to gluten, consider eliminating it from your diet. All gluten intolerances are easily identified by an elimination diet. Start for a period of two weeks and remove all wheat, barley and rye based foods. It is helpful to keep a fibromyalgia food mood journal during this time, and log what you eat along with any symptoms you experience. If you have intolerance, improvements may be felt in just a few days. For myself, eliminating gluten from my diet quickly lead to massive improvements in the many symptoms I experience living with Fibromyalgia.

The first thing I noticed was an increase in energy. I began feeling less fatigued and sluggish. Then I noticed my head was feeling clearer, less foggy. Eventually I also noticed my back muscles were no longer on fire with pain, and my shoulder muscles seemed less tense. The thing that cinched it for me though was the improvement with my hands. The joints in my hands had become so painful I was certain I was developing arthritis. I had a hard time gripping and opening things, my coordination was off – I dropped things often, and my hands frequently woke me up throughout the night with throbbing and aching pains. After just ten days on a gluten-free diet there was a noticeable improvement. I needed no further proof that I am gluten intolerant.

Blood tests are available to test for gluten intolerance, but it is possible to test negative and still have sensitivity to gluten. The easiest way to test if you are intolerant is to simply eliminate it from your diet. It takes a commitment, and careful food preparation, but the benefits of improved health and wellbeing far outweigh the disadvantages. And if you are worried you may miss your favorite gluten based foods too much, don’t. With growing recognition of gluten intolerance comes a growing variety of substitutes and options. Eat well, be well.

Note: This is a reprint of an article I wrote for Optimal Nutrition’s monthly newsletter.

Today is the day I ignore my phone, stay off the computer and catch up on my DVR. I will try not to get stressed over my lack of productivity and just give into it, because if I do, maybe I will only feel this bad for today. Maybe tomorrow I will wake up feeling a little better.

I will drink a lot of water today, even more than the A LOT that I normally drink. I have said this over and over to anyone who will listen – drinking a lot of water is the best thing I do for myself everyday. Today I need to do better. I feel especially toxic today. Water will help flush all that yuckiness out.

Is yuckiness a word? I make up words on days like today. Maybe I will start a new Fibromyalgia urban dictionary. Not today though. Maybe tomorrow. Maybe tomorrow when I wake up feeling better I will get started on it. It can definitely wait until tomorrow.

12/30

Laughter Yoga is a revolutionary idea – simple and profound.  An exercise routine, it is fast sweeping the world and is a complete wellbeing workout. It is the brainchild of Dr. Madan Kataria, an Indian physician from Mumbai who started the first laughter club in a park on 13th March 1995, with just 5 people. Today, it has become a worldwide phenomenon with more than 6000 social laughter clubs in 60 countries. 

Laughter Yoga combines unconditional laughter with yogic breathing (Pranayama). Anyone can laugh for no reason, without relying on humor, jokes or comedy. Laughter is simulated as a body exercise in a group but with eye contact and childlike playfulness, it soon turns into real and contagious laughter. The concept of Laughter Yoga is based on a scientific fact that the body cannot differentiate between fake and real laughter.One gets the same physiological and psychological benefits

 

So what are the physiological and psychological benefits of laughter and how can they help patients with Fibromyalgia? Here is a list I compiled from my research:

• Laughter reduces pain and allows us to tolerate discomfort. It is not clear whether laughter is just a diversionary tactic to help us forget our pain or if it is due to a chemical change and an increase in endorphins, but researchers have time and again documented lowered pain responses in patients treated with humor therapy. It is also thought that a good hearty laugh that brings you to tears removes toxic substances that build up in our bodies during periods of emotional stress.
• Laughter improves brain function and reduces stress. Laughter stimulates both sides of the brain to enhance learning. It eases muscle tension and psychological stress, which keeps the brain alert and allows people to retain more information. Laughter is a great way to combat fibrofog.
• Laughter aids in better relaxation and improved sleep. The focus on the benefits of laughter really began with Norman Cousin’s memoir, Anatomy of an Illness. Cousins, who was diagnosed with ankylosing spondylitis, a painful spine condition, found that a diet of comedies, like Marx Brothers films and episodes of Candid Camera, helped him feel better. He said that ten minutes of laughter allowed him two hours of pain-free sleep.
• Laughter helps your immune system carry out its natural functions. Laughter moves lymph fluid around your body simply by the convulsions you experience during the process of laughing; so it boosts immune system function and helps clear out old, dead waste products from organs and tissues. Your lymph system doesn’t have a separate pump; your body needs to move around to properly circulate lymph fluid so that your immune system can carry out its natural functions. Laughter is a great way to support that.

Pain, brain function and sleep (the three biggest complaints of Fibromyalgia patients) can all be improved with a regular dose of hearty laughter. And according to Dr. Kataria, founder of Laughter Yoga International, it doesn’t even matter if the laughter is spontaneous or forced, your body does not recognize the difference. When you laugh you are forcing oxygen into your lungs, muscles and the cells of your body, which boosts circulation and increases energy. And if you watch this video you will see, laughing is just plain old fun.

[youtube=http://www.youtube.com/watch?v=0eB3ISAYE-I]

Tomorrow evening my support group is going to be treated with a session of laughter yoga. I will be sure to report back on the event and share with you how we all feel after all the laughter, giggles and silliness of the event.

I had a good day yesterday, a really good day. It was the kind of day when the pain and fatigue of Fibromyalgia is just faint background noise. Like the noise from the street that you have to really listen for to even remember it is there. And my head! My head was oh so clear and cognitive. Every thought and memory came with clarity and ease. Yesterday was a great day, a day of possibility and I was awake and alive for every moment of it.

So I embraced yesterday. I took full advantage of yesterday. I used yesterday to its fullest and enjoyed every second of it. Yesterday is the reason I have hope for today and hope for the future. I still have plenty of yesterday in me. Today may not be like yesterday, but tomorrow can be, and with that kind of possibility, who could give up on today? Not me.

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.