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Unwelcome comments about body changes

February 12, 2014

Weight LossFat HealthFat ScienceExerciseMy Boring-Ass LifeDickweedDiet Talk

Trigger warning: Eating issues, discussion of weight changes

In my constant pursuit of some amount of reasonable pain control from my spine injury (and the permanent nerve damage that resulted), I’ve been through the gauntlet of medication attempts that have made me feel like a human guinea pig.  All of this is complicated by a recent push from the FDA to further restrict opioid pain medications because of the high risk of addiction and possible overdose. It contributes to a pain clinic culture where every patient is a potential painkiller addict, and it sets up a really difficult power dynamic, especially combined with a fat body.

So first I tried Neurontin, also known as gabapentin. This put me on a severe emotional roller coaster that had me alternately yelling or crying at my partner. That was a rough week for everyone involved.

Then we tried nortriptyline and one of its cousins. Both are tricyclic antidepressants that some people find help with nerve pain and have a known side effect of making people sleepy (which can be welcome to people who can’t sleep sufficiently due to pain). It helped the pain a little, but made me too sleepy and made it hard for me to concentrate… something that I can’t handle while working on my PhD. I spent three months between those two medications.

The newest thing that the pain management doc prescribed is the one that prompted this post — Cymbalta. This is a newer class of antidepressant (SNRI) called duloxetine that can have an Cymbaltaimpact on nerve pain. I was hopeful because we’re running out of non-narcotic medications that my insurance will cover, but I ended up winning the bad side effects version of the Hunger Games (I know, hyperbole).

I started out with nausea that lasted a week and a half. On top of that, I’ve been dealing with severe fatigue that keeps me in bed most of the time and muscle weakness that makes it hard to even move my 5 pound laptop because it feels like it weighs 50 pounds. I haven’t done purposeful physical activity since I got on the medication (no physical therapy exercises, no dancing, no walking or wheeling).

The thing is that I know my weight has changed, but I also know that a lot of that was muscle mass that I really need to be able to keep my messed up spine working the best that it can and to move my fat body through the world. I’m afraid that my pain doctor is going to try to convince me to stay on this medication that makes me dislike most foods (Ritz crackers are the bulk of my food right now because, as our own Shaunta has found, no food equals no energy, so I’m trying not to exacerbate an already bad situation). The lack of energy keeps me mostly immobile, but I would bet this has resulted in a change on the scale. I’ve already quoted the US national physical activity guidelines to my doctor several times (hey, I’m a kinesiologist… it’s what I’m passionate about), but since I’m fat, weight loss at any costs is seen as ideal.

I’m trying to not freak out about my upcoming appointment, but between my doctor’s ongoing fatphobia and my need to figure out some sort of reasonable pain management scheme that keeps me working, in school, and gets me back to being physically active, let’s just say that I’m hoping the appointment doesn’t get delayed because of an incoming snow storm in the Southern US.

Casey Sig

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13 Comments leave one →
  1. vesta44 permalink
    February 12, 2014 11:21 am

    I’m sorry you’re having to deal with this, it totally sucks. I’ve been dealing with chronic pain for over 20 years now and have had little to no success with getting doctors to take my pain seriously and prescribe something that actually works to lessen my pain (forget about getting any drug that will actually take all the pain away). I’ve been prescribed relafen, Cymbalta, ibuprofen, naproxen, and told to take extra strength Tylenol. Yeah, none of those came even close to touching the pain I have to deal with on a daily basis. The only time I’m not in severe pain is if I’m sitting/lying down. Can’t get much accomplished from those positions.
    When my various doctors have asked me to rate my pain on a scale of 1 to 10, they get all pissy when I tell them it’s a 12 or a 15. They say that level doesn’t exist. And I tell them to come live in my body for a few days and see how they rate the pain on a level of 1 to 10. I’ve tried to tell them that I’ve dealt with the pain for so long that what they think is a pain rating of 7 or 8 is a good day for me and if they had to deal with my really bad days, they wouldn’t want to live, let alone get out of bed and actually do anything. Case in point – I got a tattoo 12 years ago, and was told it was going to be painful and to prepare myself for that. Yeah, the pain of getting a tattoo was nothing compared to the pain I face on a daily basis. I would have rated that a 1 or 2 on that scale the doctors are so fond of using. Hell, I was a pedestrian 42 years ago and got hit by a car – that was less painful than what I’m dealing with now. I’ve had two kids and their births were less painful than what I’ve been dealing with for the last 20 years.
    I did manage to get a prescription for Tramadol, but it works about as well as that ibuprofen/relafen/naproxen, which doesn’t say much for it. I think the reason doctors think chronic pain patients will get addicted to stronger drugs is because they aren’t used to dealing with patients who have severe, chronic pain that’s lasted for years upon years. So they think addiction is a problem and we’re going to take more of that pain relief drug in order to get high – not realizing that most of us could care less about getting high, we just want some pain relief so we can actually live our lives sorta kinda maybe pain-free for a change.

    • purple peonies permalink
      February 12, 2014 11:37 am

      i took NSAIDs for so many years that i destroyed my intestines… and then i found out within the last couple years that NSAIDs are totally contraindicated for the undiagnosed celiac disease i’ve had all my life, so that made everything so much worse. i can’t help but wonder how many people have been made to suffer MORE because of bad medical practices.

      i hate that stupid 1-10 pain scale. first off, my 5 would be an able bodied person’s 12, i guarantee it. if those people asking us to rank our pain were actually experiencing our pain, they’d shut the hell up and write down whatever number we pulled out of our asses. since that’s where the pain scale came from in the first place: some jerk’s ass.

      secondly, different pain ranks differently. acute vs chronic pain, dental pain vs sprain pain, etc… you just can’t rank it so easily.

      this is a better pain scale: http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

      • February 13, 2014 3:06 pm

        That is my favorite pain scale 🙂

        I’m with you on different kinds of pain. I presented a paper about my “fat embodied spine surgery experiences” at a conference last year where I talk about the moment where the pain scale exploded. It’s true. What used to be a level that would keep me from being able to breathe is now a lower number than it used to be (a lot of that is from being on hydrocodone for years, then generic percocet for 6 months before surgery, and now it’s been a bit over a year since surgery).

        Perceptions of pain change. Heck, like Vesta talks about above, I had my nose repierced a few months ago (I removed it for an MRI a few years ago and decided to leave it out), and the pain was around a 2 instead of the 8 that it was last time I had it pierced. Pain scales for people with chronic pain aren’t particularly useful IMO

  2. purple peonies permalink
    February 12, 2014 11:33 am

    I empathize with you so much. i saw this news, too, and i was infuriated.

    i am also a fat person with a spinal cord injury at L4 (like you, i’m a part-time wheeler and i keep active with accessible activities within my body’s limitations)… i’ve tried the old crappy medications and the only thing that works for me is a very low dose of an old but effective opioid. now that we’re all “pre-addicts” (tangent: do you remember that “pre-pregnant” BS years ago where the WHO or CDC defined all women of childbearing age “pre-pregnant” and insisted they take folic acid to prevent neural tube defects in unplanned fetuses?) we can’t be trusted with our own bodies and must instead take medication that is poorly tolerated and minimally effective, at best. they’ve also got the added bonus of being damn near impossible to discontinue should they not work or stop working after awhile. (seriously, the cochrane reviews and books like “Bad Pharma” and “White Coat, Black Hat” shed a lot of light on the overmarketing and exaggerated claims made by the companies who make these drugs. there’s a great but scary 300 page paper out there about Neurontin, too, and its unethical existence.)

    i refused to try SSRIs or SNRIs for pain management because i took them years ago for mental illness and they made me incredibly sick and really messed with my head. and those were at lower doses than they’re suggesting now (for mental health OR pain management).

    i am not anti-drug or anti-pharmaceutical company, and if these drugs work for people’s pain, then GREAT! i’m glad they’re available! this is WHY these drugs are available! but they’re not as safe as they appear on the surface, and they’re certainly not as effective. they’re trading one problem for another: the War on Drugs, healthism, ableism, sexism, and plenty of other of society’s ills are contributing to this culture where we’d rather create legal addicts and docile citizens rather than take the chance that 5% of those who are prescribed opiates may become addicted (which would involve educating patients AND healthcare providers about addiction, addiction treatment, and appropriate prescribing practices).

    i’ve taken hydrocodone for 5 years now, and my dosage has gone up and down. it’s now currently much less than the dose i started out at, because i’ve found using a wheelchair diminishes my pain significantly. additionally, i tolerate it really well (i do have some side effects but they are minimal and manageable, and if i go a few days without taking it, i’m not in withdrawal hell, as i would have been with the psychotropic drugs). however, every time i try to find a new doctor, or am sent to a new specialist, my tiny dose is seen as “pre-addiction” and we must do everything in our power to get me off this deadly dangerous drug and onto a deadly dangerous more expensive less effective drug.

    i’ve seen firsthand what addiction can do to a person. i’ve experienced the brunt of the abuse and harm an addict can cause. i was in a relationship with an addict who stole my medication, lied to everyone and had all her doctors snowed (she was getting her own incredibly potent pain medication too, because she also had a chronic pain condition). even by the time i figured this out and ended our relationship, she moved away and no one was the wiser. i’m sure she’s still lying to her doctors and abusing medication. and i think the solution isn’t treat us ALL like we’re drug-seeking pre-addicts, but to learn to spot these behaviors better, to educate people better, and to accept that we’re all the bosses of our own underpants. if 5% of patients prescribed painkillers want to abuse their medications, there’s not a lot we can do to stop them. they’re going to doctor-shop, or switch to street drugs.

    putting those of us who just want to live our lives a little more comfortably in the middle of this crossfire is just bad medicine.

    i wish you the very best of luck at your doctor. i wish i had advice or a positive outlook. a lot of it is just luck. whether the doctor is informed, having a good day, and receptive to an empowered patient. so i wish you tons of luck and i think you’re on the right track, for what it’s worth.

    • Elizabeth permalink
      February 12, 2014 1:53 pm

      purple peonies, you are so right when you say ” spot these behaviors better.” If medical personnel had an ounce of sense, they could quickly differentiate between addicts and others. My RN husband cares for many addicts and their behavior is very different from ordinary people in a lot of physical pain. Interestingly, the docs seem to give the addicts everything they want where he works.

      I, too, have chronic pain, but it is generally managed by rest, heat, and magnets (I don’t know what I would do without the magnets). I cannot take NSAIDs because they make me want to eat the house, I tried actual GABA (instead of the pharma version) and had even worse brain fog than normally; I do use Benadryl and promethazine (anti-emetic, antihistamine, sedative) and hydrocodone, the latter when the pain won’t ease.

      Looking for answers from doctors can feel so hopeless. It’s pretty twisted that in a society that encourages addiction we’re supposedly so worried about sick (and even dying) people getting addicted.

  3. February 12, 2014 2:24 pm

    Reblogged this on The Cheese Whines and commented:
    With fatphobic medical professionals and the fallacy of “drug seeking behavior,” the patient ends up being the one who suffers.
    I’ve heard more than one nurse in my time refer to a patient with severe chronic pain as having “drug seeking behavior.”
    People with severe chronic pain have to take doses of medications that are high enough that they’d put most of us under the table. They aren’t using these medications to get high (as you well know.)
    Stereotyping has never helped anyone. Yet it continues unchecked. It’s no wonder that I’m a curmudgeon.

    • Elizabeth permalink
      February 14, 2014 10:39 am

      You make such a good point, Cie. I could never understand how anyone could get high from Vicodin until I realized that when you have pain you get pain relief, when you don’t have physical pain you get high (it might be good to point out that addicts are medicating their pain, it’s just not usually physical pain). A friend who went to Sun Dances and took peyote helped me see this — they give the dancers peyote, which helps them stave off hunger and exhaustion and they do not have an hallucinogenic experience.

      My husband hates that term “drug-seeking” even though he has to deal with actual drug seekers on a regular basis.

      • February 14, 2014 4:01 pm

        “addicts are medicating their pain, it’s just not usually physical pain”
        Very true. The lack of sympathy for people with addiction issues is also distressing.

        • Elizabeth permalink
          February 16, 2014 3:47 pm

          An acquaintance told me about reactions on nbcnews.com to Phillip Seymour Hoffman’s death, which I found horrifying. Basically “die, junkie scum.” Yet Americans go around constantly patting themselves on the back for being such generous, kind people. I sometimes fully understand, living in this culture, why people want to escape any way they can.

          • Denise Mayosky permalink
            February 16, 2014 3:55 pm

            Horrifying, but not surprising. Compassion has gone right out the window in this culture. And this in a self-proclaimed ‘Christian’ nation. Sickening!

      • Mich permalink
        February 17, 2014 2:09 am

        I was thinking that maybe this is the basis for alcoholism, medicating non-physical pain. I think the end result is the same, but I don’t know any alc’s personally, so I don’t know.

        • Neeva permalink
          February 18, 2014 3:43 pm

          Might be physical pain as well. Alcohol boosts the effect of some painkillers.

  4. Dizzyd permalink
    February 12, 2014 5:07 pm

    I remember back in the ’80’s when we were told as kids to “Just Say No to Drugs”. Now it seems that it’s swung completely in the opposite direction. Now all you ever see on TV is drug ads that tell you about the latest drugs you HAVE to have!!! Just ask your doctor. Oh, BTW, here are the deadly side effects. (Or as Dave Barry put it “1) You need this drug, and 2) This drug could kill you”). Now all these drugs make up the majority of health-care spending and the sad thing that I’m taking away from all these comments is THEY DON’T DO ONE DAMN BIT OF GOOD!!! Well, maybe for a lucky few, but too bad for you if they don’t, we got OUR money! I feel bad for what you guys are going through, and I hope to never be in that position myself, but if I am, I think I’ll pass on the “wonder drug of the day”. You’re in my prayers.

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