The Hand Me Down of Fibromyalgia

by moonwatcher on September 3, 2013

hands

A couple of years ago John Robbins and his foundation EarthSave began funding a program called Meals for Health. The first participants were low income patrons of the Sacramento Food Bank who volunteered to try a WFBP diet for 2 months.  There was training and support given for how to do this throughout the program, and biomarkers like blood pressure and cholesterol were taken regularly. Whole Foods was in on it, and the participants were taken to the store and shown how to shop, what to buy, how to cook it, etc. Plant strong stars like Rip Esselstyn and Dr. McDougall also participated in the study. VegSource made videos about it, and when it was over, women who had completed the study with flying colors were invited to speak about their successes at a fundraiser for EarthSave in Beverly Hills. I remember one of the women listing fibromyalgia as one of her health problems. As she ticked off her successes, she said of the fibromyalgia that she felt so much better she was not sure she needed to identify herself with that label anymore. You can learn more about this study and see the video I am referring to here.

At the time I watched this recording, I was probably was 3 plus years into this way of eating. The residual effects from a bad fall I had taken in 2009 had left me wondering if I did indeed also have fibro, and about a year later in 2010 that was confirmed by my doctor when he performed what I call “the pin cushion test.” Every single point he pushed made me wince or jump with pain. He could hardly bring himself to finish the test. So okay, another disease label I had long suspected was handed to me. At the time I heard this woman say she was about ready to let go of that identification label for herself, I was wistful about whether I would be able to think of it in those terms she described. But she planted an important seed, or rather watered one that had already been growing. I never seem to say die. And I am willing to be a tortoise, making my slow and sure way toward improvements, despite any detours I may have to endure along the way.

I knew it was possible, because prior to Thanksgiving 2011, I had already had the feeling that my body was much less interested in ratcheting up the symptoms I associated with fibromyalgia. It was almost as if it were becoming bored with the acute pain response and hypersensitivity.  Eliminating granulated sugar from anything I ate, and  restricting the amount of things I made with whole grain gluten free flour had made a big difference.

But then the holidays came, with a wonderful visit from my sister for Thanksgiving, and while I stayed on general plan, we ate a lot of special feast foods: soy-based treats—tofu dishes, tempeh, low fat gluten free baked goods made with soy milk or homemade tofu sour cream. All low fat, all “okay” and yet. . .my pain response began to climb through the roof again. Once I eliminated the soy, a mysterious pain in the connective tissue in my right arm that had gotten so acute it made it nearly impossible to put my coat on began to fade, until it was gone altogether.

I am the first to admit that getting the fibromyalgia to a manageable level with food choices turned out to be much more challenging and detailed an undertaking than managing the MS symptoms. In my case, what the MS symptoms mostly responded to was the virtual elimination of saturated fat and oil from my diet. That and going at my own pace, and being sure to take a good nap every afternoon, as Dr. Swank prescribes. The fibro symptoms feel both more intransigent and elusive in their causes. The stubbornness of those symptoms forced me to look at sugar, especially granulated sugar, and flour, even gluten free flour, and eventually soy, and recognize them as triggers for the exaggerated pain responses I experience. And to truly center my every day diet on whole foods.

People with fibro are reportedly supposed to be unable to enter cycles of restful sleep, which in turn keeps their pain cycles out of balance. While I have experienced this at times, I am happy to say it’s mostly true that I get oodles of restful healing sleep when I need it.

I am sensitive to cold, as I’ve read some people with fibro are, but it no longer debilitates me.  A friend who has helped me clean my house for over a decade remarked last Winter that I seemed to be handling the cold more easily. I can warm up quickly by adding another sweater, or making sure I have enough layers on. (The layers are so I can take them off quickly if I warm up too fast, not good for the MS.) All in all, body temperature regulation, though still a bit of a tricky art, menopause being what it is, is so much better that the “problems” I now experience with it  are blessings; their scale of improvement could be illustrated by comparing a mosquito bite to a second degree burn. So while it is still present in subtle forms, and can be tiring, it is no longer the debilitating problem it once was years ago, or even 2 years ago. First making the swtich to eating this way, and then finding over time how to make the refinements recommended by Dr. Fuhrman and Dr. McDougall and my own listening to my body,  and then sticking with those refinements also over time, have calmed a lot of that fibro fury down to a dull roar. And when circumstances come together to make it roar, I know how to calm it back down.

Recently I read an article a friend referred me to about research (funded by a drug company) that proposes a new possible “cause” of fibromyalgia. It’s fascinating reading, and came on the heels of finishing Dr. Campbell’s Whole.  The article, titled, Breakthrough In Fibromyalgia Research: Pain Is In Your Skin, Not In Your Head, posits a theory of disease for fibromyalgia claiming that “Instead of being in the brain, the pathology consists of excessive sensory nerve fibers around specialized blood vessel structures located in the palms of the hands,”

The article says that currently targeted drugs for the treatment of fibromyalgia, made by Eli Lilly and Forest Labs, are serotonin/norepinephrine re-uptake inhibitors (SNRI) that work on the brain. But these drugs can also act on the nerve endings near blood vessels in the skin.  One doctor is quoted as saying that the knowledge of how these drugs are supposed to work on molecules in the brain led them to evidence that similar molecules were involved in the function of nerve endings on the blood vessels. This led to the hypothesis that fibromyalgia might involve a pathology in that location. The results of the research done by the drug companies indicates this hypothesis is correct.

As I read these words, and began to grasp their implications,  I began to feel a deep sense of dread. Over the years, I have had issues of weakness in my hands, and pain from overexertion, both associated with the MS. I have not had painfully sensitive hands in the way this article seems to suggest women with fibromyalgia have. My hands are sensitive, yes. And sometimes painful. But the sensitivity is a gift beyond any pain I experience. When my mind is blank about words, if my hand holds something in it and turns it over, words and ideas come to me. I understand things by holding them. And I have always had small, pretty hands. The photo above is one that was taken many years ago when a student was doing a photography project consisting of photographing people’s hands and their houses and putting them together. And many years before that, another young woman had read my palm, in awe of all the tiny x’s blossoming across my palms. She said they were sorrows from other lives waiting to be healed in this one.

Now my hands are more wrinkled and weathered than in the photo, but I still love all the things they help me feel and discover and learn about and experience.

my hands on Romeo

Back Camera

My Dad and I holding hands on my last visit with him before he died.

And like Frank Wilson wrote in The Hand, they are extensions of the brain. The thought of deadening the nerves endings that make them so alive sent a chill down my spine. And a sadness that what Dr. Campbell would call a reductionist solution—to deaden in order to decrease pain at one site, ignoring its interconnectedness to everything else—is seen as a “breakthrough.” Why would I want to choose deadening  sensation in my hands so as not to feel pain? There’s something deadly wrong with that to me.

Particularly suspicious to me in terms of impartiality was the sentence at the end of the article directing readers to where they can find a patent friendly press release. And most annoying of all, the site Medical Daily, which this article is on, keeps a “TV” going that I couldn’t figure out how to turn off, with continously running ads for processed foods and other goodies that do a girl with fibro absolutely no good at all.

For me, being on that page was like visiting a dark room in a haunted house. The zombie thinking we are encouraged to follow in the reductionist paradigm was everywhere, and its appeal to the emotions of those with fibro was deftly aimed.  Your pain is real, not in your head. Your pain is in your hands, and we can take that from you. Dr. Campbell’s brilliant exposition of how these forces gather to confuse and pressure us was not news to me, but having it fresh in my mind made this version of it so crystal clear I nearly laughed, were it not for the tragedy that it will have such largely ineffective consequences, that will bring more pain of another order.

So this whole foods plant-based rebel is wondering about the power of the fibromyalgia disease label.  My long time doctor who did the “pin cushion” test had the good grace to know I would not want pain killers, but would try to address this with diet and lifestyle, as I had everything else. He had faith in me that I could succeed. He’s retiring this August, and will only be working in emergency medicine part time, something I thankfully haven’t had much need for. But I’m thinking when I go see the new guy this Fall, I might ask him to push on those trigger points. Just to see. They’ll probably still hurt, but I have a feeling they might not send me through the roof like they once did.

It’s likely the drug lords responsible for these new research findings are in a hurry to dismiss the pressure point diagnosis for one requiring these nerve tissues be screened, so a whole new screening industry can be funded, and appropriate medication can be prescribed. Of course, if I wanted to, I could believe them, and let myself eat some ice cream, or pour sugar on things and buy my food in packages instead of bunches, and I could be right back to wishing and hoping and wondering what hit me. So I think I’ll just keep on buying my food in bunches, not packages, and leave this new and very incomplete research on a shelf to collect dust where it belongs.

There’s no one-to-one way to get rid of fibromyalgia. It takes patience, diligence, dedication and stick-to-it-ive-ness eating whole foods that are plant based over time to see real improvements. Some of us may even have whole food sensitivities we have to learn about and respect. I’ve also learned from my years of  reading and experience that fibromyalgia can be handed down as a complication of other issues, like the sum total of all the falls I’ve taken in my life due to balance irregularities caused by the mild CP and then the MS. In a way, it’s like second hand clothing: not new, but made new in how it now gets worn. From time to time over the years a dear friend of mine has gifted me with clothes she is no longer wearing. She used to joke if I complemented her on something that “someday, this, too, could be yours.” Though I never tire of looking through clothes, it’s now more “fitting” for me to do my own scavenging at the Salvation Army or Good Will or the occasional splurge at Ross. My body has changed so much the old things just don’t fit right anymore. Most of them are far too big, and droop or hang wrong when I put them on. Some can be taken in. Some have to go. And some I love so much I wear until I can see through the weave of the cloth.

The “label” on the hand me down of fibromyalgia does not fit me as snugly as it used to. Often now it hangs on me, like something that no longer fits my body. Like the woman in the video said, “I still have fibromyalgia, but I’m almost not gonna claim that anymore because I feel so much healthier.”

Yep.  I can’t speak for anyone else with fibro, but as far as I’m concerned, what she said. At least more of the time than used to be so. And maybe, as another friend excitedly pointed out about the MS when seeing me so improved after she had been gone for several months, “You may have MS, but it doesn’t have you.” I remember smiling a yes. That applies to the fibro now too. Yes. And I live each day making that the truest fit I can make it.

 

Maria (moonwatcher)

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{ 9 comments… read them below or add one }

1 Michelle September 3, 2013 at 12:23 pm

Thanks so much Maria for this post. You are wonderful to post your experiences with fibromalgia (FMS/ME) here too. It astounds me that you do so well with MS, CP and FMS too – where I just have FMS and barely can think of doing as much as you do in a day!! But it’s slow motion and this is always the most important take away from reading you – the food takes time but it heals the underlying cause (whatever that might be) not the symptoms hit and miss!

You list the big food culprits that damage us FMS folks (soy, gluten& sugar) and I am about to jump into a food elimination trial to see if there are more that bother me. I already found that rice for me, oddly, is a trigger of some symptoms previously ascribed to my FMS – so I have hopes that I will root out other offenders.

I already know as my intestinal walls heal through the introduction of good PBWFs that the symptoms are lessening. This keeps me attentive and patient (it is slow) that one day I will be experiencing the level of pain reduction you have now!

I was jumping for joy also that you took that article to task. I received it from a friend and immediately was angered by the it’s “not in your head nonsense”. Of course it is in Canada the studies have been done on FMS patients that show that we do not achieve level 4 sleep – the healing refreshing sleep we need. Real science not done for a pharmaceutical company – but no cheap method of determining who has this syndrome.

Clearly, the folks you take to task are trying to sell a diagnostic tool to medical facilities and absolutely just as you said the whole thing is reductionist science lets look at one symptom! Frankly, my pain has to be at level 9 or 10 for me to even notice it in my hands – it’s not my most significant complaint I think we have globally as FMS suffers!

Anyway, when I received the article I sent my response back to the sender, my friend, immediately . She is a scientist and I knew she’d already found it implausible. So, I wasn’t doing this to someone who had the highest of hopes this was my future cure! So many friends are dears to think each one of these “latest findings” will be my salvation. Yet, frankly I am sticking with resolving those underlying issues not the odd symptom that shows up – with other consequences to follow from the symptomatic treatments.

Frankly, avoidance of the above- listed foods works and I now do believe in the “leaky gut” theory of FMS/ME. Though, I do wish it had a better moniker, lol! I have heard that the medical establishment in places like Britain and Canada do give consideration to treating the intestinal lining through dietary change in cases of what they call ME. There they are not as subservient to pharma! So, I am going to keep eating millet and greens and all those other things that are making my tummy and fibro happy and reading you for the mega dose of encouragement I get every time I come by.

Best to you always – xoxoxox Michelle

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2 Michelle September 3, 2013 at 12:30 pm

PS – I forgot to say that your hand pictures are stunning and show that touch is also one of the most healing of all powers too. That’s why I must now say that the words and experiences you share here touch us so very deeply – because they are healing me for certain!

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3 moonwatcher September 3, 2013 at 1:11 pm

Dear Michelle, Thanks for sharing your thoughts here and some of your own journey to improve and heal your own symptoms with food. It is so important! All the additives and preservatives and sulfites in processed food can be very big offenders too. And all interesting about the “leaky gut” theory, too. The friend who sent this article my way is quite savvy herself, and was just saying “here’s the latest the medical establishment has come of with.” So I ran with my own commentary on the heels of Dr. Campbell’s wise words. :)

I am also so glad you enjoyed the hand photos. I agree that touch is one of the most healing powers of all, too. And thank you for your very kind words about mine!! xo

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4 Cara September 5, 2013 at 8:47 am

Thank you for this post. It is inspiring–I’m trying to figure out whether I have fibro at the age of 53. I am moving to a mostly plant-based diet. I live with meat eaters who are not willing to change their ways, so I’m having to figure out how to do this on my own. My health has improved over the last year as I move more and more to a vegan lifestyle. Your blog is one of those that inspire me. Here’s to aging well and gracefully!

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5 moonwatcher September 5, 2013 at 8:55 am

Thank you, Cara, for this lovely comment, and for sharing some of your own experience. I cheer you on in your resolve to eat mostly plant-based among a household of others who are not doing the same. Good for you!! The rewards may be slow at times, but they are steady, if we keep at it. All the best to you in finding out whether Fibromyalgia is one of your challenges. I’m so happy to know that what I write inspires you. Here’s to aging well and gracefully!

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6 Sherril September 5, 2013 at 5:13 pm

Maria,

Once again, you have cut to the heart of the matter. Many years ago, a wise friend and acupuncturist advised me to not attach labels such as post polio or fibromyalgia, but to just seek the best I could be. Though I was coming from a need to understand by knowing the cause and source of my pain, I saw the value in this. I am reminded everyday in my teaching and healing practice that our western medical tradition seeks to inflict the “reductionist solution” upon us, and often so do alternative healing traditions. It really helped clarify this for me as I read your words. You offer a true gift by sharing your own way of healing and your experience so candidly. Thank you.

Sherril Twitchell

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7 moonwatcher September 5, 2013 at 5:57 pm

Dear Sherril, thank you so much for this thoughtful response. I really appreciated your understanding of where I’m coming from, and reading about how the message is similar to that you received earlier in your life which has stood you in good stead. I was going out on a bit of a limb; thank you for letting me know it helps that I share my own way of healing and experience so candidly.

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8 Selma September 24, 2013 at 6:27 pm

I was diagnosed with FMS 15 years ago- first the blood type for O(paleo) type cut my pain in 1/2-I slowly added back more trains and spelt-did well for many years,than optic neuritis hit at a stressful point 7 years ago and symptoms became progressive being furthered dramatically by different treatments herbal and a few drugs on the lyme theory ( i test negative for MS).I went high raw vegan /low fat-did pretty well recovered from an attack 3 years ago but not back to baseline with alot more neuro symptoms. But on the high raw low fat vegan-estrogen dominance went into full swing and I developed
endometriosis stage IV, ovarian cysts etc. Surgeries provoked
the 4th neuro attack. with more pervasive numbness and neuro symptoms. I’m trying to figure out what diet to do from here. I am confused by swank, mcdougall, and Dr. Wahls paleo (who has reversed progressive MS). Not sure if I should be eating grains or not and if meat/how much and if I should adhere to swank. Then again, this may all be lyme. I must say I am very confused as I can find MS recovery stories on raw, low fat vegan/high carb, swank, and paleo! Very confusing!

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9 moonwatcher September 24, 2013 at 8:00 pm

Welcome, Selma. Thank you for your comment, and for sharing some of your difficult experience. Sounds like you’ve worked hard at searching for what will help you improve. Diets can be confusing. The approach I’m taking seems to be working very well for me. Everyone is different, though, and I wish you the best in finding what works for you.

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