Excellent Medical History of Person with Very Complex Case of CFS/FMS and Neuro/Orthopedic

I wanted to post a conversation I had back/forth on the Lumigrate:Fibromyalgia Facebook page today (removing identifying information such as name) which was the result of a link I posted of the NEW piece posted last night from a chiropractor in my 'home' town of Grand Junction, Colorado related to drinking water having flouride added to it or not -- quite a debate in the general sector and not at all debated in the alternative/conventional medicine world, which is naturally what Lumigrate.com 'is about' is functional medicine -- find the underlying CAUSE of illness and remove the reasons rather than find bandages and pills to counter-attack effects.

The person had written an excellent medical / case history which was just too good to pass up transferring as a topic, removing identifying information/name, naturally.  I believe that this type of story might help paint a picture for those who might not yet fully appreciate why so many people are wanting changes to happen -- our lives have been really impacted by MANY things which have added up to have many with very debilitated bodies, minds and spirits sometimes, unfortunately.  

To make it more clear, I am going to put the words written by the other person in block and my responses will be in the regular/white background.    Immediatey below is what I had posted on Facebook at the L:F page, as I said intiially, which started this GRATE discussion. 

thats great, also have to work on sewage treatment to neutralize medicines, etc....boil it until sterile after treatment and release into our rivers and drinking water supplies, tighten up manufacturing, mining, etc pollution into rivers, lakes and water tables......but on fluoride thinking of dentistry if now if only we petition and pressure, and can get class action suite against american and canadian and other countries, dental assoc, and whatever other govt agencies allowed dentists to put amalgam mercury in our mouths for so many yrs with no warning that is 3rd most toxic substance, neurotoxin constantly releasing vapours in our mouths, swallowed, inhaled, absorbed in tissue that is so close to our brain and spinal cord. espec anyone who has had over 2-3 of them, or they pay 2/3rds of cost with 0 percent financing on any remainder bill, or something.

I was unaware of the class action lawsuit in the late 1980s related to a rubella vaccine which was what 'tripped' my health problems, as I was required to get a vaccine to get married in Colorado in 1981, based on the blood test showing I had no immunity to it. I agree that it would be outstanding to get some compensation about amalgam: I paid to have mine removed / replaced about five years ago. 7 years ago I was gifted money from a family member to get my heavy metals tested and I was a walking thermometer, I joked! One of the highest ever seen in 20 years total experience by my MD and ND doing such testing.

I'm chosing to focus on Lumigrate.com at this time on this flouride in water 'thing' because .... it's relatively simple to get them to change and costs LESS money so it is, in my mind, the most simple thing people in a community can do which will help their health. (For the 50% of us who have flouride added to our water in the US, the # is dropping, thankfully, due to the budget issues and awareness/pressure from the public). These things then get picked up by other businesses and organizations, like the ADA, and the impact the public has is meaningful. Essentially 'we call you out on this one about fluoride in the water' and then eventually you have something like we saw in when 'the wall' came down. Thank you for reading and supporting this page and Lumigrate.com!

i totally understand, our water quality in Lethbridge, Alberta, Canada is horrible, it literally makes me ill to drink it, when i first moved back here in 2000, within the year i had to have stomach scoped, which dr did without asking if i wanted sedation, and as i gag so easy i thought was going to choke to death, and had high level of H.Pylori, i was vomiting all the time so spontaneous i had about 10 seconds to find a place to, then that caused duodenal ulcer, impacted bowels even on cleanse they couldnt do the colonyscope from other end, lol, most embarassing medical test ever.

we get our water from a river which should be good mountain river water, however, there are several towns and small cities, as well as mines only 30 minutes away, that pollutes it so much, we have been told for at least 20 plus yrs not to eat the trout, pike etc due to high mercury levels? how would they remove from the water we drink? they had a fluoride debate last yr after a decade of it being brought up, i am unsure the decision will add the link. http://www.fluoridealert.org/Alert/Canada/Alberta/Lethbridge-debates-removing-fluoride-from-tap-wate.aspx [2]

nd for the mercury amalgam, when we were young, mom just divorced, father did not pay child support, thus we recieved the cheapest fillings, it was not due to not brushing and flossing, i think is a bit hereditary in our family for some reason. however by 12 i had 8 of them, big ones in molars, tops, between, and now along gumline, i now have a total of 14, all molars top and bottom, and in last decade being on govt disability they only pay for amalgam unless is front 6 teeth, and dentists even say the white fillings dont last as long so silver is better. well in 97 i broke my back, xray didnt show it, anyways....developed severe lumbar/sacral/pelvic pain due to delayed mri's and specialists caused rep injury to all the soft tissue injuries, my right sacroiliac joint ligaments were unable to heal because i was forced into a work hardening/simulation, exercise, push thru the pain type program, against my physio and dr's progress letter advising against such program/activity until had mri's and specialist exams because they had diagnosed the issue hands on exam.

WCB case manager and their dr ignored them, said go or we cut u off benefits, income and medical.....when i got home after the 2 months there i was on narcotics and sleep meds and elavil,and a letter my claim was being closed even tho i failed the program who wanted to discharge me after 1st week, WCB said keep him just modify so no exertion, and they let my dr set up referal to independant specialist. before in physio at home i was improving, only taking tylenol or robaxecet, was sleeping, improving. anyways shared that background as it led to diagnosis of severe myofascial pain, sacroiliac dysfunction and lumbar scoliosis, and they cut me off 2 weeks after the 2 month program, tho i still had 3 month wait to see specialist ? so i see him, get mri's, shows unhealed compression fracture L5-S1, torn bulged disc, torn glut major, exam showed rotoscoliosis sit or standing, walking, unstable sacroiliac joint, nerve damage parathesis to r.thigh, neurogenic bladder, psyatica, etc......he and in next 2 yrs and 7 other specialists, tests, exams, letters from dr's hands on exam and tests and the mris said it was long term disability, would cause accelerated wear and tear, injury easy,.

now in last 7 yrs diagnoses are fibro, tested for lymes, but diagnosed me/cfs with fibro, spinal instabilities, lumbar nerve forminal stenosis, c spine stenosis in spinal column and 6 forminal nerve root stenosis, advanced osteoarthritis and disc disease, multiple bone spurs thru entire spine too, in neck multiples per vertabrae, also on facet joints, and large calcium deposits in occipitals and tissue around spine. now in last 5 yrs went from ok, manageable pain with flares, to housebound, awake 2-5 days week after week for 2 yrrs.....now unable to sit at all, or walk or stairs without lumbar slipping out, pinched nerve and sacroiliac feels like hot poker, now major cognitive decline in last yr, and also diagnosed with autonomic nervous system dysfunction, releasing adreniline constant, so adrenal fatigue, below normal testosterone, and on and on, i had symptoms of me/cfs and orthostatic intolerance since age 7, this ampliphied big time. so really wonder about all these fillings, the cognitive issues, with stress of such severe pain 15 yrs on immune system. so much going on dr is at a loss i feel like they gave up and just managing with meds, as all other things failed, cortisone epidurals, physio, intra muscular needling, and cannot afford pain management treatments like more physio, accupuncture, massage, etc......

You sound like a well-trained medical professional -- excellent health history! Particularly for all that you have going on and for how long it has been going on.  Like you, I had a lot of fillings but in my first ('baby') teeth, not in my second teeth -- I only had 2-3 and 1-2 were actually faults in the enamel that had to be filled, 4 total.  I had them replaced a few years back with the white stuff and then found out I should have paid extra for gold perhaps because the plastic also has toxins and because, as you say it does not hold up well.  I already had to have one replaced.  

 I thought it had to do with my family eating differently before and after my maternal grandmother left from living with our family when I was age 4, but that didn't really fit with when I got all the fillings.  Then I saw a show about poor water quality in an area of New York state, I believe it was, where the families banded together to force the industry in the area that had caused water pollution in drinking water; my family was on a well that was down by the creek until about the time I got my second teeth, so I then was more suspicious of water.  OR a combination of things changing --- sometimes it's hard to figure out and it's not really that important exactly as long as you are unraveling the knitted scarf in order to roll the yarn back up and reknit things in a way you're returning to health.  

My car mechanics moved from what looks to be a pristine mountain town named Silverton because of all the illness they saw in people around there. (Shawn White the Olympic snowboarder had a private facility built there to be undisburbed in his training, I have seen that on TV so you might have seen it too.) The area I grew up in is in the mountains outside Denver, Colorado and is known to be a 'hot spot' for environmental illness.  I only found that out by sitting next to a researcher at the research center here in Grand Junction, Colorado -- there was a doctor who was interested years back in uranium workers' illnesses and there's a research center named after him.  

I pursued heavy metals challenge testing -- my father had wanted to pay for it because he was kind of interested in what would be found and he didn't want to do any kind of testing himself; he had CFS in the 1930s and then FMS from there, he was quite ill when I grew up, mostly from fatigue and migraine headaches. It was $400 plus time for the MD, another $200 or so.  The chelations were not that expensive per time, $40 each BUT I was going to need quite a lot of them, 12-15 to start then retest to see where the levels were in my system and go from there: I tested as one of the highest he had ever seen.  The ND who has videos on Lumigrate.com said I was the highest he had seen and he had about 5 years of experience at that time.  The MD had about 10 with it, I think.  I joked about being a thermometer.  

Like you, I had symptoms all the way back into childhood, and since you mention orthostatic hypotension, and many times people presume those of us in the US have excellent doctoring, I was blacking out EVERY time I went from sit to stand -- all day long.  Sometimes when it was particularly bad and it was totally black and I wasn't hearing anything going on for a second, I would get a sensation of a pulse or something in my whole body. But I learned to just freeze after I stood up VERY slowly and just meditate through it.  I didn't know I was 'meditating' but I was.  At age 15 my parents took me to the clinic that was free through my father's work, and the doctor did a 3 hour blood glucose tolerance test and my sugar went super high, then was dropping and was at 60 at hour 3.  "You almost have hypoglycemia like your father has" he said.  Well, I was 15 and knew that was a dumbass answer!  What happens at hour 4, 5, 6?  But I went home and began compliantly eating as if I were a diabetic and when there were no changes after another couple of years they paid for me to go to a better clinic and doctor on the out of network part of their health insurance or maybe it was through my mom's, she was a teacher in public schools.  At hour 5 it was at 37!  Okay, but I'd been eating compliantly and that didn't help any -- anybody want to look at the SYMPTOMS and look at orthostatic hypotension maybe?  I say this now as I now know about it but I didn't know, and despite being very educated people, neither did my parents.  They were mired in their own problems and basically very little was ever tended to about me routinely or in something significant like I had learning disabilities and needed special glasses and therapy or medical attention for blacking out all the time.  

I was a good student, was rarely too ill to go to school from a 'bug', though I got a lot of colds, contributed a lot around the house and outside with the animals and property -- my dad would come home early from work about once a week and go straight to bed with a migraine.  Every night he had to rest from fatigue and some level of headache.  My mother smoked which contributed to his headaches, and you should see what else is in my heavy metals results?  

A present that keeps on giving from her now 25 years after she died (partly to do with smoking) and my grandmother 15 years prior to that, who were constantly smoking in our very small, confined house with stagnant air -- cadmium and lead, which are found in the papers of cigarettes (and joints if people do that) and it affects the second-hand smokers more. Okay up to when the US Surgeon General said 'smoking is bad', I'll give leniency, after that time, which was the next 15 years until I left for college, it's child abuse in MY opinion.  It didn't make me feel badly in any way, I just HATED it and I would plead for her to stop and the response was 'well at least you hate it enough you won't smoke yourself'.  Nice way to make your kid feel important.  So what would I do?  Try to do more, be better, be as close to meeting their needs and expectations as I could, rather than being a kid.  I look back and think about the % of work that I was doing for the 3 person household and --- it was just so wrong.  Again, part of mind/body/spirit medicine is to address all that stuff, let it go, forgive it and then keep working to not let people like that be in your life.  Eventually you can make big transformations, but I believe you have to open your eyes and see reality and define what has gone on and then you can address it. And that is hard to see sometimes, you're so close to it! That is where it can be helpful to use professionals and we offer coaches on Lumigrate.com who charge reasonable rates.  I charge reasonable rates as well for the type of analysis and navigation / direction I provide to individuals who wish to have my 1:1 input.

By the way, this information about where lead/cadmium got to me came from Dr Spurlock, the original MD locally who did this testing did not have the level of experience that Dr Spurlock has as he was with a Dallas Environmental Medicine Center until opening his own clinic in 2011.   

So it is a long process  -- I only came to learn of and fully recognize a brain injury, forceps delivery, in the ages 37-50.  There's something in the video on Lumigrate.com that's about health management from Dr Chris Young, a local brain/neuro-psychologist and pain specialist, called "the law of the lamppost, law of the hammer".  The light shines you hit the object you see that is illuminated by the light in that direction.  The light moves and you see and can hit a different object.  

So over the years I pulled on the yarn of the scarf that was unhealthy -- I looked at diet for blood sugar first, then family of origin starting in my late teens but really hard in my late 20s when my health fell apart (CFS, a pretty bad case too), but there was a clear connection to fumes in a new building my work had built for our growing program; Ironically I was part of the team that caused the Clean Air Act Amendments of 1990 to happen, and in those years I was sometimes at the office 70 hours a week.  

I did NOT learn about inflammation from IgG food allergies until age 35, which was 1995 -- that was tremendously helpful and I believe that is the singlemost important thing people can do, next to drinking PURE water in the right quantities, is change their eating to be working in your favor and not against you for inflammation.  There are two recent additions to the food forum/nutrition section at Lumigrate.com for everyone to have access to.  One is also by Dr Jeff, and it's been a very popular read! The other is by me and I cover a local MD's presentation on the same topic.  

That food change can be something that actually saves people money depending upon where they live and if they have access to gardens and etc. Naturally, at least in the US, the foods that are available to people in need of assistance with food is horribly problematic from a health standpoint in the way that 'we' view nutrition. Much attention on school lunches lately is rooted in the same issue of subsidies and longstanding bad practices that haven't changed as new information comes to the front.  I believe if we started feeding our medically and finanically unwell REAL FOOD, it would save money across the board/in the long run.  But changes take time to happen in systems.  And it is frustrating and taxing to me at least, to watch, and I know to many others.  Layer that with your personal health history and all that goes on in my body and life and then the work I do, it's a lot! But spiritually I believe it is the reason I am here so this is what I do.  

I also was in OT school at ages 34-36 learning about what 'shaken baby' syndrome looks like and other brain/neurological impairments at about the time someone in my family went to the effort to have home movies transferred to VHS.  WOW, that cute little blond girl (me) is no longer looking cute -- she's got something CLEARLY not right in her reactions and movements for a one year old (my first birthday fell on Easter); I perk up when someone grabs my hand and has me wave at the camera -- and then I just collapse back into a stuporous, bystanding blob as soon as that stimulation is not being provided!  Hmmmm, so now the funny story about my birth in Denver in 1960 on a beautiful spring day Saturday is not so funny about the doctor pulling me with forceps at 1:30 because he had a tee time at 3 pm for 9 holes of golf!  

But there are layers -- my mother drank alcohol and smoked tobacco when she was pregnant, she was allergic to wheat as a child and thought she grew out of it -- did that contribute to why I had to be given formula? I had horrible ear infections at six months the story was, told to be funny about how spoiled I got and CRIED when I was better but used to being held all night by my grandmother or my mother, who alternated.  Did that have to do with immunizations possibly, that I got the ear infection.  Or was it some kind of food that was being added at that point in time that I was allergic to?  You have to become a medical detective! And not for the sake of naming and blaming but for the sake of identifying the issues in order to then perhaps solve them! 

My health did get much better after I did some chelations in my mid 40s, and got out the amalgam fillings as well around the same time, but that was not a magic bullet. (I only did about half that were needed and will continue on in a different manner in the future, I plan, more gradually and when I have more time to take care of my organs of detoxification and overall wellness.  I had gotten right into doing Lumigrate.com as it was a Carpe Diem situation -- I wanted to have things really in place by 2012 as I felt it was just going to be a time of huge transformation and need for people.  

There was MUCH with restoring the health of my gut -- i had a lot of bronchitis/lung and kidney infections since developing FMS, I didn't have that with the CFS phase which was earlier.  I made an excellent recovery from CFS due to having good insurance-based doctors and going to a chiropractor who was very into mercury information and food information; he didn't educate about food allergies, he just put everyone on a popular diet that happened to remove the foods I am allergic to.  Again, another $300 test but there are ways to find that out with not eating then eating a food and seeing if you see improvement and symptoms return.  Lots of work though, not easy.  

Hormones will always be off with people who have CFS/FM, that's just part of the package, so finally finding a doctor who knew that and having the money to go to them, and the time, was something I finally got grouped up on about six years ago.  My SI and other joints were always going out of alignment and I was always needing to be put back into right order by a physio as you'd call it/PT or DC.  Some won't work on my neck due to the disk that is WAY out and most people would have had surgery like when I was offered it in 1995, I chose not to.  Sometimes I wonder if that was right to not do, but I was hopeful about artificial disks, which is now at fruition and without good results per research that has been reported on.  

Naturally you have to tear into who was doing the research and what their motives might be, and I truly had a total resolution of all my symptoms 3-4 years ago, around the time and the year before Lumigrate.com launched (it took a full year to get from renting an office and buying equipment to having a website with videos on the Internet.  Nothing went as originally planned, it cost much more than the original plan and the medical clinic I was in gave the navigation job to someone else after I'd already committed to get out of my previous OT clinic contract and 'do' what you now see as Lumigrate.com.  (and the facebook pages, but I do hope you are spending time IN the website.  

My OT assistant and the PTs had work hardening experience and did that with patients and we had a lot of patients with upper extremity worker's compensation sending them to us.  I assisted with that and supervised but my main area is brain/mind/neuro patients.  But it was one woman in particular who I always say was one of the 'straws' that added up to one day my saying "I have GOT to get out of this line of work and into education on the internet about all this stuff'; she did not have FM that she was aware of.  

She had arm repetitive motion injury, CTS, etc.  That is caused by inflammation and friction on the nerves. Conventional medicine does not recognize foods as causing inflammation, however. She was compliant with resting, frustrated as she was not able to participate with her family in things they enjoyed together, she had to watch.  Her employer allowed her to work differently and be compliant with resting the arms... she was not making progress.  And we had a HUGE success rate with simple cases and even complex cases of repetitive motion injuries because the COTA had been certified in the past in ART and used that type of technique as part of his soft tissue work.  

As an OT you cannot give medical advise, you can say 'this looks like it might have something to do with ___________ and you need to talk to your doctor'.  So she went to the WC doc and came back with a BIG bottle of Rx ibuprofen.  Which has effects on the GI system which are overall not very helpful and the whole leaky gut thing with food allergies causing the gut problems, that's just like adding fuel to a fire IN MY MIND.  But I had to just say 'wow, I personally come from a different paradigm that I'm not practicing in this insurance-based clinic and this is my health history which you might find interesting".  

But read, above .... pay out of pocket, lots and lots over YEARS.  It is not like my income has not been affected as I got FM while I was in OT school (stress and also cadaver anatomy 2 hours a day the first summer before AND once I got a mask for the fumes that worked ($100 and 3 hours to Denver), I was grossed out by meat so started eating more pastas and did not know yet about me being one of many whose body is allergic to wheat.  The top 10 things people eat in the US are the exact same things that are the top 10 people are allergic to! Plus, two years after I graduated the US went to a new way of reimbursing therapy providers in skilled nursing and basically bankrupted a bunch of companies and 50% of therapists were not employed as therapists in 1999!  I RARELY meet anyone who was remotely aware of it, that didn't make the news cycle like when the airline industry got hard hit in 2001.  

And it was due to a miscalculation by Medicare of how to save the $ they were after and they rolled something out that was impossible to do and so their payments out fell THREE TIMES what their goal was; in the mean time I had 8 hour of work per week instead of 40 plus overtime as I had before.  There went more savings and I was lucky to find a job that used my degree, but it was at 2/3 what I was making before.  When you have the medical bills I had by then, it all added up and I literally went from the time I started OT school to five years later from having a good stash of money and savings/retirement accounts to being $40,000 in debt when I was 40 years old.  NOT taking vacations, driving fancy cars, I had a $10,000 used SUV that I sold for $5,000 after five years, or any expensive hobbies -- my medical combined with the work situation literally flipped me. And I could no longer afford things that insurance didn't pay for, and that is when my health really deteriorated.  I had that happen again in the last few years.  For me, if I don't supplement hormones, I fall apart.  Plain and simple.  That is essentially all I am doing now for my medical in terms of things that require prescriptions.  But 8 years ago right now I was on about 20 pharmaceutical meds -- many helped get things turned around then I didn't need them anymore as I addresed the FUNCTIONAL, underlying issues.    

But things I saw with my patients and then with myself all added up and lead me create Lumigrate! Like bungling nurses (switched medicines on me and I was nauseous then it took the doctor coming around again to figure it out, I was there an extra day witih LOTS of time to thing, THEN they dispensed out more of the medication that was making me nauseous and tried telling me I had to take it since it was a narcotic and out of the packaging.  They did not know until then what I do for a living or what I know, and I could not believe that a nurse would LIE like that to a patient, and I thought "what are people going through in the medical system if they don't know what to do?"  That's why I'm so excited about the book out recently by Martine Ehrenclou: The Take-Charge Patient.  She also has Critical Conditions, which is about getting through the hospital in the best way possible.  

Think about the irony -- I created Lumigrate after having bungling from a hysterectomy that I wouldn't have needed had all the doctors over the years known to test my hormones properly and treat it!  By the way, I was 44 before someone tested my thyroid properly and that was the MD who knew about chelations and all that, but he'd not even initiated doing that, my MT saw the goiter on my neck/throat, I'd just been for my 3 month checkin about FM, my second with him, the week before but in neither did he do a hands on, he was more of a talker/thinker doctor.  For years and decades in 4 different cities I'd complained of fatigue or being cold and they'd run TSH and say 'you're fine' but I didn't know the types of thyroid testing that is needed to tease out CFS/FMS for many more years.  That's what I was going to doctors for and like most others, I got the run around and my life and livelihood was altered by it. And that had further repercussions socially or familially and it becomes quite a life-altering thing.  I recently had a friend really upset about insurance declining her on a cheaper policy and she had to fight them as she is very healthy; I simple said 'imagine having something like that EVERY day since 1995, it wears on you'.  And it's hard to get well when you have these 'burdens' -- it's hard to not get stressed out over money or pain or the other hardships.   

So that is why there is a batch of information on Lumigrate.com and we launched with the videos that ALL apply to people with FM/CFS; many also apply to all people including those who are well and wanting to stay that way.  So now, three years later,  half of our followers/users/guests/customers are healthy and half have chronic illness which is exactly what the US's population mix is.  So we've about got all the info needed about FM and now we're increasingly focusing on information for other illness prevention, early detection and remediation and etc.  

I am very sorry for EVERY case that I hear of where someone was being compliant and proactive and they get bungled in 'the system'.  Facebook has blessed us all with the connectivity to not stay in our own worlds and countries and it has been enlightening for me to see that different system like Canada, US, UK, Australia .... but SAME problems.  That means we don't need to be focusing on the political aspects of it, it's the industry/money end of it and where the doctors are getting educated and why they don't have the answers typically.  Just 2 months ago our local physicians were all inserviced about thyroid and they were literally told 'if they walk and talk just do TSH don't waste money on the other labs (for the way that you'd properly tease out hypothyroidism in a patient heading into CFS/FM).  I went bananas and got 'the team' to add on more information to a topic in the forums about T3/T4 and thyroid.  SO any patient or provider who happens to find it now can study up about it and then advocate for themselves to their provider or for their patients.  

So I hope that you ALL can benefit from the information at Lumigrate.com.  It has been a massive effort over 4 years and consumed my time, energy and money and along with life's dramedy from my family of origin that coincided with when Lumigrate launched, I have slipped many rungs on my recovery but I'm still 'okay', just very much on the slippery slope.  Working too hard is one thing, NOT working when it might mean that someone doesn't get their health benefitting them is another.  But I have in the first years, done a LOT related to Adverse Childhood Experiences and tried to weave my history into things as examples to hopefully help people learn and that was going back to re-visit and re-state things that had long been worked through and I believe that your thoughts influence your wellness (mind/body) and so I am going to be 'wrapping up' the package about fibromyalgia and not focusing on it as much and hope that will help my health get back UP the slope. And striking a better balance of work versus personal time.  

Truly, I've worked to get there to be at least enough to get a bulk that is what will help people who want to embrace mind/body/spirit integration and functional medicine going in the right direction. I believe a person, if they had the time, energy and computer to listen to all our podcasts, watch all our videos, read all in the forums that pertains to them, it would take about 100 hours.  And if the put into action over time -- years -- what is there that applies to them, they would likely get well in most cases.  Some might not even need to spend money on providers assisting them.... I helped someone 2 years ago who was told she wasn't going into FM to find the nutritional deficits and supplement and nutrition experts she needed and got an e mail from her a month or 2 later saying she was feeling 100%. 20% of people are on the continuum of having CFS/FMS, very few who have it even are diagnosed!  I find people all the time who think they have this or that and think that fibromyalgia is ALWAYS like your case, or how I was 10 years ago, which was REALLY sick, considering filing for disability and bankruptcy, I just was at the end of the fumes fuse and rope!  

And as soon as I got there the opportunities started opening up that created a job that gave me for a year, money, benefits and close proximity to the MD that did the heavy metals testing and somewhat knew what to do -- he was by far no Marc Spurlock who we have writing on Lumigrate.com but he was locally a resource.  He made as many mistakes with me as he did things right which had to do with his own state of mind and not really being 'right on' -- and I'm also responsible as I should have been thinking more but I truly was learning what I know now as I went -- The worst was that he didn't titrate me off of a huge dose of narcotic / benzo he insisted I be on for sleep, as he read that statistically you need 8 or 9 hours of sleep to recover from FM.  Well, most people wear a size 8 shoe too and I don't, so I think I didn't need more than six hours but who knows.  I parked myself in bed for 10 hours a night whether I was sleeping or not and took the medication he recommended.  

He also didn't catch that when I tried to rotate with Ambien I didn't feel well the next day (which I later realized was withdrawal from no narcotic), and on another time allowed me to ask about a medication and trialing it that was really outside of what I was needing and had he looked at why I was asking for it he might have noticed it corresponded with side effects of Lunesta, which is what he had switched me to and not titrated the narcotic. The detox from that caused me to be on the cusp of seizures and be so shakey weeks later still I was sloshing coffee out of a cup i was served by a patient when doing a home visit.  He just couldn't string together information it kind of boggled his brain it appeared to me... once he'd get into a good groove of what to do on things he often had excellent suggestions and he was doing the chelations and IV nutrition.  You know Myers Cocktails I think allowed me to have a career in OT I would not have otherwise. Milton Hammerly got me on those in 1997 when i was first and OTR and having to work at 5 am and that just got me going in the wrong direction with the adrenal fatigue again.  I did okay when at the VA on internships, I'd start at 8.  

That one bad medication, I literally collapsed with my jaw being the last thing to hit the floor -- I was really quite messed up short term from that.  Long term from the benzo deal.  And then 1/3 of the stuff just was not bad or good.  BUT the body's normal state is to strive for being well and so you can have wrongs going on and still make headway.  But it is SO time consuming, money consuming, energy consuming and  frustrating to have the challenges from it.  I found I stayed kind of 'stuck' not advancing spiritually or psychologically because I was putting in so much time/energy/money on thyroid, hormones, supplements, medications, injections (which was a full day based on where I live and how far away Vail is) doctors, walking, eating well, etc., that I was 'out of the loop' of where my peers were, and that is a lot of the socialization issues that happened for me at least related to FM.  

They all can talk about travel, I haven't had a vacation since 1995! (Flew to Vancouver, took a ship to Alaska and rode hybrid bikes at all the ports -- not thinking 'that might be too much for someone in adrenal fatigue as I... again.. didn't know what that was yet.   (I got FM but it was undaignosed and I don't think I'd gone to the doctor even yet in 1994 and I had gotten a LOT better from learning of the 3 foods I was allergic to and not eating them;  that's when the $ out for testing and docs insurance does not pay for started and deductibles and etc started just adding up.  Between the $ thing and the energy/activity/pain thing, it just separates you so much from your peers. You describe a particularly challenging case because of your neuro-orthopedic issues on top of the general endocrine issues, but those can be connected.  My DO says she sees it take about 2 months when a person gets their hormones in balance to see the laxity in the connective tissue change.  Naturally foods and etc have much to do with the adrenal/endocrine system.  

And meditation -- twice a day -- powerful stuff (and FREE), finding things to be appreciative of, even if it's that the air is clean and you can see the sun, not like in a big city OR (whatever).  ALL that kinda stuff -- forgiveness --- going from shame/blame to letting it go -- in the forums.  And truly, always am sorry to hear people going through this kind of thing . I hope my response has been helpful.  I might end up (anonymously) transferring this to the website as a case example/response.  Tomorrow.  I think I'm done with my little middle of the night sleep 'intermission'.  Again, I'm grateful today to not need sleep medication and to get 8 hours / might.  I would PREFER it be all at once as it ends up being a wierd schedule and cuts into my morning and then work day so that has contributed to my being down the slope too.  

As for what your system will pay for and not -- there is a forum on Lumigrate about political activism -- the #s/emails of our US congress/senate reps., examples from me in Colorado and Alice in Alabama of what you get emailed to you.  How to do an online petition.  Etc.  I know one woman in GJ who was about as sick as you sound to be and she put pressure all over the place and got some things for herself and others changing at the VA and she also got them to stop spraying pesticides to kill mosquitos out of fear of west nile. They were killing more people from the chemicals than they were saving from getting WNV.  HARD to do when you are not well, so look at that Lumigrate You model and think about creating a team around you that has someone on it that is your advocate/assistant possibly.   I have the SOPA/PIPA as the example on Lumigrate of what can happen when people got organized on line.  Just throwing it out there, and as they say .. Just sayin'...... We're all in this together and we have to help each other to get out of what we're in. WorldWide, not just the US but we need to do the same just within the US and each country too.  

Hope this helped! Take care! And I really appreciate your time and energy in writing! I hope this helps many more see the importance of this type of information and ACTION happens faster and more effectively for all involved. 

 GRATEfully -- Mardy