Friday, February 17, 2012

The (latest) diagnosis

It's always too early to quit. -Norman Vincent Peale

I know I have left you all itching for "answers" after my last two posts: Catharsis and The Toll

Ok, I'll admit, my first creative passion was/is writing so part of me did that on purpose. Yet, at the same time, I just couldn't launch into an explanation of my most recent diagnosis without starting from the beginning. To me, it would have been like having you begin reading the book 3/4 of the way through. But, now I've finally got all that stuff out of my system, it's time to share where I'm at in the here and now.


In my latest quest for "answers" I started researching Fibromyalgia. My uncle was getting tested for it (he also happens to share my birthday in some weird coincidence) and it seemed like the last frontier. As you'll recall, I've explored muscular, skeletal, hormonal and neurological and found no real answers for why my body seems to be continually failing me.

So, I went back to my doctor and told him that I thought it was time that we explored the possibility that something more fundamental was at the bottom of the things that have happened to me in the past seven or so years. 

No sooner had the words escaped my lips than he was pulling out a form and writing down requests for arthritis bloodwork. 

"I don't think it's arthritis," I said. (Which was me being polite because what I wanted to say was "If you think this is arthritis, you clearly have not been paying attention for the last 3 years I've been your patient!")  My husband has a form of rheumatoid arthritis, so I know what that pain manifests as, I've watched the progression, I hear his symptoms; they are NOTHING like mine. 

"Well, this is a fairly in-depth bloodwork I'm getting for you, let's see what it pulls up," he said. So I acquiesced, thinking that, at least, if I could rule out his initial hypothesis, I could get him to take the next step in really diagnosing me.

Haha. This is where I realize just what an overly optimistic person I really am.

The bloodwork came back as negative for arthritis. Thank God, yes, but at the same time unsurprising.

"So, what's the next step?" I asked, expecting him to suggest another litany of tests. Lord knows, he's never been reluctant to sign a test slip before that day.

"Well, all the markers show you do not have arthritis but there is one thing that came back positive, sort of in contradiction of all of that. I don't really know what it means but it could mean you have some kind of non-specific arthritis," he said. "That may explain the little pains you've been having here and there."


Are your freaking kidding me!?  Have you not been listening to me for the past 3 years? Have you not personally written three physical therapy referrals slips for different issues, performed x-rays, and had me come in every 2 weeks for the majority of that time for Osteopathic Manipulation? Do you think I am bored and need something to occupy my time!?

Ok, that's what I WANTED to say. What I actually said was: "Well, they're not little pains and they've actually been affecting the quality of my life. In fact, I would like a referral to a therapist to help me deal with some of the issues that have come up for me as a result of my chronic pain."

What I would have hoped would have happened at this juncture, you know, if this was someone who really gave a flying **ck about his patients, would be that the doc would pull himself up short and say something like: "Really? I had no idea it has been this bad for you. If it really is this debilitating, perhaps we should consider looking at some other things."

However, what he actually said was: "If you look on the back of your insurance card, you'll see a 1-800 number you can call."

And with that, he discharged me with prescription NSAIDs, which I told him I did not want to take because I didn't see how they solved anything and because I did not want to live a life of pill-popping.

Yes, this was the moment I mentally "fired" my doctor. (In a weird twist of fate, I received a survey for him just yesterday. I had a lot of fun completing it online.)

Soo.... having given up on the conventional medical community, I set about more Googling. As I've said before, I am well aware that this is a dangerous path because you can pretty much convince yourself you have almost anything/everything if you spend enough time reading symptoms online. Yet, the reality is that the web is pretty much all I have left at this point.

In Googling fibromyalgia, I came across this site:  and thought, pretty much, what the hell. With nothing to lose but an hour of my time and $50, I decided to make an appointment.

During my initial visit, Dr. Putman did some brain-function tests, analyzed the bloodwork I got from my doc, and did a full spinal and neck x-ray (something which, it hadn't occurred to me until that moment, had never actually been done before.)

A week later, my husband and I were called in jointly for a follow-up appointment.

First, as I have always felt, there is something(s) "at the bottom"  (or more specifically at the top) of my pain. 

The most concerning are some issues with my neck. In looking at the x-ray it was pretty alarming and obviously amiss. He said it was the worst case of neck issues he has ever seen.

To try and shorten the explanation, I'm going to share this image I found online. These ARE NOT my xrays.

One side (to the right) shows a relatively healthy curvature of the neck (the blue line is ideal, the red lines represent "actual" for this patient.) The left, shows how that curve has originally been lost and had started to almost go in the other direction. 

Ok, so look again at that image on the left and keep going... in other words, completely REVERSE a "C" shape. That's me. Curved 140 degrees in the other/wrong direction.

It's so bad that the doc asked me if I had ever had head trauma in the past. Gulp. (If you read up online, this is actually something that is more commonly associated with whiplash.) He was surprised that I was not having chronic headaches too. (Finally, something I don't have. Yet.)

Outside of being dropped on my head (Mum!?), this is the kind of thing that develops over years. 5-10 years to be exact, which is about right along the lines of when I began first experiencing shoulder and back pain.

The effects of this are both obvious and not-so obvious. First, the front part of my body is taking the weight of my head, which it is not designed to do (and we all know I have a big head.) Secondly, I am developing some unnaturally large spaces between my disks. The front part of my spine is compressed or pinched, as it is being curved in the wrong direction, while the back part is showing splaying of the vertebrae.  Third, it's pulling my thoracic spine (and of course everything else) out of alignment. Fourth, I am developing some mild degeneration (arthritis) in the joints. 

It's not completely correctible... it's too far changed for that. I will probably never get back to a natural curve in my neck but our goal is to get it back to, at least, straight. If I don't, by the time I'm in my 50s and 60s, I will likely have problems walking, maintaining balance, and have numbness and pain down my arms. Remember, your neck is the nexus for all those nerve endings that come up from different parts of your body, to your brain. So pretty much anything that affects your neck has the ability, over time, to affect pretty much everything and anything.

Next, I have a rotated pelvis. We kind of already knew this. Old news. Which came first? Who knows? Who cares at this point?

Next, I have a slight "s-curve" to my spine. It's also known as scoliosis but mine is not so bad as to be clinically diagnosed as such. But essentially, this is what scoliosis looks like:

Pretty, right?

Next, I have incredibly low oxygen profusion. What this means is that I have good oxygenation in my red blood cells but the oxygen is not being passed through the walls of my blood vessels to oxygenate my organs and soft tissue. The "normal" range for this measurment is 2.5 - 4.9. I am measuring... wait for it... 0.4. Again, gulp. I think we all realize your body needs oxygen to function. Mine is not getting it.  My brain and my body is basically being starved of the oxygen it needs to function properly - knock-on impacts to my overall system and to my energy levels. Apparently this is very common for someone who has been experiencing chronic pain for some time. Think about, when you're in pain or under stress, how you tend to want to hold your breath. Now think about subconsciously doing that almost every day for years at a time. (If you would like to learn more about the connection between oxygen and pain you can click here.)

All of these things, along with dealing with chronic and increasing pain for 5 years, are affecting my brain. The ongoing stimulous of "pain" is now expected and required by it. In other words, my brain wakes up every morning and searches for pain signals. How this shows up in my life is that, for instance, a hard workout that the average person would wake up and feel sore from the next day, makes me feel like I was just run over by a semi. (Nodding head.) More commonly, these are known as fibromyalgia symptoms. In addition, since my brain is overpowered by pain signals, and is starved of oxygen, it's affecting my memory (which has become increasingly and noticeably worse in the last 3-5 years) and my concentration - my brain tires more quickly/easily.

Still with me? I know, it's a lot to take in.

There could be more. He conceded that I have a chronic inflammatory problem running throughout my body that may or may not be related to all of this stuff but could also be caused and/or exacerbated by metabolic issues - in other words, food allergies, thyroid or something of the like. That is testing we'll have to do later.

Of course, the biggest question I had to ask was: What would the regular medical community do if they saw this x-ray? Would they recommend surgery? Physical therapy? I mean, how have successive doctors, physical therapists, and osteopaths who have physically touched and analyzed my spine, missed that my neck is curved in completely the wrong direction??

The answer is that the medical community does not have a way to deal with this until it starts to cause some of those more severe symptoms I mentioned earlier - loss of balance, function, and/or acute pain. Nice. I have to be all-but an invalid to get help. Not going to work for me.

Which leads me back to my path forward.

I am looking at, at least, 6 months of treatment to begin to try and address these issues. 3 days a week, an hour each of those days. A combination of chiropractic care, massage therapy, physical therapy, oxygen therapy, brain-based therapy, supplements, and some detox. So, with travel, 6 hours out of my work week, somehow. Oh, and let's not forget the thousands of dollars out-of-pocket. All of this is just a start. It may take a year or more to see real progress in my x-rays.

But how do you not do it? How do you ignore a degenerative change in the structure of your body? I think it's been clear to me, and most of you too, that I cannot continue to go on living with the pain I have been experiencing much longer without everything else in my life falling apart. 

By the time of writing this post, I have already had two treatments. 

The first one was pretty intense, with lots of DEEP massage and some alarming adjustments. It seemed to clear up neck and shoulder pain, at least in the short term, right away. However, the day after my first treatment, I tried to stand up from a stool in my kitchen and my right knee gave out a shot of pain that I haven't felt since I initially injured it back in September of last year. Now, unfortunately, I am back to not being able to walk up the stairs or stand up from a chair while bearing any weight on that foot.  (If you want the back story on the knee issue, check out this post here.) After 5 months of following my P.T. to a "t" and getting to a place where my knee almost never bothered me anymore, it's pretty disconcerting to feel I am back to square one here.

I told the chiropractor about the relapse today at my appointment and he said that I might expect to see some other issues periodically dissipate, flare or rise up as they begin to realign my body. Which makes sense but doesn't take away the despondency associated with going backwards in something that you've worked hard to make progress in., especially when that one area prevents you from performing other exercises that help other areas of your body! 

As with almost all my symptoms, it's not like I did anything strenuous to cause the issue to resurge. If I had, at least I could concede that I shouldn't do "that" for a while. But I'm pretty sure that there's no way to avoid sitting down and standing up.

Now you're brought up-to-date. That's the latest diagnosis. I don't want to say it's "the" diagnosis because I have made that mistake about ten times in as many years.

I'll update you as my treatment progresses. 


Joe Bennett said...

These last two posts of your were great and incredibly informative. I recently started having some shoulder problems, and nothing was making it better... no aspirin, motrin, etc. No "toughing it out". Finally went to a chiropractor, and luckily, things have gotten better. But like you, it was actually seeing X-rays showing my spine, my shoulder, the curvature of the neck, everything that I started to have some "a-ha!" moments.

Again, nothing like what you have gone through, but I felt like I could relate in some small way.

And, like you, I have never, ever, ever gotten anywhere with a doctor. Hell, I haven't even *seen* my doctor in several years, just his PA. I have had a small knee problem from an old soccer injury, but when I mentioned it to him, thinking maybe I could get an X-ray or an MRI to see what is going on, he instead suggested steroids (thank you, but if you aren't going to really diagnose what is going on, because in order to get paid by the HMO/PPO you have to see 4 patients and hour and can't recommend any specialty services or you will be punished by said HMO/PPO, then we're done here).

I totally laughed at your Googling comment! I think if you Google long enough, you will find you have cancer :-).

Good luck with your treatments! I think you are finally on to something. You may have finally found the thing that will give you actual "health" care. What you were getting from your doctor was more "sick" care (here's some pills for this sickness, and then pills for that sickness, etc.)

Do keep us informed. You write in a way that is very enjoyable to read.

Vickie Horvath said...

It's difficult to imagine what you and your body and been thru over the past years. Your determination to find the answers is evedent in your posts. Stay the course and I am confident you will find the answers and the treatment that will work for you. All my love my dear

e said...

This all makes sense. And as annoying as it all is to have to do, it is likely good news. Like you, I am cautiously optimistic. There is no question that we alone are in charge of our well being, so we might as well accept that the answers are likely out there, we just can't rely on our doctors to find them. I hope you will have time to give us updates, and if not, I'll just be calling you up on a regular basis.

Anonymous said...

For more information on oxygen and the body I would actually recommend this article:

It's a bit more detailed than the one you linked to.

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