Fibromyalgia/CFS KNOWLEDGE Day 2011 Drawing/Contest. What do YOU know/think? Write and WIN BOOKs/Bags

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Mardy Ross
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Joined: Feb 16 2009
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Fibromyalgia Awareness Day in 2011 is Thursday May 12th, and on May 19th Lumigrate will do a drawing for THREE prizes (see below for details) to go to three people who contribute something here about what they think fibromyalgia/CFS 'is', whether they think it is reversible, whether they think it is curable. Naturally if people want to write more about why and what they see as treatment, that's grate too.

I've asked some medical providers who say 'I don't have fibromyalgia' -- they think a contest about FMS should be just 'for' people who have it, somehow ..... nope! Not the way we think here at Lumigrate.com -- we want everyone who could affect change for a person with fibromyalgia or developing it to be as aware and knowledgeable and the BEST WAY to do that is to be 'active' in the education process!  Same goes for the public/consumer giveaway -- if someone cares enough about FMS to write what they think about it, they're 'in' with us!  

The bags are custom created for this Lumigrate educational event by Analii (see Movement Therapies forum), ITC Compounding and Natural Wellness Pharmacy (see Supplementation of Nutrition Forum) donated the books 'for the cause' (they estimate well above 50% of their customers have FMS so they were HAPPY to help), and I purchased the Beat Sugar Addiction Now books from ITC Pharmacy since they were sending me books they were donating so generously anyway. THANKS to all who contribute words or products or talents to make something customized for this! ~~ Mardy

 Collective Health Initiatives /CHI donated three of their water bottles on the day the contest ended, so we will draw separately for the winners of these.  If you want one, they're $10 and a FUNDraiser for CHI. For more information find them on facebook and let them know YOU support their efforts for health progression through following/supporting or contributing financially.  

This will be the THIRD year Lumigrate's been 'here for' fibromyalgia awareness month/day, and I realized that wanted to encourage people to write here at Lumigrate.com what THEY think fibromyalgia 'is', whether they believe it's 'reversible', beyond that if they believe it's 'curable'.  Naturally, it's wonderful to have everyone who has some insight on this and who enjoys writing to do so -- and I'm contacting many of the "Grate writers of the past", who have already written on Lumigrate in hopes to have somewhat of a 'reunion'. 

Our concept with Lumigrate is to have a resource to give YOU not only for your own information as consumers but to tell providers about who might want to learn what we're doing here.  What I've found in the two+ years Lumigrate has been online is the public online is overall more involved in finding out what fibromyalgia 'is' and therefore some are VERY capable of being 'the educators' to the providers. Through this stream related to this Topic/Question about what fibromyalgia is and whether it can be reversed or resolved fully, Lumigrate will have something which can benefit any and all who read what WE communally write on this topic.  From that, many GRATE things can come. 

In order to facilitate the information getting to the eyes and brains of providers who can help or those who might learn more, you'll notice the Print function at the bottom of the pages in the forums (lower right corner).  There is also an email function, etc.  Each person can write something here, see what others have written, and add to the 'process' of moving education forward be getting information they see here out to others.  So whether you're inclined to write something or email/print to get the word out, we thank you in advance for your time in making Lumigrate's Awareness and KNOWLEDGE activity impactful. 

However, some people are more inclined to do something if they're going to 'win' something for it.  SO, I'm having things specially made as giveaway items -- (see photo, above).  There are three book bags which should be completed by FMS Awareness Day, which have a butterfly / positive 'affirmation' statement theme and utilize the Lumigrate colors (purple and green). To that I will be adding the books Stop Sugar Addiction Now!, as I believe everyone with 'chronic wellness" as well as those with FMS or any other chronic medical condition benefits from reading and learning from it, as well as books being donated by ITC Pharmacy related to hormone replacement, because we are in agreement that addressing the hormones in FMS/CFS is imperative (Vitamin D and thyroid are 'off' in virtually every person with FMS). I'll get a photo and post it when they're available -- they'll be 'hot off the sewing machine'. 

There will be a drawing on May 19th, which I'm referring to as Fibromyalgia Knowledge Day at Lumigrate.  Everyone who writes something which addresses the components of what it is, if it's reversible and curable will be eligible.  In order to incentivise the providers locally and nationally as well as the public, there will be one bag for each of those groupings of people.

I'd like to have this be FUN, thought-provoking, and bring people together.  There are many local providers who are interested increasingly about fibromyalgia because of the "LumiGrate Groove of the Grand Valley", which I initiated this year in order to increase awareness in MY home town of Grand Junction, Colorado and the surrounding Grand Valley of Western Colorado.  Lumigrate has for two years, thanks to facebook, been blessed with amazing people why have fibromyalgia from coast to coast who have contributed words in the past as well, and then there are the providers who take the time from their busy days and nights to contribute information on Lumigrate to increase our information.  

Nobody's being 'graded here' on if their work is good or not -- it's not the 'best written gets the prize' contest but randomly selected from those who contributee, so that more people will hopefully do the activity and learn and teach in the process. 

So Please do what you do to spread the word to one or more people YOU know who might want to participate and help us make this year's Fibromyalgia Awareness really special!  Speaking of special, I asked Yenta to kick the party off, so I'm going to give her a chance to post her contribution and then I'll let ya'll take it from here!  

I look forward to what everyone writes.  I'll wait until the week after 'the big day' so that if people find out about it on the day of they'll have until the 19th of May to post something here!  

There are some amazing writers and knowledgeables out there, so I hope this is something that will offer AMAZING information for many people, just like our collaborative FMS Awareness activity last year of the "Three Doctors Interview" which had at least 4,000 reads here at Lumigrate alone!  We're currently experiencing a LOT of new registering who are not coming through facebook but through other marketing devices so I'm looking forward to seeing what happens!  Lumigrate really is FOR and about YOU.    Live and Learn!  Learn and Live Better!!   ~~  Mardy

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

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Yenta
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Dawlinks! Fibromyalgia ... Oy Vey!! Awareness Activity

Hello my dawlinks!  It's your Yenta once again and we have things to discuss Bubelehs.    As you know, I'm on this fact finding mission about fibromyalgia set on by our dawlink, Mardy.  She should've sent me to deepest, darkest Africa, it would've been easier - Oy vey az mier!  

It seems this illness (disease? disability? obscure psychological disorder? thief?) not only has many names but also has many "faces" and facets.  It's so mysterious that even doctors aren't quite sure what to make of it so they make things up as they go along and those that are sure of it's existence are also sure of it's manageability until it decides to do the Lindy Hop instead of a Waltz.  Can you tell, bubbelehs, that I enjoy watching Dancing with the Stars?  More about THAT another time perhaps.

Back to this fibromyalgia stuff, because Fibromyalgia Awareness Day is May 12th (who knew?).  It's celebrated on that day because it is now believed Florence Nightingale, the legendary founder of the first school of nursing, was quite affected by chronic fatigue syndrome, such a shanda (shame). The last 30 years of her life, she managed to accomplish great things, and that is the date of her birth, so we should revel and enjoy!

The history of fibromyalgia is as obscure as the treatments.  It's been called everything from "rheumatism" to be part of "rheumatoid arthritis" then to be considered a "neurological disorder".  Initially I might have heard it was "psychological something or other" and each of us have heard, "you're meshugeneh (crazy), go lay down, you'll be fine, you're overwrought."  There are so many opinions and so many "facts" out there liblings, that my head started to spin like dreidel (a top).

Your opinion means as much or more to you (I should hope) than some "expert" that doesn't know you as well as YOU do, no?  It's like those baby books we read when my daughter was pregnant.  Forgive me dawlinks, but those schmucks didn't know me nor my daughter from Eve, how did they know what she was going through?  Are they holding her hair while she's hocking up a lung in the toilet?  Too much?  G-d forgive me, but this is reality, not some sheltered doctor's life in a lovely, cushy office.

What were we kibitzing about?  Oh yes, FMS!  Thank G-d I can still read and retrace my thoughts to pick up where I left off in nostalgia ......
 
Old remedies ranged from doses of cod liver oil to 'sit in your rocking chair, bubeleh, your life is over.'  There were experiments made on people back before the illness was named, and even now there are doctors that will actually open up patients and literally scrape scar tissue away in hopes of "freeing" the joint and the patient of the anguish.  The intention is valid, the procedure is expensive and the long run results are good to no avail.  Basically it comes down to 'do you trust your doctor?' 

But back to the subject at hand or any other body part for that matter.  Our fabulous Lumigrate works hard, it appears to me, to find valid sources to present at Lumigrate.com to be balanced and give variety in order to make our job easier in figuring which is right for us --  YOU, me, our families, your friends, our associates -- so we can follow and learn more from their websites or possibly utilize their products and services.  Hopefully we all come back here on a regular basis to kibbutz…  That's really what people need you know, is a place to feel they are understood and are part of a community.  I know Lumigrate makes me feel as though I'm in charge of my illness - I have choices, get new ideas.  Moishe's eyes start to roll when I see some new recipe.  He just likes to put up a fuss.

Again, I wander.   Does anyone have anything they want to say before i continue?  Noch (no)?  Gut (good). 

So what do you do with the anguish from these chronic painful lives you have to lead?  If you were to ask a normal, ordinary doctor they would suggest pain killers perhaps, anti inflamatories, and/or a slew of other things such as rubs, ointments, straps, harnesses, velcro gadgets, corsets and perhaps stockings that cover you from your toes to your nose.  Personally, I don't want to spend my day slathered and tied up unless it's for a very good cause and at my age it had better be REALLY good!  I'll ask you again Bubelehs, what do you do?  I've made mention before but now I'm going to lovingly put it on YOUR plate to share with me/us!  Forgive me Liblings but a Bubie's gotta do what a Bubie's gotta do!

Being the hippie that I am I prefer a more natural approach to things, ideally.  Sometimes pharmaceuticals are needed too, and that's okay, it just seems to make sense to keep things as much like nature as can be done, overall.  Chiropractic care is always number one on my list but not by some schlubb that's going to crack me and send me on my way nor am I going to someone who's only out to sell me what's on his/her shelf.  I ask a lot of questions when I CALL a doctor of any kind.  If they call me back, that's the first step to having me hire them as my consulting provider.  They really have my attention and my interest if they answer my questions the way I need them answered.  I'm not a number, dawlinks, don't treat me as such.

At home, I do aromatherapy every day.  Today I'm burning Yankee Candle's Fireside (a wax tart, Mardy, don't get your panties in a knot).  It's a very soothing scent, non evasive, quite middle of the road and perfect for meditation.  Though this is a good scent for me, you may need something more floral or perhaps more fruity.  I'm also learning something called bio-feedback.  It's a method of pain control done through breathing, release of muscle tension and perhaps visualization if you're so inclined.  This method slows the breathing to approximately 10 or so seconds inhale and the same exhale but the trick is finding the spot where you don't fall asleep long enough to fully relax is still being sought after by yours truly.

Have I left you flustered?  Didn't answer anything, did I?  I wasn't supposed to, Liblings. The point here was for you to see that no one is alike, nor should be treated the same.  Finding a doctor who doesn't do the same thing twice and finds your comfort is a personal journey rather than a pill popping, hop along, ride 'em cowboy fantasy.  Just because I get relief through meditation and breathing doesn't mean I don't have a cubby full of drugs that'll knock you into next Thursday for those times I need them -- at least for now I do.  I'm ancient, dawlinks, not insane. But if I ever quit falling asleep and can really master my mind-body connection, maybe they'll only knock me into next Monday!  No, not a Monday, let's hope for Saturday or Sunday instead.... 

It also doesn't mean you should stop looking for your answers once your doctor(s) write you a script, tell you to go exercise or you find some guru in an ashram that claims to infuse goat's milk with magic mushrooms (don't ask dawlinks, you get as old as I am and there just are all kinds of things that come to mind from my years).  It's a process that you'll always be refining. 

Aren't we, after all, looking for that magic something that will cure what ails us?  No ashrams here at Lumigrate, just very smart people with life experiences, fabulous training and willingness to help.  Seek and ye shall find.  It couldn't hurt!

Your Yenta

 

__________________

Yenta Tellabenta is truly a 'creation' for outreach and education with Lumigrate.com through storytelling and reinforcement of key concepts related to body, mind, spirit. Written by a very talented and somewhat mysterious younger wise woman who found her way to Lumigrate the summer of 2009, we hope you enjoy having your own Yenta with us at Lumigrate! Yenta (meaning 'town gossip' or 'connector') has a dedicated Forum at Lumigrate at http://www.lumigrate.com/forums/health-issuesdis-eases/fibro... and can also be found on facebook.

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Re: Fibromyalgia/CFS Awareness Day 2011 - What do YOU think ...

Liblings, this is what Mardy sent to me, so I thought I'd post it here --- it inspires me to write, I hope it does too!

Your

Yenta

 

Hi Yenta, thanks for posting the first item on this fun contest -- I wanted to let you know I am going through Lumigrate's Forums and personally contacting many of the 'GRATE contributors' to be certain that you are aware of the contest/ activity we are doing for Fibromyalgia Awareness Day, May 12th.  (The Drawing will be the week after (May 19th) in order to give everyone a chance to learn of this and think / write if they wish.)

I'm hoping to see many NEW people write too but definitely wanted to reach out to each of you and let you know about this if it's something you'd like to contribute to, AND to thank you for what you have done to increase the information at Lumigrate.  "Many hands, light work" we are, and since it's all about YOU (each person), what every person contributes can be exactly what someone reading is needing to have come their way.  "Awareness" is the first step, becoming knowledgeable the next.

Appreciatively, and with hopes to increasing awareness until we can all talk about something else because everyone understands what fibromyalgia is and people are effectively treated!  ~~

Live and Learn! Learn and Live Better!!  ~~ Mardy

The link is at : http://www.lumigrate.com/forum/fibromyalgiacfs-awareness-day-2011-what-do-you-think-do-write-and-win-booksbags

__________________

Yenta Tellabenta is truly a 'creation' for outreach and education with Lumigrate.com through storytelling and reinforcement of key concepts related to body, mind, spirit. Written by a very talented and somewhat mysterious younger wise woman who found her way to Lumigrate the summer of 2009, we hope you enjoy having your own Yenta with us at Lumigrate! Yenta (meaning 'town gossip' or 'connector') has a dedicated Forum at Lumigrate at http://www.lumigrate.com/forums/health-issuesdis-eases/fibro... and can also be found on facebook.

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Mardy Ross
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Joined: Feb 16 2009
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User offline. Last seen 45 weeks 21 hours ago.
Fibromyalgia is ______. Reversible YES! Curable ??

Note: This is something I intended to have enough detail I can print it out or email it to people who ask me 'what is fibromyalgia?' -- but please don't feel that yours needs to be any particular length.  The important part is the exercise of putting into words what YOU think, and then to have a collection of different perspectives and approaches to the questions.  

In the winter of 1998, when I'd been an OT for about a year and had done internships at the VA and been hired by the biggest Medicare-milking therapy provider in the United States, my REAL education related to medical things was 'upped' by a non-insurance billing MD who took my paradigm to a WHOLE new level.  Essentially, I'd not c/o (complained of) 'pain' when asked (not touched) about pain; when asked I'd say I had 'stiffness' in my shoulders and neck. It hurt 'in a good way' when a massage therapist or a friend would rub my shoulders or neck -- and I could never get enough of it.  Isn't that 'normal' for people who work hard though?  

I DID c/o fatigue and night sweats (in my mid 30s) and had stopped complaining about migraines because the medications in the 1980s and 1990s were worse than the headache to me, so my fibromyalgia-aware MDs had been focusing on 'chronic fatigue syndrome'. I'd had a really bad case of in 1989, back when it was called 'CEBV - chronic Epstein-Barr virus', or 'chronic mononucleosis'. 

That February day in 1998 when my 'real' education about the medical system and 'fibromyalgia' REALLY began, though, I'd sat through an hour-long intake appointment and at the end he said he needed to come do a quick hands-on assessment of my thyroid and when he also touched my shoulder with his non dominant hand, which was as hard as a rock, he said 'that doesn't HURT?'  Well, they've hurt for so long I learned how to tune it out maybe.  And besides, compared to the almost daily migraine headaches, they don't 'hurt'.  Pain is 'relative' and nobody really assessed it objectively, or with a paper and pencil/ picture / writing task.

He then went out to his medical assistant-type staff (nurses, MA) and dragged them into the room and said 'this is why you always touch a patient, because she was not report THESE TIGHT SHOULDERS AS 'pain'!!!  They nodded and then went out of the room and he went on to say to me privately that I essentially met the criteria for the 'diagnosis' of 'fibromyalgia', but went on to specify that FMS is a diagnosis that will lead to insurance problems and it's best to stick with what the underlying treatments were, which have to do with energy, so the 'diagnosis' of 'fatigue' was better to utilize. 

However, this was coinciding with when the 'cash cow of Medicare' needed to stop bleeding money through fraudulent and abusive billing practices and the US government went to a system called 'PPS' (Prospective Payment System -- essentially a capitated system where 'we'/ the facility would get a certain amount for a length of time based upon what a new patient could 'do' or 'tolerate' in therapies (OT, PT, ST) for the first days they were with us, and that was what would get reimbursed to the companies. 

This lead to massive layoffs and while I jumped off to a lesser paying job outside of insurance-based medicine before that occurred, in order to at least have a job that utilized my brand new college degree, it meant I no longer could afford to go out of the insurance loop to a medical provider such as I had been going to.  And somewhere in there 'they' coded 'fibromyalgia' and I became 'uninsurable'.

So in this exercise about fibromyalgia 'knowledge', I want to say that what I think fibromyalgia 'is', is a homewrecker.  A lifewrecker.  A bank breaker.  A thief.  But in reality, it isn't the medical condition that has done that, it is our society's systems related to how we treat people who have medical problems that has lead me to feel that way at some level.  The 'system' that had the ICD-9 codes that created this whole 'thing' in the first place for me is the very system that has created so much confusion.  I hope my small and singular story about what happened to me hits that point clear out of the ballpark.  

I sometimes wonder if it's even possible to calculate the inexplicable subtleties of the costs involved with fibromyalgia and CFS, such as work-related difficulties, family misunderstandings and friends who no longer 'mesh' with me because I'm simply not the same person I was.  But that's what each of us with FMS have to reconcile individually and, I hope, with the help of the multi-faceted providers who are providing information and consulting services you can find here at Lumigrate.com.  

Essentially I believe there is a genetic piece; in the age-old discussion about 'nature versus nurture', the studies have recently been typically showing it's about a 50/50 'equation' for most conditions studied.  There are really fascinating overall areas of study I've read about in the past year related to epigenetics, which found people's health is affected several generations AFTER a change occurs.  (In one culture there was a surplus of food for one winter and it was the grandchildren of those people who had changes in their bodies the research showed, not the generation that overate one winter, nor their children.)  

There also were amazing studies about early intervention in teens who were identified as having the early signs and symptoms of becoming schizophrenic; nutritional intervention plus family therapy was provided via the study and only about half as many developed the disorder compared to the control group that.  All it took was educating the school employees of what to look for and then inexpensive intervention to cause a dramatic drop in occurrence.  I cannot help but wonder --- or maybe even 'believe it is likely' -- if it's similar for fibromyalgia and chronic fatigue syndrome.  The more I learned about what the causes and contributing factors are to CFS/FMS, the further back I realized I had symptoms that were indicating I was going the route of developing CFS/FMS.  

I very much wish that my physicians and parents would have known when I was blacking out every time I stood up in my teens, that the blood pressure irregularity was NOT a good sign.  Known the 'prediabetic hypoglycemia' I was diagnosed with in my teens might have had something to do with the schedule I was being forced to have between my family responsibilities and school schedule (which had no extracurriculars, that was just the basics!). I never slept through the night and as a young child would wake my mother up and tell her I had a stomach ache every night about 4 am -- nobody questioned me about it to find out I wasn't sleeping, it wasn't at all that I had a stomach ache.  

I wish that today if a 15 year old girl went to the clinic I went to in a rural but affluent/'yuppy' town that's a suburb of Denver essentially, and had the same symptoms I had, that I would have confidence that her medical provider would know that she was 'on the continuum' to be developing fibromyalgia and chronic fatigue syndrome and early intervention would occur and her life would not have the same horrendous burdens mine has, which are relatively common/usual for someone with 'a good case of fibromyalgia'.  But I doubt any bells would go off and that's why I work as hard as I possibly can and still function relatively well with my own health.  That is why I take the time to include in this piece my history as a child/symptoms so it might make a difference in the future if someone shares it with a medical provider or providers.  

I'm fortunate my mother was a very even tempered and patient woman and I never got in trouble for waking her up.  However, she was a minimalist about EVERYTHING, including her parenting responsibilities, so many things got swept under the rug.  My parents were married still but fairly fractured; my father I now realize, was in his 40s and experiencing a classic case of undiagnosed fibromyalgia.  He worked VERY hard, drove into the sun both ways each day (seriously, it's NOT like the joke about having to walk to school and it was uphill -- both ways!'.  I canNOT imagine doing what he did but then when I look back on my hardest years with fibromyalgia before it was properly treated and 'reversed' a great deal, I also don't know how I did what I did.  Anyway, the reality was that my family had their own 'stuff' going on and I adapted by doing my best to be the least added burden I could and to take on as much responsibility to help as soon as I was physically able to do so.  

But they kept medications out of the reach of children, so I'd be given some pink liquid on a spoon and go back to bed and go back to sleep eventually, certainly not wanting to get up when most children naturally wake up in the morning.  When I went to first grade I started drinking coffee with breakfast; on very cold, mountainous winter mornings I would even take a cup with me to the bus stop and leave the cup in the mailbox.  So I encourage everyone to really examine their histories well and put the pieces together as best they can because then you can better figure out what might work to get your health back in order.  And if you're around children, perhaps remember this story and utilize it as incentive to try to make changes so one more person has chronic wellness in adulthood instead of illness.

There are lots of variables from conception having to do with nutrition of the pregnant mother -- smoking, alcohol, etc. too.  Stress.  Birth trauma.  Family of origin stability versus stress for the next 18 years, more or less.  Spiritual stress.  And a biggie is nutritional stress -- we have for generations now, depleted our soils and poured on the pesticides.  The generation now in grade school is projected to be the first to live LESS LONG than their parents.  Think about that, please.  Then overlay that related to the specific segment about 'fibromyalgia'. 

I also believe it is going to be increasingly reported by scientific studies that our lifestyle related to our hobbies and leisure as well as 'exercise' is a part of why the rate of fibromyalgia is increasing so dramatically.  Soccer balls, football helmets, amusement park rides, falls from wheeled gadgets we use for 'fun' in increasingly dangerous ways as the equipment has allowed all contributes.  Example; think of a bicycle 100 years ago versus today.  Skateboards.  I've thought perhaps more women than men have fibromyalgia because our heads are smaller but the sharpness of the bones inside the skull that essentially top the spine cause shearing on the structures of the brain such as surround the pituitary.  I'm currently having treatment to shift my teeth and bones of my palate and entire cranium and that I think may be one of the last stones to be turned over in my case -- that stuff goes back to birth at least!  So that makes sense I didn't sleep well as a baby or any time since. Unfortunately it might be that the pituitary cannot be restored after about five years of being damaged BUT I am hopeful this will be making it so there's less likelihood of future damage.  That just kind of makes sense to me at least.  

Overall, in most cases of people who develop CFS/FMS, we end up overworking (which might track back genetics again, then add onto it possible dysfunction from the parents related to why we do what we do and why, etc.).  Type A people develop these disorders more than other personality types. Perfectionism seems to come up a lot related to people with FMS.  We're trying to accomplish too much and haven't learned to respect our SELVES and our time/energy needs FIRST and foremost.  When we feel tired and dragging we reach for caffeine and sugar, maybe alcohol which is essentially packed with sugar for the body.  

That leads to yeast imbalance in the 'gut'; the gut and the sinus are intimately yet ironically 'related' just as the brain and intestines.  Sinus infections.  Bowel problems.  You're 'pulled down' by all these things and then the quality of water and air become a 'burden' to your system more so than they would if you were 'well' instead of 'ill'.  In my own history, I know indoor air quality was a big factor at a critical time when my body was SO trying to stay in the 'well' side of the continuum.  I also suspect the well water I had as an infant and child might have been a factor in why I had so many fillings in my 'first'/baby teeth and not in my 'second'/adult teeth.  

When I think back on my 'evolution of symptoms' it very much followed this path and along the way and I certainly hope the overall fibromyalgia awareness campaign goes a step further to becoming a 'knowledge campaign' and people who are in a position to work with children start identifying the events that might indicate a problem is developing and then get proper treatment.  In the early stages it stands to reason it's much easier to get 'nipped in the bud'.  

Once someone has fibromyalgia and chronic fatigue syndrome, looking too much at the catch 22 or 'chicken and the egg' in a way that can take you too far off the track of solving the issue if you spend ALL your time figuring what came first, however. I see that a LOT in my work with the fibromyalgia population as an occupational therapist consulting / educating related to the 'occupation of health care'.  So keeping a proactive approach to going about doing something every day, if not a LOT of things every day, is my recommendation. 

Adrenal exhaustion is both the cause and the symptom the way I look at it, and that leads to the part of the brain called the hypothalamus (below the thalamus = hypo / thalamus), which causes premature hormone deficiency.  In this case it leads to diminished estrogen which causes insomnia.  That leads to increased infections, then we likely get antibiotics which also kills the bacteria that keep yeast in the gut in check, and that leads to the immune system getting more 'whammed'... Look above to what I wrote about immune system getting diminished and start over again and think of how this keeps going round and round UNLESS you STOP the cycle.  Your muscles end up in an 'energy crisis' and then you end up with a couple of things happening -- first, it's likely you stop being as active, which causes more problems than if a low level of activity is maintained.  

And then areas get sore -- those 18 tender points that are used to 'diagnose' fibromyalgia historically.  It takes more energy to relax a muscle than to contract/fire it up.  This is where it's really imperative to learn about supplementing nutrition in addition to changing how you eat.  The other huge factor about foods is if there are foods being consumed that a person's body has a sensitivity or allergy to, which is an incredible problem in the United States and other countries today. 

We talk about 'stop the cycle of violence' but in this case look at this and 'stop the cycle of fibromyalgia and chronic fatigue'. I WHOLE heatedly believe FMS/CFS is 'reversible'; I have no doubt about it because I have personally experienced it!  In addition to what I've said, above, about the hormone system being part of the 'problem' and one of the 'symptoms', having competent experts in the field of hormone diagnostics and treatment is IMPERATIVE.  I personally believe utilizing biologically identical hormones is the ideal route for long-term health and well-being, but there are many experts in integrative medicine who suggest certain 'big Pharmacy' medications.  In years past,  I've experienced the frustrations of not having a local and qualified expert as well as compounded hormones being incorrect so I have worked very hard in the last three years with Lumigrate to have really valid, progressive, and top quality providers here in the Forums and pod casts at Lumigrate.com who have served clients nation-wide for years and in some case over a decade.  

When it comes to the word 'curable', that's where I don't have personal experience but I defer to my thinking about theories, and in theory I believe it is 'possible' to 'cure' fibromyalgia.  But, just the way cancer is considered 'cured' when there were no outward manifestations after five years, I believe that a person who has enough stresses outside of exchange for the positives to the body, mind, spirit to offset the draining of the stressors can revert back out of 'remission' or being 'cured' to having the issues again. I've put lots of content on Lumigrate via providers I've requested do so, related to the power of the mind.  AND I also am working more on developing additional spiritual advisement because for those who believe challenges as well as blessings are 'G-d sent' might find it is not 'in their cards' to be 'cured'.  

So this then takes it to another whole level related to what fibromyalgia 'is'.  It's felt to me for the past 22 years since I really fell apart health-wise, like I'm unraveling a sweater to get back to the point where the error was and the I can re-knit it back, but I've found I had to unravel the WHOLE sweater and totally start over again in a way.  It feels like a massive undertaking and is quite daunting and many get overwhelmed by it and feel helpless frequently, as a result.  The antidote for that is to keep your goals in mind and if you need assistance with that, we have a forum on life coaching and more materials on the way related to the process of recovery from our experts in the Lumigrate forums.  

So that's my story, and I'm stickin' to it!  I look forward to what you think FMS 'is' and if it's reversible and then if it's 'curable'.  And as I say, 'Live and Learn.  Learn and Live BETTER!!' ~~ I look forward to learning from YOU in the next moments, days and beyond.  ~~ Mardy

 

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

Tina Peters BSHN's picture
Tina Peters BSHN
Title: LumiGRATE Poster - Minimal
Joined: May 11 2011
Posts: 1
User offline. Last seen 13 years 26 weeks ago.
Re: Fibromyalgia/CFS Awareness Day 2011 - What do YOU think ...

Let me begin by saying I don’t necessarily like to talk, about myself, but since I have fibromyalgia syndrome [FMS] and have had relative success 'treating it', I hope it will be of value to many of you.  This is an honor to write, as a local professional connected me with Mardy before Lumigrate was a reality and recently we finally met in person and had such a 'click', she asked me to contribute here. 

 Some background: I was a flight attendant for 11 years (1984-1995). Eight out of the 11 years I never, ever slept for more than an hour or two at a time . Those of you with chronic fatigue syndrome [CFS] know how debilitating that is. Because of that, my immune system was shot, etc. etc. and by 1992 when a rheumatologist finally diagnosed me, I was in bed laying around all day because I was up all night. So basically I didn’t have a life. My husband took care of our children, cleaned the house, cooked, and also worked at his vocation/profession. I never took the drugs because I never knew of anyone they helped. I was in despair, like many of you.

How did it start? Well just like most of us I don’t really know except I was in a car accident in 1984 and, some time after, developed severe fatigue. So whether it was a result of the accident, Epstein Barr or a “bug” I got on one of my trips (for those of you that have read “Adrenal Fatigue” by Dr. Wilson and believe it may be mycoplasma related).

Add to that the constant cigarette smoke filled cabins which prompted me, and a small group of fellow flight attendants, to lobby successfully to make it a Federal offense to smoke on an aircraft. But the damage to my body was already done by that time. The fact is, all this happened, and by 1995 I quit the airlines thinking as a result of leaving the stressful environment I would certainly get better, but instead continued to get worse.

NOW, for the good news…

Having gotten very jaded and suspicious of all the “claims” people made to me of how their potion or lotion could cure and heal (you know what I’m talking about) , I almost missed 'that' which ended up working very well for me. That being the solution that would put my “bad boy” condition into remission. Yes, that is what I said! For me this actually gave me my, once very much active, life back!

Now, I don’t want any of you to get your hopes up and I cannot make medical claims. But I’m writing my story the way it actually occurred and if it helps in some way, for that I’m grateful. You see, I saw an ad in the newspaper. Two lines, but those two lines saved my life . Here is how it read; I remember it to this day, “Finally free from pain and insomnia, Call Sandy”

Skeptical me contemplated 'should I risk one more disappointment?' But something (maybe desperation or “what do I have to lose”) prompted me to just hear what she had to say. The rest is history so to speak. She told me her story about her debilitating bout with FMS, what had turned her life around, and invited me to come see her. I remember thinking either she was delusional or totally “what if “, as she sent me home with several hundreds of dollars of strange equipment… for free! 

I remember thinking 'what a compassionate person' AND 'she doesn’t even know me'; I could just drive off with this stuff if I wasn’t the honest person I am.

Her sincerity compelled me to put this crazy two inch thick magnetic pad on my bed and when I woke up the next morning and realized it was morning (instead of the usual middle of the night routine) I got so excited! I had slept through the night! OMG!

That was proof for me. I slept! No one had EVER been able to get me to sleep, and after a few weeks, I had more energy. And then I found when I did go into public places, I didn’t get sick (colds, flu whatever was norm for me because my immune system and adrenals had all but pooped out completely.)

For 15 years I have lived life like a certifiably “normal” human being and for that I will always be so very grateful.  ... Until last year when I was at a stop light in LA and a car going full speed rear-ended me. I will save those details and what I did for that for another time.

I love the quote by Michael Critelli, “It’s more cost effective to maintain health, than to restore it.” If we can all practice a mindset of being proactive to get to the root of the problem and then naturally maintain it there, boy, that is true riches in this economy better than silver or gold! That is my goal, to help others and my mission.

Thanks for investing your one and only time that you can’t get back in reading this.

I hope it has encouraged you that there are answers, simple answers to your problems.

Don’t give up ... get UP! I’ll be rooting you on! 

Tina 

__________________

The main focus of the health-related work that Tina Peters, BSHN does with clients is to "get to the root" of their health problems. She uses a holistic approach to vital energies. Having lived the frustrating life of misdiagnoses and dead end remedies she studied holistic nutrition and health and understands both sides of being a health care provider/advisor and consumer. You can reach her for consultation at (970) 261-4302 (Grand Junction, Colorado, USA, mountain time zone.)

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 2032
User offline. Last seen 45 weeks 21 hours ago.
Thanks, Tina... Same better place, different route!

 Even thought I spent a really 'grate' evening with you recently, I learned new things about you from this, as I hope you did from my piece.  At about the same time you were dealing with the US govt related to heavy metals in the cigarette smoke in the 'flying sardine cans' as I refer to them, I was unknowingly getting a dose of toxins from outgassing of 'economical' carpeting, glues, plastic 'woodlike' particle board furniture and the likes.  My health crashed in 1989 when I was 29.  We'll have to compare more notes if you'd like about the details but for NOW I REALLY appreciate that you shared your story.  Thank you for that.  

I recently went backwards with my health as well, but not from being in a car crash, but from other stressors to the body/mind/spirit.  I'm confident if I could get it 'better before' I can get it better again! So those are the similarities ... As for differences, I have gone about my recovery/improvement with the things I spoke about, above where you wrote, but I do know that one of my physicians had recommended the overlay you refer to and I did a shortcut and purchased a 'different' brand and never have experienced the results I was thinking would come from such a valid MD's suggestion.  (Milton Hammerly, MD, who went on to write a wonderful book I have reviewed/summarized in the forums, "Lumigrate Bookshelf". 

Again, thank you for writing and I'm looking forward to picking your magnetized brain!  ~~ Mardy

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

NY_LUVTOY (not verified)
Re: Dawlinks! Fibromyalgia ... Oy Vey!! Awareness Activity

I love the way you write! If only writing relieved the "fibro"  as it does mental stress... It would be an awesome cure to learn. 

NY_LUVTOY (not verified)
Re: Fibromyalgia is ______. Reversible YES! Curable ??

Re: Fibromyalgia is ______MY personal P.I.T.A (Pain In The A** & EVERYWHERE ELSE!!!!) LOL

I have always been an "OVERWORKER" to say the least.  Yet as much as I want to, I can't do what I used to.  My fiance has thought I was faking all this pain the past few years until I was recently diagnosed with Fibro & Osteoperosis.  It has been a helluva 40th year for me!  And all those who say its a great thing to turn 40 I've got a few choice words for you! $@&@!!**...

All in all I would love to hear some suggestions from those who are in the same situation.  I read all these pages & find some good info yet most of the time they really don't apply to me or I try them & they don't work!  I have come to the conclusion that I am a "chosen one".  By whom or what I don't know, though I have been chosen to be one of the "human rats"  for the field of medicine! 

I could be a Jerry Springer sorta guest on the Dr's show; Dr Oz, & even Dr Phil would pat my back & say 'WOW... for all the medical and mental crap you have dealt with these 40 years, you could write a book & it would be a best seller. 

How I survived all this I have NO idea! Apparently i'm not wanted up above or down below yet the doctors love me as their personal "lab rat"! And so goes it!  LOL

 

I love reading all your articles and try to learn, yet mine is always an odd ball sorta thing which tends to baffle the doctors.  Like I said I guess I'm one of the "Chosen Ones". 

 

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 2032
User offline. Last seen 45 weeks 21 hours ago.
Pain In The A** & EVERYWHERE ELSE!!!!

 Thank you, NY Luv Toy (the usernames people have sometimes crack me UP!  I'm glad to see you're not a spammer that comes from websites trying to register and hack or pfish or spam -- certain words 'flag our attention' when users register). 

I got home from an event for a local woman's book launch where I'd joined Tina Peters, who wrote just above you, 'coincidentally', and when I got sore from sitting I went back and stood at the back where the local compounding pharmacist who is soon to make time to contribute content at Lumigrate was standing.  So I'll also see if I can get Karen Floyd RPh to hop in to the contest based on what you wrote, NYLuvToy.  And I'll do the same with Tina Peters, since all three of us heard the words spoken by one of the amazing women who spoke last night at the event.  

Karen said to me 'that's pretty much what you said the other week when we met' -- about my spiritual belief that I chose the parents I chose to pick up the DNA, pick up the function and the dysfunction, the abilities and disabilites, the strengths and weaknesses I've enjoyed or had to struggle with in this life.  Last night one of the speakers talked about her son having told her when he was a boy that he and his brother were sitting on the moon and saw her and their father down in their house and they chose to come to them as children.  

This is a belief I have had since about the time I developed fibromyalgia 15 years ago; I fortunately was beat up by my hairdresser one day (kidding, but she popped me on the head) when she was frustrated that I wasn't taking her advise for joining in the same spiritual development she had been taking classes on.  (I was kinda immersed taking classes to become an OT, worked full time for the first half of the time, had an aging father many miles away who needed increased assistance., just hadn't prioritized 'spirituality learning').  I have not discussed my personal spiritual beliefs on Lumigrate.com, though I do behind the scenes with most of my contributors so they're aware I'm maybe not the most conservative person out there, but I had Yenta come in our first years to help with the concept of spiritual differences and acceptance in order to pave the way to take Lumigrate more progressive once we were established.  My concern was to have someone who really could benefit from our information discount the website because they disagreed with our 'politics' or 'religion'.  

Lumigrate is about 'integrative' medicine, which equally acknowledges body, mind and spirit as the whole of health and wellness.  And also then, any of these things if overlooked or 'stressful' to a person can contribute to chronic illness, obviously.  Allopathic medicine, as we have been steeping in within the US and beyond for many generations now, doesn't even include spirituality, unless you are at a Catholic hospital and are Catholic.  I was at our Cathollic hospital last summer with a very dire situation of a friend's family member and she was Catholic so they had some good services for her.  Had I been the sister that was needing a spiritual advisor, I don't know they could have offered me anything helpful to ME, as I'm not Christian.  I guess I should have asked if they had a shaman or an astrologer they could send my way to talk!  LOL

So I hope to get the perspectives of Tina and Karen and others who were in the room last night -- a significant number of people who are part of Lumigrate's content provision locally were in the room.  Just as one of the women had never spoken about her cancer pulbicly and last night said 'now I'm out of the closet', I guess this is pulling me out of my spiritual closet on Lumigrate a bit.  I'd made the conscious decision and verbalized it as a goal/intention of direction for Lumigrate earlier this spring that we'll be going more progressive.  That's what I LOVE about this format with Lumigrate in the forums is it is 'organic' and I believe I see the people and words and thoughts coming to the pages here without MY direction many times.  So I personally believe I have been but a facilitator who had a certain skill set and problem set, including fibromyalgia, which has lead me to create a space for G-d (as Yenta calls it) to work.  So I hope that if people resonate about this, they'll go look at our Spirituality forum.  We're not just about hormones or vitamins or psychology, we're about mind, body, spirit.  We're not just about fibromyalgia, we're about all the conditions that are caused by lifestyle and therefore can be reversed and often times cured with changes in lifestyle.   But THIS contest is ALL about fibromyalgia so 'bring it on!'  

~~ Mardy

PS - maybe we need to have another prize for 'best use of emoticons'... You'd win that for sure! FUN, thanks!

 

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

Gary King RPh's picture
Gary King RPh
Title: LumiGRATE Poster - Major
Joined: Feb 22 2011
Posts: 25
User offline. Last seen 12 years 31 weeks ago.
Gradual improvements and adrenal fatigue remediation

I find that all patients with FM and CF (no matter the primary cause) are adrenal fatigued and if they can treat the adrenal fatigue successfully they can gradually improve. Of course if there is a primary cause it must be corrected as well. To successfully treat adrenal fatigue you must work on removing as much stress as possible from their lives, whether that is a chronic illness, a bad relationship or whatever.

While working on that they must support their adrenals with proper nutrition, and in many cases with natural cortisol replacement to give their adrenals a break from the “Bull Whip”, which is what I call the pituitary gland's unrelenting secretion of ACTH which tries to stimulate an already exhausted adrenal gland which is already down on it’s hands and knees with it's tongue hanging out. Unless the “Bull Whip” is stopped they can never recover.

If you give those patients small physiological doses of cortisol, the pituitary says "WOW! those lazy adrenal glands finally started working again" and stops hammering them with ACTH, which then allows the adrenal glands to begin to recover if they are able.

It is very difficult for thyroid hormone to function when the cortisol levels are depressed so when you replace the cortisol (if needed) then you can see improvement in thyroid function, giving the patient more energy. If you give a patient with FM or CF thyroid replacement when they have fatigued adrenals, you need to make certain their cortisol output is adequate or you may cause more problems then you help.

The sex hormone function is also affected by low cortisol levels and you must address that issue also. And then naturally this above overall answers your question about 'reversible'.  Thank you for asking this question, it's a pleasure to educate AND I look forward to reading what others learn from the exercise of writing from their perspectives. 

Gary

__________________

Gary King, R.Ph
Co-President, ITC Compounding and Natural Wellness Pharmacy
, Passed On 12/21/12 Castle Rock, Colorado, USA http://www.itcpharmacy.com/

(Note from Mardy: Our 'cupcake' pharmacist educator (crusty on the outside, soft on the inside, could also be sweet and colorful) emailed his business colleagues on October 1, 2012 to announce he and his oncologist looked at the response from the final treatment option they had tried related to cancer of the pancreas, which had been diagnosed earlier in the year. Ever the 'take-charge' guy, he wrote "and my oncologist agrees with me... and will be arranging for hospice next week.). Challenged with our first expert contributor who was going to die, and being a health education website which includes information about end of life illnesses, I emailed back and asked we could maintain his contributions to allow his wisdom to help people in the future, and have the signature here reflect things, as you see it, including the 'cupcake'/humorous slant, since that was how he had always "rolled" in our interactions. "Thank you, Mardy, I have enjoyed our friendship" was the blessed response and cherished words which were the last I heard from this treasured friend to Lumigrate. Yenta thoughtfully prepared a special tribute article titled "Air Kisses", which I encourage you to journey to sometime and see how the rest of the team of experts at Lumigrate who knew Gary through our collaborations, contributed their thoughts and blessings. http://www.lumigrate.com/forum/air-kisses . WARNING: Have a tissue handy and be ready to SMILE. When Gary set his signature up when beginning to write on Lumigrate in early 2010, he said this which I want to stand posthumously:

When I'm not at ITC Pharmacy talking on the phone or in person with medical providers or consumers from all states in the United States and beyond who are looking for guidance about compounded medications or supplements, I'm enjoying life outside of medicine. I'm regularly on the golf course or taking my dog on walks with my wife, juicing and making healthful meals to throw my favorite hot sauce on. I look forward to reaching new people to help them improve their health through Lumigrate.com, so don't hesitate to contact us.  Our business page on facebook is at www.facebook.com/profile.php

Gary fortunately had a strong partner in Allan Jolly, and I understand Gary's wife has filled Gary's seat as co-president. We all benefitted through his education here because he was interested in this form of education despite it being another 'chore' that delayed his getting home to his wife, dog, or golf course. Blesssed 'Air Kisses' Gary, no resting in peace wishes from me for your soul, Gary, have a hole in one and celebrate with a particularly nice glass of wine is my wish for you. ~~ Mardy (January 2013)

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 2032
User offline. Last seen 45 weeks 21 hours ago.
I LIKE that Gary includes psychological stressors too

 I've had the NP ITC has 'in house' a few days a week, Becca Slomiani, become one of my advisors and prescribers related to hormone and nutritional supplementation and was REALLY impressed in the first words of my 90 minute consult where she was looking at the results of my laboratory results had to do with 'support system'.  I hope my answer related to my workload with Lumigrate reflected that I also have a support system through the writers and content providers who I'm working diligently to have be here for YOU.  That is truly a test to me of the validity of a source of information -- when they sell products and also advise people to do the many other things that don't bring them any money in return.  Example: ITC sells a wonderful and cost-effective/efficient vitamin D supplement but they will talk as much about getting sunshine and then getting your labs done and supplementing from there.  

So for many reasons, I very much appreciated what you contributed here and always, Gary.  Hope you're out there in the beautiful Colorado spring day getting in some shots on the golf course having had a good week doing what you do best.  You earned it!  And maybe you'll win the drawing and get the books back that you donated or sold to me for the contest AND the pretty book bag.  There's a winner for provider/nationally as well as provider/locally and then one for the public/consumers who are not medical providers.  ~~ Mardy

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

Clarissa's picture
Clarissa
Title: LumiGRATE Poster - Frequently
Joined: Sep 28 2009
Posts: 11
User offline. Last seen 13 years 26 weeks ago.
Walk in the light of your fearlessness.

As an 18 yr. survivor of CFS, MCS, and Fibromyalgia. I understand the sorrow of your daily struggles. I know how hard it can be to try something new, even if its natural.  Many days, getting up isn't an option.  Yet,  I've learned that many times natural healing techniques are most helpful in diminishing symptoms. Drinking lots of high quality water to stay hydrated and doing lots of deep breathing to help with energy and the brain fog are really important. It is equally important to make sure that your iron, B-12 and vitamin D levels are good. Vit D deficiency causes long bone pain, vision problems and inability to heal from infection.

I know the pain of being house bound and the pain of isolation. The emotional stress from these illnesses is almost as difficult as the physical aspect. I do, however, know that we can not only trust in our physicians, but we must take our healing into our own hands. We have to move ever forward, if only one small step at a time.  We have in common this journey that we are on, and reaching out to each other is essential to our healing.

These  invisible illnesses are a thief of dreams. They can take an active person and diminish their lives to little more than an infant's. The body consumed with pain, exhaustion beyond words, chemical sensitivity, many cognitive and brain issues. All deposited onto one life, one body to bare the weight of it all. They consume their victims leaving many homebound and bedridden.

Being misunderstood by so many people, their lives are lonely and isolated. Expecting a person with such an illness to function on any sort of normal level would be like expecting a blind man to be able to see. There is no making yourself 'go and do' with such illnesses. They become the decision makers for those who are surviving them each day. 

These people are warriors of a unique kind. Going out to battle an unseen monster each and every day.  They remain imprisoned by these invisible, yet vicious, illnesses . I've found that knowledge is power . Learning my limitations is not defeat but rather taking back a bit of control. Adding supplements, removing toxins, learning deep breathing techniques and more can allow us a better quality of life.  This is a goal to strive for.  Allowing ourselves baby steps prevents us from the feeling of defeat which can come by doing too much too quickly.  

Be kind to yourself. Respect who you are. Walk in the light of your fearlessness. 

 

Clarissa Shepherd : Author of "Find Your Way" A guide to healing

http://www.amazon.com/s/ref=nb_ss?url=search-alias%3Dstripbooks&field-keywords=Clarissa+Shepherd&x=19&y=15

Analii's picture
Analii
Title: LumiGRATE Poster - Itinerant
Joined: Feb 13 2010
Posts: 5
User offline. Last seen 11 years 35 weeks ago.
Fibro "MY"algia
Fibro "MY" algia

As a practitioner of healing I had my own period of challenge during which  could have been ... maybe "should" have been .... diagnosed as having "chronic fatigue syndrome" or could have ventured into the path to "fibromyalgia".  Perhaps that would have been easier on me, as I could have "latched onto" something tangible and real to experience and be "cured of".

In the mid- 1980's I had been very althletic; dancer, yoga practitioner, high impact aerobics, and everything that came across my path that seemed to be the "in- thing " of  challenging the body.  I taught all of this in an environment by "consumer demand", so despite some intuition about leading people through what I had been "trained in" I did eventually come to a place of trusting my own wisdom and path.

During that time I also had a business in the fitness wear/ski clothing industry which had taken off and was financially lucrative.  All my effort went to that business.  What that brought me to was the stress of running a business with aspects of design, manufacturing, distribution, a lot of intense business negotiation which was truly not my nature.  

Within a year I started noticing symptoms of bodily aches and not like what I had been used to from dance ,yoga or working out. Headaches and sensitivity to smells which triggered immediate exhaustion.  At a certain point I was having difficulty even holding a cup and using my design shears.  

I consulted with my primary care physician who sent me through a battery of tests for hormonal imbalance, arthritis and through "therapy" to discuss the stress from a marriage that was difficult.  I was diagnosed with "depression and anxiety" and was offered medication which I used for about 6 months.  I followed up on a suggestion to see a "western medicine" MD who had ventured into "alternative" ways to diagnose and treat who told me I had chemical toxicity that had built up in my body.  Where a normal, healthy body could be exposed to something as common as a newspaper, I had become hypersensitive and unable to avoid a build up. Additionally, cumulative factors of lifestyle, relationship, and the emotional burden of upholding the "image" of health contributed.
  
Now, 20 years later with lifestyle change and focusing my effort and practice on helping individuals "own" their medical state or situation and physical imperfections and to find ways to shift their inner perspective so they are "moving" themselves towards managing their own wellness. Hence, my business' name is "Movement Therapies".

I 'd like to bring this around to fibromyalgia and my practice and insight now:  Fibro "my" algia perhaps seems and sounds more acceptable today. 
I believe some of the musculoskeletal tension and pain associated with fibromyalgia can be slowly released and cleared from the body, thus diminishing some of the other symptoms that co-exist and  continue as a cycle of a chain reaction.

A simple therapeutic progression of releasing muscular restrictions by placing an individual's body in passive gravity-assisted positions, use of breath, visualization, actualizing very small movement and articulations that minimize muscle tension is what my work with fibromyalgia focuses on and is proving beneficial to increasing numbers of people I share this work with.
 
Finally, the most important component is the "self validation" of small but possible change when it occurs. If we allow an individual to pause, assess and validate to themselves that there is less tension, pain or
sensation at that moment, the nervous system can also "validate" that "small" but crucial feedback. 
 
One day we wake up and notice the pain and tension cycle has diminished and that............
FYBRO "MY" ALGIA is no longer ruling "MY" life.
 
Analii Cunningham
Life Alliance
DBA Movement Therapies LLC
__________________

Analii has extensive knowledge and practical experience in the study and application of human structure and integrated movement. Her work currently is focused on female wellness and has a successful practice with private clientele and specialty classes. Find out more about "Female Pelvic Wisdom: Therapeutic Progressions" and "Functional Wisdom" at www.movementherapies.com. Or contact directly by emailing to analii@msn.com or telephone (Colorado, USA, Mountain Time 970-640-2939). Analii is currently the director of two complementary organizations: Life Alliance LLC, DBA Movement Therapies, and Life Design LLC, a company that designs innovative products that foster functional body wisdom.

Judi Larson BASW CACIII SLC's picture
Judi Larson BAS...
Title: LumiGRATE Poster - Itinerant
Joined: May 18 2011
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The Simple Truth About Illness and FMS

As you well know, fibromyalgia is pain. This is my take on all illness.

I spent years of suffering. I was in a great deal of emotional pain and torment. The day came when, at thirty seven years old, I decided life was not worth living. I was a single mom with a teenage son who needed me. However I felt too hopeless about life at that time and felt he would be better off without me. It was at my darkest moment that a couple from my church came up to me and told me I was depressed and they were concerned about me. I did not trust people what so ever. For some reason they seemed safe enough for me to talk to. This is where my life began taking a new course.

I had always been a person who felt the need to control everyone and every situation. This was due to the fact I grew up in an abusive home and did not feel safe.  Living this way placed me out of touch with my emotions. When I reflect back on my life then and where I am today, this would be my Mantra; "To thine own self be true". In my past, these words would have sent me running. I did not know myself let alone love myself ....  how could I be true to myself?!  I spent all my life thinking I needed everyones else's valadation and I would be loved.

Today I am not even close to being the same individual I was back then. Now I put my 'self' first. I invest in myself and foremost I love me and honor Me. I did not know what that even meant years back. I believe if a person has any kind of physical health issue or mental health issue it can be healed. It, however, is a daily commitment to yourself first. God is energy, and resides in all life. If we are willing to take care of what the universe has given us and be grateful everday for ourselves and the Earth we all live in, the sky is the limit.

My life has become an inward journey. THE SIMPLE TRUTH, is that people spend a great deal of their energy chasing after things ... money, clothes, etc. There is nothing wrong with having these things but they will not fill the void on the inside of us. We must do this hard work of an inward journey to find true wellness, and with it comes all the rewards and dreams we are wanting in our lives. I believe in this passionately.

This is the reason God is allowing me to have a web site where I can use the gift of me to coach and counsel people to have the life they deserve. Remember inside pain that is not dealt with causes outside physical pain. In closing, just remember it is all about the energy; how is yours today?

For anyone reading this I wish you nothing but everthing you have desired, including good health.

Judi Larson

__________________

Judi Larson loves living in Palisade, Colorado on the east end of the Grand Valley of Western Colorado. Her formal education includes what is reflected in the 'initials' after her name: Bachelor of Arts in Social Work, Certified Addiction Counselor - III, and Certified Life Coach. Respectful that education is much more from life, she believes "The best education I have received taught me 'To Thine Self Be True' and 'Nature is my friend', which is represented at her website if you follow the link to http://thesimpletruthcoachingandcounseling.com/

Sanctuarylink
Title: LumiGRATE Poster - Minimal
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Re: Fibromyalgia/CFS KNOWLEDGE Day 2011 Drawing/Contest. ...

I am writing to share my experiences and insight with CFS/FM, in hopes of helping others. My story reveals the contributing factors/causes in my case. (I'll try not to get into too many details!) Yes, I think it is reversible, but prefer to speak of healing and wholeness, vs "curing". We don't want to get into the realm of allopathic "cure" claims and jeapordize what helps us! The symptom reversal and help I have found for my CFS/FM, has been outside Western medicine. Remember, the role of the FDA is to protect certain interests, and they go after "natural cure" claims!

I first became ill in 1980, long before Western medicine acknowledged this was a real illness(es), and it wasn't "all in my head"! It's been a long journey of finding out causes, and removing all the contributing factors, to the "labels" for the syndromes recognized today.

 

I first became ill shortly after receiving military vaccines, including typhoid, yellow fever, and smallpox. I was working as an RN at National Naval Medical Center, Bethesda, MD, on a medical/oncology ward, caring for seriously ill patients. Most of them died. The majority were young men, ages 18 to 27, with lymphomas, leukemias, brain and testicular cancers. Was it what killed them that "merely" poisoned and damaged me? Was I more susceptible from possible childhood toxic exposures, 13 mercury amalgam fillings, and damaged genetics? (My grandmother died of liver cancer.) They never did find a cause for the abnormal liver function tests I had for the next 23 years (I stopped short of, and refused, biopsy). They finally normalized after many years of detox, alternative medicine and nutritional therapies.

Initially, I developed a severe case of mono, with EBV titres about 10 times normal, and abnormal liver function tests. We all know the symptoms of the "flu that never goes away", mine being labeled chronic EBV. I still have the slightly enlarged lymph nodes today, which seem to finally be resolving, after new therapies in the last year. Finding answers and reversing symptoms has been slow over the course of the past 16 years, many times with backward steps, as a new therapy is instituted and I went through yet another layer of detox and "retracing"/healing. If I am beating some of the diseases (and treatments) I saw and feared most as a nurse, then it's been worth it all! Cause I'm sure as heck not doing the Western medical treatments! I am determined to build a new body, naturally!

I was a former figure skater, runner, and horseback rider, and hated being forced into an inactive lifestyle with the "chronic mono" thing. ICU nursing was my calling, so I got a position there. Yep, I was an "adrenaline junkie"! (Nothing more exciting than bringing a dying person back to life, or keeping them from dying in the first place!) Like many others, I was a perfectionist and overachiever whenever possible!

No illness was going to slow me down, so when I got no help or answers from the Western medical field, I resolved to just ignore my symptoms and go on as normally as possible. Former athletes have a high pain tolerance and can push through pain and ignore it. Not such a good thing! (You are right, Mardy about the athletic trauma factor. Just learned that last year, and more importantly, how to reverse the damages!)

I got married and started having a family.

I completed my three year active duty Navy committment, and went to work at the Washington Hospital Center, in DC, in one of the open heart/surgical ICU/shock-trauma units. In 1984, I worked the twelve hour weekend shifts, had two children under two years old, and was breastfeeding. My CFS/FM had started to remind me I wasn't invincible! During the week, I didn't want to get off the couch, and got through the nursing shifts with sodas and candy bars. A friend and co-worker who knew the power of nutrition and healing (thank God for friends sharing!), introduced me to a line of herbal-based supplements, that gave me incredible energy and controlled my symptoms. I began taking things like fish oils, drinking aloe, and using herbal antioxidants/phytonutrients, and lost my excess weight as a side benefit! I didn't care what was wrong with me medically, only that I had found relief! I no longer had a sweet tooth or enjoyed the "treats" and cakes families brought in, nor needed sodas and candy bars. Now I was "supermom"! I had found a healthy way to keep going, while suppressing symptoms and feeling great!

I went on to have four children, with the usual marital struggles and challenges, when my husband was laid off from his work. That was the last straw for a Wounded Warrior, battling the demons of PTSD with alcohol. In 1990, he committed suicide, leaving me with our children, ages eight to 18 months. Issues with child care then forced me to step out in faith and build my home-based business, and retire from hospital nursing.

I found out a few years ago, Environmental Working Group did a study and found ICU nurses have some of the most toxic work environments. I did that for 14 years, so that had unknowingly added to my underlying CFS/FM symptoms. We were usually on our feet for the full shift, too. LOTS of structural stress turning and lifting heavy patients in and out of bed!

After a couple of years of widowhood and business-building, my body gave out under all the stress, and the irritable bowel was so bad I had to wear a diaper to the grocery store. Lab tests showed malabsorption, worse liver function, hypoglycemia and hypothyroidism. I passed out from the low blood sugar. I didn't need a test to know my adrenals were shot! As nothing else showed up in tests, I attributed it all to stress. (One only finds what one is looking for! One has to ask the right questions, do the right tests.) I decided to move West, and watch the sunsets in the desert and watch the flowers grow, while having a safer place to raise the children, than in the DC area. So much for my plans...

I was then hit with the "Universal 2X4", with a car accident resulting in whiplash and soft tissue injuries, when I moved in 1995. It was the proverbial straw for me, and left me bedridden for several months. Finally, after suffering abuse at the hands of the appallingly incompetent MD's, I turned to alternative therapies for answers. My chiropractor told me I'd never get better until I got rid of the military toxins. I had already begun mercury detox, after having my fillings removed, and really didn't have a clue about other stuff that could make me sick. Thus began my education and learning experience of Environmental Medicine, detox, and Integrative therapies.

It's been a long journey of being led to where and who I needed to. Bottom line is, structural, nutritional, organ, spiritual, emotional, hormonal, genetic, Field, and toxic issues all need to be addressed. It's too bad there is no easy, "cook-book" answer for that one-size-fits-all approach in alternative medicine, like we are used to culturally, with Western medicine. I believe "When the student is ready, the teacher appears", as that is exactly what happened, and continues to happen, for me. I have been so Blessed to finally have answers both to cause and solution, and look forward to sharing more details as it evolves and is indicated.

May we all be Blessed on our seeking and healing journey, bringing healing and wholeness to each other and the world!

Brenda Maggio

(There, Mardy, I did as you asked and took time to write. That's why we had wonderful rain all day...Creator made me sit down and do this for you, and I didn't have to water and prepare the garden area myself!)

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Robin Thomas
Title: LumiGRATE Poster - Top of the Totem Pole
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Re: Fibromyalgia/CFS KNOWLEDGE Day 2011 Drawing/Contest. ...

First of all, I want to that I personally have no current symptoms of fibromyalgia.  I very well may have been on that slippery path in the past only to be "saved" by my circumstances.  I had blinding migraines from my early 20s- sometimes constant throughout the month, with only a day or two without one.  I also had mycoplasma infections leading to pneumonia about 4 times each year,  chronic back and shoulder pain, and stress.... MAJOR stress in my life mothering a son with multiple health conditions including diabetes, thyroid disease, brain injury, heavy metal toxicities, anxiety disorder, rages... you name it! 

Here I am, pain-free, mycoplasma-free, maybe one migraine every year or so... the stress is still here, but lessened, as we find new homeopathic ways to help my son. 

I have THOROUGHLY enjoyed reading each one's story with fibromyalgia.  Yenta- I could hug you- you write so genuinely and with such heart.  Mardy, I never had heard your whole story... I agree, if we could only unravel and reknit our lives.. what a difference that would make! Tina, I need to look into one of those magnetic pads for my son, as he does have trouble sleeping.. another idea is the "grounding" pads that are available.  Have you heard of them?  NY Luv Toy - gotta love that name! I'm looking forward to hearing more about you, and hope also that you can find some help here on Lumigrate.  Gary- I want to learn more about adrenal fatigue and thyroid issues.  My son has been on adrenal support for about a  year now, while he has been detoxing excess Cu ( or perhaps wasting it, not being able to utilized it properly) . Years ago he was diagnosed with Hashimoto's  and put on synthroid.  Interestingly, after a year of adrenal-targeted nutritional support, his need for synthroid was cut in half... I'm not familiar with the connection, and would love to learn more.  Clarissa, Analii, Juli and Brenda- your strength of spirit is admirable..each story is uniquely you, and I so appreciate your sharing.  Being able to be part of a community who really cares is just what I have found here on Lumigrate. 

I do believe that fibromyagia is a symptom with many different, compounding causes- as individual as we all are.   Toxins play a huge role, as does trauma, stress, hormone imbalances, adrenal and thyroid function.. who is to say what came first, as everything together comes down upon us?  

I wrote the following last year, after an interview with Cinda Crawford on HealthMatterShow.com  It discusses one part of the fibromyalgia solution. One part that has helped so many under the care of Dr. Ray Strand.  I do believe, in a large part, this is the reason I am relieved of the symptoms I spoke of earlier... but that is, of course, my own experience.   You can find the original post(s) at http://robinthomas.biz 

Oxidative Stress in Fibromyalgia

Fibromyalgia is a chronic condition that causes widespread pain in muscles, tendons, and ligaments. The main symptoms are a dull, aching pain throughout the body; chronic fatigue; and tender points on both sides of the body, above and below the waist.

People also suffer from sleep problems and disorders: from a feeling of exhaustion regardless of the amount of daily sleep to experiencing co-existing conditions, like restless legs syndrome and sleep apnea. Studies show that fibromyalgia sufferers do not experience deep, restorative sleep. In addition to overall muscle pain, people also experience increased pain in certain body parts, such as:

•the back of the head
•between the shoulder blades
•top of the shoulders
•front sides of the neck
•upper chest
•outer elbows
•upper part and side of the hips
•the inner knees
Medical literature shows there is usually one of three different events that can trigger fibromyalgia or chronic fatigue.

•serious illness, such as chronic infections or other prolonged illness.
•physical injury or trauma to your body, particularly to the neck and head area.
•severe or prolonged emotional stress.
Typically, it can be a combination of any of these factors. All three events significantly increase the number of free radicals you produce and can certainly lead to oxidative stress.

Clinical studies support that patients diagnosed with fibromyalgia have significantly lower antioxidative status as compared to those in a control group.

In 2009 and 2010, new studies from Turkey and Spain are corroborating the relationship between oxidative stress and the multiple symptoms of fibromyalgia, including pain. Other studies at Vanderbilt were inconclusive, though they did show a significant correlation with oxidative stress and fatigue.

The research on oxidative stress is important to consider when discussing the chronic conditions of fibromyalgia and chronic fatigue syndrome. 

So, what is oxidative stress? Free radicals can be generated by polluted environment, like pollution in our air, water, or food. They can also be generated by electromagnetic waves, radiation, cigarette smoke, alcohol, stress, and even excessive exercise. Sometimes we can do our best to avoid toxic exposures, but many times we have less control. 
 

A friend of mine once said, “There is only one very simple way to stop oxidative stress in our body … stop breathing.” Of course, oxygen is necessary for life.     Obviously, this is not the solution to preventing exposure to toxins.

How to Reduce Oxidative Stress in Our Lives

1. Practice moderate (not excessive) exercise. For some people, this may mean a 20-minute walk.  If you have fibromyalgia in particular, you want to be careful about not overdoing it. Stick to a mild exercise program every other day because strenuous exercise can increase oxidative stress. For people in the overall population, our bodies adjust, but too much exercise can overwhelm fibromyalgia and set off an exacerbation of the illness.  Dr. Strand recommends his most affected fibromyalgia patients start off by walking 5 minutes at a time and slowly build up to 20-30 minutes every other day.  Mild weight resistance can be useful but never two days in a row. 
2. Prevent excessive stress whenever possible. While we often cannot control the stress that is happening in our lives, we can make a difference in how we react. Effective stress reducing techniques include meditation, prayer, deep breathing, yoga, and biofeedback methods.
3. Reduce environmental toxins, such as pollutants in our air, water, and food. You may not realize that many environmental toxins exist in our water, air, and food, such as pesticides, heavy metals, and PCBs. Toxins kill through oxidative stress mechanisms. Many people with fibromyalgia have multiple chemical sensitivities, so reducing toxicities can make a big impact on their lives.
4. Avoid cigarette smoke. Stopping smoking is a smart, healthful decision, as cigarette smoke is a major source of toxins both for smokers and others affected by second-hand smoke.
5. Balance your exposure to sun. In the past, we have been told to stay out of the sun to avoid the damaging radiation. Now we find that low levels of vitamin D is causing (or exacerbating)  many chronic health conditions, including fibromyalgia. It is important to have your doctor test your blood level of vitamin D: serum levels of 25-hydroxyvitamin D >50 nmol/L is optimal. Supplementation may be necessary. A good way to increase your production of vitamin D is getting 15-20 minutes of midday sun. What a great reason to have your lunch outdoors!  
6. Be proactive to medications and diagnostic, or radiation treatments. It is important to discuss with your physician the pros and cons of any new medications as well as any multiple diagnostic procedures that include radiation. Sometimes we tend to get on what I call the medication rollercoaster:  adding medications to counteract the symptoms and side effects of medications we are already taking. It can end up as a chemical overload, which is not the best situation for those of us with multiple chemical sensitivities.
7. Eat a healthful diet. Some foods to avoid include refined sugar and any foods which spike your blood sugar level. By eating a low-glycemic diet, you can prevent a rollercoaster of blood sugars, which can cause brain fog and the release of stress hormones. One way to enhance your healthful foods is by increasing omega-3 foods, especially for people with fibromyalgia who often suffer from multiple food sensitivities, including wheat and dairy products. Nutritionist Julianne Koritz shows case studies of the improvements by people who eliminated harmful foods and improved their diets.
8. Use high quality supplementsA proper supplementation program can be the most important step to regaining your health. Here’s a paradigm shift: the need for supplementation at optimal levels is crucial to battle oxidative stress. I will address the benefits of supplements in a future post, but it’s important to consider them as effective tools in helping you reduce free radicals and therefore oxidative stress.

Be Well!

Robin

Information for this article was taken from a number of sources:
Dr. Ray Strand’s latest book Bionutrition
http://mayoclinic.com
Redox Rep. 2006 Altindag O, Celik H;11(3):131-5. Department of Physical Medicine and Rehabilitation, Harran University, Sanliurfa,Turkey. Total antioxidant capacity and the severity of the pain in patients with fibromyalgia.
Clin Rheumatol. 2009 Apr;28(4):435-8. Epub 2008 Dec 17. Chung CP, Titova D, Oeser A, Randels M, Avalos I, Milne GL, Morrow JD, Stein CM Department of Medicine, School of Medicine, Vanderbilt University, Nashville, TN 37232-6602, USA. Oxidative stress in fibromyalgia and its relationship to symptoms.
Stress. 2010 Jul 28. [Epub ahead of print] Nazıroğlu M, Akkuş S, Soyupek F, Yalman K, Celik O, Eriş S, Uslusoy GA. Department of Biophysics, Medical Faculty, Suleyman Demirel University, Isparta, Vitamins C and E treatment combined with exercise modulates oxidative stress markers in blood of patients with fibromyalgia: A controlled clinical pilot study.
 

__________________

Robin started contributing to  Lumigrate in August 2010.  "Meet Robin Thomas", a topic in our biographies/vitae forum is at http://www.lumigrate.com/forum/meet-robin-thomas to read all about her journey, which was greatly influenced by the need to help solve her youngest son's significant health challenges. For those who want just the overview here: After working over 22 years in medical research at the University of North Carolina on chronic inflammatory diseases she switched her focus to preventive health in 2004 when she was introduced to USANA Health Sciences.   Robin is passionate about helping others improve their health, have more energy, manage their weight, and improve their skin. 

I love meeting new friends !

LIKE me on Facebook      Connect on LinkedIn

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"I dream of a world free from pain and suffering. I dream of a world free from disease. The USANA family will be the healthiest family on earth. Share my vision. Love life and live it to its fullest in happiness and health."

-Dr. Myron Wentz, Founder and Chairman, USANA Health Sciences

 

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Alice
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Aug 23 2009
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God is good and life is good in spite of difficulties; choices.

 

May 12th is Fibromyalgia Awareness Day.

Believe me, I am aware, I am so aware. On Fibromyalgia Awareness Day I woke up in such pain all over that I couldn't even stand for my clothes to touch me. That's why I have a ready supply of big caftans to wear on days like that, when you can't stand to wear regular clothes because each place they touch you causes much pain. I was really in a flare.

What is fibromyalgia? What is it really? Does anyone really know? Does anyone really know how to treat it or control it? I wonder...... 

This much I can tell you, it hurts, it really, really hurts. It hurts so bad sometimes, you think you can't stand it. Thank the good Lord it is not that way every day. While the muscle and joint pain are always there, some days are so much worse. They call it a flare. As I said above, I had one last week, and I don't know what brought it on.

Sometimes I know what I did to cause a flare and sometimes I don't have a clue as to what triggered it.

Did I sit too long when I went to see a friend? Was it the driving? Maybe it was that banana I ate with my cereal a couple of days ago. My doctor told me not to eat the sweet fruits. Was it the few little plants I set out in the garden? Was it the work I did in the house that caused my back to hurt that led to the flare? Was it because I got upset? Was it because the temperature dropped ? Who knows?

Here are a few things I can tell you about fibromyalgia. It does not stay the same. Mine is much worse than it was 15 years ago. Fifteen years ago I could work full time and still do some other things I wanted to do. Seven years ago I could not make it through a day of work without resting at lunch and reclining on the sofa when I got home until time to go to bed. It was hard to make it to church on Sunday, even it I rested all day Saturday. Now it keeps me from doing so many things I would love to do.

It causes pain, sometimes very severe pain in your muscles, joints, ligaments, tendons and skin. It affects your ability to concentrate and to sleep. I have often wondered which came first the difficulty sleeping or the fibromyalgia. The first thing doctors treat in fibromyalgia patients is insomnia and sleep apnea problems. It seems that fibro makes sleep difficult and lack of sleep makes fibro symptoms worse. What a vicious cycle!

Fibromyalgia causes fatigue. When I have a good day and actually go somewhere and do some things I enjoy, I am completely fatigued when I get home and usually have to sleep for hours to overcome the fatigue from going out. Usually the next day is a bust as well. 

If I know I have something coming up that I wish to do, I have to save up energy. I try not to go much that requires energy so that I will have some energy for the event. When my friends call and ask “Whatcha doin?” and I answer “saving up”, they understand.

Because you never know how you will be physically at any given time, it is hard to make plans. I do not like to tell someone I will do something and then not be able to show up. It is embarrassing and makes them think I am unreliable. So many people with fibro say that they, like me, tend to make fewer and fewer plans.

You never have only fibromyalgia, never! There are associated diseases, illnesses and other syndromes that like to keep company with FMS.

Here are some of the associated disorders: (from a link on Lumigrate.com ... 

  • Irritable Bowel Syndrome

  • Osteoporosis

  • Endometriosis

  • Carpal tunnel wyndrome

  • Sjogren's syndrome

  • Crohn's disease

  • Multiple sclerosis

  • Raynaud's phenomenon

  • Chronic fatigue syndrome
  • Anemia
  • Morton's neuroma
  • Seasonal affective disorder
  • GERD
  • Interstitial cystitis
  • Yeast infections
  • Bruxism
  • Low cytokine levels
  • Hypoglycemia

source: http://www.fibromyalgia-symptoms.org/fibromyalgia_ac.html

Of these I have now or have been affected by nine. 

The source for these did not list TMJ. Many people I know with fibromyalgia have TMJ, including me. That is a painful disorder. Migraine headaches was also not mentioned and nearly everyone I know with fibromyalgia experiences these painful, disabling headaches. In talking with others with fibro, I have noticed that many also have hypothyroidism

Still another associated illness is Chronic Myofascial Pain which causes muscles to form trigger points. The Mayo Clinic says of Chronic Mayofascial Pain SyndromeMyofascial pain syndrome is a chronic form of muscle pain. The pain of myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points can be painful when touched. And the pain can spread throughout the affected muscle. Nearly everyone experiences muscle pain from time to time that generally resolves in a few days. But people with myofascial pain syndrome have muscle pain that persists or worsens. Myofascial pain caused by trigger points has been linked to many types of pain, including headaches, jaw pain, neck pain, low back pain, pelvic pain, and arm and leg pain.”

Mardy has a good post in her blog on fibromyalgia and chronic myofascial pain syndrome and here is the link:

http://www.lumigrate.com/forum/blog-july-2009-fibromyalgia-and-chronic-fatigue-scott-rollins-mds-solving-mystery

Mardy and other professionals have a great information on Lumigrate.com. I have learned a lot from them, from my doctor, and from books. People need to seek information if they are diagnosed with fibromyalgia, to get information that may help and that will grant them a greater understanding of the syndrome.

Exercise is so hard to do when your whole body is in pain, but it is so crucial for anyone with fibro. There are so many benefits to exercising. Sometimes it will be the only thing to help you feel better, physically and mentally.

A good eating plan is also one of the best things you can do for yourself. There are many good sources of the correct eating plan and of foods to avoid on the internet. Go to Lumigrate.com and in the search box enter fibromyalgia diet and you will find several articles here on Lumigrate. Your doctor should also advise you on how to eat to have less flares and less pain.

I don't know how long I have had fibromyalgia. I had been plagued with all over pain for a long, long time. As soon as it had a name, I was diagnosed because I kept getting real muscle injuries from moderate exercise. IE: shin splints and tennis elbow from walking.

Over the years my fibromyalgia has changed. When I was younger, I could function, I could work hard all day if I made sure to exercise my muscles at the end of the day. I used to walk several miles everyday after work to stretch out my muscles after sitting at a desk all day. I could do things with my family and friends, even though the pain was always there, I could still act as if everything was okay. I hid it from everyone for years. I figured since the medical professionals could not fix it, and I could still fake it, no need to tell anyone.

One of the hardest things about fibromyalgia is trying to get people around you to understand or even to believe you. Over the years I have had people give me a hard time because they either do not believe you or understand how bad it can be. I have been mocked by (so called) friends and by health professionals. I am so glad to have found a good fibromyalgia doctor and a good rheumatologist (I also have rheumatoid arthritis).

Medicines for this illness have not impressed me. They may be of great benefit to others but so far, that is not my experience. I think I have been prescribed everything out there for this syndrome and some for other illnesses that they try for people with fibro. Most of them caused bad side effects or a true allergy, so now I am down to just trying to control the pain.

What is fibromyalgia? It is many illnesses together, it is misunderstood, it is extremely painful, it is an illness that affects your mind, body and spirit. It takes away the life you once had, physically, socially, cognitively, and psychologically. The combination of all those things causes depression.

My best advise to you is to learn, do what you can to help yourself, find a good doctor, keep a positive attitude, do things you enjoy, socialize with people you love and who love you, no matter what. Spend time listening to and reading inspiration material, watch media that makes you laugh, love people unconditionally and accept their love. Count your blessings and be thankful for them.

God is good and life is good in spite of difficulties. Choose to make your life meaningful.

__________________

Alice Franklin was raised on a sandy beach in Point Clear, AL and lived along the Gulf Coast from Texas to Alabama in her youth, graduating from Fairhope High School on Mobile Bay. Prior to becoming disabled due to severe spine problems, she worked her way into management and purchasing positions in industrial manufacturing and art industries. She worked her way into Lumigrate unknowingly by impressively writing at Lent 2010 about utilizing her religious and spiritual beliefs with chronic pain/disease management (she has had fibromyalgia and chronic myofascial pain for decades); it turns out she holds the priesthood office of elder in her church and became active again in this office in May 2010 and has been pastor or copastor in previous churches. We are so very proud to have her words and thoughts gracing our 'pages' of this website and look forward to what the future holds for her.

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 2032
User offline. Last seen 45 weeks 21 hours ago.
Drawing will be on those to here BUT... More to come...

I am REALLY pleased and excited about the comaradarie and quality of thought and words that have been gifted to this Topic on Lumigrate.com by everyone you see up to this point!  THANK YOU ALL!

There are others who wanted to contribute to the efforts related to fibromyalgia awareness and education/knowledge, but I had been posting on facebook and am used to most people seeing that and was NOT realizing that the messages I sent through Lumigrate as 'private messages' did not go out in email from there; Yenta had seen hers right away but I'd not realized it was because she saw it in the Inbox she has at Lumigrate for being a registered user.  Who would think an old hippy Yenta --- she's in her 70's for Pete's sakes -- would be the only one to see the 'smoke signal'.  

SO by the time I figured it out this week, many people were with full schedules this week and wanted to contribute something to 'the stream'... so hopefully we see MORE people write beyond this.  I'm wanting to pull from this to make a uniquely Lumigrate 'what is FMS' piece, so if you know of providers who you think would like to contribute information OR people with FMS who are inclined to write and are knowledgeable, please let them know about this link so they can come add to things, and be 'included in the solutions'! 

Nice work! I had something else donated to go into the gifts and want to give that some photos and then we'll look to get a drawing in a way we are 'judged to be fair and square'.  ~~ Mardy

 

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

Dr Marc Spurlock MD's picture
Dr Marc Spurlock MD
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 1 2010
Posts: 72
User offline. Last seen 10 years 34 weeks ago.
Effective Treatment/Planning Leads to Recovery

 In order to deal with these disorders, the underlying conditions must be identified and appropriately treated. Many patients have combinations of hormone depletions, infections (like viruses), sleep disturbances and nutritional depletions. I also recommend the avoidance of sugar due to its propensity to feed Candida, a yeast that may plague our intestinal tract and cause a variety of symtoms.

And I also use a whole food diet with as few chemical additives as possible. So, it is the concerted effort of identifying the underlying causes of fibromyalgia and planning a dedicated, efficacious treatment program that eventually leads to recovery from fibromyalgia. It certainly can be treated successfully.

Thank you for the opportunity to contribute

Wm. Marcus Spurlock, MD

__________________

"There is no one to blame. There is simply taking action!"........Wm. Marcus Spurlock, MD Dr. Spurlock presently works in Dallas, TX treating people with Chronic Fatigue Syndrome, Fibromyalgia, Bio-Identical Hormone Deficiences and Environmental Illnesses. He has been doing this work exclusively for the last 9 years. In the fall of 2011 he opened a new health center; please visit his website, which is where he posts education beyond what is sprinkled at Lumigrate. http://www.renewedvitalitymd.com/ Through a total body approach, the treatments he and his team provide are 85-90% successful in returning patients to their previous health potential. You can see his complete vitae in Lumigrate's forum "About Our Writers" (link: http://www.lumigrate.com/forum/my-vitae-wm-marcus-spurlock-m...), and the majority of his contributions on Lumigrate are in the FMS/CFS/CPain section, where you'll see a forum which includes his name: http://www.lumigrate.com/forums/health-issuesdis-eases/fibro....

Deirdre Rawlings's picture
Deirdre Rawlings
Title: LumiGRATE Poster - Major
Joined: Dec 19 2009
Posts: 43
User offline. Last seen 12 years 50 weeks ago.
Nutrition and Water, Oxygen, Relaxation Essentials via Deirdre

I concur fully with Dr. Spurlock's comments above. Fibromyalgia is multi-faceted  in terms of what triggers it and continues to exacerbate symptoms and flares.  There are numerous systems in the body involved, particularly digestive, endocrine, and immune. The most effective treatments, therefore, are those which include a multi-system integrative approach.

The people most likely to heal themselves fully or to reverse symptoms are those who are most willing to look at and address their lifestyles. This may sound 'simple', and it is, but that does not mean its 'easy'.  Awareness and education is key so finding the right team of wellness experts who understand fibromyalgia and can help fight this battle with you is fundamental to any successful healing protocol or intervention. 

The changes most needed in fighting and winning the battle against fibromyalia includes addressing in depth the diet, nutrition, and nutritional deficiencies, movement or certain forms of exercise and activity, and stress management techniques.

I highly recommend starting with my book, Foods that Help Win the Battle against Fibromyalgia which covers more about all of these areas in depth plus includes 100 delicious, nutritious recipes.

Having a regular dose of deep relaxation therapy is also key to any successful healing strategy.  Successful deep relaxation engages the parasympathetic nervous system, which in turn engages a healing response -- without exception!  In fact, your body must be in a parasympathetic nervous system response, as opposed to the sympathetic nervous system response (also known as 'fight-or-flight' response) in order for any lasting or deep healing to occur.

I have developed a deep relaxation practice called Yoga Nidra with Dr. Deirdre which addresses this area of deep relaxation fully.  You can experience a free session by following this link: tinyurl.com/5uumqlr.

Thanks for all the wonderful healers and healing information on this site.  We are all healers and we all need healing -- every single day!  Thank you Mardy for all the "grate"people you have pulled together on LUMIGRATE -- its such a wonderful resouce for people, including those with fibromyalgia or who simply need support and understanding in dealing with chronic fatigue or related disorders.

I recommend a daily practice of Yoga Nidra and experience for yourself its many healing wonders.

May you be healthy, whole, and revitalized.

Deirdre Rawlings

 

__________________

Deirdre Rawlings, ND, PhD advises clients in her local area of Atlanta, Georgia, USA in person as well as remotely, both individuals and groups/corporations.  While she has a focus on advising those with fibromyalgia or developing symptoms with a focus on nutrition as solution for wellness, her expertise is global and 'wholistic'.  Her complete information can be found at http://www.foodsforfibromyalgia.com/. She is the author of "Foods that Help Win the Battle Against Fibromyalgia"; check out Amazon.com and Barnes and Nobel.

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 2032
User offline. Last seen 45 weeks 21 hours ago.
Re: Fibromyalgia/CFS KNOWLEDGE Day 2011 Drawing/Contest. ...

 I'm adding a comment here so this very popular topic will rise to the top of the list above the Spamming so people can see it if they're looking for this type of information.  If you're wanting to see other posts from this section which are valid, if you click on the icon to go to the very oldest pieces and then go backwards, the valid ones are on page 28, 27, etc, after the hundreds of topics the spammers created that clutter up 1-20something.  Again, apologies.  Tis the reality of the Internet, just like in the 3D world there are vandals, on the Internet there are spammers. 

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 2032
User offline. Last seen 45 weeks 21 hours ago.
Link to the blog about when the contest ended

 Here's a link to my blog about the ending of the contest, and  I go into a big more detail IF anyone is interested.  www.lumigrate.com/blog/fibromyalgia-awareness-contest-ends-today-process-ot-me

And here's the sad details: People scatter as soon as school is out where I live and so I was going to wait to distribute the prizes until they were back; then people elsewhere get off for the summer and were gone or had family issues.  Someone had a crisis who was part of the formative times of my live fibromyalgia education group and in heading out the door to the hospital I grabbed one of the skooshy pillows with the peace sign theme to comfort them.  I DID distribute the local prize to the winner, Analii Cunninham, and talked with the other winners who wanted me to forego doing things belatedly.  So that's the way we roll around here -- you cannot get over fibromyalgia and keep sweating the small stuff -- ask and people will flex.  Pick your battles and fight for the long game.  

But I did learn this from this 'challenge' -- it intimidates providers more than the consumers to write about what they think fibromyalgia is and what to do about it.  But those who want to learn take the opportunity and then have grown from it and have said so themselves.  So I'm glad for our doing the activity as we did.  For 2012, we're going in a different direction and hope to then have this information to refer people to and have them learn from as we move forward in getting even just one media connection following Lumigrate.com for this year's AWARENESS 2012. ~~ Mardy

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

This forum is provided to allow members of Lumigrate to share information and ideas. Any recommendations made by forum members regarding medical treatments, medications, or procedures are not endorsed by Lumigrate or practitioners who serve as Lumigrate's medical experts.

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