9/1/2012 Rheumatoid Arthritis Diary: the ER visit from hell + an update

So I spent 11 painful, fruitless hours at the Duke ER on 8/29-30, arriving at 5PM and leaving at 3AM. I'm just now sentient enough to write about it.
It began when I had to stay home on Thursday because on the day prior, I had an episode of pain that was sudden and shocking in its intensity.

While walking from my car in the afternoon to PT at the local children's hospital (it has a heated pool), it was like a switch was flipped in mid-step -- a lightning bolt of excruciating pain shot from my lower spine near the lumbar region of my back, completely 1) inflaming a different bursa in my left hip 2) almost paralyzing the muscles in my low back, 3) a sensation of excruciating muscular and nerve pain down both of my legs to the knee, involving my hamstrings and quadriceps, and 4) inflaming bursa in my right hip.

I had recently started a new drug for my RA, Humira, which has as possible side effects back pain and nervous system problems (including numbness, tingling, and weakness in your arms or legs similar to what was described above. They occur in around 6% of patients; I seem to be very sensitive to many medications and invariably fall into the categories with more rare reactions so I am always more alert for such things when I change or start a new med. One of the issues of concern with Humira is it's an injectible that is taken every 2 weeks, so if it was a temporary reaction to that, it would take another week and a half to clear my system.
I went home on Wed sore and hobbling and barely able to change my clothes. I took some pain meds and tried to sleep, which was nearly impossible Wed night because no position was comfortable, and most were excruciating, even with meds in my system.
Thursday morning I was able to hobble to the kitchen and write to my job saying I wouldn't be in. I was able to sit in a chair for a while, ate a bowl of soup and then stand up (since sitting started to hurt) write up my symptoms -- and actually blogged them as well). I called my rheumatologist and she called me back within the hour (!), and said I should go to urgent care. Kate had already left for work. I told her that I wasn't in distress, just very uncomfortable and said Kate would take me when she got home.
My morning meds kicked in and with the extra 800 mg of ibuprofen I was able to go to bed and get some sleep, albeit in odd positions, using pillows to intermittently bolster my left leg depending on how the pain was pulsing.
What ended up sending me to the ER
It was an attack of a similar nature to Wednesday's. I woke up at noon, and my pain medication based on time, had worn off. After merely getting up from bed, going to the bathroom and then walking about 15 feet to the kitchen. The pain almost made me fall down because of its suddeness - that lightning bolt feeling again going from my low spine and around down the sides of my rear end and thighs (the left side much worse than the right). The pain then increased dramatically, with the muscles in my left leg tensing uncontrollably.
I hobbled to the sofa and fell down onto it...and screamed. At the top of my lungs. The poor dogs were scared.
I could find no position to quell it as the pain ratcheted up the scale to what is now my new 10 out of 10 level (a kidney stone attack was my prior 10). I couldn't get to a phone, I would have been incoherent anyway. I tried to lower my pace of breathing and focus on trying to find any position that would stop the pain. I ended up hanging off of the sofa, upside down, with my left leg in the air. I stayed like that for about 10 minutes as the pain lowered, likely because I wasn't putting any body weight on the leg and gravity was working in the opposite direction. I kept chanting to myself that "this is not happening...you have to get a grip to get out of this."
I had to think -- what do I do? If I manage to get to a phone and call 911 there's no way they can 1) get in without breaking the door down because I can't get to it and 2) put me on a gurney. The thought of being put flat on my back was intolerable. So I rationally thought -- I need to get a pencil and pad so I can write down emergency contact info if I did call 911 and for Kate so she had it to convey if I was in too much pain to speak coherently.
To get that pad and pen meant I had to get up off of the couch and make it back to the kitchen. There was no guarantee that the pain wouldn't surge once back on my feet. Crawling wasn't an option either. That position would be equally excruciating.  So I steeled myself, and hobbled as fast as I could, grabbed a pen and pad and made it back to the sofa in screaming level pain. Went back upside down for 20 minutes and screamed for about 10. I couldn't even contemplate writing anything. When I did, the F*CKING PEN WAS OUT OF INK. Oh. my. god. no.
Plan B. I didn't think I could make another trip to the kitchen given the pain level cost it was to get there. I thought, I need to get to my sledgehammer pain meds. I figured if I could get a couple in me, it might numb the pain down to a level of control so I could get to the ER.
I made another screaming trip to the kitchen, took 2 pills and then got back to the couch and was at this point crying in pain. How long would it take for the med to kick in? Lying upside down again, Casey (my pit bull) came over to comfort me (or see wtf was going on). I petted her and tried to relax, legs in any position that wasn't excruciating. It took about 20 minutes for it to start working because I felt sleepy. Once the pain got down to about a 5 I was able to sit upright.
With the pain level down I couldn't feel my left leg. It was both numb and tingling, now all the way down to my foot. It was like swinging a dead appendage around. I could put weight on it (painfully, but tolerable compared to what it was 20 minutes earlier), and was able to write up notes, drink some fluids and prepare to go to the ER. Put on a dress because there was no way I could lift my legs to put pants on, put on clogs so I could get my feet in and out without bending. Waited for Kate to get home.
The ER
I figured it would be a long haul but not 11 hours. We arrived at Duke ER, and I was seen in triage within 20 minutes. They took my vitals and the first description of what I had experienced (I had to repeat this story 4 times to 3 different doctors/nurses). All of my medical records and medication history is in the Duke system (and online), so you'd think they could pull it up in Duke ER. You would be wrong. They only had access to stats from a past visit 5 years ago. Thank goodness I had printed out my long list of medications before leaving home.
But what if I had arrived without it, and in pain so great I couldn't concentrate to remember anything? I guess patients are screwed.
I was sent back out to the waiting room in a wheelchair. The room monitor said that wait times were extended because there was overcapacity in the hospital, backing up traffic in the ER as patients waiting to be admitted were being held in ER rooms. The wait time was supposed to be around 5 hours.
Kate and I sat in a room full of people in conditions you'd expect -- wrapped in blankets, lying on benches, coughing, sneezing. Kids crying. Some people with clearly minor trauma injuries -- one woman looked as if she had a bad cut on her hand and had it wrapped and in ice, many others there because they had some kind of respiratory condition/flu/cold.
All I could think about was what was going to happen when the pain meds I had taken before leaving wore off while sitting here waiting to see a doctor. I would be a screaming maniac if I had to stand up and bear weight on my legs.
A few hours went by; Kate wheeled me to the bathroom and back. She went to get a snack. I refused to eat because if the pain ratcheted up again, I knew I would throw up. I wasn't hungry anyway.
Time goes by slowly. Every two hours people were called up by the nurse to get their vitals checked (BP, temp, oxygen levels) and sent back to the waiting area. The TV had a football game on. Eventually the last evening of the Republican National Convention came on. I think ABC was on, and broke in when Clint Eastwood gave his speech.
[No sound was on, so you could only read the closed-captioning. Later the next day when I got home I realized that the captioning wasn't incoherent, it was Clint rambling on like your crazy elderly uncle.]
A few minutes later a gentleman rolled his girlfriend/wife next to me, facing me. She was in a lot of pain and distress, but it wasn't apparent what was wrong with her. I found out when she started hacking, wheezing -- she had no mask on, didn't cover her mouth and then proceeded to vomit. After the fact her husband goes and gets a mask and barf bucket.
People across the room were horrified, I was trapped there in the wheelchair. Kate got up and wheeled me away, but of course it was too late not to be exposed to whatever she had. The scary thing is that some of the RA drugs I take suppress my immune system. Even the common cold can land me in the hospital, so I've been told to avoid places like ERs, airplanes, large conferences if at all possible. Nice.
The "expertise" of the ER doctors - moving bodies out
Finally, at midnight, I get in to see a nurse, who preps me, puts an IV in and draws about 6 tubes of blood. The resident comes in and does the usual drill of asking me why I was there, what was believed source of the pain and where the pain was located. He does a cursory examination after I explain the locations of the pain.
He dismisses the possibility that Humira is involved, despite the drug's web site clear listing of side effects that included what I was experiencing. He thinks its some sort of issue with my spine involving my discs. He does this without doing any kind of diagnostic test, like an XRay. I asked him several questions about why my pain occurred suddenly, I had not had back problems before, and why he believed there wasn't a possibility of adverse reaction to Humira. His answers were, to say the least, poorly informed and he referenced some study about Humira that wasn't relevant to the particular problems I was experiencing. The main issue was that since he hadn't seen a reaction of the kind I was presenting that apparently I couldn't be in that 6% of people who do experience those side effects.
He suggests a muscle relaxer - Flexeril. I told him that in my chart I have contraindication for Tramadol, because it causes seratonin syndrome and that my rheumatologist had told me in the past that Flexeril could cause a similar reaction. He goes "oh yes, thank you for telling me that."
Damn. What if I didn't tell him? He clearly didn't read the Tramadol contraindication in my records.
He then said he would speak to the consulting doctor in the ER.
Well, I laid there in pain for a while, then doctor #2 comes in. She's a bit more on the ball; she doesn't dismiss possible involvement of Humira, but suggests a different reason for my pain than dr. #1 - sciatica. OK. So does this present so suddenly? Does it go away and resolve on its own?
She really doesn't offer any satisfactory answers, but does a better job than doctor #1 of CYA. What made no sense again was that she doesn't suggest getting an x-ray or MRI to help eliminate other possible spinal matters. Because I was persistent in seeking answers about what the source and origin of this sudden acute pain could be, she was clearly frustrated. She said did I want an x-ray. I said yes, I'd rather eliminate disc involvement if that can detect somethign obvious. She said OK.
Since Flexeril was off the table, she then said the nurse would give me Valium via IV.
I've never taken Valium, but my casual understanding was that it's a drug for anxiety, not pain, but what do I know. The nurse administers it and I feel the room moving, I'm dizzy. Since I have not been on my feet for 6.5 hours, the pain is not as acute because no weight bearing has been on them. I get wheeled to x-ray. I only have to slide from the gurney onto the table. They do a couple of views and I'm back on the gurney and wheeled back to the room.
I fall asleep from the Valium. Kate gets a blanket and sleeps in the chair next to me. About 90 minutes later, the doctor comes in and says she wants to see how I walk on the legs in prep to send me home. I walk with a nurse following me up and down the hall and to the bathroom. I am shaky and disoriented from the drug, but able to bear weight with some low level pain (~3). We go back to the room.
The doctor says the x-rays show no spine damage and that  I'll be given medication scripts told to make an appointment with my rheumatologist next week (after Labor Day, so that's 5 days later) and discharged. I was given a sheet with prescriptions for Valium (take 3x a day for pain), and 8 pills of oxycodone to take every 6 hours for pain. Now my math isn't very good at that hour and in that state, but there's no way 8 pills every six hours will last 5 days for acute pain that I was experiencing.
I realized at that moment what this whole rigaramole was -- the ER is probably full of prescription drug seekers and these doctors are so jaded that they have become immune to actually performing good medicine or even good cover your ass medicine. They think many patients coming in with pain want narcotics -- and they would probably be right -- but this display of dismissiveness and lack of desire for diagnostic tests that may be helpful go out the window when there are so many bodies to process in this busy ER.
The poor ER care was worse than I thought - and seeing my rheumatologist for follow up
So I get home and about an hour later, whatever "painkilling" properties exist for Valium had worn off. I was limping and barely able to make it up the stairs from the garage. I quickly get online to look it up. Valium (diazepam):

Diazepam is used to relieve anxiety, muscle spasms, and seizures and to control agitation caused by alcohol withdrawal

Nothing about acute pain treatment, it's a sedative. And, by the way, it didn't help with the muscle spasms either at 5mg. I emailed my rheumatologist at 3:30 AM and told her about the ER experience. Around 8 AM she called me (!) and said she wanted to see me and slotted me in for her last clinic appointment around 11:30 AM. Kate drove me in, and I was placed in a wheelchair since I was too weak for the long clinic walk.
The rheumatologist was able to access the official ER records from the visit, and told me:

• They took the blood vials then ran no tests on it of any kind
• The x-rays taken were not even done on the correct part of my back
• Dismissing the possibility of Humira didn't make sense
• Valium was mis-prescribed for the need
• The 8 pills of oxycodone, which would actually address the acute pain, was a ludicrous amount given it was supposed to last for 5 days.

The rheumatologist performed some basic neurological and strength tests during the short visit that were revelatory in ways the ER doctors' assessment fell far short. My left leg, which was still numb and dead-feeling, failed not only a strength test (I couldn't pull hard enough against her hand to stop her from moving it) but she couldn't get a reflex from it when she tapped my knee.
Something neurological is definitely going on, now the mystery is what is it -- Humira or something going on in the spine? The only way to eliminate spinal involvement is an MRI.
Kate then wheeled me went to have blood panels drawn, then down to x-ray for a correct one of my spine. I'm going for the MRI on Tuesday at the Cancer Center. If it's OK, then it's most likely a rare reaction to Humira and I'll have to halt taking it just to be safe, let it clear my system and see if the symptoms abate. If there is spinal involvement, then I'll be referred to another clinic.
Now to recap...

I'm to stay off my feet as much as possible, ice the bursa, stretch as best I can, and take pain meds and not drive for several days until the pain and inflammation is under control and the MRI is analyzed.

1. 11 hours in the ER = $250 co-pay = zero effective testing and treatment
2. 90 minutes in Duke Clinic with my rheumatologist = $45 co-pay = effective testing and treatment and follow up.

I am grateful to have health insurance; but this incident should show you the waste and poor care we see because ERs are not the place for basic health care, yet they are full of people who are getting it through the ER instead of primary care physicians, clogging these waiting rooms for acute care that probably can be avoided. The doctors are overworked and stressed and in at least this case, seemingly focused on moving bodies in and out, trying to dodge drug seekers, and ultimately not providing the best assessment or care they can. And that also means a lot of people less fortunate -- without a caring specialist or doctor for follow up -- will end up right back in that ER waiting hours on end without ever receiving the care they need to heal.