Get Your Story Straight!

Begin reading with Part 1

The Long Roller Coaster, Part 3
January 2008

Rant warning!

A few days after my appointment the PA phoned.  He claimed to be surprised by my lab results.  Although my RF was negative, my CCP was strongly positive. Something else to look up at LabTestsOnline!

With a positive CCP, he wanted me to start on a DMARD right away.  My follow-up appointment was rescheduled for a closer date.

Five weeks later I went back for the follow-up.  My feet and hands already felt better because I’d responded very quickly to the DMARD.  An added bonus that I wasn’t expecting:  I had more energy than I’d had in years.  Turns out that fatigue is a symptom of uncontrolled RA.  Since I was doing so well, the PA-C said, it helped to confirm the RA diagnosis.  He added a prescription NSAID, insisted on a CCB to treat my Raynauds, and said he’d add a second DMARD next time.  He was very impatient with my questions.

The PA also told me that a strong positive on the CCP was what he’d expected to find.  ????  On the phone he said he’d been surprised at the results. Get your story straight!

continue to PA

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originally written as one huge post and published 1/15/09 on the Arthritis Foundation’s host, I have broken this into a number of smaller posts

Back on the Roller Coaster

Begin reading with Part 1

The Long Roller Coaster, Part 2
November 2007

The more I learned about rheumatoid arthritis, the more confused I got.  RA should be treated with NSAIDs and DMARDs or a BRM.  Why did I not receive one of those?

Instead I received a pain killer.  I don’t like taking pain medication. It’s easier to deal with pain than with the side effects of medication.  Breathing is more important!  I hate it when my throat swells up so much that it’s hard to breath!  I’ve had bad reactions to three different kinds of prescription pain pills, and I’m not willing to try another.  First time I ever got mad at a nurse on the phone.

The more I learned, the more I was convinced that the guy had been wrong about my diagnosis.  He said  that I had RA, but was treating me for fibro.  I’m not convinced such a thing really exists.  It’s easy to explain all the symptoms without inventing a non-disease.

  • I was tired because I’d had four babies in five years (and three years later had one more).  Five kids in eight years would make anyone fatigued!
  • I did not get a good night’s sleep because 1) children calling, “Mommy!” in the middle of the night wakes me up, and 2) every time I rolled to either side, the pain in my hips (bursitis) awakened me.  Nobody feels well-rested when they’re awake more than they’re asleep.
  • As to the tender points test, I wanted to scream, “quit poking me and it won’t hurt!”
  • I learned that lack of sleep can cause a number of problems, including muscle pain.

I’m not the only one who doubts the existence of fibro.  Even one of the doctors who came up with diagnostic criteria for fibromyalgia has backpedalled.  Everything I read led me to believe that fixing the pain in my hips would alleviate most of the fibro symptoms, and teaching my night-waking child to go back to sleep without my assistance would help with the rest.  That has proven to be true.

At my follow-up appointment, the PA entered the room and announced, “It looks like you’re medication sensitive.”  Already I wasn’t sure if I liked the guy, and now he blamed me for his prescribing error!  I said I was allergic to one pain medicine. I didn’t want another.  He insisted that I needed to take pain pills all the time.  Not a good way to start the appointment.

He went over my lab results from the previous appointment – I’d received a copy in the mail, so already knew that my ESR, CRP, and RF were well within normal limits, and even knew what that meant.  I was told to take glucosamine, get shoes with better support, and phone if I wanted a referral for PT on my shoulders.  Why I couldn’t have a referral right then, I don’t know.  I was offered pain medication in a patch, but declined.  He just didn’t get it:  I don’t want narcotics!  So I received instead a prescription for a topical NSAID gel, was sent for more lab work, told to come back in three months, and rushed out the door.  I drove this far for that?!  I left very frustrated that I had been told that I have RA, but was not being treated for RA.

I hate roller coasters!

continue to Part 3

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originally written as one huge post, and published Jan 15 on the Arthritis Foundation’s host, I have broken this into a number of smaller posts

The Long Roller Coaster

Learning that you have RA is like a roller-coaster ride.  Physically and mentally, it’s an up-and-down process.


The first inkling I had that anything was amiss came one spring.  I had done nothing to hurt myself, but every night at bedtime, one particular spot on my left hip would hurt when I rolled over.  It felt like a bruise, but nothing was visible on the skin.  Bruises aren’t too serious and eventually heal on their own, so I ignored it.  That didn’t work, and the little sore spot got worse. It got larger and easier to feel.  It started waking me up at night.

Then LSS (little sore spot) got bigger and made itself known at other times.  It didn’t like being ignored.  I could feel it all the time, not just when I rolled over.  LSS even recruited help, calling in reinforcements from the other hip, so I took to sleeping on my back.  I also discovered that that this particular location on my hips is at the exact height as the cutting-board in my kitchen – one I apparently run into five or six times a day.  When I’d get up in the middle of the night to check on kids, I inevitably bumped into the corner of my dresser and the sore spots cried out:  one side as I left the room, and the other side when I returned.

It finally occurred to me that I should probably have it looked at, but I get up at 5:00, and am running full-tilt by the time my doctor’s office opens at 8:00.  I’d forget about it during the daytime, and only think of it again at night, after the doctor’s office was closed.  Months went by.  One day a friend watched me limp across the room and asked, “When are you going to call the doctor about that?”  It was a few more weeks, however, before I finally made the call.  By then, I could barely walk.

Sometimes it takes a few days to get in to see my PCP, but the ARNP will see people on the same day that they call.  She first thought it sounded like bursitis, but ruled that out since I hadn’t had any injury.  Her next guess was OA, so sent me for x-rays.  And, just to cover all the possibilities, had the lab runs some tests, too.  My x-rays looked great.  No OA, which I was happy to hear.  On the labwork, my ANA was positive, so a referral was written to a rheumatologist.

After waiting nearly five months to call my doctor in the first place, I now had to wait another two months to see the rheumy.  In the meantime, his office mailed me their five-page intake form so that I could complete the paperwork accurately without being rushed.  I also used the time to learn about the ANA test – labwork I had never heard of before, but that was now important.

In reading about ANA and associated diseases, I pored over lists of symptoms and diagnostic criteria for RA, SLE, and scleroderma.  I was concerned that my labwork had mentioned SCL-70 antibodies, but didn’t think the symptoms were a match.  A very good friend is an occupational therapist, and I discussed things with her.  We both decided that it did not sound like I had RA.  I thought maybe SLE, but a retired medical technologist I mentioned that to said, “only teenage girls get that, and they die before they’re 20,” so was left not having any idea what was wrong with me.

Strange as it seems now, I hadn’t realized that the odd swelling in my hands and feet was related to the pain in my hips.  I had commented once to my husband that it was weird how my hands and feet felt swollen when I got out of bed every day.  It gradually worsened, and instead of just being swollen, my feet hurt when they hit the floor in the mornings.  I would immediately fall back onto the bed to take the pressure off my feet, then gradually ease them onto the floor and hobble to the bathroom.  Since my husband has a tendency to be extremely protective of me, I made a point of sparing him knowledge of this new development by waiting to get out of bed until he got into the shower.  But one morning he forgot something and returned to the bedroom just as I yelped in pain and dove back onto the bed.  Still, neither of us made the connection that this was part of the same thing that caused my hips to hurt!

Once the morning pain and stiffness wore off I was fine.  Unless I leaned on my desk – then I’d get a sharp pain in my elbows.  I took to resting on my forearms instead of my elbows, and still didn’t make the connection.

The day finally arrived.  I’d been specifically told that children should not be brought to this initial appointment with the rheumatologist, and that I should allow two-to-four hours because they’re very thorough.  I drove half an hour to drop my kids off with friends, drank three cups of tea with them, then hopped onto the freeway and drove another hour to the doctor’s office.  As I handed the receptionist a file folder containing my prior x-rays, my copay, and my completed questionnaire,  I asked if I could use their bathroom.  At this point the receptionist is supposed to tell where to leave your urine sample.  Instead she directed me back out into the hallway, to a restroom available to the entire building, so I assumed that they did not need a sample.  Wrong, and they weren’t too happy that I couldn’t provide one (but at least they recognized the error was on their end, I had asked first).  I would be there a while, so drank a glass of water and they eventually got their sample.

It turned out that my rheumatologist doesn’t actually see all the patients in his practice.  He employs a number of Physician’s Assistants to deal with patients while he focuses on research.  My PA-C went over every question of the five-page questionnaire, and took notes for my chart.

Regarding one of my answers, he wrote “asymptomatic…”  When I questioned him (since the pain sent me to the ER on more than one occasion, I didn’t think “asymptomatic” was accurate) we got into a side discussion.  He was very dismissive and bristled at the idea that there could possibly be a treatment (outside of his specialty, yet) that he hadn’t heard of.

Aside from that, he listened to my bizarre assortment of symptoms and then did a physical exam.  Less than a minute into the exam he announced that he knew the problem with my hips and he could easily fix it.  I wasn’t sure if he was arrogant or just self-confident, to have figured it out so quickly, but was relieved to know that I might leave there feeling better.

I was taken to the x-ray room for films of hands, wrists, knees, and feet (but not of my shoulders, which were, by then, hurting as much as my hips), then back to the exam room.  Based on my answers to some of the questions, he did a tender-points test (which I’d never heard of), and after a while said, “That’s twelve, that’s enough,” and proceeded with other parts of the exam.

It was very unusual to have the PA-C leave the room to write up his findings, then come back and double-check the answers to a few questions or do another test, then leave again and repeat the process.

One test immediately made my right hand start tingling, and he said I had carpal tunnel (which I already suspected), but his report back to my PCP said the tests for that were inconclusive.

After three-and-a-half hours, I was exhausted.  The doctor came in and the PA-C presented his findings, the two of them read my x-rays, and the doctor asked me a few questions.

The doctor and PA had an argument a discussion as to whether I really had RA.  The PA thought yes, the doctor didn’t sound convinced but nonetheless told me that my diagnosis was rheumatoid arthritis and fibromyalgia.  “There’s no joint damage on the x-rays, and we can prevent you from ever having joint damage,” was good to hear.  He also said that I had bursitis in my hips and a cortisone injection would have me feeling better within an hour.

With his hand on the doorknob to leave, he asked if I had any questions.  What patient wouldn’t have questions? I was stunned to hear that I had one disease I thought for sure I didn’t have, and another that I’d never heard of.  I didn’t even know where to start, so the doctor left.

After the cortisone shot (only one hip, because insurance will only cover one shot at a time), the PA-C gave me a prescription for pain medication, wrote orders for the lab, wrote a referral for physical therapy for my hips, showed me where to get my blood drawn, and said he’d see me in a month.  I left the exam room with mixed emotions and my head spinning. I sure could have used a little more information.

So began my roller coaster ride…

continue to Part 2

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originally written as one huge post, and published 1/15/09 on the Arthritis Foundation’s host, I have broken this into a number of smaller posts, collectively titled Roller Coaster Series