Stress…Scoliosis…Spondylitis? (Chronic Pain Story)

If you remember back in my first post “A Journey Begins Pt 1” I mentioned how all my illness’s seemed to start at once… and my chronic pain is another thing that seemed to appear all of a sudden after my forehead injury in 2010.

Shortly after that injury occurred, I began getting muscle spasms in the trapezius area in my back/neck.

If you don’t know where your trapezius is, here is a diagram:

The muscle spasms kept getting worse and worse, and continued to increase in frequency, and moved to other areas as well.

It wasn’t until I was 15 (2 years later) when I finally sought treatment for them. I went to my “family dr.” first, who said it could possibly be fibromyalgia. Since I wanted to steer-clear of medicines as much as possible (because my brother had a brain injury from a medication, I think I’m rightfully hesitant).. I was mostly just using muscle creams (ex: icy-hot) and a heating pad and stuff, so she gave me a prescription muscle cream with lidocaine and it was supposed to work great!

Well, it didn’t help one bit..

…I couldn’t even tell it was on!

Next I saw an “electrodiagnostics” dr. who, of course thought it was stress/anxiety- and suggested an antidepressant. On the paper, however, it was listed as “unspecified disorder of muscle/ligament/fascia.”

After that I saw a rheumatologist and got blood-work/x-rays, and this dr. said he thought he saw “bulging discs” on my x-rays. He suggested I get an MRI (but insurance wouldn’t cover it…) I tried 1 week of Celebrex (didn’t work) and he suggested I try magnesium malate (I never did try it.)

…

Wondering if my scoliosis could be to blame (and because my actual spine was now hurting)  I then saw a scoliosis specialist. He pretty much just laughed, because it wasn’t that bad, and said it was not the cause of my pain, but that texting and slouching and just being a teenager was… I was given neck exercises, and told to do them multiple times per day. Well, guess what?… I did!

And guess what else!

…

It didn’t work.

My x-ray at scoliosis dr. The biggest curve is ~16 degrees.

A chest x-ray I recently had (for dif reasons) You can see the curviness!

 My pain continued to get worse.

After that. I gave up on the search for a diagnosis for a while… (2 years to be exact.) and just tried to manage it with muscle creams, a heating pad, and occasionally some Advil.

With it continuing to worsen, I sought the treatment of a chiropractor and did TENS therapy a few times and had an adjustment once; but none of that helped either. I then tried physical therapy a few times, but each time it left me in 10x the pain I was before! 😦

Then in November 2015, (also when the journey to my POTS diagnosis started ) I went to a new family dr. I told her of my frustration with struggling with this pain, and how I wanted to get a diagnosis… and she flat out told me I might never get a diagnosis. She ran some more blood tests and diagnosed me with a vitamin d deficiency, and my protein was elevated so I was “probably mildly dehydrated” (and that is why I’m in so much pain, and my spine hurts?…) but besides that the bloodwork was fine, and this dr. said it was probably stress- and suggested the antidepressant again! After sending a message to her one day when I suddenly developed jaw pain in excruciating pain again in my low back and knee’s (after a pretty cold night) she said “I don’t know why you’re having these symptoms..” and referred me to another rheumatologist.

Rheumatologist #2 – Finally a diagnosis!

…

If you’ve lost track, we are now at 7  dr.’s! (including chiropractor and physical therapist) I saw dr. #8, another rheumatologist on January 28th, 2016. I cannot even describe how much pain I was in at this appointment… It just so happened to be the first day of another “pain episode” and I was miserable. I had to keep rocking in my chair because my mhm, butt… hurt so bad!

What seemed like an eternity later, the dr. came in the room….Immediately he seemed to know what was wrong with me!… (and hint, it wasn’t stress!)

He called it an “undifferentiated spondyloarthropathy” before he could officially diagnose it. First, he had to order more blood tests for specific arthritis things, and x-rays. In the meantime, he had me try taking 2 Aleve, 2x per day. Well, that didn’t go over too well…

Around day 7,  I started getting sharp pains in my stomach (among other things). I had my mom call the dr. and they had me stop the Aleve immediately, and told me to go to ER if it happened again or if I started vomiting blood… (Thankfully I never did!)

On February 25th, 2016,

I was (officially) diagnosed with Ankylosing Spondylitis.

I was so glad to finally have a diagnosis!

Although, I was soon questioning the validity… My hla-b27 test (the one that normally diagnoses AS) came back negative. He explained it could be that I have a different genotype effected (like hla-b30 for example.) If you search this though, something like 90 percent of people with AS have the hla-b27 genotype. My rheumatoid factor was also 14, and normal is < or equal to 14. so it was “borderline” and with Ankylosing spondylitis, its supposed to be negative.

…

So, I’m not sure if this is exactly what I have…. But I think we at least seem to be in the ballpark!

If you don’t know what Ankylosing Spondylitis is, its basically arthritis of the spine and sacroiliac joints, but it can also effect other joints like the knees and hips. If it gets severe enough, it can cause your spine to fuse together and cause “bamboo spine.”

you can read more about it here –> http://www.niams.nih.gov/Health_Info/Ankylosing_Spondylitis/default.asp

I also told this dr. about how I’m constantly getting swollen painful lymph nodes in my throat (especially when I have the muscle pain) and said it sounds like chronic fatigue syndrome and he wanted me to see a certain specialist in for it. (I haven’t done that)

…..

I tried ONE more medicine after being diagnosed (before this dr. actually left the practice and went somewhere else. ) its called Sulfasalazine. It’s a DMARD, or Disease Modifying Anti-Rheumatic Drug, which I guess is the next step after NSAID’s. I’m bad at swallowing pills. (…like really bad.) so the dr. had them turn it into a liquid form. It was the weirdest thing…It was bright orange and looked like paint!

( but thankfully It did not taste like paint…) 😀

Unfortunately, this drug made me very sick. And on top of it, I was also having a bad reaction to a beta blocker…

I couldn’t leave my bed for 3 days.

……..

I’ll need to see a rheumatologist again in the near future, but thankfully I haven’t had many pain episodes recently! 🙂

EXERCISE: My Old Fre-nemy (Pt 2.)

In fall 2011 (9th grade) after I had already moved to Florida, my younger brothers joined a soccer league! Completely the opposite of up north where you can only play in the summer, soccer here lasts from fall to spring. Going to their games and practices reminded how much I missed it, and wished I could join them.

But in my mind lingered the memories of my inability/ inadequacy.

I decided to go to a brick-and mortar- school (a charter school actually) for half day. I stayed in virtual for the rest of the day. They use computers for the work, so it was essentially a virtual school, but with fun extras like gym (ok, not gym… 🙂 ) and art. I LOVED art class.

How does this tie into exercise?.. Well, this one project we did, I got to express my love for soccer. We painted picture frames, brought in pictures for them and hung them up in the cafeteria/art room.

Here is my picture from art.

 

Sure, I could have joined a league or team, but I was concerned I wouldn’t be good enough, and I wouldn’t be able to run … Eventually, I just accepted the fact that I would not be able to play again.

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But at 17, I found a way to get involved! In the spring of 2014, I became an assistant soccer coach! 🙂 I got to help my mom out, who was the head coach of my brothers U9/10 team.

 Then, in the summer of 2014… I decided I would give soccer another shot! 🙂

My oldest brother and I would go outside to our community soccer field, and train as much as possible for as long as I could handle, even if it was only for a few minutes. I was DETERMINED to get in decent shape to play!

In the Spring of 2015, I was finally old enough to join the adult soccer league, that my parents had been playing on! I wanted to join that instead of joining a team for my age  because that way I wouldn’t be judged by anyone…

Plus its a very relaxed environment so I could stop anytime I wanted/needed to. But I surprised myself, and most of the time was somehow was able to last the whole game!

In March 2015, I also became a head soccer coach! 🙂

I’m not going to lie- it wasn’t easy being a head coach. (and not just because it was a U5/6 team… ) It wasn’t even my any of my brothers teams either- but they needed a coach. I ended up coaching my youngest brothers team for 2 seasons after this!

There were lots of days I didn’t want to show up because of how bad I felt… But I did anyway, and always tried to put a smile on my face 🙂

The last season was the hardest (spring 2016), as it was during the time I was trying a lot of medications after my diagnosis…(in Jan 2016.)

……

But before I share the story of my diagnosis of POTS,

I would like to share another part of my journey, that started around the same time as this (after the forehead injury.)

…

See this story next in “Stress…Scoliosis…Spondylitis? (Chronic Pain Story)

EXERCISE: My Old Fre-nemy. (Pt 1.)

In “A Journey Begins Pt 1.” I mentioned that May 25th, 2010 might not be the day when my illness’s started. That, I do not know for sure. What I do know, is that I have always had “exercise intolerance.” For as long as I can remember… I have had extreme difficulty with even minor exertion.

I remember in elementary school gym class, we would run laps in circles around the gym, and I would be so out of breathe and nauseous by maybe the 2nd or third lap, and I would have to stop. I remember I tried telling my teacher why I couldn’t continue, and I just explained to her it was from my acid reflux. But I think I knew there had to be more to it… I remember my grandmother took me to get tested for asthma. I ran on a treadmill for one of the tests, and had to blow into a machine for another. Lastly they brought me outside, and had me sprint back and forth on the sidewalk. I remember struggling to complete all of these tests, especially the sidewalk. When the dr. spoke to us, he said I was “borderline” asthmatic, and gave me an inhaler to use. ( I actually never used it.)

I’ve always loved soccer. But unfortunately, soccer and I have never had a good relationship.

I started playing at age 7. I remember one of the first seasons, I wanted to score a goal SO bad. If I did, my parents agreed to buy me this “Hulk hand” toy that I had been wanting. Well, I never scored a goal…

…I was never one of the good players.

How could I be, when I had the hardest time running?…

Pictured Here: Age 7 left, Age 8 right.

 ……….

I played off-and on up until about 6th grade, and then I quit.

It’s not that I didn’t love soccer…

…I’d given up.

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Shortly after moving to Florida in May 2011, I went to the beach one day with my family. Strolling slowly and carelessly along the shore, I bent over to pick up a seashell. When I stood up, I instantly got extremely dizzy, lightheaded and disoriented. I got so scared,that I started running away from the beach and my family chased after me.

…

I went to the ER, and of course they didn’t find anything wrong…

 

More in “Exercise: My Old Fre-nemy (Pt 2.)”

A Journey Begins Pt 3.

Months after the head injury, yet another strange thing started to happen…

…One day, when I was the in 8th grade (2010/2011) I had just gone to gym class. I got changed into the schools uniform (a lovely heather-grey t-shirt with navy shorts, with my name sprawled across the bottom corner) …So fashionable! But anyway, I stepped into the gym and everyone lined up in several groups to do our warm-ups (or whatever they were called…) I was in the front of the middle group. Just as I started to do the lunges, I got lightheaded and dizzy. I kept going, even though I was dazed and “out of it.” When it came time to do the high-kicks, things really got bad. It felt as though I was floating, I got tunnel vision, and my heart was racing. I remember crying when I got home, as I told my mom what happened.

These “attacks” ended up happening more and more often-  until It got to the point where I was having them ever couple minutes ALL DAY LONG.

 

At some point my teachers were told I was possibly having absence seizures, and to watch me closely for them (talk about awkward…) I went to a neurologist, who did some test where they put electrodes all over your head, and they had me lay down and flashed a blinking strobe light in my eyes (some kind of test for seizures) and that was normal.

I ended up leaving school towards the end of the school year, and switched to Virtual School, for two reasons:

 1. Because I was so miserable with the “attacks”

and

2. Because I was moving to Florida…

….

next -> EXERCISE: My Old Fre-nemy pt. 1

A Journey Begins Pt 2.

WARNING: If you are squeamish, I suggest skipping forward to pt 3…

 

A few months passed after my head injury, and that’s when something strange began…

…I started vomiting.

The first time this happened I believe I was actually sick with some virus.  I was going through a “rebel” phase (and not washing my hands after going to the store for instance.)

…Well a big mistake that was.

After that, I started to puke on a monthly basis it seemed. (and by started to puke, I mean I would throw-up only once -out of the blue- and be done with it.)

I remember one time, my grandmother had taken me to the mall and out to eat, and I wasn’t feeling right, and as I was sitting in the restaurant I really didn’t feel good… I ordered a milkshake just to order something, and could only force myself to drink about half of it. As she pulled up to the house I remember bolting out of the car, running upstairs….and yes, puking…

This would happen several times after that, without much more warning than a lump in my throat. I was diagnosed with acid reflux previously (as it runs in my family) 

After visiting my gastro dr. they decided to do an Upper GI endoscopy. I was beyond terrified.

(Update, through the wonderful world of facebook “memories” i determined this test date was Dec 2nd, 2010.)

The day of the procedure, I was so scared. I literally was crying all the way there, and in the pre-op… I had never been under anesthesia before, or in a hospital really… so I had no idea what to expect.

I was sitting up on the table when they put the anesthesia mask on, and I started to feel dizzy, a few seconds passed before they asked if I was lightheaded yet, and I nodded my head like uhm, YES?

…so they hurried and laid me down and that’s it, I was out. You would think waking up would be like waking up after taking a nap right? (Like gradually opening your eyes and such?)…Well it wasn’t. It was like someone flicked a light on, and my eyes were open. Really weird.

I can’t even tell you how dizzy I was. Even after recovering for a while, and even when I got to go home. Let’s just say I’m glad my mom had them give me anti-nausea meds before I woke up..! My upper GI came back normal, and no one could explain why I continued to keep puking..

….

..It went on for a few months, but subsided shortly before I moved to Florida In May 2011.

 

More in “A Journey Begins Pt 3.”

A Journey Begins Pt 1.

I don’t know for sure when my illness’s started…

…I know they all seemed to “appear” at once… But one day sticks out in my mind…

May 25th, 2010.

It was a beautiful, sunny day at my home in Pennsylvania. I remember somebody had come over earlier in the day to “hang-out.” I vaguely remember going on the swing set, the slip n’ slide, and in my hot-tub. As the day went on my friend left, and my brother had 2 of his friends come over to play some golf at the top of the steep hill in our backyard. Still dripping wet in my bathing suit from the hot-tub, I decided to join them. As his friends and I picked out our golf clubs and neon golf balls and tee’s, I stood behind my brother (at what seemed like a good distance.) just in front of the fence. He grasped the driver tightly in his hands…swung back…

…and BANG!…

…I was screaming as I bolted down the hill, dripping blood; with my hand cupped on my forehead, before I even could comprehend what just happened.

I ran across the pool deck, leaving droplets of blood in my trail, and darted inside to the downstairs bathroom. I slowly removed my hand to a scary sight- I could see my skull in the mirror! The skin had basically exploded, and I was left with a small, gaping hole over my right eye just above the eyebrow. I cupped my hand over it again, and ran towards the stairs, where my parents came running. I released my hand, and watched as my horrified mother ran and called for an ambulance. She grabbed a dish rag as they told her to keep pressure on it. I remember she kept telling them how it wouldn’t stop bleeding….It seemed like forever until the ambulance got there.

When they arrived we met them on the front porch. They asked if I had passed-out (thankfully I did not.) One taped a large gauze pad over it, as the other said I needed to go the hospital. I wanted my parents to just drive me, but after some convincing by the paramedics, I finally agreed to ride in the ambulance.

By this time, my neighbors and neighborhood friends had all come out to see what was going on. I was strapped onto the stretcher as they watched, and with my mom on board off we headed to the hospital.

When we got to the hospital, I don’t know if we just happened to run into her or what, but I was so happy to see my aunt who’s a nurse there! I remember as we were waiting for me to get an MRI, she went to see if they could move me up so I could get in sooner. 🙂

I ended up getting 7 stiches after the dr. figured out how to sew the skin on my forehead back together again. I really was lucky it wasn’t my eye!

…

And that- well, maybe-

… was only the beginning of what would turn out to be a long journey of doctors, misdiagnosis’s, and strength to get through it all.

 

More in “A Journey Begins Pt 2.”