Let's Talk Pain.

 Pain has been in the news a lot lately due to the concerns of the opioid epidemic and how illegal use of prescription pain medications and illegal heroin and fentanyl are killing so very many, especially in the Midwest.  The government has cut back, not only on the actual supply of opioids made for legal use, but also on what doctors can prescribe, and chronic pain patients have been speaking up.  So, let's talk about pain, something I have lived with for over half my life now.  More specifically, let's talk about how medical types (doctors, nurses, support staff) deal with patients in pain.

First, as a point of explanation, I cannot take pain medication.  I am not allowed to take any NSAIDs due to only having one kidney and that not doing as well as anyone would like.  I cannot take opioids because they don't work (it's a genetic thing--thanks, Dad!).  I cannot take the psych meds often prescribed for pain, also due to genetics.  I have horrific reactions to them (one made me start to go blind by the third day--yes, I get those kinds of reactions).  So, I do not take any pain medications for my severe fibromyalgia, chronic daily headache, and other painful conditions.

I have had a lot of experience with medical types, from having been married to an internist (we dated in college, married in med school, stayed married through residency and his first couple of jobs as an attending, and he left me for a nurse--it's a rather banal, common story) to having chronic pain for over 22 years.  I had chronic appendicitis for ten years that was misdiagnosed as endometriosis (8 doctors missed that, so I don't really blame anyone), two major surgeries in a year, lost my right kidney and three inches off to two ribs to a large kidney tumor, and more.  I'm a compliant patient who sees her doctor more than once a year for kidney checks, etc., and I do my best to do whatever my doctors tell me to do.

I've got several doctors involved in my treatment these days, and I've been through tons of tests.  I used to be flat-out terrified of hypodermic needles, but two surgeries in a year and all the follow-up kicked me of that phobia.  I'm not an easy stick, so any time I have to get an IV, they have to stick me, on average, three times.  A few people have gotten my IV in on the first try, and the record is seven sticks before getting one to work.  I've been assaulted by an ultrasound tech doing a vaginal ultrasound, I've had good doctors, I've had bad doctors, I've known great nurses, and I've known callous terrors.  I've been through a lot, and it isn't over (especially if/when my kidney gives out).

I know pain.  My average pain level these days is a seven, and no, I'm not exaggerating.  See, I know that many med types think patients exaggerate their pain levels to get meds (which I can't take) or attention (don't need that), but I have refined my pain scale over the years.  My personal pain scale:

• 1-2     Barely ever have this anymore.  Honestly, I never use these numbers  because they don't exist for me.
• 3-4     Slightly annoying.  Easy to ignore for long stretches, but then it reminds me it's there.
• 5        Used to be my average.  Easy to ignore for an hour or so, maybe longer in cases of emergency or if my kids need me.  I'm still fairly functional but start finding attention and recall to be difficult.
• 6        The pain is getting harder to ignore.  I can still ignore it for up to an hour, but it's much harder to do so, and it comes back with a vengeance when I do.  Recall gets harder here, especially.
• 7        I can ignore this pain only for half hour bursts.  It grabs my attention whenever I try to do something normal (like, walk), and it makes thinking, listening to conversations or videos, and recall difficult.  It's also the pain level I had after my exploratory laparoscopy without pain control and the beginning of labor in both of my natural deliveries.
• 8        I cannot ignore this pain except for a few minutes at a time.  I can still smile, but it's harder to hide the pain.  This one was later in labor when the contractions were harder and closer, what my ovarian cysts often hit me with, and what my headache can go to randomly.  I'm functional but barely.  I have a lot harder time remembering anything or following any conversation or what I'm reading.
• 9        I start having trouble talking at this pain level.  Breathing is a chore, and I start to go inward, really struggling to deal with the outside world at all.  This was my last year of appendicitis daily level and what months after my kidney surgery were like.
• 9.5     I stop being able to talk at all.  It's scary, so I have to fight down a panic response at the same time as deal with the pain.  I can scream in my head, and I do, but everything slows down, and I can't get words out.  This is what my natural births got to at the most painful parts and what my first day after the kidney surgery was.
• 10      This is when I start seeing stars and start passing out.  Yes, it's possible to pass out from pain alone.  I have, several times, and it's very unpleasant.  My body is overwhelmed with the pain level, and it shuts down on me without my permission.  This was the pain level I had when I woke up early in recovery from the kidney surgery (again, with no pain control), and they rolled me for the x-ray.

I know pain.  I've had ovarian cysts (2+ a year) since I was 22, had appendicitis for 10 years (intermittent for the first 9, solid for the last year, almost went insane from the pain), have had surgeries without pain control, broken bones, and I have fibromyalgia now, so my body thinks pain is a normal state.  Even little things hurt, from certain sounds to someone grabbing my arm too hard.  My skin feels like it's sunburned all the time now (allodynia is a fibro thing), and the pain from that waxes and wanes as my fibro flares up and down.  I have a constant headache now, and that can go from easy to ignore to crippled by it depending on the day.  Every muscle hurts.  I don't even have to do anything for that to be true.  It's just my reality.

So, let's talk how pain is seen by med types.  Some are truly caring.  I will never forget the urgent care doctor who got tears in his eyes when he realized that he couldn't do anything for my pain when I broke my elbow.  He was horrified that I was in that much pain and shrugging it off, but it wasn't like I could do anything else.  He was a real doctor.  My primary care doctor, an amazing internist, truly listens and cares and doesn't like it that he cannot do anything, same with my neurologist.  They are all great physicians.

Then there are the ones who don't believe me.  My ex told me that my pain was all in my head for years when it was appendicitis and a kidney tumor.  I've had doctors roll their eyes when I tell them what my pain level is.  I have had ER doctors try to accuse me of being a narc seeker until I tell them to read my chart and then watched their eyes go big when they see the long list of meds I can't take with all opioids right at the top.

Here's a recent example: the phlebotomist at 2 a.m. who ripped skin off with the tape and didn't notice.  I don't know how she didn't notice considering she was looking closely at my arm, prodding for a vein for a blood draw, but she didn't.  When she decided to use the same vein, she firmly wiped the entire area, including the area she had ripped skin off of, with an alcohol wipe.  I gasped loudly in pain, and her first reaction was to blame me.  She said, "You have a strong reaction to pain, don't you?"  I said, "I have fibromyalgia, so yes, but anyone would after you put alcohol on ripped skin."  She then looked closer and said, "Oh, I guess you must have a bad reaction to tape or something."  I said, "No, you ripped skin off when you ripped off the tape."  She shook her head and didn't believe me, instead going forward with the blood draw and then telling me she would put the tape on a different way.  Thankfully, my night nurse was more than understanding and upset when he looked at it and gave me antibiotic ointment to put on the area.

I've had nurses hit nerves when trying to put in IVs (classic signs--severe burning sensation running up the nerve) only to tell me that it can't be true when I tell them that.  I've been yelled at by doctors and a dentist for crying in pain.  I've been told that I'm overreacting more times than I care to count.  I've been told that blood pressure cuffs don't hurt (until I show them the bruises), that they will get an IV in on the first try because they're the best and then get angry at me when they can't and start pulling the tourniquet tighter and tighter each time (bruising me more each time), that something won't hurt that does and then blame me for it hurting, and more.  The ultrasound tech who assaulted me didn't even look at me as she was doing it, just stared at her computer with a blank look on her face, and when I talked with the head of the practice, the doctor told me that it was my fault for not telling her to stop, ignoring that I was at a 9.5 and literally seeing stars and couldn't talk.  

See, many medical types find that the only way they can do their jobs is to otherize their patients, to become callous to cries of pain.  They start saying all patients lie, that all patients are narc seekers, that all patients are just weak and it doesn't hurt that badly.  They lie to themselves so they can keep going to work every day and hurting patients in hopes of helping them get better.  They have to blame the patients: if they start looking too closely at what they're doing to people already in pain, they won't like themselves anymore.  I understand why they do it, but let's at least admit that they're lying both to themselves and each other.

When we talk about pain, let's at least be honest.