The Worst

As a part of the undiagnosed ridiculousness that I live with, I experience a variety of pain:

• plantar fasciitis
• ankle pain (not otherwise specified)
• patellofemoral pain (knees)
• hip pain (not otherwise specified)
• degenerative disc disease (lumbar)
• hand pain (not otherwise specified)
• sciatic nerve pain
• and probably more that I really just don't want to think about right now.

But the worst pain of all is the neck pain.

I could feel it coming on as I went about my day on Saturday.  I should have paid more attention to the little twinges of pain shooting from my skull down my arm and back, but they were only "little" twinges and so I ignored them.  I should have immediately embarked on a quest to quash them with strong doses of anti-inflammatories, muscle relaxants, hot packs, and Bengay.  But, as I said, they were "little" twinges, so I ignored them.

Sunday they refused to be ignored any longer.  I woke up before my alarm (after having a miserable night's sleep) with the pain pulsating, ripping through my body every time I moved, and rendering me unable to do most things for myself.  I couldn't lift my arms above anything that moved my elbows away from my sides, not even to get a cereal bowl from the cupboard.  Bending to lift the milk from the fridge and holding it to pour it would have made me scream.  But I needed food in order to take the massive amount of anti-inflammatory that I should have taken the day before when I could reach the cereal bowls and lift the milk.

Enter my superhero--Sir Husband the Wonderful.  He spent the morning bending and lifting and carrying for me.  He poured me a bowl of cereal, got me my box o' meds, and brought me the Kleenex box when the crying-from-pain started to impair my abilities to see and breathe, much less eat.  He helped me get my clothes, smothered me with Bengay, and brushed my hair (some, anyway.  I know I was asking a lot).

I wasn't able to do anything yesterday.  I couldn't knit.  I couldn't read.  I couldn't watch TV.  Everything was uncomfortable.  Of course, soon the meds kicked in and my brain abandoned me.  The combination of multiple bottles that caution, "May cause drowsiness" is usually marked drowsiness.  I was loopy.  I was out of it.  Of course, after adding a sleeping pill to try to just knock myself out to make the pain and loopiness go away, I received an email that needed prompt attention (or at least an "I have received this email and will get right on that... tomorrow, when I can think again" response) and could barely keep my eyes open long enough to register that what I was typing was not showing up properly on the screen.

I slept moderately well last night--better than I do most nights, but not as well as I expect to when I take a sleeping pill.  This morning, the pain is better than it was yesterday, but still a powerful presence.   Sir Husband is off slaying dragons (working), so I'm on my own today.

I hate when my neck hurts.  The last time it hurt this badly (right before my birthday a year and a half ago) I ended up going to the ER at 4am.  I can't do anything, like I said above, but even more so, I can't do things like shave my legs and wash my hair.  I have to rely on others to help me so that I can get food and put on a sweatshirt.  And I can't just sleep because I can't find a comfortable position laying down (unless, of course, I am just so medicated that my eyes won't stay open anymore at all and I'm incoherent).  I never know when it will strike, but when it does, my life comes to a screeching, agonizing halt.

To add insult to injury, I don't even know what causes it.  The ER said "myofascial pain."  My GP at the time said "pinched nerve."  My rheumey says, "I'm not worried about it."  Oh, yes.  He's not worried because it's not causing damage (so far as he can tell without running x-rays, MRI, or any other test other than physical exam) and still responds to the treatment (eventually.  After being miserable for a few days.  But does he care?  No).  To me, this says that the problem is recurring.  That means something is wrong and it's just going to keep coming back again and again.  I don't know if it will get worse, but without treatment to actually find and fix the problem, it can't possibly get better.

I suppose that the responsibility really is mine, and that I ought to call up my new GP (gotta meet her sooner or later anyway) and be the squeaky wheel.  SIGH.  I'm not in the mood to be in more pain though, and that's what driving, sitting, and then being poked and turned and bent will do.  

What's in a Diagnosis?

Diagnosis.  For me, this is a very complicated word with a very complicated history, and I wonder how to begin... at the beginning, I suppose, but just where/when was that?

We might say it began when I was fifteen, ten years ago (2000).  I was in high school and finally hitting a major growth spurt that took me out of boys jeans and training bras into woman's size clothing.  Unfortunately, that same growth spurt made me grow six or seven inches in three months.  Not only did my wardrobe not keep up, but neither did my knees.  Knee pain haunted my days, and shadowed my later high school years.  I was diagnosed with patellofemoral syndrome, a rather common diagnosis for young women, ordered to wear knee braces, sent to physical therapy, and told that most people "grow out of it."  The orthopedist added on pronation of the foot and joint hyperlaxity in my knees and hips.  As a result of this pain, I had to rearrange my coursework, take adaptive PE, and miss out on school dances, choir trips to theme parks, and countless outings with friends and family.

I graduated from high school and started attending the local community college (2003).  In addition to the knee pain, I began to have the steady companionship of hip pain, which I blamed on the knee problem. Assuming I knew what it was, I never went to the doctor about it and kept struggling through, trying to do it all on my own.

In 2006, I got married to my wonderful husband who knew about the knee condition and the hip pain, but had no idea what we were in for.  I stayed at the community college for another year, got a fantastic scholarship, and then transferred to the local university in 2007.  The knee and hip pain that had waxed and waned in the years between began to be more and more bothersome.  I found myself more and more stiff in the morning and had increased trouble sitting, standing, and walking for any length of time.  July 2008, however, brought new challenges.  I began having trouble with my back, hands, and other joints.  The morning stiffness was dreadful, and I was suddenly discovering a whole host of things that I had done that I could no longer do because of the pain: Make a peanut butter and jelly sandwich. Go grocery shopping. Play the piano. Vacuum. Write with a pen or pencil.  I began using a cane.  Then two canes.

I went to my GP and was put through tests: poking, bending, blood work... Whatever it was that I did have, it isn't autoimmune, so it's not lupus or rheumatoid arthritis, I wasn't anemic, etc. etc.  In short, my blood work was fine.  My GP said that he suspected that I had fibromyalgia and sent me to a rheumatologist.

Dozens of x-rays, countless vials of blood, and two hours in an MRI machine later, the rheumatologist suspects that I have "hypermobility" that causes chronic tendonitis in my joints, degenerative disc disease/arthritis in the lumbar region of my spine, and fibromyalgia.  I tried pain killer after pain killer, different types of muscle relaxers, and sleeping pills.  I got forearm crutches for most of my walking and a rollator (like a walker but less medical looking) for carrying my laptop and textbooks around school.  I started getting disability services.  I became the subject of service projects with people bringing in meals and cleaning my apartment.  I've missed school, had to turn assignments in late, and battled every day that I was in school to make it through one class at a time.

Somehow I've also managed to pinch a nerve in my neck (diagnosed as myofascial pain syndrome).  I have sciatica and plantar fasciitis.  My diagnosis of "hypermobility" has vaguely expanded into a "connective tissue disorder, not otherwise specified" (CTD-NOS).  I use my crutches whenever I leave the house.  If I have to go to the grocery store, I use one of their motorized carts; I prefer to order in my groceries or send someone else if at all possible.  I get worn out easily, avoid stairs at all costs, and spend most of my time laying on my bed or on the couch.  I have had to redefine who I am, and was nearly lost to the darkness in the process.  I graduated with my B.A. in Spring 2010 and have since discovered that I cannot find a job that I can do and for which someone is willing to hire me.  I long to get my upper degrees, but, many days, the thought of going back to school and doing it all over again nearly brings me to tears.  I've been in physical therapy multiple times.  I've paid more money for medications and copays than I want to think about.  I've been on: Advil, Ambien, Voltaren gel, Tramadol, Mobic, Lidoderm patches, Cymbalta, Tylonol with Codeine, Vicodin, Skelaxin, Savella, Indomethacin, Aleve, Lyrica, and two types of antibiotics.  I've had to give up cross stitch and Tetris, among other things.

If you have a clear understanding of what I actually have, will you please fill me in?  Because I think six-or-seven-or-eight diagnoses is far to many.  OCCAM'S RAZOR, DANG IT!  Somehow all of these have to fit under one striped umbrella instead of several small, unstriped ones.

I'm still learning about my new limitations.  It seems to me that every time I start to get an idea of what I'm "up against," something new happens and I have to reevaluate all over again what I can and cannot do.  I often feel way more "crippled" then "extraordinary." But this is my life.  This is the one I have been given.  And I either have to find some way to survive, or give up.  And giving up is too hard (another post for another day), so I'm going to have to survive somehow.  And while I'm "surviving," I might as well be extraordinary.

...but I really wish I had a diagnosis.

P.S. My spell check cannot handle all these medical terms.  It keeps giving me the red-squiggly-lines of death...