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?

what are you waiting for?

Waiting is a common enough theme in this blog that I probably should make a category or at least a tag for it.  Here are some of the things I’ve been waiting for lately.

  • Waiting for Human Resources to process (i.e. find ways/reasons to deny) my health accommodation requests.
  • Waiting for an appointment with my primary care (this Wednesday) to go over the most recent documentation request from HR – I made an appointment  this time because of all the fruitless waiting I did last Fall with the initial set of accommodation physician documentation forms.
  • Waiting for results from my rather difficult to time 24 urine and “while you’re symptomatic” blood draw for histamine by products.  I have an  appointment this Friday, which I am trying to change to earlier so I don’t miss quite so much work, and so add to this list…
  • …waiting for the Endocrine clinic at B.A.T.H. to call me back.
  • Waiting for an EMG (also this Wednesday) on my totally screwed up right hand/wrist, which I totally screwed up by overuse at work and by waiting to too long to get it checked out.  It’s now not just an acute injury.  It’s a new trick for my body to do.
  • Waiting for an appointment with some genetics doc (next Wednesday) …this came out of the January appointment when I popped my hip out of joint getting out of the car, ended up being tacked on to the schedule of a Rheumatologist my primary care shares his office space with sometimes, and referred for checking out of the whole super bendiness/spontaneous dislocating/subluxing (subluxating?) stuff.  The appointment is to evaluate me (genetically) for Ehlers-Danlos syndrome.  I haven’t decided about whether to mention testing for a RET gene mutation – maybe I will ask my primary care about this on Wednesday.

What made me think of waiting was a post on Professor Lisa Gualtieri’s blog, which seems a decent blog.  I found it through an old article in the Boston Globe which was a recruitment call for patient bloggers for a survey research study (now closed, but a slide show of findings is here).  In her post Must waiting be inherent to medical care?, she gives what I guess can be called a taxonomy of waiting which patients experience.  Yup, seems right.  My least favorite part is the final step, “loop”.  That one kills me.

My strategies for waiting to be seen once I’m there include the following:

  • My primary care’s office is always backed up.  However, they are very good about letting you know how far behind they are if you call ahead.  I find this to be a good solution, and I respect that they are behind because my primary care has a lot of complicated patients and because he doesn’t rush through appointments with us.
  • I bring something to read, something to work on, something to play with, or someone to talk to.  I have played countless games of solitaire; written numerous pages of journal entries, letters, or poems; drawn on my iPad; listened to downloaded podcasts or episodes of shows like This American Life (interesting and informative).  It helps.  I feel bad for people who do not have access to mobile devices or engaging diversionary materials (e.g. books instead of insipid waiting room magazines), which help pass the time.  I have often wondered about starting some kind of book/tech drive at waiting rooms – E.R.s, O.R.s, and ICUs specifically.   One day, when I am not working, I  think this will be a project of mine.
  • I manage my expectations.  I do not expect to be in and out fast.  I think that this is easier, or at least comes more readily, for those of us with chronic illnesses.  We sort of learn to discard the stresses that we can, because there are so damned many of them.  If we let a one hour wait in the doctor’s office drive us over the edge, we’d have no resource left over for all the other things that are stressful in our lives.  This isn’t to say that it doesn’t get to us.  It does, but I think that if one were to calculate a “per visit freakout” ratio, one may find that the people in the many years chronically ill group inclined towards the lower side.  Dunno for sure, just a hypothesis.

So, what are YOU waiting for? How do you deal with waiting in medical contexts?  Have you found that your chronic illness has made you better or worse at being a patient patient?


I had my appointment with my primary care today to get meds for sleep and for anxiety from the work stuff (“asking for it” and “better than expected“).  Done.  We also talked about how the need for accommodations is part of what is bringing about the stress.  And by “need for…” I mean both my various physical states and the unaccommodating, unreasonable, and sometimes downright hostile attitudes I have dealt with at work.  PCP was very nice and took the time to try to recommend some strategies, suggested I treat them like they have personality disorders (there are two in particular who seem to fit the bill and who have caused or made worse a large amount of this grief).  I didn’t blow him off, but I did tell him I have a therapist and that I’m working on the behavior side of this.  So two scripts for me, and then we turned to reason number two for my visit.

Reason number two did not arise until I pulled up and parked at his office this afternoon.  I hurt myself.  As I was getting out of the car and the back of my shoe bent back, because I’m clumsy and apparently can’t get out of a car without catching my foot on everything between the gas pedal and the pavement.  I’m bendy, so I raised my right foot up while I was still seated to fix my shoe, which involves rotating my right hip out…and PING!!!!! went my hip.  On the inside, you know, the “groinal” region.  It still hurts when it’s rotated out or when I have to flex the quad.  Which sucks because I tend to sit cross legged (yeah, bad for me) which involves rotation and flexing.  Grrr.  Anyhow, since after doing this I had to sit for a moment with my leg out and my head between my knees so I wouldn’t pass out, then hobble in and around his office,  and since he’s going on vacation and if it turns out I really hurt myself, I’ll be S.O.L. for two weeks after today, I dutifully wrote on the intake form under “reason for visit”: anxiety and insomnia from work related stress; right hip pain from injury JUST now….

Oh it’s a good thing he likes me.  Because I am THAT patient.

Medical diagram of person demonstrating maneuvers to calculate Beighton Score for hypermobility

What’s your Beighton Score?

So on to the hip.  “Tell me about your hip…”  I tell him about what  I was doing when it went “ping”, what “ping” means, and about how my left hip has done something similar then forever after has been prone to just hurting like hell for no reason, and how yes my shoulder/neck do this too, and it did feel quite like it feels when my toes spontaneously dislocate themselves…which does happen with some regularity.  “I’m bendy” I tell him.  He puts it to the test.  “Can you now or have you ever been able to bend down and touch you plams flat on the floor?” he asks after moving my hands, wrists, and legs all around like I’m a gumby doll.  “Oh yeah, I can do that…” and I do.  “Ok, yup…have I referred you to rheumatology?”  No.  But it turns out there’s a rheumatologist who shares his office space some days of the week, who is in today, and who has just had a cancellation, so in I go.  Across the hall and off to see Rheum doc.  He also moves me around like a gumby doll, takes my family history (autoimmune, thyroid, aneurysms) and says “I’d like you to have genetic testing for Ehlers-Danlos syndrome.  You do have some hypermobility and with your family history of vascular disease, I think it would be good to check on…”  He goes on to explain basic genetics (dude, seriously?), says something about “type four”.  We talk about hypermobility in general, how it’s easy to hurt yourself by overextending, that the ligaments or something can “flip” then flip back (ewww, but yeah, ewww is what it feels like).  PT is mentioned but back burnered (I want to wait for work accommodation stuff to wrap up before I try laying on them the idea of me missing work regularly for 6 to 8 weeks while I paddle around in a pool with a gym teacher telling me that it shouldn’t hurt).

There’s more but that about sums up the gist of it.

More serendipitously (more than rheum doc being there and available just that minute), my PCP had also mentioned genetic  testing some time back, this summer I think.  I asked “and what do we do if the endocrinology work up is bust?” when discussing going back to the endocrinologists who blew me off the year before as needing nutritional counseling for hypoglycemia while ignoring the rest of  the referral for what my primary care thought was suggestive of pheochromocytoma , Medullary Thyroid Carcinoma or carcinoid/MEN….the diarrhea/flushing/thyroid nodules/elevated catecholamines, chromogranin A, and oh something else like that shit (which while elevated is not elevated “enough” for the endocrinologists to consider relevant I guess).  PCP had said “then I order genetic testing.  And maybe do some imaging.”

I had not yet followed up on that path since I am only this week having what the appointment which will likely be “THE GREAT ENDOCRINE BLOW OFF PART II:  your blabbity blah is only slightly elevated and that’s because you take medicine with caffeine in it,  all that pooping and overheating is just in your head, or is aggressive IBS and ultra early onset menopause, which we think will sound more acceptable to you since you’re a hypochondriac but really it just means we think it’s all in your head (and you’re female), so fuck off!”

I’m wondering how odd it would be for me to go to this genetic medicine appointment at (yet another) local B.A.T.H. and say “hey fellas, can you throw in a RET gene test too?”  Because I think that’s  the one that covers all that pheo/MTC/MEN crap.

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.