What the Hell Is a Sed Rate?

Previously on The Diagnosis

We settled into our life in Phoenix. I was still doing weekly plasmapheresis treatments and had made inaugural visits to each of my other new doctors. Blood work was drawn about once a month at a lab that was on my way to work. Because appointments were not accepted, people would line up outside the building well before seven o'clock. Then there was a mad rush when the doors were unlocked to get your name on the list so you wouldn't be there all morning. It was chaotic and kind of stressful.

Ryan quickly found employment at ASU via a recommendation from a former co-worker at UT. He was working in the college of engineering, building and managing their distance learning program. Like mine, his office was in Tempe, though he had a much longer commute. It would take him 45 minutes on average to drive to and from work.

We had made friends. Two of them! A guy who was also named Ryan about our age started at my office about 2 weeks after I did and we got along immediately. He and his wife Trisha lived about 10 minutes from our house in Chandler. Two friends is not a lot, however, and we missed socializing.

Our hunger for entertaining led us down the path of concocting the brilliant plan to have BOTH families come to us for Thanksgiving that year. Seemed like a good plan. We had a house now. The families had met on multiple occasions and everyone got along.

I was practically vibrating with excitement leading up to Turkey Day as we missed our families and were starved for social interaction. Because our house was small, only the brothers stayed with us. Jason claimed the guest room and we set Doug up in the office with an air mattress and the company of Ryan's action figures. The Steans and McBride parents plus Ryan's cousin Susan set up camp at a nearby hotel.

I'm setting this up as if the whole experiment was a disaster. It wasn't. Everyone was agreeable and a good time was had by all. Ryan's great aunt, who lived in Mesa, joined us for turkey dinner. The thing is, even if everyone is playing nice you're still dealing with two separate families who have their own idea of how Thanksgiving is done. There were two moms used to doing all of the cooking trying to negotiate space and responsibilities and one clueless hostess attempting to conduct the whole operation. There was the need to entertain a large group of people with different interests in a city we didn't know all that well for four days. There was venturing out to dinner that weekend with no back up plan when every restaurant had a two hour waiting list. 

I had set myself up for trouble by getting so amped up so early for the occasion. I had been planning out details for months. Thanksgiving in actuality, while enjoyable, was incredibly stressful.

By Saturday I felt completely drained. The clan split with the women going shopping and the men off to the airplane museum. Doug stayed at home with me and we spent a relaxing afternoon chatting and hanging out with Melbotis and Jeff the Cat. 

Saturday night I woke up in the middle of the night with pain the back of my neck and left shoulder. So severe was the discomfort it was difficult to get back to sleep. By the following evening the pain had gotten so bad I couldn't turn my head or find a comfortable sleeping position, a migraine had formed, and I started throwing up. We headed to Desert Samaritan Hospital around midnight. 

Tests were run. Drugs were administered to alleviate the pain. First assumptions were that it was a pinched nerve, but I was having trouble isolating the source of the discomfort. It almost felt like it was moving around. Also I was having such a strong reaction that the doctors wanted to make sure it wasn't something more sinister. 

After a day they kind of shrugged, sent me home with painkillers and muscle relaxers and told me to make an appointment with my regular doctor. I placed a visit to Dr. Chang that week. He seemed puzzled and suggested I see my neurologist.

I saw three different neurologists during the course of our residence in the Valley of the Sun. We'll call this one Neuro #1, mainly because I can't remember his name. He sent me for a more in depth MRI during which I was instructed to not move any muscle even to swallow. You try doing that for forty-five minutes. That test still came back with nothing. There didn't appear to be anything medically wrong with me except that I was in extreme pain.

This continued for a few weeks. I tried to limit my painkillers and muscle relaxers to overnight so I wouldn't get addicted and would be able to function during the day, but the residual effects still muddled my mind at work. Sitting at my computer all day was miserable. It hurt to type, so I tried to do most of it with one hand.

I'm sure at this point my boss and co-workers were rolling their eyes at me. Everyone in that office was incredibly nice, but I was flat out coming across as a hypochondriac here. The kidney stuff they understood, even having to leave once a week in the afternoon for an experimental plasmapheresis treatment, but this was some nebulous neck/shoulder pain that I had difficulty explaining.

As with Thanksgiving, Ryan and I were similarly overly ambitious about Christmas that year. We feared one or both families would feel slighted if we did not come home, even though we had all been together for Thanksgiving. Thus materialized the plan to take a week off of work, fly to Oklahoma first and then Houston after that.

It became clear that I was not in any shape to be traveling anywhere. The trips were cancelled. It was not the first nor the last time I would ruin Christmas, but I still felt horrible for everyone involved. Mom and Dad quickly got reservations to fly to us and poor Doug got left out in the cold.

The week leading up to Christmas Day I finally started feeling better. Range of motion on my neck was returning and the pain was ebbing. I was ecstatic. Just in time for Christmas! I picked Mom and Dad up from the airport the day before Christmas Eve after work and shared my good news. The four of us went out to dinner that night. Midway through dining I started feeling the same pain and tightness starting to form on the other shoulder. The right one.

Shit.

The cycle started all over again. Was this ever going to end? What the hell was going on? This was obviously not some sort of injury or pinched nerve if it just up and switched sides on me.

After my parents departed I went back to Dr. Chang. Even though this didn't appear to be an injury he was running out of options and sent me to physical therapy. Great, another appointment that required me to leave work early. My co-workers must have been thrilled.

I did PT twice a week for four weeks. They put little electrodes on the back of my neck for about ten minutes (that actually felt really good), then I would get a neck massage (also a plus), then I went to the exercise room for stretches and strengthening. That was less fun on account of me not being able to turn my neck without screaming.

I couldn't tell if the therapy was actually doing anything. Much like getting a massage, it mostly felt good while I was there, then went back to hurting after I had left. I was really depressed. Even if this got better like the last time, would the problem just reappear in another part of my body? Or keep switching sides of my shoulders? It was even prohibiting me from doing normal everyday activities.

Just like the last time, the discomfort did eventually subside. After it was gone I waited. And waited. Nothing happened. The bizarre ailment I had been suffering for over two months had just....disappeared. I eventually let it drift away from my list of concerns, and I was able to return to a semi-normal life.

Two years passed. I was back having a regular appointment with Dr. Chang when he out of nowhere said, "Oh, by the way, I think I know what was causing your neck pain."

Wait. What?

"I didn't think of it at the time because it usually presents in patients quite a bit older than you, but you most likely had a high sed rate."

'What the hell is a sed rate' you say? I'm so glad you asked. A sed rate, or sedimentation rate, measures how quickly red blood cells fall to the bottom of a test tube. If that number is high it can lead to inflammation in your body that can be quite painful. Conditions that can cause a high sed rate include the autoimmune family, cancers, infection, and wait for it..............chronic kidney disease.

Well there you go. After two years I had my answer. At least now I knew I wasn't crazy. Major kudos to Dr. Chang for solving that mystery. If only we'd known sooner because the treatment involved a simple round of prednisone. We got to test the theory about six months later when I started to feel a little familiar twinge in my neck. I called Dr. Chang immediately.

Blood was drawn and indeed, I had a high sed rate. I went on steroids for two weeks. The pain never got any worse and was completely gone within a week. 

This completely annoying and agonizing experience was just another of the many wondrous side effects of kidney disease. I thought I had seen it all by then, but nope. This was the weirdest of them all. Though it was short lived, I have never forgotten that run-in with debilitating pain. Every time I go to exercise or stretch I think about that time I thought I'd never get the chance to move like that again. 

McSteans Clan in action

Next up: Phoenix Pheresis Phunzone