Another trick

Here’s a new one.  Back pain, spinal back pain to be precise.  Oh the hits just keep coming.  Last night, in bed, tried to turn over and woah…my back wasn’t having it.  It’s a very circumscribed area and it is exactly on the left side of my spine.  Thoracic.  Yay.  Because I needed that.

My guess is I hurt it coughing.  It does not feel like a muscle pull, unfortunately.  It feels like it’s right smack on the bone.  Even when I’m not turning or twisting, i.e. just sitting here, it feels like someone’s putting out a cigarette on my back.  Crap.  Crap crap crap.

And here I was celebrating because yesterday, I didn’t feel totally awful.  Bad headache as the day wore on that was like having a drill going on my skull by bedtime, but believe me, that was an improvement from how I had been feeling just the day before.  So now my body says “hey here’s a new one” and off we go.

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hip, hip…

…not hooray.  Opposite of hooray.  My right hip has decided to act up.  The right hip.  The “good” one, relatively speaking.  Last night just before bed,  I was having short, sharp, intense pains in what I refer to as the “ass-al region” on the right.  I woke up pre-alarm clock to a very bad feeling in my right hip, all through the back and to the outside.  Did I bend into pretzel shapes while I was sleeping?  Was the hip slowly moving out of joint like some planet entering a new transit?  A horoscope of misery?  “Hip trine knee – this transit will be a pain in the ass, literally!”

What to do.  Wait and hope is where I’m leaning.  Otherwise, see PCP, get referral, see ?ortho? and hope it’s not a sports doc who doesn’t have the time for someone who can’t leap tall buildings in a single bound?  Act like it’s just the hip when really it’s the whole damned set of joints.  I am not looking for a diagnosis, just hoping I didn’t injure myself.  With unstable joints like mine, it is NOT hard to do.  Sitting, standing, walking, and even sleeping wrong can be enough.

Self referral

I shudder at the thought.  It should be reasonable, but even trying to write about why the prospect bothers me is difficult.  Here’s the situation.

I have joint pain, lots of it.  In 2005 (I think) my left hip rather suddenly started hurting.  I had been on my feet all day, moving tables, chairs, setting up for a poster session at an undergrad research presentation event.  I often forget that part of the onset.  At some point, my leg felt “off”, a feeling I wasn’t unfamiliar with, that usually resolved if I shifted position or kind of shook it out.  By “off” I mean it felt like things mechanically weren’t right.  This time, the feeling grew until it felt like my hip was being pulled off my body – I tried to walk to get to my car and had to slow, slow, slow, and eventually stop and practically lay on a wall.  For months after that, it hurt horribly daily.  It eventually stopped.  What stopped it?  Massively reducing my activity.  It would flare up again if I did too much, too much walking, moving furniture around (even small stuff like a coffee table).

I have knee and ankle pain weekly.  That started with the Lyme Disease, although when I say “started”, what I mean is that the pain for no good reason started.  I always had pain after walking a lot, mall walking, city walking.  A day spent browsing around a city would leave my legs throbbing in pain but I just assumed everyone had this, that it was normal.   What started with the Lyme, and stayed, is having that pain despite doing little or no walking.  Rainy days = pain.  Weather change = pain.  Sleeping wrong = pain.  Stepping the wrong way = pain.

I have arm, wrist, and hand pain and tingling.  My job and my hobbies are killing my hands.  Typing, writing, photo and audio editing.  I keep saying I’m going to look into alternative mouse options but so far I can’t seem to find the time to check it out.  I did at least get a split keyboard at work and oh wow does that help.  I can’t handwrite anymore – I’m good for about one sentence before my hand and forearm cramp up and my usually sloppy writing becomes completely illegible.  A page worth will leave me needing a cool water soak after.  And when cooking, I am no longer allowed to cut veggies.  Too many trips to the ER in rapid succession from 2008 to 2009 for big ugly gashes.  I’ve cooked since I was a kid.  I did not have a problem handling a knife.

I have this thing which I think is best described as erythromelalgia in my hands and feet.  This started in about 2004 I think.  Again, post Lyme, but there is the confounding factor that since getting Lyme and the pain and fatigue that came and never really left, I had to reduce my activity level or be in too much pain to do things like go to work, go to school, feed myself, clean my home, you know, all those little pesky things that make a life.

For a while, I tried getting doctors to care about these things.  I’ve seen ortho for the hip and had 2 rounds of PT, the first of which was helpful but the second was vastly unhelpful – the PT was very “it’s your hip” specific, and treated it like it was an acute injury in an otherwise healthy person.  I’ve seen rheumatology for the arm and hands and swelling hot extremities (erthyromelalgia).  I gave up eventually because under even the best circumstances with the least doctor levied invalidation, what I got for my troubles was what Louis CK so aptly phrased as “you just do that now“.

And now there is the pelvic and sacral pain.  Let’s just for a moment consider that area.  While I have given up many formerly pleasant activities which make life fun, and even (some would say) worth living, I had not yet given up sex.  However, the prospect of enduring post-coital pain is a bit of a mood killer.  It’s simple aversion conditioning.  Sex = pain.  Makes sex less up there on my list of fun things to do.  That’s not to say I don’t, but I plan it out now.  “Hmmm, it’s Saturday and I’m not totally in the mood but if I want to have sex, I should do it today since if I do it Sunday, I will have to face Monday at work in the worst of the pain that I’ll have for the next 3 to 5 days.”

A long history of being turfed between GI and GYN for any complaint located between my diaphragm and my knees has taught me that diagnosing “pelvic/abdominal” pain in a woman is apparently one of the great mysteries of life.  Sort of like looking for the Loch Ness monster or Big Foot.  And I played that game for a while, when the symptoms seemed to be GI and/or GYN based.  But this is different – really it is.  It is like the hip pain but deep inside my trunk.  It radiates around my flank and into my back.  It travels down my leg to my knee, and if it gets really rocking, it can make my whole leg hurt like I’ve jumped off a wall that is a little too high.  And the sacrum.  Oh god.  It feels like it’s coming apart.  Just like the hip back so many years ago.  Let’s not forget there is this one other little spot of connective tissue in the pelvis that goes unnoticed unless there is a problem.  It’s called the pubic symphysis, and it’s a little tiny place where the front of your pelvic bones come together, and it can hurt like a mo-fo.  It seems to be the case that this pain comes from trauma, sports injuries, or pregnancy.  But for some people, no.  We “just do that”.

So.  Signs point to connective tissue issues.  And they fit so nicely with my other general symptoms (the POTs type stuff, the GI/motility stuff, the migraines, the fatigue).  And yet, who do I see for this?  Primary?  Well, it really is a bit outside his area.  Joint and shit?  Lady joints and shit?  Oh hell no.  He’d want to refer.  But who to.  Ortho will treat individual areas, in my experience, separately.  Mechanically.  Overly-reductionist.  Rheumatology doesn’t want anything to do with me because my autoantibodies are just not high enough for them to give a crap.

I am not certain it is “pelvic floor dysfunction” but what other name to give to chronic pain in the areas from my lower ribs to my thighs that is now affecting and affected by everything that strains it:  sex, voiding, walking, cleaning, carrying anything…even how how I sit or stand.   Do I self refer to the pelvic floor dysfunction group and say “hey, it may not be this but I think you guys should take a turn at it because everyone else is all out of ideas and well, it might be this”?  And how do I communicate that, initially?  at the outset?  Over the phone to the office staff?  Not likely.  Better would be a written referral from a doctor I see, but so far, I’m not having luck with that.  What would you do?

hot foot

I’ve posted before about the hot hands, with pictures even.  This happens with my feet too.  So much so that at one point during my interview for the new job, I HAD to take off my shoes.  I mean had to.  It felt like my feet were on fire and were just going to pop.  This in combination with the badness that can happen to my feet has brought me to a point where I am finally going to break down and get some damned open toe shoes.

I am not a fan of open toe shoes.  I recall seeing a hospital staff member (in radiology I think) wearing them once in recent years and thinking “are you fucking crazy?”  My memories of working in a hospital include coming across the occasional puddle of something on the floor.  Yes, they get cleaned up but usually only after a staff member encounters them.  If that staff member’s encounter involves traipsing through the mystery fluid in open toe shoes, well, “ewww” only about half covers it.

very uncomfortable looking shoe saturated with flame color because they are evil.

EVIL!

Since, oh jeez, about 2002, it has seemed that women’s summer shoes are dominated by open toes.  I have not been on board with this trend.  I kept hoping it would pass.  I don’t love my toes, less so now that the “ring finger” toe on my right foot has decided to curl up and hide under the middle toe.  The foot doc I saw about that gave me a lecture on shoe types, that I should wear wide toe shoes and avoid heels.  She did this while I was in her office with what essentially look like clown shoes on…I do NOT wear narrow toed shoes and I haven’t worn heels of any height since before Lyme Disease and the joint pains that now are a daily part of my life.  Didn’t matter to her, what mattered was that my toes looked like they belonged to someone who wore evil stiletto heels therefore I must wear evil stiletto heels.  Couldn’t be part of the systemic thing that is wrong with me, you know, that connective tissue thing that my body has spent most of my life declaring to greater or lesser degrees and which I was well trained at explaining away:

  • “Mommy, my legs hurt” “It’s growing pains”
  • “Mommy, I twisted my ankle, again” “You just have loose ligaments”
  • “Mommy, I have a rash” “Let’s see (pulls out medical book with eye-wateringly horrible rashes on children and old people)…now (flips through pages with book open on her lap so I  can see) THAT’S smallpox, and THAT’S impetego…”
  • “Doctor, my hip hurts” (Doctor has me lay down and snaps my leg around like Indiana Jones wielding his whip) “You have hypermobile joints.  It’s a normal variant, but it can cause some wear and tear on the joint.  I’m giving you a PT consult”.
  • “Physical therapist, my ankle hurts now that you’ve had me doing all these exercises that involve using it as a pivot” “Well it shouldn’t hurt, we really aren’t doing THAT much”
  • Etc.

Wide open toe or not, it seems my toes are feeling the wanderlust and deviating from where they should be.  This is giving me an increasingly snaggle-toed effect.  On my already unlovely feet.  I don’t have cute little toes on a dainty little foot.  I have long, creepy toes on a long narrow boney foot.  Hence, I do not feel they should be highlighted when I am dressing to impress, which includes dressing for work.  Add this to my feelings about open toe shoes in general (which, to quote the fictional Archchancellor Ridcully, I would comfortably describe as “unhygienic”) and you get some serious avoidance of the shoe type.  However, I can’t keep taking my shoes off at work.  These feet need air, to help prevent the “badness” and to keep them from feeling like a nuclear reactor melting down.

And so it is off to the nail salon to try to put a nice shine on the snaggle-toed monkey feet, then off to the shoe store to check out some open toe sandals that I don’t feel silly, ugly, or naked wearing.

hips do lie

Hip pain.  Got it again.  The left hip is the real bastard.  The one that came on like a tidal wave one spring evening at work in, god, was it 2005 or 2006?

I started feeling like my legs were tired, like I’d walked miles.  I thought “ok, time to get going” and gathered my stuff to leave.  I didn’t get far before I felt this intense pressure-like pain in my hip, like a cramp starting but deep inside the joint.  I thought I needed to adjust my gait a bit, smaller slower steps and just walk it off.  But it got worse.  By the time I made it the next few yards to a short retaining wall, it felt like my hip was going to pull off of my body – an angular pressure with the top lateral part of the hip feeling like it was pushing outward and away from me with the interior medial part feeling like it was pushing inward towards my groin and other leg.  I couldn’t stand, and eventually couldn’t even sit.  I had to lay down in this very odd pose and keep calling friends on my cell phone for help.

And so started the now “chronic” hip pain.

Just like every other chronic thing.  Started out as a “wow, what the hell is THAT?!” feeling and, as a result of non-specific or negative tests which didn’t point to a cause or a treatment, has become something my body just does now.  I manage it through inactivity, ice packs, and NSAIDs.  This works pretty well – although what the level of inactivity is doing to the rest of my body is probably not great – e.g. being all hypotensive and whatnot, I really should try to keep some level of activity up, keep those leg muscles in good working order.  But the practical issue is that I need to NOT be in pain, because when I’m in pain I can’t get around.  And that means not working.  So I take what is for the immediate time the only solution.  That I may be paying for this with an increase in fatigue-related systemic symptoms is not lost on me and is something I can get quite unhappy about if I stop and think about it much.

stylized x-ray image of left hip, 35 year old woman with recurring lateral hip pain

my hip is a dirty liar

There are times though when my activity level is necessarily higher.  Like moving.  I didn’t carry anything heavy yesterday, but apparently I carried enough up and down short flights of stairs and across uneven floor boards to get the hip going again.  Do I mention the pain to my primary care on Friday?  (got a follow up follow up then, had been hoping it was a wrap up or at least a sort of chapter summary type visit)  I’m not really thrilled with that thought.  It’s not like I glossed over it in the history.  But if I bring it up as an acute issue or an exacerbated chronic one, I might send my doctor off on another flurry of referrals.  Which would be ok with me except I think they’d be useless.  Believe me, the hip’s been worked up.  The only thing that I can think of that hasn’t been looked at is the vascular side of things.  Yes, I’ve had the usual inflammation blood work, all nice and normal.  Slightly elevated ANA, but I’m told it’s nothing to write home about at the levels it’s at.  Apparently if you don’t have serological evidence of inflammation, ain’t nothing wrong with your blood vessels.  At least this is the message I have received from doctors.

“you just DO that now…”

lol.  There are so many things that I just DO now.

New word

Pubalgia.
It nearly rolls of the tongue, doesn’t it? At least it does when you compare it to “osteitis pubis” or “pubic symphysitis”. Here’s hoping mine doesn’t get worse than the current moderate, intermittent “pubalgia”. Got a shot in the hip today for the outer and posterior aspects of this whole pelvis/hip pain issue and while it wasn’t painful, it sure was not comfortable. I don’t even want to think about a shot in the pubic symphysis.

On the plus side, my ortho surgeon referred me for water PT this time. My town has a public pool with a heated therapy pool which you can only use if you have a documented need for it. I’m hoping the PT note will take care of that so I can finally get some damned regular exercise. I’m not accustomed to being so laid up. I used to walk all over the place, did two miles of strolling without batting an eye, occasionally worked out (cardio mostly although some ab work as well), and went dancing now and then. These days, taking a flight or two of stairs is like a damned olympic event for me.

Sound self pitying? It’s not. Just an accounting of the limitations, facts of life now. Water exercises will help in that I can maybe get some muscle tone back without worsening the joint pain in my ankles, knees, and hip. I’m approaching this with a hopeful attitude. Let’s see how it pans out.