Your Stories about Your Fibromyalgia

I was diagnosed with fibromyalgia about 2 years ago.  I'm not exactly certain how long I have had it, but I would venture to guess it wasn't long after I was in a pretty bad car accident.  There always seemed to be something wrong, and the doctors always seemed to look at me like it was all in my head.  There was never any reason behind any of my pain, or my always being tired.  Surprisingly, a Dr. at Kaiser diagnosed me.  They had me attend a fibro class that was SUPPOSED to be informative and helpful.  The only thing I found it to be was a big waste of my time.  At least they attempted, and at least they acknowledge  that it exists.  Anyway....I recently joined facebook and  visited a fibro blog, not long after that I received an email from Lumigrate.  I have been chatting with Mardy almost daily and she has given me some really great suggestions for some things to do to help with the pain and fatigue.  It turns out we grew up in the same town and went to the same school and everything.  She too has fibromyalgia and it has made it much easier for me to discuss the issues that i have had.  I am the type of person who can talk to a total stranger walking down the street.  But,  when it comes to discussing fibromyalgia it just doesn't seem to be something that I am so comfortable with.  I guess I am scared that I will get the same reactions as with most of the doctors over the years.  That since they can't see the illness then how can it exist?  I even feel a little awkward talking to people on line you have fibro for some reason.  I guess I feel like nobody else is JUST like me or something.  I'm not certain.  Anyway....Lumigrate has been wonderful for me so far.  I'm finally going to start trying to do something to help myself now instead of ignoring it and hoping that it isn't real and it will go away.    I look forward to watching some of the on line seminars that they offer when I have some time.    Please give them a chance, even if you're scared.  If I can do it you can to.    And thanks to Mardy for all of her advice. 

I'm going to start most recently and work backwards because I originally wrote this the night of Fibromyalgia Awareness Day 2009 when all the activity on facebook had people telling their stories and I though it would be great addition to Lumigrate.com's forum area.  It was just a really good day for people with fibromyalgia to come together for a day and really get the word out.  It was a good day for those without fibromyalgia as well because there are solutions to fibromyalgia and professionals who believe they know what is causing it and what to do about it and every person who gets turned onto that information can help spread the word and we'll all benefit from having more productive people and less health care costs associated with it to our insurance companies, government programs and private pocketbooks.   (Have you ever said 'I could take a really nice little getaway with the money I'm spending on this every (day/week/month/year)?'

I'm priviledged to have moved to Grand Junction five years ago because it put me in the path of progressive medical providers who thought the way I did about things but knew WAY more than I did, and it is also a priviledge to be recording their seminars and making them available on a website to help others.  I hope that people recognize that complete education in topics is important and that the investment in time and a small amount of money to learn is an option that really might pay off for them.  "We've only just begun" and are working to develop more content that will be less expensive and timely to produce, find other revenue sources to offset the costs to the customer, and put high quality, efficient information in the blog that will serve to start routing people to the answers they are seeking. 

I was providing OT services in a large PT practice in a new, great medical building in Grand Junction and my first patient of 2006 was a lovely woman with fibromyalgia named Helen (name used with permission, thank you! -- you can see her on my personal facebook photos -- Mardy Ross, I'm easy to find with the unique name) or here's the link: www.facebook.com/mardy ross [7].  Helen's massage therapist somehow knew about me and suggested she see me and Helen followed through with her physician to get orders for OT evaluation and treatment.  Ironically we had the same doctor, so here I was treating a patient on orders from a doctor that I go to! That was a first!  I suggested we get orders for her to be seen by Dr. Chris Young, a psychologist who specializes in pain management as well as mild traumatic brain injuries (which is also a speciality of mine ... neuro/ stroke rehab., etc), as well as a unique PT who was doing great things with people with FMS. (His name is Thad Harlow, MPT, and he just went into private practice here in Grand Junction so we wish him well and hope he will write and record for us sometime! He is a brilliant communicator and extremely knowledgeable.) 

She did great!  We had some others referred to us as well, so another PT at the clinic who was very patient and capable with the 'unique' needs of people with fibromyalgia started seeing them as well --- and they all did really well.  That clinic was perfect because they had PTs that specialized in all the things that can go wrong with FMS, such as balance, TMJ and incontence.   So Dr. Young and I met an hour a week for a whole season and brainstormed a layout of how we could take a group and educate them about fibromyalgia and move them forward much less expensivetly than working with us individually.  Many people do not have insurance or their copays add up and are prohibitive.  So we started a fibromyalgia forum.... it was NOT a support group, but an educational forum. We invited our patients to come meet and give input and they would NOT come because they thought it was a support group and they had tried that and didn't want it.  (And I did go to the support group and present one night and it was a wonderful group of women and they were bringing in educators such as myself and Dr. Lepisto at that point).  

We wanted providers to learn from participants, participants to learn from each other, etc.  One day, one of the members brought in a book and said 'I want you to read this' and I took it and put it on my desk (I had a pretty full hand therapy caseload with a fabulous OT assistant, plus my neuro patients so I was busy!).  About a week later, I was on hold on the phone and picked up the book and opened it and it was fabulous, so I looked to see who wrote it.  Milton Hammerly, MD -- my doctor in Denver when I was first and OTR and got sick (that infection/bronchitis thing we get with FMS when everyone else just gets a cold because our immune system is out of whack).  He was a doctor I read about in the Denver paper when I first was an OT and moved there -- he literally allowed me to have my career I went to school for with the Myer's Cocktails he got me doing (I.V. nutrition).   I would literally not be sitting here at this moment writing about this on Lumigrate if I had not encountered him in early 1997, and so interesting how half a state away a patient brings me a book in 2007 that he has written about fibromyalgia.  Hmmm...

This is how strongly I feel about Myers Cocktails: I was asked to go out of town for two weeks to open a contract here in Grand Junction in 1997 and I literally would not go unless I could find someone to give me Myers, which I did -- and that ended up being the doctor who diagnosed my FMS and who 10 years later signed the order for the patient who graced my clinic on the first day of 2006.  Hmmmmmmm .... again, things coming around in an interesting way, would you say?  

I encourage you to look into Myers Cocktails.  They are harder to obtain now because there is a $50,000 fee pharmacies have to pay in order to obtain vitamin b liquid, as I understand from a reliable source who looked into providing them since we had 20 women that wanted to have them coming to our group.  I learned from Dr. Rollins' fibromyalgia seminar (which I wrote about in a blog in the end of July) that there is a problem with the mitochondria (cells) uptaking vitamins, minerals, sugar (energy) in people with FMS and so you can have a normal amount in your blood and it still doesn't get into the cells so you have to get a higher saturation with the IV.    Also, with fibromyalgia, if your intestines aren't working right you can't get the right stuff out of the foods and supplements, so the way to get that turned around is to jump start things with the I.V. nutrition.  I needed two a week for a couple of months then went to once a week, every other week, once a month and now I go as needed and I haven't had one in months and months (this is going to sound like self promotion, but I wanted to see how it worked for people to order the supplements Dr. Rollins' 'Supplements' video page routes people to (on Amazon.com). 

Unfortunately, insurance does not pay for supplenents nor Myer's Cocktails.  They only cost $50 but sometimes the doctors you can get them through are only private pay and you have a $300 visit or so before you can get them. Newsweek had an article about them many years ago they would catch on but they haven't.  I hope our health care reform will include some revamping of the systems that have caused these helpful and inexpensive solutions to be our of reach for most people.  (So VOTE, write your congressman and senators, participate in health care discussions and become active! Write your appeals letters to your insurance.  Call and find out who to talk with or drop a letter and information to which might help them change policies.  Acupuncture is now being included by some and chiropractics has for a long time and didn't used to be.  If you need information to substantiate your request, ask a local practitioner and let them know you are advocating on their behalf.  There might be petitions they know of or other actions you can be part of to help make the change that will help YOU eventually, and those in your footprints.   But please please please get the facts and be well educated first!)

The Law of the Lightpost: Dr. Young's seminar on Health Management (FREE to download on Lumigrate.com) talks about the 'Law of the Lampost and the Law of the Hammer'.  (Light/Lumin is part of the word Lumigrate as a result, the other part is from 'Integrate').  Well, I have shone my light to figure out what FMS was caused by in all directions over the years and it took the longest time for me to realize IT IS NOT JUST ONE REASON.  I had figured that out a while before I saw Dr. Christopher Lepisto's brilliant  "Chronic Illness: Full Barrel Syndrome" last year, but his graphic analogy was so great at representing it, I really 'got it'.  (Full Barrel is also free on Lumigrate.com).   I have done a LOT of things and many of them have helped a great deal, some which have not helped at all, a few have made things worse.  But overall I have gotten better.  Much better.  Dr. Rollins sees me running around on seminar nights or other busy times and it's evening and he'll joke and say 'you don't have fibromyalgia' but you know, I'm getting close to the day when it might really be true!  I skied this past winter for the first time since being diagnosed! And I've gotten back into hiking in the past year too and so far haven't been the first one to day 'let's turn around'.  Well, except when there was lighning at the top. 

What is fibromyalgia? Just when you think you know something and you have your light really shining on it, things you know will change and then you have to keep shining your light, but right now, I believe fibromyalgia is a complex condition that has its roots in some sort of brain malfunction that possible initially is due to such a slight head injury we don't even know we had one .. the most minor of concussions.  For most people it starts as an accumulation of stress that causes adrenalin to have to go crazy and from there a chemical cascade can happen that ends up being a catch-22 of sorts that involves everything just getting out of whack.  I noticed in our fibromyalgia forum that most of us had been hypervigilant as kids -- agressive housekeepers (which came up because we are not able to do that anymore and it drives us nuts so it comes up in meetings). Dr. Young's work right now is centered on the effects of stress in childhood changing our brains much as it has been proven in studies about PTSD -- some structures of the brain actually change shape and size when trauma occurs.  Our bodies have an amazing ability to compensate so we get away with it for a while and then it can't  accommodate anymore and 'our barrel spills over' into the chronic illness of fibromyalgia. But the GOOD news is you can then look at all those factors and work to undo it and have chronic wellness and a barrel that is not full hopefully.... able to accommodate and adjust.   

Look at the commonalities among us!  

Hormones: 

Hypothyroidism.  Gynecologic problems (which often stem from progesterone being low and estrogen "dominance" resulting) ...  Progesterone is a calming hormone and is important for sleep, which is the hallmark problem with fibromyalgia.  Isn't it pretty easy to see why more people with FMS are women and particularly in middle age? It seems like more and more stories are showing up with younger women -- I had several young women as patience and their histories included pharmaceutical birth control as treatment for medical issues.  I know that my previous physicians were treating me using birth control pills and my current knowledge leads me to believe that contributed to my problems and bioidentical hormones would have been the right thing to do instead.  I was actually on bioidenticals but my insurance would not pay for them and when the Medicare funding crisis happened and I had a 33% cut in pay, I stopped doing all the alternative things and went with my good healh insurance benefits and my health unwound (I also had to work and drive an average of 60 hours a week and help with family obligations on weekends.   

Food allergies -- do people with FMS have more occurrence of food allergies (as in IgG reactions (immunoglobulin G) ... refer to Dr. Lepsito's seminar on Food Allergies on Lumigrate.com for more information)(and the answer is yes), or do we just end up with chronic illness so we are now looking for things and we get tested.  I'm allergic to wheat, dairy and eggs but I didn't seek allergy testing until I wasn't well... I had muscle weakness that kept me from walking up the steps to my house after riding my bicycle home (uphill) and was just fine.  I was fatigued, my muscles were 'tight' in my upper back.  I had lots of neck problems start and migraines.  I was having night sweats and my sleep was interrupted.  That is why I love Dr. Lepisto's barrel analogy -- it shows how I put up with school stress, fumes from cadavers, having a lot of heavy metals in my body for a while --  and my body was able to compensate for the food allergy until the 'barrel got full'...

I was in OT school and not only was it stressful (I have a learning disability and the early coarsework is pre-med physiology, anatomy and neuro), I had to do cadaver anatomy in the summer (so twice as long every day) and they didn't provide us with education about vapor remediation with masks for the very toxic chemicals.  I'd already had chronic fatigue syndrome and fully recovered, but on that episode in my late 20s, I also was 'cuspy' for my whole 20s, since receiveing a vaccine which I later found out was the biggest class action lawsuit at the time because it contained thimerosol.  In 5% of adults who received it, they became chronically ill.  I started having an echo with loud noises and went to an ENT within two months of the vaccine when I reserached it years ago.  I then started having headaches and fatigue at that time, gained 20#.  Interestingly, I figured that I could lose weight by eating meat and vegetables only and I lost 20# and felt wonderful -- hmmm I wasn't having any wheat and dairy!  Didn't know I was allergic though.

A series of personal and professional stressors put my body over the edge in 1988/9, and I was able to figure out how to remove some of the 'stuff' in my barrel at that time in order to get out of chronic fatigue.  I thought I was going to be fine forever -- I had NO idea what was ahead in 1995 with fibromyalgia.  And the 14 years since.  If there is a connection to head injury, then my being dropped at 8 months of age might be a factor.  I know the chiropractor I go to now has some 'space age' scanner that picked up that I had damage to the whole right side of my body.  "When did your injury occur?"  .. I've never had an injury to the right side of my body as I thought back and back....  except I didn't remember being 8 months!  When I told him what happened, he said 'that would do it', and I did a lot of chiropractics about two years ago and it helped a lot.  I go as needed now and I haven't had to go for a long time.  I think the effects of hormones (which I now supplement) on tissues such as cartilege has really made a difference.  I've been on them about three years now.  In Denver there is an amazing optometrist who is coming out with a new book, named Lynn Hellerstein, and I went to her when I moved there.  She specializes in vision therapy such as is needed after head injuries. She examined me and then looked back at my intake paperwork and said 'what is the cause of your head injury, I don't see it here'.   The way my visual perceptual system acts is indicative of a head injury, so I did vision therapy and when I read I wear glasses with bifocals and prisms to reduce the stress on my brain (and make me faster, etc.)  But if you think about stress being a cause of fibromylagia, it is more stressed than it would otherwise be every time I'm looking at something.   Who knows what has lead to what and there is a LOT to it to figure out but I do consider myself fortunate to have encountered so many solutions and hope my sharing them helps others. 

The barrel was full and now I'm trying to bail stuff out so I can be well again. 

I whole heartedly believe my success to date has been due to: 

Sleep (sleep disorder fits right in with the whole hormone thing, don't you think?  Also kinda fits with the mild head injury theory as well).  I bought a really good bed and committed to being in it 9 hours a night and I only recently have realized that I maybe can stop worrying if my sleep meds aren't keeping me knocked out long enough.  I'm better, it just is the way that I am and perhaps I need to spend those extra hours doing something unstressful or enjoyable (or work on better nutritional habits). 

Exercise (but I used to start my patients with about five to ten minutes or so with them monitoring fatigue and taking a break after 2 minutes at the most).  A good PT or athletic trainer can be a great help.  I used to be a gym rat and now I just walk and try to stay active daily.   Dumbells (light!), yoga, therapy balls, and Tai Chi are great and if you can get in a warm pool that is the best!

Nutrition (Dr. Lepisto has helped me with this -- and it's a core piece of his Detox and Cleanse seminar as well as Dr. Rollins' Supplements and Disease Prevention).  Also as a reference you can go to the area about each seminar and there are products suggested on Amazon.com that can get you going in the right direction ... as a free service.  Supplements: get the right kinds, I learned that the hard way and lost a lot of time because I didn't do my homework and went to a well known chain that sells nothing but 'nutrition' stuff, but 'generally' I did not know they didin't have very good products -- at least back then, maybe now they are different.   (Dr. Rollins seminar on Supplements and Disease Prevention is a great source for people with or without FMS and Lumigrate routes you in the Products area to Amazon and products that are our top choices, but there are many good supplements and in his seminar, Dr. Rollins says how he goes about deciding which he recommends to people -- there is a LOT with quality and potency and etc.).    

Spiritual connectedness.  I don't know how I would have gotten through the past 10 years had I not it.  Modern science knows that the brain is 'plastic' and I believe that meditation and breathing with focus on healing the brain and the body will actually impact changes.  If stress could make it deteriorate, then good can make it rebuild it seems! I hope I am right about that.  I highly recommend the movie 'What the #$% (bleep) Do We Know' if you are interested in that type of thinking.   

Stress management/Happiness.  If you want to see a guru in this department, look at Dr. Paula King.  I was lucky enough to get to ski this winter on a day she was up too and she truly is levels above me in this department but I hope to some day be as good (and maybe she'll also ski as well as I do as she is doing "awesome" for not skiing much!).  She's going to do more for Lumigrate on PTSD and stress management in the future and Dr. Young's doing something about the neuroscience of trauma in childhood and it's connection to chronic illness and particularly chronic pain and shorter lifespan in adulthood.  It is difficult to have happy people around you when you are isolated because you are sick, but there are new fascinating studies about the effects of happiness even on people two degrees away from each other.  I am NOT the person I was before I was in chronic pain -- I don't tolerate noise, bad behavior, nor sitting well, but I realized I needed to not isolate after completely unplugging a few years back because my social life as I knew it was overwhelming to me.  So it's smaller now but it's good and if it's not 'great' it's because I'm not doing things to make it so. Or I need to adjust my concept of 'great' to match my life!?  It's really easy to compare now to 'how it was' and it likely would work better to focus on today and making it good and going from there to see where it goes.   I'm pretty focused with Lumigrate right now and certainly enjoy the connections it brings me and I do make an effort to "get away from it" and balance.   I'm hoping that someday I'll write about have a fullfilling and beneficial primary relationship in my life again, because I am almost well enough again to be capable in that regard and believe THAT will put me over the top to full wellness!

Medications and Western medicine.  I didn't do my homework and it was my massage therapist who noticed the mass on my neck when my thyroid finally got so 'hypo' that it finally (after years and years of 'normal' on TSH testing) indicated there was a problem.  Had I done my homework, I would have known what tests to ask my doctor to run, and I might have recognized the symptoms and not dismissed it as 'fatigue'.  I made the mistake of believing test results instead of listening to myself and then doing some research.  There are many doctors who know about the more progressive protocol for testing but it is very hard to get physicians updated as they have so many topics to cover and limited time.   One in 8 women I believe I have heard, has hypothyroidims, so it's a seminar that is included on Lumigrate and Dr. Rollins is masterful at explaining it and I hope many people let their doctors know about it.  I also take a lot of other medications in addition to Armour thyroid .. muscle relaxants, sleep aid, neurontin as well as OTC things such as guaffenesen (sp?).  I'm constantly trying to reduce these, and lately I've felt like something can be reduced, so that's good! 

Bodywork: That neck thing so many of us have:  I've found great relief from COMPETENT advise about the herniated disks in my neck.  Nerve root injections allowed me to get through a couple of years after being kinda whacked in a flukey thing with a car a few years back.  But I also got a second opinion because I wasn't really sure if my neck could handle it if I fell skiing and my first day I had gotten my confidence up and was skiing with someone who was about at my level but had been skiing a lot recently and I fell going pretty darned fast. (you can only imagine what was going through my mind as I was going down and coming to a stop)  And you know ... I bounced just like when I was young!  I didn't break, I didn't bruise (I had problems with bruising easily for a while).  Back on my feet!  Competent PTs have shown me exercises and taught me what the limitations are (such as not flexing my neck more than 45 degrees as IL have a lot of herniated disks there).   Competent massage therapists and aestheticians have brought me great relief and helped in the times of the hormone dysfunction that my skin was really messed up.  (Which is better now as well.)

Pick your team .. be YOUr team captain! Advocate for yourself.  Develop self-efficacy ...  The first doctor I went to when I moved to Junction told me 'it's calories in, calories out, you know that' when I was concerned with the TON of weight I gained very rapidly (when it was hypothyroidism but the doctors I had then were only running TSH).  So I found another one (by contacting the local compounding pharmacy and asking who knew about hormones in a progressive way).  The allergist scratch tested me for IgE when I had asked when I made the appointment for IgG testing... I figured I'd see what he found and he found nothing and I knew I had allergy things going on so I kept asking around to find someone in town who could do the testing I was looking for.  I was very grateful when I met Dr. Rollins and he said 'I don't know if you want to do this, but I've started doing this IgG testing that a naturopath in town, Dr. Christopher Lepisto, has turned me onto'.   They went on to open the Integrative Medicine Center of Western Colorado, where the seminar material I bring to you on Lumigrate is presented live to their loyal local following.  

I have a chiropractor and a PT or 3 (one is just for when I get vertigo, for instance).   Psychologists such as Chris Young who specializes in pain can really help you understand why you are the way you are and help you get where you want to be (Strategies for Lasting Change by Dr. Paula King is a GREAT substitute if you don't have one or if you do, $20 is probably less than a session or copay!  Or going to the movie -- I rarely go so was astounded recently that it was $20 for a ticket and a drink and popcorn per person!)  And we look forward to future information in development about chronic pain by Dr. Young and Dr. King and in different formats which are faster, more portable, easier for you, and less expensive.   

Manage YOUR Team and YOUR Health:  It's your occupation... anything that occupies your time is an 'occupation', how you make your living is your 'vocation'.  When you go to the lab, ask them to send YOU a copy.  Same with radiology.  Keep your pharmacy information ... put all of this together in a notebook.  Get pertinent records from your doctors and therapists.  That's why YOU are the middle of the model on our homepage -- Dr. Young drew out that model one day when we were meeting about our Fibromyalgia Forum based on what I had talked with him about after meeting with a rheumatologist about what he envisioned patients needing (which was to see each provider on a big team regularly) and he said 'I need someone who can see fibromyalgia patients and not many therapists know what to do with them' and he was right, most PTs don't know how very gradually they need to start with FMS patients and they flare them up.  So patients don't go back and then the therapist doesn't learn, so they do the same thing with the next person.   I recommend you advocate for your needs!  Don't let anyone do something to you that you don't think is right.  Ask questions.  Realize your provider's time limitations as well and come organized with a list and something to record the information with or take notes quickly. Take them a card or a treat perhaps --  as I think about what I have written about how much my brilliant providers have helped me with and how hard I know they work -- Dr. Rollins gets up at 5 am and is putting presentations together and studying the progressive things continually coming out. 

And Learn, Learn, Learn! 

My biggest advise and I kind of coined this term: Make Fibromyalgia Your Friend.  I don't think the 'Fight' word works so well with something like FMS... I like to think of fibromyalgia as something I have with me all the time, and I'm just going to try to outsmart it.  Like playing a game of tennis against a friend -- you might win, but I'm going to really play hard and smart and I think I'll win!  I'd like to think we're not going to be 'life-long friends' but if that is the case then I'd better learn to accept it instead of be angry at it or all negative ways it has impacted my life. 

Another thought: If every day was like today, would I want to have a lot of todays?  If the answer is 'No', that's when I really rolled up my sleeves and applied myself to finding another facet I could learn about and work on.  When I turned 45 I literally thought I was going in a direction that I might not be alive at 50 and I am sorry to say I really was welcoming not living much longer because every day was just not good, but when the vitamin and mineral I.Vs I was getting weren't boosting my energy and my veins were literally not allowing IVs ....  and it was me and the very ill and dying patients taking multiple 'sticks' to get a quart of IV into me, I truly realized that 'this isn't just about being tired and in pain -- this could kill you'.  It's kind of like someone with a substance addiction having to hit bottom and have a wake up call -- that was mine.  So I just really applied myself (and kept getting the IVs and then one day it was all fine AND my energy came back ... I will never forget it).   I have continued to look into different things, such as being tested for heavy metals (I was extremely high in mercury and very high in lead and a couple of others) and have been doing some detoxification and cleansing type things, got the amalgam fillings removed, blah blah blah), and I encourage you to do the same.  

I hope my word here have helped you know more about what has worked for me, and I hope that Lumigrate can positively influence not just your health but those around you with other conditions or wanting and working to have chronic wellness!   Drop me an email here at the website if you'd like, or join us on facebook (www.facebook.com/lumigrate [8]). 

Mardy Ross, Lumigrate Creator

  Alot of people know almost to the exact minute when their Fibromyalgia began.  I do not..It seems as though I have had my symptoms for a very long time. I, sadly have gone through my share of traumas' and a spine surgery too. Any of these could have caused it. Does it really matter? Not to me. I know for the last 18 months, that I have been in a battle not to let myself go down a deep dark hole ,called depression and give in to this horrible pain that all of us get so, so tired of dealing with. I have tried everything from diet and supplements  and walking three miles a day to what I am on now , which is just about everything and a patch I wear for 3 days.

I know I had a great job, a social life, friends and could clean my own home before the worst of the Fibromyalgia symptoms started. I know that I had a husband and children that just could not understand how much pain I was in, how sad I was or how much I needed them and now they are gone too. I am supposed to write what Awareness Day meant to me. Sadly, I'm not positive it made a difference outside "our world." I hope so. I do know this. It did connect us with others across the world that are waiting for a cure as one.  On awareness Day, My heart was full. I really do love to help others. It is part of who I am. On that day , I realized how much that cause had helped me. those beautiful people , are hurting themselves, helped pull me and continue to do so, with their aching bodies into the sunshine and gave me love every day.Many of of talk about how when god gives you such hardships , it is up to you to find the lesson. I found the lesson. I continue to find lessons every day. I was given epilepsy as a child and did do some good things with that lesson, but that was just the practice round. I have so much work ahead of myself, but with the love of this cause and the Fibromyalgia cause internationally, anything really is possible. I am actually thinking about going on a trip that I had put completely out of my mind. It is there that I will go to find my true self again, it will be just me, the monks and the sky of ocean blue.

Well this is cool, I can finally share my story, since I can not get my story on the NFA website, since I can not afford a membership. 

This will just be a quick summary though...as I have started writing a book, The Long Road Ahead, about my fibromyalgia.  The book is 30 pages so far, but rather disturbing, so I am not sure how much of it I want to share.  By disturbing I mean the last 9 years have been seriously rough...trying to function and figure out what in the heck is wrong with me.   It has taken me 9 years to get a complete diagnosis.  

Anyway I was a normal teenager - honors student, athletic, and had the whole world ahead of me to accomplish my dream of becoming an Architect.  So I was 19 years old, in college, and one night, January 2001, I was in a terrible accident.  This would be the trauma that triggered my chronic fatigue/fibromyalgia.  I was walking across the street and was hit by a drunk driver.  I remember everything, which the details are in chapter 1 of my book.  I just had a broken superior rambus pubic bone, a sprained foot, and 20 stitches over my eyebrow.  A few days later I could not move at all, but I forced myself to sit up and stand up.  I was not going to be in a wheelchair for the rest of my life, I had things to do.  I refused to use a wheelchair and only used crutches.  So this was fine, life went back to normal somewhat.  

Between 2002 - 2006 was up and down, some good things, some bad things.  The doctors diagnosises were either you are fine or you are crazy.   However skipping along, at the end of 2006 after finally finding a decent doctor, I had an L5 nerve inflammed in my back.  That explained the back and leg pain I was having.  I was walking around with a messed up nerve for 5 years!  Can you believe that?  Well that was finally fixed by some steriod shots.  I had also started water pilates earlier in 2006, and that was helping some.  

So 2007, now 26, almost 7 years later I am closer to the diagnosis.  2007 was not too bad, but I was still tired and having pain.  So my doctors had added a neurologist.  Well she said I had fibromyalgia, and just told me to take cymbalta.  I did not really like this doctor.  I was like what the heck is fibromyalgia.   

Now we are up to the present, this past year (end of 2008 - 2009) has been terrible.  I will that drama and stress out for now.  Although I finally understand what fibromyalgia is a little better, but still reading.  Well, I finally tried the cymbalta, but had a weird reaction to it.  So I can not take much more medicine than I already take, NSAID, muscle relaxer, and allergy medicine.  Cymbalta and Lyrica are definitely a NO.  Currently I am awaiting my appointment with a rheumatologist.  He is not going to be able to tell me anything new that I don't already know, but at least I will have an official diagnosis.  I'm thinking it is primarily chronic fatigue and secondarily fibromyalgia.  The chronic fatigue would explain the weird reactions to medicine.   I have found that water pilates works the best as for treatment options.  

Perhaps someday I'll put the whole book out there.  But for now you can check my blog: http://yawellness.blogspot.com [11].      

I distinctly remember the first time I went to a doctor for "unexplained pain" and was told (actually, my mother was told) that I needed a psychiatrist.  This was in 1974. I was only 19, and had spent several weeks in bed with horrible, grinding stomach pain and generalized fatigue and "achiness".  Hospital tests were ordered.  There was nothing wrong with me, of course.  Maybe a cyst?  Nope.  Polyps?  Nope.  Blood tests came back negative.  Barium scans showed nothing.  It was "all in my head".  Eventually, I recovered, but succeeding years brought different pains, different types of "unexplained" and prolonged illnesses, which went along with extreme (and unusual) tenderness and exhaustion.  Usually, the result of extreme stress.  Of course, this experience put me off doctors for years.  Looking back, I realize that, even if I was not experiencing early symptoms at that time, the experience made me think that I was a bit of a hypochondriac.  I mean, I knew I had "female problems", but this went beyond that.  I've undoubtedly had FM for several decades, but just kind of "sucked it up" and lived with it as best I could.  Putting a name to it has been the single largest contributor to taking control of my health.  It is something I have, as much a part of me as, say, spina bifida (which I also have in a mild form).  But now I KNOW.  And knowledge is power.  I'm not crazy now.  I wasn't crazy then. 

When I read the experiences of others, I realize I was not alone.  Far from it.  For years doctors have been telling patients--especially women--that their symptoms were "all in their heads".  Thank you, Dr. Freud.  Fortunately, that is beginning to change.  Doctors are becoming more open to the existence of illness that cannot be determined with a specific test (or tests), as well as integrative approaches to treatments.  But not as many as there should be.  Not as many as there WILL be.

I was only diagnosed a year ago after an extended period (6 years) of excruciating pain, tenderness, and numbness, debilitating tiredness, severe (and prolonged) intestinal problems, and depression.  To be touched was painful.  To sleep was impossible.  Depression was inevitable.  All of these symptoms, again, followed a period of extreme emotional stress:  relocation, a divorce, remarriage--all instigated by me, but stress, nonetheless.  And, all of the above instigated because of a suspicion that the stress of my marriage (my husband told me repeatedly that I was crazy and if I tried to leave, he would have me committed) had been causing "flare-ups" all along.  Trying to correct the stress caused more stress.  Thus, more pain.  Pain that I managed through vitamins, herbs, and education (I owned a health food store for years).  When my children left, so did I.  But, in leaving, I also left my support system:  health care providers who were also friends (allopthic and naturpathic), the newest breakthrough information in supplements, my parents.  I was on my own, healthwise and otherwise.

Entering a much-coveted PhD program, I found my ability to concentrate was "clouded over".  I literally couldn't function.  I could not figure out what was wrong.  Years earlier, I had completed my Master's program with help from Prozac, but I completed it without my mind being clouded.  Tired, yes.  Stressed, certainly.  But, I could think.  I could reason.  I could write.  But, not this time.  I could not handle the thinking load, and ended up leaving the program and teaching high school.  More stress.  I remarried (good stress, but stress).  I gained 60 pounds in a year.  We moved 1500 miles.  Within a year,  my husband's job was no more and we were saddled with a 4000 sq. foot home and no money in a strange area in which we knew no one.  He found another position.  The house sold.  We moved again.  This time, we rented, but our landlady became ill and had to sell.  We moved again (this is 6 moves in as many years).  The house we ended up with needed painting big time.  I thought I could do it.  I was wrong.  The pain became immobilizing. I cried constantly. It was at this point I went to a new physician.  He sent me immediately to all sorts of specialists, including a rheumatologist--an expert in the field of fibromyalgia.  It didn't take him long.  He took my history.  He started poking.  Almost all of the "trigger points" were a hit.  He ordered tests to rule out other options, but there was no arthritis.  It was, in his opinion, most assuredly, fibromyalgia.

It has been a very long year, but I feel the beginning of my control was with the name put to my illness.  I try to look at the up side.  I was a Type A overachieving perfectionist.  I am now forced to be a calmer person.  FM probably has saved me from having an early heart attack.  I am more relaxed because I have to be.  I've learned how to manage stress.  I've learned that I don't have to compete.  I just have to be me.  Me with Fibromyalgia is probably a more likeable me than the me before.  I am blessed to have a supportive husband, supportive parents, mother-in-law, and sister, and supportive children (albeit far, far away).  My blessings now exceed the limitations of my illness and may be an indirect result of that illness.  It changed my life. I think it makes me a better person. 

My story is my story.  Every person has a different experience.  We are all so unique.  But, I wanted to share.  Thank you for letting me do so.

What beautifully written contributions!  I particularly appreciated the commonalities of stories and also wanting to place it for others' benefit, as these are people who are really managing it well and obviously are working to continue making improvements.  The appreciation for what fibromyalgia has brought in terms of being the 'teacher' to growth and change was very insightful and wise.   Thank you! 

First I would like to thank you for inviting me, I really apreciate it.

I really cannot say when my symtoms first began but I know when they were at a point I could no longer ignore them. I was 35 and working 60+ hours a week on second shift color correcting and correcting professional photography. During the day I worked out at least an hour (kick boxing, power yoga, aerobics, etc) and I also had three children aged 13, 14, and 15 then. I remember I was fatigued,  tired off and on but ignored it. Then I started getting weak - I noticed the weakness in my legs when going down stairs and such. I thought maybe it was just getting older and worked out more. Then I started 'vibrating'. It was little intermittent buzzing and I thought I was going crazy as it only lasted a few seconds. Then one morning I woke up and could not see out of part of my left eye. There was like a veil in the way. I went to the eye doctor and they saw nothing and sent me to an eye specialist that said it was nothing. I went home and went to bed. The next morning I got up and most of the sight in my left eye was gone. This time we went to the hospital and they did a CT scan and nothing so they said maybe I had a headache and sent me home. Each day it got worse and my neighbor had a relative that worked at a different hospital and got me in to see an opto-neuro that afternoon. They said I had optic neuritis and needed to be checked out for MS. Then over the course of the next month and a half, my condition worsened.

I lost the ability to walk normally. I walk like the scarecrow from the Wizard of Oz, legs like rubber or slinkies : ) I also started having excrucitaing pain and myoclonus in the left shoulder, sever muscle spasms, tremors, mind dullness, etc etc. The neurologist I was seeing gave me a spinal tap, the wrong way, the worst pain I have ever experienced, and multiple MRI's and only found lesions on the optic nerves. He told me it was all in my head and would not see me and would schedule me with the nurses and one nurse finally told me that my situation was so out of the ordinary and unusual that he did not want to bother with it.

I went to the next doctor and she thought Parkinson but that was all negative, after $5,000+ of tests. I also peeked in my files and my previous neuro had sent her a letter that stated I was faking, all in my head, attention seeking which is exactly what she told me that visit. I left and made a new apointment with another doctor and did not have any records sent.

She was great - my regualr MD was trying to help but did not have a clue. She listened well, asked many questions. During this time I had moved to days on my job down to art time. My eyesight gradually got worse after getting better from intravenous solumedrol and eventually I could no longer drive and could no longer work. But after 3 mos with the new doctor she diagnosed Fibromyalgia, Chronic Myofascial Pain, HYothyroidism, and DDD. That was Jan 2008. I was so happy to have someone, especially a doctor believe me, that I burst into tears. I had a name for it and I was not crazy.

It has not been easy - once an over-active, over-achiever, I am now forced to take things one step at a time, much rest and actually have to attend to my own needs. I lost the body that was once mine and find myself in a new one that I have yet to become completely aquainted with. I hated this body at first but we are starting to get along though I am still very stubborn and fight it. I just have to live life differently and view it differently now. It is a constant rollercoaster ride an it teases me some days as I may stand up and be able to walk normally for 2-10 minutes. Then it wears off. I used to cry when this happened but now I walk the room in circles, slowly, if too fast, I wear myself out - a long way from kickboxing : )

Thanks so much for this -- very interesting.  It is so interesting and helpful to people to see the similarites in the stories.  The run around, the physicians not knowing so presuming it's malingering.  The similarities with my onset -- I was very active -- had just bicycled Alaska, was in OT school (the first year is VERY stressful and it is competitive to get in so I worked full time and did volunteer work, etc... also was a gym rat) ... weakness on stairs. Tremor when lifting weight and having to drop my weights by about 30%.   Neurologist thought it was MS and the MRI had some 'lesions' but in an unusual place for MS  ... spinal tap (was fine), $$$, different body and life and work.  AND adjusting to it over time.  I really liked that part of this story.   Now I am happy to say I have said recently 'just like I had to adjust my expectations 'down', I now have to do the same as I improve!  Expect more of myself, etc.  And I'm a long way from riding around Alaska, but the thought has appealed to me to get back on a bike.  My balance is better. ..  And I hope others who have gotten improvements will write more here at Lumigrate's forum area so others can learn  what they have done.  I've tried to put quite a lot in my 'Story' here in this section.  So this is GREAT to have the 'acceptance' showing through and in particular dramatic case of change. With the visual piece I was expecting to see lupus was also part of your case.  THANKS for the contribution!

My name is Jen, and I have been meaning to post this for a while now but anyways I have no clue when my fibromyalgia began, but I got diagnosed in May of this year. I guess it would be easiest for me to start my story from when I was a kid. My mom tells me that I used to always want to go to the doctor for any little thing. One day the Dr. told me that if I stopped asking to see them that my mom could afford to buy me ice cream more often! It kinda worked but not really.

In grade school I developed Asthma.  I had my tonsils taken out when I was in 6^th grade because they were so enlarged that I could barely breath.  It took me about 3 weeks to recover from the surgery. Then, I was put on a steroid inhaler and I had to attend breathing classes kind of like physical therapy for the lungs. I started puberty when I was 10 and every month I would go to the school nurse and ask to go home because the cramps from my period where to painful. I had very bad irregularity like sometimes I would go 2 or so months in between periods or I would have 2 in one month. They where always heavy and would last 8-10 days. Finally I was put on birth control to help with the irregularity, but it still didn’t do much for the cramps. Now luckily they have the 3-month birth control packs so I only have to go through it 4 times a year.

Some time after high school I had woken up one day and couldn’t move my left arm. I was in the shower and went to put shampoo in my hair and I couldn’t reach my head because it hurt so bad. I went to the doctor and he thought maybe I had strained my shoulder or something so I was sent to physical therapy.  It didn’t do much but they would put massaging electrode thingies all around my shoulder and then put a heating pad on top. Eventually I regained movement and the pain slowly went away. The last day of my physical therapy session I was driving home happy that it was all over and BAM! I got t-boned.  Luckily I only suffered a bruised rib where my seatbelt restrained me (right where one of the FMS tender points are and it still feels “bruised” when it rains). That was the worst car accident I’ve been in, I’ve been in 8 total and none of them where my fault. I must either be invisible or have a magnet that attracts other cars to make them hit me.

I generally don’t like to get flue shots because I always seem to get something that seems worse then the flue. In 2006 I was working at Build-A-Bear Workshop and since I was constantly surrounded by little kids I decided it would be best to get one, just in case. I got it at the beginning of October and by the end of November I got sick. At first my doctor thought it was just a cold and gave me a cough syrup with codeine. After a couple of days I broke out in a full body rash. It turns out that I’m allergic to codeine which kinda sucks. My “cold” went away after my rash cleared up and then halfway through December I got the same thing. It was more coughing and slight fever for about a week and then it went away. It did this off and on and finally I switched doctors at the first of January and by February they diagnosed me with adult whooping cough. They gave me a bronchitis booster shot, some meds and a different inhaler and told me to stay home for a week. After I was better my new doctor decided to start doing some tests. She was concerned that I had gotten whooping cough and was also concerned about my asthma and my periods. I was also having frequent headaches, unfortunately I still do. She sent me to an ENT doc who had a catscan done on my nasal area. I ended up having a partial sinus surgery done called “a reduction of turbanites”.  I went to schedule my checkup after the  surgery only to find out that my doctor had passed away. She was flying out to her daughters wedding and passed a blood clot. So I was back to square one with doctors, luckily After the surgery nothing really eventful happened.

In August 2008 my husband and I got married and right after the wedding we moved to northeast Ohio. We planned it pretty well, and had money saved up and everything. My husband is originally from Ohio but his parents moved out to New Mexico when he was a kid because his dad got a really good job at the National Labs.  We moved to an area where were we where close to some of his cousins and grandparents and thought that would be good.  I won’t go through all the details because this is long enough without them but to sum it up, I have never lived outside of New Mexico, never been more then 30 minutes away from a relative and defiantly never been away from the food here!  My diet of beans, tortilla’s and New Mexico green chili was completely thrown out the window. No more menudo or calabacitas or sopapillas.

Anyways, I ended up getting a job in a factory making dog collars. I had never seen a factory in my life except the general mills cereal plant. I had no idea what I was getting into. First, it was bright. They must have had a billion and two florescent lights, which have always given me massive headaches. Then it was extremely loud. I’ve always had super sensitive hearing. One night the ticking of my clock was so annoying that I took it and hid it in a downstairs closet. I swear I could still hear it and we are not allowed to have analog clocks in our house because they drive me batty! Also I don’t do so well if the TV is to loud or if people are talking loud and it gets worse if I’m drinking alcohol.  Anywho, the place was loud not only because of all the machines but they also played really horrible music to try and drown out the sound of the machines.

In January was when my biggest problem started. My right shoulder blade was hurting. It felt a lot like my other shoulder injury that I had done physical therapy. I filled out an incident report and the safety coordinator and he had me see this maso therapist guy that the company employs to help people. The first session I had with him he couldn’t massage me at al. He said I was way to tense and that I should go see the doctor.  My doctor put me on muscle relaxants I think it was Skelaxin or something and on a steroid dose pack. He said I had a rhomboid strain. I went back to work and the safety coordinator thought that I  shouldn’t be on those drugs and said it wasn’t that bad! I took them anyways, because how did he know how I felt? The maso therapist was then able to work on my shoulder and after a couple visits said that he couldn’t feel anything wrong with my shoulder or my back period. My spine was inline (prolly from my what once was awesome yoga training) and there weren’t any knots or anything. After my drug regimen I went back to the Dr. for my checkup. My shoulder was feeling better but would get the pins and needles feeling every so often, like when your foot falls asleep. Also, in the lower middle of my back I had a new pain. It moved from one side of my spine to the other and it felt like someone was stabbing me with a hot knife. So my doctor felt around and then was writing notes in my chart and talking and he said “often people with fibromyalgia have these types of pains, I’m going to put you on….” I was like wait a minute. Did you just say I have fibromyalgia?!?! He said yes, it’s very apparent based on your medical history and your blood work came out negative for everything else.

Everything has been disastrously crazy from then on. It seems like everything that I had ever complained about to doctors over the years now not only made sense but since May have gotten worse. I’ve always had an axiety disorder and have taken meds since high school for them, I’ve always had ringing in my ears but it’s happening almost daily and multiple times a day, my IBS is still the same thank goodness. But I hurt in random places that I’ve never hurt before, my feet cramp up a lot and the other big thing is my fatigue and the fibro fog. Since middle school I have always come home from school and taken a nap. I’ve always been tired no matter how much I sleep so I guess you could say I’m used to it (I'm also used to the doctors constantly checking my thyroid only to find nothing) except now, I’m taking 75mg amatryptilin  and I still lay awake most of the night. I try not to take naps but every day between 1 and 2 I get exhausted and it’s been this way for like ever but now the exhausted feeling is more intense. Another thing is, and my mom will vouch for this. Since I was practically born I wake up between 3 and 3:30 every morning of my whole entire life and it takes me forever to fall back to sleep. I tried to just get up at that time because I thought it was maybe my body telling me that it wanted to be up at that time, but by 9am I needed a nap. I really don’t get it.

At first the fibro fog was hilarious. Actually, the very first time it happened it was scary until I knew what it was and that I was just going to have to accept it as a fact of life. The first time I was at my favorite pizza place and I swear to this day that I ordered an ice tea. But when I took a drink it was diet coke. I got really upset and was going to go tell them my drink was wrong but my husband said “no dear, you really ordered diet coke!” Since then I’ve gone on to do funny things like start the washer but not put the laundry in, I forgot my locker combo and register log in at work,  I put my glasses in weird and random places and I find things where they really shouldn’t be. The other day I was in the living room trying to change the channel but the remote wouldn’t work. It turns out some how I took my bedroom remote into the living room and since they where both direct tv remotes I thought I was using the right remote! However, it’s also been scary. My register has been over 3 times even though I count out the change once to myself and then physically to the customer. I only get one more chance or I’m going to be fired, which doesn’t help matters much. Also, the other day I drove the wrong way on a one way street that I drive on all the time. I don’t know what I was thinking but I’m glad that I didn’t get killed.

I’m also having a hard time with work and school. When we moved back to Albuquerque in July my old boss hired me back. However they don’t understand why I can’t function the way I used to. I’ve brought them in my medical records and have brought them information on fibro they just don’t seem to get it. Also, Tuesday I had a meeting with the schools special services. I was hoping to get help for my classes especially with accommodations and memory retention because I obviously can’t seem to remember or focus on anything anymore. The counselors advice was to drop my math class because I was too stressed to take it this semester. How is that considered help? I’m bad at math, always have been and always will be, but that doesn’t mean I can’t scrape by a C to pass. It’s usually because I transpose the wrong number and it troughs the whole equation off. It’s not that I don’t understand how to do it, I just manage to screw up the problem somewhere.  She also told me to reconsider my degree. But my degree is the only thing keeping myself sain! I’m working towards my bachelor of science in biology so I can go to grad school and get my masters in wildlife something or other so I can be a zoologist. I want to be a zoologist because animals make me happy and there are very few things that make me happy right now

So this is extremely long and it’s not even the full version or everything that is on my mind, but all I can think of is the words of my best friend when she is telling a story, she can always turn tragic events into something hilarious when she says “but wait it gets better!”  So I’m not sure what I’m going to do about work, I’m not sure what to do about school, and I really have no [insert bad word here] clue what I’m going to do about this fibro stuff. I try to stay positive but every time I get the slightest bit optimistic something goes wrong. Oh! And there is no support groups for Fibromyalgia in this city either. I called around and there is nothing. The closest thing is a CFS group. Boo.

Also, as a side note I've been trying to learn as much as possible about FMS. I've read a lot online and I've read Fibromyalgia for Dummies and I saw somewhere on lumigrates facebook pages someone said they where reading Fibromyalgia: The First Year. I picked that up on Monday and it's been giving me interesting things to think about.

As a 17 yr survivor of Fibromyalgia and CFIDS , I know the pain and isolation that you suffer each and every day.  For the first four years, I was bed fast. My world was the walls around me. I had to have help getting to the bathroom and couldn't take care of my most basic needs.  From my bed , I began my own research. I studied supplements and the ones which help with the immune system health, ones for energy and I took them( one by one. ) I discarded the ones which didn't help and kept a journal of the ones which did and how it helped to improve my quality of life.  I researched how to remove toxins from the body, for with these illnesses, there are toxins in the liver and intestines. I tried breathing exercises and was amazed at the results.  They help with energy, brain fog , memory and pain.  When we have these illnesses , we don't breathe as deeply as we should and there isn't enough oxygen getting to the brain so that is why the breathing techniques help. (the improved oxygen level decreases pain and clears the fog) I had no idea of a book until my doctor suggessted that I had gotton such good results that I should write a guide to help others. In July , it was published. A article was written in the Sep. issue (pg 55 or 56) of "All About Women" magazine concerning my findings.  It may be in the archives after Sep. Title of the article is 'Finding your way through Fibromyalgia and Chronic Fatigue.'  located at www.aawmag.com [18]   The book title is' FIND YOUR WAY' and has an inside the book view on www.amazon.com [19]    I want others to be helped by what I've learned and by way of a book is the only way to get this out to the many who need it and want it. I don't claim that I have a cure but a journey to a better quality to your life. After all, isn't it worth trying things which are natural, in order to achive that better quality for yourself?  Check it out. My passion is that many will be helped and find hope.

Hi everyone!

I call my Fibromyalgia my full time job. It used to be the lead weight I lugged around everywhere, hated, and loathed. But, when I finally accepted that it was with me and not going anywhere, things changed.

Fibro and me have been partners in life since fall of 2001. But it wasn't until the past 4 years, we have become friends. Just like most of us here, I wake up everyday not really wanting to move because I hurt all over. Right now it's after 1 am, and I am up because the pain shooting down my legs is so intense I cannot go to sleep.

My mother always said I was unique, but I did not think she meant it this way. Yes, my pain makes me different than most people I know in my life. I have to carefully choose my food, activities, and even my friends all because of my health condition. I used to think was for the worse. However, now I believe that my fibromyalgia has taught me life lessons that I could of not learned anywhere else.

I have learned how to enjoy life's little pleasures more than ever. We all go through our ups and downs with our health, some of us more than others. My pain has taught me on the good days to stop and smell the roses. Why do I need to rush past all of the pleasures life has to offer?! And even on the bad days, the simple nice treats mean that much more to me. For example, when I hurt head to toe and all I can do is take the icky pain meds just to survive, I listen to my favorite recording of Mozart. Then on a good day, I can do things like go sky diving! My pain has also taught me how to make good choices; hence, if I know bad weather is coming my way, and stress of my job is getting to me, and a flare-up might be just around the corner, instead of going out to dinner and then to the night club like we had planned. My friends know that I can be there out living life to the fullest, I do. But when I need to chill out at home, they understand and are there for me. Even though my journey in life has just begun, I vow to enjoy every minute of it, with or without my fibro!

When I posted this on FB, Mardy asked if I would post it here as well. Some things have changed (for the better) in my life since I wrote it. You can read about that on the 'supplements that help' topic.

So many people have asked me my story, and although I have written it out before, never have it I put it out there for the world to see.

One of my reservations is, sadly, the truth isn't legal in America. So much for freedom of speech! Drug companies can tout all kinds of claims for curing illnesses, when, in fact, no disease has ever been cured by a drug. The few diseases we have 'cures' for have been found to be nutritional deficiencies. Beri Beri, Pellagra, Scurvy - were all cured with nutritional changes. However, in today's society, you can go to jail for claiming that water cures dehydration. Unless you are a doctor, or a pharmaceutical company, you can't make claims of any sort that resemble 'treatment' for a disease, illness, or even a 'condition', **even when you have scientific studies to support your claims. **
You will of course find many people, and websites who will make claims, sometimes outlandish ones even. The laws still read that they can be put in jail, and since I am not interested in doing time, I'll refrain from making claims, or even sharing my story in a way that would lead anyone to believe that I am suggesting a particular route for treating a condition.

What I can say is, and I'll say it loudly - THE BODY CAN HEAL ITSELF IF IT IS GIVEN THE PROPER RESOURCES. This is most easily demonstrated with cuts and broken bones. Drugs are not necessary for healing and repair to take place. It just happens. For some, it happens easier than others. And the process can be sped up - if you provide the body with the proper tools.

Now, after that very long disclaimer, I will tell my story. :)
My quest for healthier eating was one that began about 14 years ago. I was pretty healthy, or so I thought. I was pregnant with my 5th child, and began to have some health challenges. Many of those concerns were the same ones that the majority of women now suffer with while pregnant, but my midwife (wise woman) convinced me that it happens because of poor nutrition. Try as I might, I was not able to correct the problems, even with a handfull of supplements. I had high blood pressure, blood sugar issues, and reccuring urinary tract/kidney infections, along with other pregnancy related complaints.

Let's go further back - to my childhood - for a minute. I was sick more often than not as a young child. Constant sore throats, colds, tonsilitis, and strep = constant antiboitics. Somehow I managed to outgrow it, but as a teenager, I was a junk food addict. I suppose it is a hazard of working in the fast food industry. I really think there is a connection as it is a reccuring story I hear from other people who struggle with regaining their health.

Fast forward back to where we were. Baby number 5 is born, and health is seemingly restored. My quest for health was put on the backburner. Let's face it, rarely do people seek out health answers, unless they have personal motivation of some sort. Fast forward to the next pregnancy. My health was somewhat better, but the same issues resurfaced.  Next came baby number 8, our precious Joshua, who was born with a congenital heart defect, and he died at 4 1/2 weeks. Stress is much more powerful than most people realize. Most auto-immune conditions raise their ugly heads with the onset of some type of stress. This was where my downward spiral began. I was so emotionally distraught that I didn't even realize what was happening. I was hurting on the inside so much, that the hurting on the outside seemed natural. Depression, and fatigue became frequent visitors to keep my aches and pains company.

Over the years I had watched my mom struggle with her health. After many years of testing, and eliminating everything else, she was finally diagnosed with fibromyalgia. I had come to believe that fibro was just a catch-all for people who felt bad. I didn't doubt her discomfort, but I wasn't sure I gave much credence to her diagnosis. God is good at teaching people to not be judgemental - have you ever noticed that? It is one of the reasons people say "never say never." Why? Because you end up eating crow, and I can't remember it ever tasting good, no matter how it was cooked! After Joshua died, I began to understand my moms aches and pains, in a very personal way, and I repented of every questioning the realness of fibromyalgia.
I managed to somehow pull myself together after Joshua died, and, by the Grace of God, put the broken pieces back together, minus one beautiful child. I knew I had to be there for the rest of my family, and slowly but surely, I began to function in a semi-normal fashion again.

Fast forward again through two more challenging pregnancies. At this point, I had gotten pretty good at managing with nutrition. Our diets had radically changed. I was grinding my own wheat, and baking bread. I was eliminating some of the most unhealthy things from our diets. In fact, I was becoming a little prideful about my successes. What is it the proverb says about pride coming before destruction, and haughtiness before a fall? Wellllll, the next pregnancy almost did me in. Halfway into it, my liver decided it had enough. It went on strike. If I had turned yellow, it probably wouldn't have bothered me so much, but instead, I itched from head to toe, inccessantly, as in, non-stop, and scratching didn't help!

The mid-wife sent me to the doctor, and the doctor offered me a drug that would help clean the bile... which in turn was supposed to stop the itching. Now, don't think it wasn't tempting, but I had, through some research, learned that it was my overuse of Tylenol & Advil over the years that had compromised my liver to this degree. Drugs were the cause, how could they also be the answer?! I found a diet called the Liver Cleansing Diet by a Dr. Cabot from Australia. It was stringent, but it worked. If I cheated, even just a tiny bit, I would itch for three days straight. Talk about motivation! I was now motivated, not just to stick with this diet, but to find answers.
Not long after that, some friends introduced me to some science that would rock my world. Even though my life went on after Joshua died, the aching never really stopped. There were many days when the discomfort, coupled with depression, would keep me in bed over half the day. My husband would come home to find me still in my jammies. I functioned, but not full force.

My dear, sweet friend knew I was hungry for answers. I was also looking for ways I could help my mom (and looking at her struggle made me realize what I was destined for down the road.) My friend showed me a very simple diagram with some building blocks, and letters of the alphabet. The alphabet that allows our cells to communicate had been discovered, and the modern diet is missing about 3/4ths of the letters. It made so much sense! We might have all the other nutrition right, but without the building blocks that form the cellular alphabet, our immune system goes haywire. I am an analytical person, and though I am not a genius by any stretch of the imagination, the skeptic in me questioned how we manage to function, day in and day out, without good communication going on. I dug until I found that the liver can synthesize the cellular alphabet - if the proper enzymes are present, and if it isn't over stressed. Hmmm, now it was becoming even clearer. We stress our liver when we eat things that require filtering. Today, that means most everything. Enzymes are only present in live foods, not prepackaged, grocery store variety.  When we are under emotional stress (which stresses our organs) is when most people see the symptoms of auto-immune conditions begin. The puzzle pieces were beginning to fit together!

Obviously, there is much more to my story. Most notably, is a happy ever after ending. I feel better today than I did at 25. I have more energy and stamina than my teenagers, but maybe not the two year old who has energizer batteries.  Because of my life changing experiences, I have chosen to be a wellness consultant, and a weight loss coach. After I got my life back, I decided it would be nice to have my figure back, so at 40 another journey began... and I lost 50 lbs. To read THAT story, you can reference my long-neglected blog: http://luvmy12kids.blogspot.com/2009/01/long-version.html [23] 

I wish I could write out an ABC-123 formula but our bodies are a little too intricate for that. I can however, promise you that there are answers in nature, and I feel 100% sure that all the conditions we suffer from (outside of parasites, bateria and viruses which can be avoided if our immune system is healthy) are nutritional deficiencies combined with toxic overload. But, that is just my opinion. Thankfully we are all entitled to one, and so far sharing them hasn't been outlawed. :)

 About me..... My Fms strory

i have had fibromyalgia pain since i was 14 years old.

i crashed with full blow-en fibromyalgia at the age of 16 years old

i was disabled in unbearable pain near to a year and it took the doctors

around 2 years to work out that i had fibromyalgia i have had an bad case of

fibromyalgia since day ONE! before i started my treatments i couldnt walk to the

shop next door to my home which was only 5 feet away from where i lived

at that point i was bedridden most of the time for such an very long time

walking for 5Min's would MAKE BE BEDRIDDEN! IN UNBEARABLE PAIN*&^

i never had an pain free day, hours weeks, hour, min ever in my whole life!

for over 10 years!!*&^(^% would feed junk food sweets chocolate down me everyday

i never smile i was so big and so unhappy then!

i had serve headaches for 10 years unstop no break before the treatments as well

i couldn't even go to church it was that bad!

Then One day a wake up saying thats IT!! i cant take this pain and hell anymore

so i sat on the Internet day and night and i mean it i was serching and printing

off fibromyalgia treatments 24 hours a day i have seen over 8 doctors and i have been

deny help from pain clincs and the whole of the English medical field turn around

and said to me that the whole of the medial feid cant help you they cant do anything

for fibromyalgia!!

But you think that would make me GIVE UP THEN YOU CAN THINK AGAIN! LOL

I HAD MORE FIRE POWER TO GET BETTER AND SAID TO MY SELF THATS IT I WILL DO IT MY SELF THEN

i have tried very so called Cure in a Bottle/Tin  and i have tried pain meds pain meds only cause rebound pain and that's why they don't work they didn't even touch my pain One cm! i have done extreme Research into everything under the sun for many years

3 years later Today i have HAD OVER 400 PAIN FREE DAYS AND I WALK FOR 2 HOURS A DAY (5MILES A DAY) (35 MILES A WEEK)

There is No cure for fibromyalgia/cfs/me but there is hope as you can get better with the Guaifensin protocol/diet and exercise  i still have to limit my life and i have to pace my self out if i aint careful then i will be bedridden for life BUT NOW I  can have a part time life now as before the treatment i didnt have a Life!! i know i will  get good days and im positive person now and now am going forward and not backwards forward is getting better and backwards is waiting around for the pain to go away and getting worse and worse to the point that i would have to be in a wheelchair  going forward is doing something about it and going on the Guai protocol and working by backside of getting by life back am getting there slowly  but that's better then never the lord will not help you if u will not help your selfs !

am here to help you if you want help in getting better am here for you as am healing slowly and i havent been so happy in my life

I HAVE A LONG WAY TO GO BUT I WILL NEVER GIVE UP ON GETTING MY FULL LIFE BACK I WORK HARD AND I GET MY BLESSINGS WITH GOOD AND PAIN FREE DAYS! IF I STAY WITHIN MY LIMITS AND DO MY TREATMENTS THAT WORK!! 100% IM WORKING TO GET MY FMS INTO REMISSION AND I HOPE THAT ONE DAY I WILL BE BLESSED WITH REMISSION FOR THE REST OF MY LIFE!! WHEN I DO I WILL BE HAVING THE BIGGEST PARTY U HAVE EVER SEEN!!!!!!!

WHO WANTS TO JOIN ME????????????????

WHAT TO DO  GET THE BOOK CALLED

WHAT YOUR DOCTOR MAY NOT TELL YOU ABOUT FIBROMYALGIA

BY DR PAUL ST AMAND

AND READ IT AND FOLLOW THE PROTOCOL TO THE LETTER

FOLLOW HES HG DIET AND TAKE OUT RED MEAT AND WHITE FLOUR AND TOMATOES FOLLOW IT TO THE LETTER!

START AN WALKING PROGRAM DO IT EVERYDAY! NO MATTER WHAT!! DO IT!

GET THE BOOK CALLED FIBROMYALGIA COOKBOOK BY MARY MOELLER  AND FOLLOW

DONT WORRY ABOUT THE HERBS AND SUPPLEMENTS U MIGHT NOT NEED THEM TO GET BETTER, AS THATS WHAT I HAVE DONE

A new friend on Face Book was so nice to send me this link to the article about my book and my story. I don't know how to do these things and am so grateful that she was so kind as to do so. http://www.aawmag.com/story/14352 [26] Finding Your Way through Fibromyalgia and Chronic Fatigue

Hi, I'm Faye,

 Guess I will start by saying that I believe I know what started my Fibromyalgia. Back in 1999, while walking down at the river near my home, I was exposed to something ( we yet to figure out what it was) when I returned to my house and took at shower, immediately, I started having an allergic reaction and a asthma attack, which I'd never experienced before. So off to the ER we go. They did their usual pump me with drugs, and I stayed for a few days. Allergry doctor came in and took care of me. Put me on three different allergy meds and three inhalers, plus a Epi pen.

 We tested me for all allergies, and test came out that I was allergic to over one hundred different things. Felt like I was allergic to myself. I could not go outdoors if the wind was blowing, due to it would put me in a reaction and an asthma attack.

 Here comes the pain. Out of the blue I started having all over body pain. Seen doctor after doctor, and finally was diagnosed with Fibromyalgia. Doctor put me on Lyrica, and Evail and sent me on my way. No pain relief there.

 I continued working, and in 2001, I had an accident at work, hurting, my knee, shoulder and neck. This added the pain, and finally in 2002, I gave up on my career.

 I've also had back issues in between, and was diagnosed with degenertive disc disease. My spine is basically crumbling. All this is going on and I'm trying to not only treat my Fibro, but my back issues as well. One docotr put me on Cymbalta, had me so drugged that I did not care if the house fell in, and would not change my dose. He swore that it would not only help my fibro, but my nerve pain from my back too. Nope, didn't happen.

 I've tried all the drugs they prescribe for Fibro, to no avail. So, I decided, I was not going to continue to take drugs, that not only made me feel worse, and did nothing for the pain, but they also drained my pocket book. So, I picked myself up, and told myself I would not let this destroy me. I started walking, and watching how and what I ate. lost the weight from the meds and felt alright. In pain, but bearable.

  Then in 2007, my mom died unexpectedly, and I lost it. Which sent me spiraling down, not only physically but emotionally. So, I go back on Cymbalata, not for the Fibro but for the emotional stuff. And once again, I hated taking it. So, I got counseling. My GP, talked me into trying Savella. Okay, this drug, is aweful. It did nothing for my pain, and it made me not care about anything. I basically wanted to give up. I came off of it.

 So, to present. My way of dealing with my pain, is taking supplements, changing my eating habits, and my attitude, walking when I can, and grinning and baring it. I due however have to take muscle relaxer and a pain pill once in a great while for my back issues. I'm talking maybe once a month, might have to in between. But, I also due exercises for my back, and get up and move, for me, the moving helps the back. I know when to push and when not too.

 Right now, I'm without a doctor, and I deal with the pain the best way I can. Some days are harder than others. But I truey believe I can make it through anything.

Nicely written -- as are everyone's, really!  Faye, you have put a lot of information into a little space and shows that 'pendulum' or circle we come onto with things we try and find that work or not for us.  I hope that you continue to read here what others write, and as we have more with good experience to contribute, that you'll see things that might resonate for you to try and keep getting better and better.  "Our highest health" as I like to say. 

Mardy

 Hi All!

Where to begin my story? From the beginning I suppose!

When I was very young, I always remembered being sick. I got sick all the time and it seemed to last longer than everyone else's! But I was young I didn't get it- just missed a lot of school and loved it at the time! 

I played soccer, track, and cheerleading since I was about 6 years old and played up into high school (will get into that shortly). I loved sports and was a bit of "tom-boy" but I didn't care I was loving life and was fully supported by my parents to keep playing if that was I was wanted.

At the age of 12, I started getting tired more often and started getting hurt, the age of 13 is when I truly believe my FMS kicked in. I saw a rheum. and got a million tests done- nothing. No one could explain what was happening to me and to be quite honest I didn't care. Sure, I was exhausted and slept 24/7 but hey, I still had my sports! 

I continued to play but over time, I was more tired and hurt so often. By the time I reached my sophomore year of high school, I had 3 knee surgeries, foot surgery, broken nose, the works! I was able to fight it off for the most part. My junior year was my BEST and LAST year of playing sports. I was supposed to run in college and live my dream, however, it didn't quite work out that way.

I remember it like it was yesterday, It was the last track meet of the season, the year, and my body just gave up on me. Looking back I can tell it was a long time coming and I was not prepared to be told that I would not longer be able to play sports- My ortho. told me straight up that if I was hurt again, I'd be lucky if I was able to walk. Needless to say, my athletic career ended that day! No need to feel sorry, I am over it now(FINALLY  ) and put my energy into school and trying to figure out what was wrong with me. 

I must of gone to a 100 doctors and got every test done! Nothing was clear, one time it would come back positive, another negative. It was so inconsistent. At the age of 20, and in 2nd year of college, I had it and was on a mission to find out what was going on with my body! My major was Health Education, so I was learning about human diseases and treatments and would not take "we don't know" as an answer. After 3 more rheum., they all agreed that I had FMS, Chronic Migraines, and Raynaud's Syndrome. Then the mission began of finding treatment...

It was a long and hard journey and found out that my body does not respond well to any medication and 99% of the time made me sick. I do not take medication on a daily basis. I have "super drug" for migraines to take only after 3 days of it beginning, and a muscle relaxer to take "when needed." I do not rely on them to "manage" my disorders. Even though I was diagnosed at 20, now 23, I've been living with this for 10 years and just did what I needed to do to get by.

Although I did not wake up one day and have all the symptoms at once and figured it out quickly, my flares hit me like a "mac truck" (thanks Cherie for the term. ). To manage my FMS, I try to eat right - even though I am very picky and exercise. I cannot do any strenuous activity so I stick with elliptical and yoga as well as light weight training. 

I do not let my disorders define me, but they are a part of who I am. I do not feel sorry for myself and try not to dwell on my situation (unless I am in a flare- up, and I'm sure you all know how it feels!). I try to take what energy I have to encourage and help people. That is why I went into health education and am continuing school and working on a masters in counseling. I have a full-time job, and am a full-time student. It is a lot of work and definitely catches up to at times but I KNOW it will be worth it in the end. I want people to learn something from me and to know that they are not alone. 

I hope my story has helped someone in someway. I think everyone has a story and as a member of the community, it is important to share our experiences to help understand and support one another! 

-Candace 

Since this was a pretty popular Topic in the general Fibromyalgia Forum, it warrants setting it aside in it's own Forum area as we prepare for the SECOND International Fibromyalgia Awareness Day for us.  Here's the link, so you can read MORE stories or WRITE YOURS if you like!  Thanks for everyone's input and interest -- we'll hopefully have a wonderful collection as a resource within the BEST WEBSITE ABOUT PROGRESSIVE CONCEPTS AND PROVIDERS related to chronic illness on the Internet -- starting with Fibromyalgia and Chronic Fatigue/ ME.  ~~ Mardy

www.lumigrate.com/forums/health-issuesdis-eases/fibromyalgia-chronic-pain-and-chronic-fatigueexhaustion/fibromyalgia/e [31]