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May 14, 2014

Hope in the Nightmare: "Fibromyalgia" Is Just a Label

As you may know by now, Monday was Fibromyalgia Awareness Day, so I am taking the opportunity to devote this week to some long overdue posts on my health issues and related items that I am dying to share, particularly with those of you who are also sick.

On Monday I caught you all up on my story from the beginning of my health problems in 2010 up until this past fall. That is where the plot twist entered that I want to share with you all. With this special week, I don't only want to help spread awareness for the realness of the suffering that those of us diagnosed with Fibromyalgia go through--I want to also do everything I can to spread knowledge of how I have been helped and how those of you who are sick and living in absolute misery can be too.

When you have a chronic illness, it's understood that healthy people really aren't quite sure how to respond to you. They want to help but don't know how, so we're often on the receiving end of all kinds of unsolicited (and often very misinformed) advice. 98% of the time, the suggestions we hear from well-meaning friends and relatives are things we've heard over and over again and either things that we have already tried, things that we are currently doing, or things that are just plain crazy/not applicable to our problems at all. (Sorry... it's true. Spoonies give me an Amen here...)

But the hope that fell into my lap last fall actually came through the hands of a family friend: a DVD a friend gave her about Fibromyalgia. That was all I could tell from the picture on it, and I let it sit for a good couple of weeks or more before finally watching it. I was, honestly, expecting more doctor crap about Fibromyalgia and just a basic education of it, medications to take, blah blah blah. It was, however, a presentation by a semi-local chiropractic physician who specializes in helping people with chronic illnesses through the use of functional medicine.

This DVD entered my life at a time when I had reached my worst health yet, and it seemed that would just continue to progress. As I mentioned on Monday, I'd tried the usual medications and none of them helped enough to stay on them. I was miserable and feeling quite useless, and each day was a horrible struggle of its own. My husband and I had been hoping to find a specialist once we moved closer to a big city, whenever the job search cooperated long enough for that to happen, so to find someone who might possibly have a clue how to really help me only 45 minutes from where we live was totally unexpected.

Open to any help possible but still very skeptical about this doctor's credibility, I made an appointment, filled out about 13 pages (no joke) of details about all of my problems (there still wasn't a place to account for all of them), and went to my first appointment in October of 2013. As it turns out, this (young-er) doctor was diagnosed with MS a few years ago and became so sick that he was in the hospital and unable to do anything. He found a doctor like he is now in Texas who helped him so tremendously that you would never know he had any trouble getting around and thriving now. As he puts it, he has one or two bad days a month, so he is not cured, but he has maximized his body's full potential. (And based on his schedule everyday, his full potential is pretty crazy.) So he came back to his home state to help others like he was helped.

At my first appointment, he tested how my brain controlled my body by seeing how I handled standing with my eyes closed (I weave back and forth, which I didn't know), how my eyes handle being closed (my eyelids twitch uncontrollably, which I did know), if I could touch my nose with my pinky while standing with my eyes closed (I'm very bad at it), if I could touch where he first touched my arms with a pen while my eyes were closed (failed miserably), among lots of other such exercises, which I often failed. Based on all those tests, some very in-depth (not your average) blood tests, and the very specific, in-depth paperwork I filled out, he was to get to the bottom of my body's problems and report back at my next visit.

By this point, my confidence in his credibility was improving. We came in the next time to a white board displaying an outline of my problems and handouts of all of his findings and proposed treatment. This is no come-in, get-something-prescribed, get-out doctor. He focuses on finding the root cause of your problems and treating each of them individually, no matter how many there are. And all of this is done not with the goal of curing you but, as he put it, to make your number of bad days trade places with your good days. If I could have 28 good days a month, I'd gladly take it.

Here is (some of) what we found is wrong with me:

Structural problems: Vertebrae issues, muscle spasms, pain, loss of range of motion, and "pinched" spinal nerves.

Neurological problems: Including issues with my cerebellum, issues with the communication between each hemisphere of my brain, blood sugar imbalance, serotonin imbalance, and dopamine imbalance.

Metabolic problems: Including dysfunctions of the colon, stomach, small intestine, and liver/gallbladder, along with blood sugar issues and thyroid issues.

Basically (and in addition to the big words used above), I have an autoimmune disorder, am pre-diabetic, pre-Hashimotos, and pre-anemic. The sides of my brain aren't communicating like they should. I have adrenal fatigue, my body's ph is acidic, my spine is misaligned (one leg had become longer than the other), and my oxygen levels were very, very low, as in, a few more points down and I would have been in cardiac arrest. A thorough allergy test showed that I am not really allergic to all the foods I thought I was, such as potatoes, apples, and peaches, but rather my gut is so damaged that it was sensitive to everything and my body would react like I was allergic. (I basically was experiencing stomach pain every time I ate, even though I had removed gluten from my diet for the past two years--the damage it had caused had not been healed.) And another test found that my cortisol levels are the complete opposite of that of a healthy person, resulting in my reversed sleep cycle (basically living on night shift).

There were so many separate things wrong with me that I can't even remember them all, and I left the appointment saying that it's a wonder I ever got anything done. Basically, I'm a lot sicker than anyone realized.

The suggested treatment was to come in 3 days a week for the first few months, then down to 2 times a week for the rest of 6 months. My treatment includes: spinal adjustments, oxygen therapy, acupuncture (my body is so out of whack, it literally couldn't handle it, so he had to switch to laser therapy instead), the Repairvite Diet to repair my gut and the Clearvite Diet to detox my system (both of which you've probably seen me refer to on here, as most of the recipes I share follow those), and numerous supplements to help things like my stomach acid and cortisol levels (not all at once of course) including but not limited to Vitamin D, Gastroven, Digestase, Quinol, Max B, Green Tea Extract, Glutathione, Adrenacalm, Adaptocrine, Premier Greens, and Dermavin.

Typically most people are on the Repairvite Diet for a couple of months. I was on it for five because we kept encountering so many new issues, like unexplainable, new stomach pain that finally went away and a suspected allergic reaction to one of the supplements that put me in the ER for about the fourth time in less than six months. As time went on, we've discovered it probably wasn't an allergic reaction but rather just my body reacting to a full dose of a new supplement it wasn't used to--I am that sensitive. So when I'm to take one teaspoon of something a day, I have to start out with 1/8 of a teaspoon for a few days, then a little more, then a little more, until I very gradually reach the full amount, just to let my body adjust to it. This has caused my treatments to be dragged out like crazy and basically brought me at six months where most patients would be by 2 or 3.

By a couple of months into my treatment, once my body had thrown us a few unexplainable curve balls, including Chapman's Reflexes and later Herxheimer's Reaction in response to the detox, my doctor finally admitted, just honestly not rudely by any means, that I was the most difficult case he'd treated yet in his nine years. New issues I would encounter were things that he would discuss with colleagues and find they'd never seen such things before either, like my reactions to supplements. It was kind of a relief to hear that, since I had wondered. He has helped so many patients who weren't even functioning, in such a shorter time frame than I was taking, so it was discouraging why my progress was so terribly slow. It comes down to the fact that my body is just incredibly sensitive to everything. So I'm definitely a challenge for him, but neither of us are close to giving up yet.

We very recently discovered through another blood test that I have the MTHFR gene mutation, which inhibits my body's ability to metabolize folate, which is essential for your body to function properly. If you've never heard of this, even if you're familiar with chiropractic treatment, it's because this issue is something only recently coming to light in the health world, and we're hoping it's a big piece to the puzzle in my journey to better health. You can learn more about it here.

I've now been doing treatment for more than six months and am still going, since the work's not done yet. I did honestly expect to be much more improved by now than I am, but you never know how your body might respond, and mine is extra stubborn. Yet I honestly am improved, which I'll talk more in depth about tomorrow.

So where does this leave my diagnosis of Fibromyalgia, if it turns out I have 62 nameable, describable, treatable problems? I have come to truly believe, as does my doctor, that "Fibromyalgia" is just a label that doctors give to people with more problems than they can or want to attempt to help. Your average doctor doesn't want to see the same patient three times a week for six months, work with them, analyze every single part of their body system, determine exactly what dysfunctions are occurring, and treat them all individually, patiently, and thoroughly, no matter how long it takes, without a single prescription. The average doctor wants to prescribe you something to make you "feel better"--just enough to get you through--and send you on your way.

So when I say I have Fibromyalgia now, it's just easier than explaining all of the above. I have "Fibromyalgia," but to me that means that I have a few dozen treatable problems all ganging up on me that we have now identified and can truly begin to combat.

No, I am not saying that everyone who has been diagnosed with Fibromyalgia or CFS has the same 72 problems I was found to have. But I am saying that I firmly believe everyone who has been diagnosed with Fibromyalgia and CFS has their own unique combination of structural and/or neurological and/or metabolic problems that are all teaming up to absolutely ruin their health. The term "Fibromyalgia" is a cop-out.

When I found out all these things that are really wrong with me, that they are treatable, and that I could very likely gain at least some quality of life back, I wanted to shout it from the rooftops, aka on every social media platform I can. But as I mentioned at the beginning of this post, we chronic illness sufferers hear so many suggestions and guarantees at help or a quick fix that I really don't know that anyone would listen to me. We're jaded from all the crap thrown out at us. But I must share this hope that I have found.

This is not a quick fix by any means. As my doctor says, it's a marathon, not a sprint. And that's pretty clear considering we're still working on me more than six months into treatment. It's time-consuming, as we have to drive about an hour and a half round-trip to get there, at first three times a week, then two, and lately we're down to one based on different factors. It's not cheap, as insurance doesn't like to cover things like chiropractors and supplements that can actually help root causes--they only want to pay for prescriptions. It's a major commitment. But when you are completely miserable and think you have absolutely no hope of help and that you will be just as miserable as you are today, every day for the rest of your life, and then you find out there actually is real hope and real treatment out there, every penny and every mile is worth it.

I know that every body is different. But I would not share this experience of mine if I didn't truly believe that every single one of you with a chronic illness would be helped even a little if not immensely by the same kind of treatment I am now undergoing. Even if you haven't been diagnosed with Fibromyalgia or CFS but deal with other problems like back pain or migraines, I beg you to find a chiropractor like mine who truly knows what he's doing--you will find such relief.

You can use this handy link I found to locate a chiropractic physician like mine near you. No, I'm not getting compensated in any way to share this info--this is my story that I wish I could share with everyone dealing with a chronic illness because it's not common knowledge and not the norm for treatment--yet--and I feel like I've discovered a gold mine that I must share with all of you. I truly hope you'll look into it and give yourself a chance to be treated by someone who can actually help you. And as rare as my unexpected difficulties have been in treatment, there's a good chance that you can be helped even more than I have so far or even more swiftly than my body has been.

I know this post is the longest in the history of the world, but it still doesn't even include why the problems I have are problems, and even more issues I'm dealing with and treating. I hope to share some of those in future posts, and I'll be back tomorrow with how I am doing since my treatment began, but for now I will leave it at this: If you've been diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, or any related chronic problems, from headaches to thyroid issues, please seek out a doctor like I've described. There really is hope for you!

(If there's anything you have questions about or want more info on, please feel free to comment or contact me!)

P.S. Linking up with Be.You.Tiful Link Party, Wake Up Wednesday, Lovely Thursdays, Fab Favorites, and Link Love.


  1. Where to begin....I'm so sorry for the pain and discomfort and frustration that you are going through. I hope with this new doctor you see a change. I love that in depths of all of this you are still focusing on sharing your story in hopes of helping others.

  2. I hope you are well on your way to feeling better with the treatments that you've been undergoing with this doctor! My husband's a nurse and he's always said that he thinks the diagnosis Fibromyalgia is a cop-out, that it's just something doctors diagnose when they can't understand what's wrong.

  3. Hello. I understand what it is like to have a chronic disease. I have Ehlers-Danlos Syndrome, a connective tissue disease which causes knots in my muscles, dislocation of joints, and chronic pain. I feel for you and can empathize. Have you tried Epsom salt baths? I also use a product called Sombra for muscle pain, it is a cream I rub on my legs. The salts in the bath help with muscle cramps and pain, and I take 2 baths a day. PT is a must. Best wishes with the doc. One of the most important things is to be proactive in your health, I am sure you also know that. I would love to follow you on bloglovin and thought perhaps you could follow me as well. ?
    Please stop by



  4. I think I'm not sure what to say, I'm sorry for the pain and suffering you may be dealing with. In fear of saying the wrong thing since I'm pretty much ignorant in all things medical, you will be in my prayers. I guess that's really all I can say! I mean it, I will pray for your body, health, mind, and anything else you may need. Thanks for sharing your story, I believe it will help others!! God bless ;)

    XO, Claire


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