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 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! 🙂
Tired And Tachy 