Day 196. Fatigue, PT, and the Pain Doc

This is a Zen Tangle - a sort of glorified brain-emptying brain took several hours this weekend to empty.

I have to come clean about one of the troubles that caused my lengthy mental vacation a few days ago. Because I was under so much duress, pain, and fatigue from physical therapy, I ended up quitting, which felt like a combined defeat and deliverance.

I restarted Physical Therapy on the last week of January this year.  It was a familiar place, since I had been in PT for about six weeks at the same place with the same therapist around the same time last year.  I ended up quitting that time because I got infections in my legs and felt so sick and was hospitalized…it was too hard for me to keep going, ultimately.

But this time, a different doctor had ordered the PT.  Specifically she wanted to work on pain before any exercise took place.  I have knots in the trigger points of just about any muscle group you can think of, especially around my neck and shoulders, my core area, my lower back, and my legs.  That probably explains why I hurt a lot, and (at least to some extent) why I get so tired when I move around.

So Mike’s job was to defuse these little bombs all over me. Since my skin is so tender everywhere, massaging away the trigger points was misery for him; none of the standard methods worked because if he used them, I left the place in more pain than I came in with. So Mike put me on moist heat and a TENS unit (electrical shocks to the muscles) before he started to relax me, and then took the most gentle, feathery approach possible— and distracted me as much as he could.  Most of this was good.  I loved the heat and the TENS unit.  It was yummy.  And what Mike did felt good, sometimes.  And the distraction was great.  He became a pal.  I really like Mike.  He’s the kind of guy I would hang out with.

THAT IS ALL WE DID.  When I complain about PT, people envision my having to do 45 minutes on the rowing machine and another 20 on the treadmill or some ridiculous thing.  HAH!

 No, I was completely exhausted from a fantastic massage.  Mike did this neck thing that was quite possibly one of the most delicious feelings ever.  And I’m including sex in the list of possible feelings.  Seriously, though, just the act of turning over a couple of times on the table, pressing down on my wrists, lying face down (which is very taxing for me, because of my POTS), and the moving around of my tissues and my joints (particularly when he moved my hips and spine around from positional faults), required my immediate, lengthy rest when I got home.

 So, it got to the point that I was having early lunch on Tuesday, leaving for PT, then getting home at 2:30 and having to rest until 4:30 or so. Then I would be starving.  I would eat dinner, but I would be exhausted afterwards, so I would get in bed, and take my pain meds for the night.  I always have writing group on Tuesdays, which was a challenge, but we do it on Skype, so speaking under the covers about writing and doing the occasional writing exercise was okay.  But 10:30 would be it for me.  About half the time, and especially if Writing Group went late, I felt miserable on Wednesday, mainly the result of PT, so it would be a pajama day.  Then it was Thursday, time for PT again, the same rigmarole, and Friday had a 50-50 chance of being lost.  That sucked (particularly since I always have a doctor appointment on Monday and frequently have appointments on Fridays as well).  My ENTIRE week was gone.  It was very hard to make plans at all during the week.

I complained about this problem several times in therapy, and my therapist (who sees only people with chronic pain issues and knows about this stuff), said, “Look, why don’t you call your pain specialist and ask him if there is a medication he can give to help with this. Sometimes the fact that you are so exhausted from the treatment means that you are having pain from it that you’re just not sensing.  It’s a good idea to get his opinion.”  It was good advice, but my intuition was it was going to turn out terribly.  Still I made the call.

Dr. Duckweed, the pain specialist, called me right back.  His response?  “I thought I told you to make an appointment for another epidural injection.”  Me: “Um…I don’t remember that, but I can do that….” Dr. DW: “Oh, COME ON, you know what you were supposed to do! Me: (long silence) I guess I didn’t or I would have made the appointment.  But I’m really, really sorry about that.  Sorry, Dr. Duckweed.  But I am calling because Dr. A suggested I talk with you about my problem.  I have a lot of pain in physical therapy and it exhausts me for two days afterwards.  I was thinking that maybe there is something I can take just during physical therapy.…. Dr. DW:  No, you were supposed to sign up for a shot.  Me:  But, Dr. Duckweed, I get so exhausted.  Dr. DW:  If you’re so tired, go see your primary care doctor.  [bang–hangs up.]

That was helpful.

I was so upset.  What upset me most was that when I get angry, I don’t yell, like Dr. Duckweed.  I cry.  So to keep myself from crying, I got quiet.  That made me so mad.

But then I figured, maybe the guy was right, although he probably didn’t even realize it.  I should call my primary care doctor, who is smart and may figure this out. By some miracle, she had an open appointment the next day, which, if you make doctor appointments at all, you know is miraculous. Besides, I thought, maybe I’m depressed. Maybe I am so panicky and can’t handle two simple appointments per week (and a simple run-in with an otherwise very good doctor) because I’m depressed.  Yes, that’s it.

Dr. Miller, my PCP, was helpful.  She said she would give me the requisite blood test that anyone would expect her to, but we both knew it would be one of the few tests on me that does come out normal. Then, she offered to call Dr. Duckweed to try to reason with him.  She suggested that maybe it was a miscommunication, that he was not understanding the part about the exhaustion.  She wasn’t so sure about depression.  It could be anxiety, but she even wanted to table that until the immediate problem was solved.  So we set an appointment for a month in advance to re-evaluate.

Not long after I got home, she left a message—I had been on another phone call I couldn’t hang up from, damn the luck.  She told me she had talked with the cranky doc, and that he said, oh of course he didn’t understand the exhaustion part.  That’s just muscle pain.  Just treat that with Advil and rest.  Dr. Miller added her part–that if PT was giving me this much muscle pain, why didn’t I quit for the next 4-6 weeks just to see how that improved my mood and pain level.  Then, when we meet next time, we could talk about it.

Well Shit.  Um.  Okay.  I can’t take Advil (or any of its NSAID cousins)— bleeding risk and all.  And um, I know I have told Dr. Duckweed countless times that I live on a heating pad.  Resting is my life.  Jesus.  Did he never take notes on any of our visits?  But at least Dr. Miller saw through to a solution.

Thankfully, my therapist, the wonderful Dr. A., was willing to email with me about this.  We agreed on laying off the PT; if pain and exhaustion had become so central a focus, why continue?  He suggested his acupuncturist, who I called right away.

Not fifteen minutes after I canceled my PT appointments, though, Mike called me back to find out what was wrong.  He also wanted to point out that if I did go to an acupuncturist to be very careful; since I have Addison’s Disease, I am highly prone to infection.  And my VEDS makes me highly prone to bruising.  Was I sure acupuncture was good for me?  I told him I would sort it out, but thanked him because he was quite right in his reasoning.  Still, he wondered, what could I have done better, so I can improve my service.

Horrors.  The worst part of it was that I couldn’t articulate what was wrong with me, what the pain was.  I couldn’t explain why getting the best massage of my life was making me so miserable.  In retrospect, it was like breaking up with someone you really love, for some higher, greater reason.  Then, when they say, but we were so great together, and I really, really loved you, what about that wasn’t good, there’s nothing to say to dispute that.

But a physical therapist is not a masseuse.  The work this guy was doing was pretty intense.  The fact that I mistake him for a masseuse is a testament to his expertise with taking me through some difficult passages.  I don’t think anyone else could do it.  So what about my body won’t put up with it? And still more, why can’t I articulate it?

I think the conflict with the doctor arose from the same problem.  He was angry because I couldn’t give him the right information.  If I had been able to explain the kind of pain I had specifically — in frequency, intensity, and duration — he would have known immediately what to do.

My words leave me when it comes to my body.  I wonder whether it is a factor of having very poor proprioception, misguided orientation towards my body in space.  Thus, I don’t know what hurts or where, just that it hurts, all of it.  Or I wonder whether it is I try so hard to tune out the message that anything at all hurts (I do this with such great conviction, I can’t express it to you earnestly enough); it is as though I say to myself those words in the Pink Floyd song,

There is no pain, you are receding; a distant ship, smoke on the horizon.  You are only coming through in waves.  Your lips move but I can’t hear what you’re saying. When I was a child, I had a fever. My hands felt just like two balloons. Now I’ve got that feeling once again. I can’t explain, you would not understand. This is not how I am. I have become comfortably numb.

Any of my readers who have chronic pain may be able to relate to this inarticulate feeling.  Maybe the rest of you a bit?  It’s damned ironic that such a consuming feeling also consumes the words I have so freely for every other thing, and it ends up I can’t describe it accurately to the people who would treat it.

 What makes you inarticulate?

(P.S.  The Pain Doc is fired as of today, and I see the acupuncturist for Medical Qi Gong next week, no needles.)

14 thoughts on “Day 196. Fatigue, PT, and the Pain Doc

  1. I’ve never felt chronic pain in the way you’ve described it but my mom did. The thing is, she never told us about it until she was not able to walk because her knees became so weak. You see, my mom’s breast cancer spread to her bones. It concentrated from the pelvis up to the skull. She’d complain alot especially when in pain. She’d just take two tablets of paracetamol and then it would go away, so she said. At times she’d see large bumps appearing from out of nowhere. I admire you for having to go through all this pain and yet still strong enough to blog about it. With that I am very thankful your openness in sharing about what you’re going through.

    • I’m glad you appreciate my discussing it. It’s hard to know whether my discussing it is a good idea around friends whose family members who have suffered like your mother. I hope I do the topic the honor it deserves.

  2. I apologize in advance for the spread out posting…. Funny, but the notion of what makes me inarticulate is best articulated by someone else. Borges, in this case (which is good), in a nice translation of his poem, Limits. (Relax, I did not translate it).

    Since I was a kid (about five), the one thing that has left me speechless is that no matter how long my life will be, its time is highly limited. That would not necessarily be a problem if I were not aware of all the beautiful things that I will miss. I’ve recently received an email from a friend (and very former ex-girlfriend) who mentioned that whenever we walked by a book or record store I would lament “Ah, all the books I won’t have time to read – all the music I won’t have time to listen to.” And that’s what leaves me inarticulate: cultural beauty that due to my limitations I will not experience. I find that unfair. On top of that – and I am not being glib – we lack the gift of ubiquity, so we are always having to choose where to be, where not to be (in a highly limited context). I can only imagine the level of frustration and anger that chronic (invisible) pain adds to the equation. Perhaps the only adequate response is to try to be vocal about the whole thing: put into words what we think is un-utterable, because things said acquire a consistency that moves them beyond the initial perception. Your experiences are yours only. To the degree that you present them, we can share them. To the degree that you articulate them through language, we defeat, even if only temporarily, time.

    Enough of me. Here’s JLB’s poem.

    Limits (Jorge Luis Borges)

    Of all the streets that blur in to the sunset,
    There must be one (which, I am not sure)
    That I by now have walked for the last time
    Without guessing it, the pawn of that Someone

    Who fixes in advance omnipotent laws,
    Sets up a secret and unwavering scale
    for all the shadows, dreams, and forms
    Woven into the texture of this life.

    If there is a limit to all things and a measure
    And a last time and nothing more and forgetfulness,
    Who will tell us to whom in this house
    We without knowing it have said farewell?

    Through the dawning window night withdraws
    And among the stacked books which throw
    Irregular shadows on the dim table,
    There must be one which I will never read.

    There is in the South more than one worn gate,
    With its cement urns and planted cactus,
    Which is already forbidden to my entry,
    Inaccessible, as in a lithograph.

    There is a door you have closed forever
    And some mirror is expecting you in vain;
    To you the crossroads seem wide open,
    Yet watching you, four-faced, is a Janus.

    There is among all your memories one
    Which has now been lost beyond recall.
    You will not be seen going down to that fountain
    Neither by white sun nor by yellow moon.

    You will never recapture what the Persian
    Said in his language woven with birds and roses,
    When, in the sunset, before the light disperses,
    You wish to give words to unforgettable things.

    And the steadily flowing Rhone and the lake,
    All that vast yesterday over which today I bend?
    They will be as lost as Carthage,
    Scourged by the Romans with fire and salt.

    At dawn I seem to hear the turbulent
    Murmur of crowds milling and fading away;
    They are all I have been loved by, forgotten by;
    Space, time, and Borges now are leaving me.

    • Carlos,

      I have taken so long to reply because what you have written is so beautiful it leaves me speechless. Maybe it’s because I know I have said the same things before “There are so many books to read. How will I ever read them all?” You just articulated it more elegantly than I ever could. You and Borges.

      I love that line, “Space, time, and Borges now are leaving me.”

      Now, to print this and frame it…


  3. I’ve been there. Drs are in a hurry, and that feeling of time pressure for me to spit it out quickly almost always makes me inarticulate. It helps me to know this, because preparing my words in advance of a phone call or appt with a dr is something I need to do to prevent feeling humiliated afterwards. Anytime I have to describe my pain, I am inarticulate unless I relate it to something others might have experienced… Or could imagine experiencing… Like getting run over by a Mack truck or getting fiercly stabbed in the back by an unsharpened sword.

    • I think preparing words in advance is really smart–and I think it is precisely what I need to do to get ready to meet with the new pain doc. Also, you describe speaking in metaphor, which also is a good idea. Whenever we can make comparisons to something that the other person can imagine, I think we are more likely to be on equal footing. So those are great suggestions, Sparkie! 🙂


  4. Heidi,

    Do any of your doctors know you’re writing a blog? Do they read it? Would you want them to? (Probably not Dr. Duckweed.) I ask because I think you articulate your experiences quite well–often heartbreakingly–here. I know it wouldn’t be practical to call up a doctor with a problem and say, “I have a question; can you read my blog and answer it?” And they’re all busy, of course. But I bet they read blogs. Everybody seems to these days. Perhaps the overall intensity of your pain and rarely broken exhaustion would become more real to them if they read a few of your blog entries. Maybe you could suggest other people’s blogs, if you want to keep this one a doctor-free zone and not worry about insulting anyone. Just a thought.

    • Hi Jennie–

      It’s funny you ask. Someone else asked me the same thing today. I have told my therapist, the great Dr. A., because he is good people, and I know he reads it, but I haven’t told others (thinking I couldn’t ever imagine they would take the time to do it). But that really is a good idea–if for no other reason than to say during the office visit, let me pull up my blog on my phone quickly, and I can show you the pain I have been describing during in the last week. I really like that thought! Thanks!


  5. I am, right now, inarticulate about grief. Love. Failure. Future. Hope. I can say the big cloudy word, but what its molecules feel like? Not so much, even to myself, let alone to someone else so that they can find the touchstone in their own well. and that’s assuming an empathetic audience.

    Words, so very wonderful, yours most especially; so very limited. Doctors? Often so very untrained in the listen. People tell me I no longer have the poker face that used to be such a useful mask. I flinch, frown, startle, turn my chair away from the student who has just said something repulsive. To pretend the question from your next entry is mine, I need to work on keening, howling, groaning, the belly laugh, the snort, windmill arms, splayed limbs: the unfettered communique of the three year old who didn’t have the blasted words. It worked then. It might could work again.

    Because it seems especially cruel to have this requirement of articulation which is exactly what is confounded by pain. Should we have flash cards from great literature to explain what pointing at the offending area and going “unh, unh, unh” means? Maybe that’s the way to go: I will groan until you give me enough relief for me to return to the world of words.

    You know, Elaine Scarry said all this better. I am pretty sure you know her work, but just in case:

    love you. love you writing and zentangling and painting and resting.

    • I love what you wrote here, Randi. It feels like a prose poem …. from grief to the big cloudy word….. Your idea about flash cards from great literature to help us point to our offending parts is both brilliant and hilarious. I give it three snaps up and an “unh, unh, unh!”

      I also love Elaine Scarry. I have read her–but not in a while, and one of the joys of having a foggy memory is how brand spanking new everything is. That article is fantastic. Had me standing up and clapping, shedding off my shame from hearing about my mom’s psychiatrist’s opinion of my painkiller dosage: “She takes HOW MUCH dilaudid?” (I mean, okay, I’m fair game in her therapy sessions… but I don’t think I will ever stop feeling like a heroin addict for taking enough medicine to make the pain go away, some of the time). So anyway, reading about Elaine Scarry made me feel like not such a junkie (I need to talk about her in my book), so thanks.

      Love, love, love you too!


  6. I wish I had the energy to write more, to better express what your entry gave me, but suffice to say “I can relate”! I think chronic pain forces us to disconnect a bit from our bodies. Then when we need to reconnect to explain our condition to someone (doctor/physical therapist) if is hard.

    Hang in there!

  7. How sad that another doctor is not listening. Don’t blame yourself. It’s your pain, and when you are suffering so much it’s expected that it’s difficult to articulate. When you’re at your worse you need your doctor, and he wasn’t there for you. Great job for firing him. When I’m in so much pain I can’t even think to take anything for pain…and I have it available! Exhaustion can never be underestimated. When you have nothing left…what else can you do but use the heating pad and rest. Take care and know I am thinking of you.

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