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.

My Favorite Posts from the Last 30 Days

1. I Do Not Want to Think About Fibromyalgia Everyday - This post came on day three of my assignment when I realized the reason I have not been writing about Fibromyalgia everyday is because I do not want to THINK about Fibromyalgia everyday. I really enjoyed this post because I got to shout out loud, “I am more than my diagnosis!”
2. Secrets of My Soul - Every secret of a writer’s soul, every experience of his life, every quality of his mind is written large in his works. – Virginia Woolf. This is a piece from a creative non-fiction/personal essay class I am taking.
3. Conversation on Isolation - This started as a conversation in the comments of a previous post, but I made it into a new post to continue the conversation, and also to applaud the commenter, Kathy, for speaking out and holding me accountable for my word choice.
4. Practice May Not Make Perfect, But it Can Make a Habit - Hope that my 30-in-30 writing assignment will make writing more habitual for me.
5. Things I Love #6: My New Office - My new Fibromyalgia friendly office. Love it!
6. The Law of Detachment - In order to acquire anything in the physical universe, you have to relinquish your attachment to it – and how this applies to me and my support group.
7. Misery Loves Company - Where I proceed to rip apart the most ignorant, inaccurate and judgmental acupuncturist to every treat Fibromyalgia. His article perpetuates every negative and inaccurate assumption about Fibromyalgia and chronic fatigue.
8. My Six-Word Memoir - I have pain, therefore I am. NOTE: I have pain, but I am not my pain. Look for a post soon on “I am…”
9. Fibromyalgia Affects Everyone: An Interview with My Niece - I interviewed my 13 year old niece about her thoughts on having an Auntie with Fibromyalgia and how it affects her. Maybe my favorite of my favorite posts.

Most Informative Pieces from the Last 30 Days

1. Why I Love Yoga, and Why You Will Too - I cannot emphasis enough how much I have come to love yoga and the improvements in my symptoms since I began practicing several weeks ago. This post is my attempt to entice you to try yoga for yourself.
2. New Book on Fibromyalgia – Claims to Fill in the Missing Pieces - Information from a press release I received – not an endorsement.
3. Bloggers Unite for Fibromyalgia Awareness Day - On Fibromyalgia Awareness Day, I shared how some of my fellow bloggers acknowledged the significance of the day on their blogs. Great way to discover some new bloggers.
4. Review: Treating Fibromyalgia Naturally — So You Can Shine Again – From the womentowomen.com newsletter. I found this to be a very realistic, in touch and accurate assessment of Fibromyalgia.
5. Online Social Networking for Fibromyalgia Support and Information - Part one in my series on Fibromyalgia support and information – focus on social networking sites.
6. Online Forums for Fibromyalgia Support and Information - Part two in my series on Fibromyalgia support and information – focus on online forums and support groups.
7. Online Resources for Fibromyalgia Support and Information - Part three in my series on Fibromyalgia support and information – focus on blogs and general resources.
8. Join Hillary for Her Next Teleseminar - I continue to follow and recommend the meaningful work of Hillary Rubin and her inspirational message about embracing your diagnosis as a gift, teacher and blessing.
9. Self-hypnosis for Treatment of Fibromyalgia - Just one more possible tool for our toolboxes.

There were Three Holidays/Days of Observance in the Month of May

1. Are You Aware? Fibromyalgia Awareness Day is May 12 - In 1993, May 12 was designated as the International Awareness Day for Chronic Immunological and Neurological Diseases. The National Fibromyalgia Association (NFA) joined the Awareness Day effort in 1997 and has led the call for increased recognition of fibromyalgia each May 12.
2. In Honor of Every Mom Living with Chronic Illness - Happy Mother’s Day!
3. Take a Minute and Pause - In observance of Memorial Day.

Fun and Mindless Posts I Wrote on What Normally Would Have Been a Down Day

1. 15 Counterproductive, Needless, and Delaying Things I Did Today - I had a lot of fun with this post, and if you have not yet watched the 2 minute video on procrastination, it is a must! Maybe I should move this up into my favorite posts category.
2. Best Chocolate Cake Ever! Just Happens to be Gluten Free – Yummm!
3. It’s a Down Day – Example of a post I never would have written were it not for my assignment. It was day 12 and I was feeling awful, but committed to completing my assignment. Not much of an effort, but much better than giving up!
4. Taking the Easy Way Out – Day 13 was not much better, so I copied 25 Random Things About Me from my facebook page and posted it here. It was the easy way out, but it still honored my commitment. Yea me!
5. Recognize My Wall? – Just another bad day.
6. Another Careless Doctor to Avoid – Found something quick and simple to write about, but that doesn’t mean it is not worth the read.

So there it is, my last thirty days! I am seriously impressed with what I was able to accomplish, and very proud that I never gave up. There were moments – as early as day three – when I wondered “why did I do this to myself?” and I had several loving and caring people in my life tell me to take it easy and not demand too much of myself. It really would have been easy and perfectly understandable to quit on one of the many bad days I had throughout the month, but that is just not me.

Fibromyalgia has taken many things away from me, but I am still the same determined, stubborn and resilient person I have always been. I still have the abilities that made me a top sales rep at my previous job, I just need to apply them in a new and less demanding direction.

You know the saying “objects in motion stay in motion,” well this was my mantra when I was in sales. The more I got out there everyday to visit accounts, the more new accounts and new sales seemed to fall into my lap. Wouldn’t you know it, the same thing happened in the middle of this writing assignment. I picked up a new monthly newsletter that I am going to be writing for, and something else so exciting I have to wait until everything is finalized before I share it with you. Fibromyalgia or not, very cool things can happen if you believe in yourself, honor your passions, and never give up on your potential.

Watch this video with other great six-word memoirs from the book Not Quite What I Was Planning: Six-Word Memoirs by Writers Famous and Obscure.

What is your six-word memoir?

26/30

I have hit it – HARD!

On this side of my wall is -

Me

Pain

Fatigue

My icepack

Ibuprophen

My couch

And the last 3 episodes of Grey’s Anatomy

On the other side of the wall is -

My Brain

Energy

Motivation

Post #3 of my series on online support and information for Fibromyalgia

Look forward to seeing you again on the other side!

21/30

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

So you are probably wondering, what is Takesumi and why should I be interested in it. In a previous post, I listed the several toxins and infections Dr Shores tested me positive for: 

• Heavy Metals
• Arsenec
• Borrelia Burgdorferi – lyme
• Chloroform
• Formaldehyde
• H-pylori

Takesumi, which is a carbonized bamboo supplement, is an effective and the most gentle way Dr. Shores knows to rid the body of toxins and infections. Here is a description fromMichael Lebowitz D.C.:

 Takesumi, on AK testing, fairly routinely blocks positive tests to toxic metals, chemicals, and often foods too. I look at it as a supreme detoxification product. It also appears to adsorb myco and endotoxins (and other bio-toxins) from various organisms, take the load off the liver and kidneys and thus act in an anti-aging fashion. Takesumi is also reported to adsorb radiation (radon, nuclear, etc.)

 

Michael Lebowitz D.C. has been a researcher in applied kinesiology and nutrition for over 30 years, and this statement was based on his clinical testing and research. Takesumi also has anti-fungal, anti-bacteria, anti-parasitic and anti-viral properties.

I began taking the Takesumi over two weeks ago. Some of the effects I have been feeling are headaches, muscle aches, fatigue, my skin (especially on my face) feeling hot, and some dehydration. I naturally drink a lot of water each day, but I have had to increase my water consumption considerably and I still wonder if I am drinking enough. Dr. Shores warned me about the side effects of doing a detox, and I am not experiencing anything out of the ordinary, but I am experiencing it for longer than anticipated. Although the effects sound similar to a fibromyalgia flare-up, they are not at that level of severity – thank goodness!

Now for the good news. My fibrofog is much diminished since starting the detox! Even though my body is feeling achy and fatigued, my brain is feeling as sharp as it has since the accident. I have been much more productive and organized, even with the headaches. Honestly if it were not for the improvement I am having with my cognitive function, I am not sure I would continue with the detox, but it has made me a believer and I am sticking with it in the hopes that I soon see other improvements as well. Another of my support group members, who is also on the detox under Dr. Shores supervision, has already tested negative for all of the infections he originally found in her, and she has been taking the Takesumi just a week longer than I have. That gives me even more hope. Every evening after I mix up the carbonized bamboo with some water I yell “TAKESUMI” in my loud ninja-warrior voice and then swallow it down. Silly, yes, but I am a warrior in my battle against fibromyalgia, and if I have to be a warrior, being a ninja is a pretty cool thing!

I will keep you posted on any changes and improvements I have with my detox. If you have any questions about the Takesumi, please leave them in the comments. Dr. Shores has been generous enough in the past to have direct dialogues with readers via the comments. If he is unavailable I can try to look into it myself. 

And now for my little disclaimer:

In a continuing effort to live well with Fibromyalgia I am going to be researching and trying new and different things to help improve 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 a medical professional to see if it is right for you.

Bread, crackers, cereal, soy sauce, gravy, beer – just a few of the things I have eliminated completely from my diet since Dr Shores told me I am gluten intolerant. I look at that list and inherently I know they are all “bad” for me foods, but I did not exactly realize why. It is not a “fat” thing or a “carb” thing with my body, it’s a gluten thing. So how have I been feeling since eliminating glutens from my diet? Well – better!

The first thing I noticed was an increase in energy. I began feeling less fatigued and sluggish. Then I noticed that my head was feeling clearer, less foggy. If that is all eliminating gluten ever did for me I would be happy with the results, but eventually I also noticed that my back muscles were no longer on fire with pain and my shoulder muscles seemed less tense. Now I should note here that I began yoga at the same time I went off glutens, so it could be a combination of the two, but I am certain eliminating the gluten has been a major factor in my feeling better.

The thing that cinched it for me is my hands. The joints in my hands had been so painful for the better part of a year. So much so that I was certain I was developing arthritis in them. 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. Well my hands are feeling much better. It was a gradual improvement, probably the last thing I really noticed. I still have some pain and stiffness in them, but there is a noticeable improvement.

So all that after only ten days. I’m sold and so is my husband. He has been doing it with me and he is feeling better too – more energy, better brain function. This began as a two to three week trial to see how my body responded. After ten days I am firmly committed to it as a new way of eating – not for now – for life. Don’t let me kid you, it is not easy! I think what I miss more than the taste of gluten foods is the convenience of them. There will be much less grab-and-go eating and much more careful preparation of food. I am fortunate to have several excellent markets to chose from to help me with my shopping – Trader Joes, Jimbos and Henry’s Markets all offer extensive selection of gluten free foods.

And if feeling better was not enough (which it is), I have also lost 3 lbs in the ten days, but it feels like I have lost more. Dr Shores suspected I was gluten intolerant because I carry my weight around my face and midsection – two common indicators. These are the areas I am feeling the most difference in because I am no longer bloated or puffy. Now that is what I call a BONUS!

I don’t know if eliminating gluten can help everyone with Fibromyalgia; I doubt it given the multiplicity of people who suffer with it, but if you suspect it may help you, I recommend you ask your doctor to test you. If you would like to research it further here is a link to WebMD. I am so new to this I cannot offer any great advice or resources, but I am open to anyone who has some for me!

On Wednesday my support group had our laughter meditation (referred to as laughter yoga in my previous post) session with Sarito Sun, Laughter Healer and Coach, Hypnotherapist and Meditation Instructor. Now I have to admit I was a little skeptical about the evening. I watched the videos on laughter yoga and I wondered if I would be too self-conscious to let myself go enough and enjoy the experience. Turns out I had no problem at all letting go. If only I had a video of the evening to share with you how fun and freeing it was. Fifteen group members were in attendance, and for about a half hour, all fifteen of us were laughing, and moving, and smiling in a state of pure joy. And it all started off with a few simple laughter exercises which forced us to “fake” laugh. It did not take long until the laughter and joy became real.

It was such a treat to look around the room and see the happy expressions on everyone’s face. Some members literally had to drag themselves to the meeting that evening they were in such a bad way, but everyone was able to participate and we all left feeling a little lighter, and little happier. The half hour of laughter did not cure any of us, and it truthfully may have only distracted us from our pain and fatigue, but it was a beautiful gift none the less. Sarito brought a guest with her who shared his experience of recovery through the use of laughter meditation. In his experience, 30 minutes of laughter a day – fake or  not – can reduce pain symptoms and improve sleep and fatigue. After my half hour experience I can only say it is the most fun I have had in my quest to improve my health, and it is definitely worth trying. I am smiling right now as I relive the evening to share with you!

On Friday I had my first appointment with Dr. Shores, the holistic chiropractor who spoke at a previous support group meeting and also contributed to my blog. It was an enlightening appointment. Through Bio-response testing he was able to determine I have several issues which are likely contributing to, our may be the cause of my Fibromyalgia.

Here is the breakdown of what Dr. Shores believes to be my greatest issues:

40% – Structural. Due most likely to the slip and fall which initially brought on my Fibromyalgia, and the car accident which gave my FM superpowers (post still coming – I promise!)

30% – Grain Intolerance & Dairy Allergy. Turns out I am gluten intolerant. This is the thing I most feared learning. I think I have suspected it for some time but did not want to face having to drastically change my diet - eliminating all wheat and grain based foods. Again through Bio-response Dr. Shores demonstrated how the gluten intolerance was partially responsible for my muscle pain. In my understanding my body treats the gluten as an infection, and it draws the “infection” away from my digestive tract and into my muscle to help my body eliminate it. This causes muscle pain, inflammation and spasms. YES, YES, & YES!!! He also believes my dairy allergy should clear up if I eliminate gluten from my diet. This is going to be a huge lifestyle change for me, and I am certain I will be writing about it. Anyone out there with suggestion or advice, I gladly welcome it.

30% – Toxin/Infection – Dr. Shores’ presentation on heavy metal toxins is one of the things that most intrigued me about his philosophy of wellness. After hearing him speak about how metal filings constantly release fumes and the fumes go straight to our brains, I suspected he was right in that this could be a cause/contributing factor to fibrofog. It turns out I tested positive for all of the following:

• Heavy Metals
• Arsenec
• Borrelia Burgdorferi – lyme
• Chloroform
• Formaldehyde
• H-pylori

Although this list looks overwhelming, Dr. Shores assured me not to panic. In his estimation the thing I should be most concerned with, and will get the most improvement from correcting is the gluten intolerance. As part of my treatment I will be taking a supplement to help my body detox, but I am beginning with eliminating the gluten.

He also used his special gentle adjusting instrument (which I can never remember the name of) to correct some of my structural issues. I have been walking around for as long as I can remember with my right leg slightly shorter than my left. With just a few adjustments it was corrected. I stood up and could tell instantly. It was a weird sensation! I will report back soon about how I am doing with his treatment and recommendations. I think I may finally be on to something.

And if the laughter and the holistic healing weren’t enough, Saturday brought me another great tool for my arsenal in my battle against Fibromyalgia. One of my newest group members is also a certified yoga instructor. She arranged to teach a special gentle yoga class for group members at the Wellness Center. Yoga helped relieve her Fibromyalgia symptoms so much that she became an instructor in order to share and encourage other FM sufferers to try it for themselves. Eight brave members attended and we were lead through gentle movements and also taught modifications of movements that we could take with us into most any yoga class.

I had taken yoga once before and it was an awful experience. The instructor was not gentle or nurturing and seemed put-out that a newbie was in her class. Saturday was a completely opposite experience and I am now a yoga convert. It was like my muscles were waking up from a long cryogenic freeze. I loved it so much that I took another class on Sunday with a different instructor. I was able to modify several of the movements and keep up for the most part. I was not the most graceful participant, but I continued to enjoy the awakening my muscles experienced the day before. I cannot think of a better way to describe it. I know my muscles thanked me, and after taking it easy for a couple of days I am heading back tomorrow. I have had no negative effects or a flare-up like I did from the H2O Cardio class.

So that happened! I don’t know if it was the laughter, or the adjustment, or the yoga, but I am feeling better – better than I have since taking the H2O Cardio class. My mind is finally clear enough to write a post, and my muscles are not burning with fire after sitting at my desk for a couple of hours to write it. Woo hoo!