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?

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2 Comments

  1. I would try benadryl in case it’s a weird mast cell thing with you POTS and connective tissue issues, but I’m obviously biased! Or a daily antihistamine, even a mast cell stabilizer. Hope you find something that works or it goes away!

    Reply
    • Ah you must be psychic. My primary just prescribed me singulair, not for the hip/pelvis/gut thing but for the disaster that is my mouth, throat, ears, and nose right now. So I will be starting it tonight. And upping my Allegra, and adding in serious Benadryl. And getting more allergy tests. My tryptase (that was the mast cell thingy right?) and urine histamine levels were not bad, so they are not thinking mastocytosis, but I do for sure have some rotten allergies that may be causing or confounding things.

      Reply

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