Fairy Tales

Once upon a time, a healthy person experienced acute onset of bizarre symptoms.  A call went out for a doctor.  The doctor took a good history, performed an exam, and diagnosed the malady.  Treatment led to healing.  The patient recovered, and they all lived happily ever after.

Real life isn’t like a fairy tale.

A diagnosis isn’t always so straightforward.  Doctor D recently (well, maybe not quite so recently – I started writing this a while ago) posted a link to an article that says, “Only half of patients with fatigue get a diagnosis after a year of work-up.”  It was a good article, but unfortunately when I went back to re-read it, the link was broken, so you’ll have to take my word for that (or not).

After reading that link, I wondered who would see a doctor about fatigue.  Fatigue was probably my first symptom, but I attributed it to just being part of the package with a bunch of babies in the house.  Of course I was fatigued; I spent all my time – day and night – taking care of little people.  Every now and then I’d look at friends with bigger families who were able to do so much more and wonder where they got the energy.  It never occurred to me to talk to my doctor about it, though.

RA Guy and RA Warrior are both doing a series of profiles on real people who have RA – in contrast to the case studies that live in medical textbooks.  At Rheumatoid Arthritis Warrior‘s blog, Kelly has a collection of onset storiesRheumatoid Arthritis Guy‘s blog includes a real profiles of real RA page.  I read these stories and think, “No wonder my doctor says my presentation is atypical!”  Wren just posted her onset story, too.

Symptom #1

Fatigue definitely qualifies as my first symptom.  I never bounced back after baby number four.  At the time, I thought it was just part of being a stay-at-home mom of little kids.  Nap time was strictly enforced, because mommy needed a nap!  Four babies in five years would make anyone tired.

My husband would often tell me, “Don’t overdo it.”  I feel fortunate that he recognized how tired I would get.

Symptom #2

My second symptom – one that actually sent me to the doctor – was when my neck swelled.  I couldn’t wear anything around my neck (even a t-shirt) without feeling like I was choking.  Apparently the swelling is internal because I’m the only one that can feel it.  The blotchy red patches, however, are visible to everyone.


My doctor didn’t figure out what the problem was, so I quit wearing any clothing that touches my neck.  And had another baby.  Multiple TFTs plus a thyroid ultrasound (just to  be sure) definitely establish that my thyroid works fine.  It’s something else that makes my neck swell, turn red and hot, and has me sometimes feeling like I’m choking.

Third Symptom?

One morning during that last pregnancy I woke with a hugely swollen hand.  Ginormous, red, hot, incredibly painful.  Something was seriously wrong!  Had the doctor’s office been open I would have phoned, but like most physicians, my doctor’s office doesn’t open very early (because he starts every day by seeing patients in the hospital).  By the time office hours came around I’d been up for a long time and my hand was back to normal.  I put it out of my mind.


Other people feel a cold coming on and gradually get sicker and sicker.  Not me.  One minute I was fine and the next I felt like I got hit by a ton of bricks.  I’m told that this is flu, not a cold, but nomenclature doesn’t really help.  I was sick as a dog (as was my husband).  A month went by and we got worse instead of better.  Finally I phoned the doctor’s office.  They squeezed us in that day and stuck us both in one exam room together.  Pneumonia:  nebulizer treatments, prednisone shots, four different prescriptions, and instructions to phone if we weren’t feeling better in a few days.  We both felt better the next day.  By the end of the week my husband was back at work.  I, however, got worse again.  Did I phone the doctor?  No.  I had felt better for a few days, so justified not calling.  Truth be told, I was afraid that they’d stick me in the hospital.  Friends brought dinner, did my shopping, and came over to do chores.  I was sick for three more months.  Pneumonia can trigger RA, but since I had symptoms before then it’s hard to say definitively.  It sure didn’t help.


The next symptom I noticed was incredibly bizarre.  Whenever I rolled over in bed, one specific spot on my hip would hurt.  The rest of the time I didn’t notice it, but every night I wondered how I’d managed to hurt my hip.  Most things get better on their own so I ignored this pain and assumed it would go away.

Instead it got worse.  A couple times I considered phoning the doctor, but my kids were overdue for check-ups.  I couldn’t very well make an extra appointment for myself when I couldn’t even get it together to take my kids for their well-child visits.

My hip continued to get worse.  Eventually both hips were affected.  I hadn’t injured them, but they sure felt like I had.  Then my shoulders joined in.  One day we had people over for a barbecue and a friend watching me limp across the deck commented, “When are you going to call your doctor about that?  I looks like it’s getting worse.”

To be continued

6 thoughts on “Fairy Tales

  1. Interesting and definitely atypical onset. I too had an infection (food poisoning) in the middle of my onset, but it was not the first symptom either.

  2. It’s no wonder that it takes a lot of people a while to get diagnosed — between their own interpretation of their symptoms and the many things that can produce the same sort of ailments. I’m so glad the Enbrel is working for you and help giving you your busy life back! (I can’t imagine all the “kid energy” that’s flowing in your house.)

  3. How crazy! After reading so many stories of misdiagnosis nightmares and diagnoses that took years, I count myself super lucky that my symptoms all came on so suddenly (over the course of 12 days).

    That meant my diagnosis was arrived at really quickly, even though I’m seronegative.

  4. RA definitely chooses its own way to present itself. That you somehow kept going — with four children, and then a fifth, in spite of such illness and pain speaks of a very, very strong person, though. I’m relieved for you that you finally got a diagnosis and that you’re finally on a med that helps you feel so much better, even if it’s not perfect.

    Thanks for the link!

  5. It would be interesting to know statistically if the people who post onset stories online are “typical” or “atypical” of the larger population of all RAers. But there certainly are a wide variety of stories that all sound different.

    By the way, I still clearly remember my general practitioner saying that my fatigue was not normal and could be part of an autoimmune disorder.

  6. Thank you. It amazes me how different people’s stories are, yet there’s enough commonality to symptoms that RA is considered one disease. I expect that at some point what we now lump together as RA will be divided into a few different types – at which time I hope they come up with something unique and drop the “arthritis” label altogether.

    Andrew, I know fatigue is one of the symptoms of different physical conditions, but many women are dismissed with a psych dx instead of getting a good evaluation. It’s hard to hear of those who suffer needlessly for years just because the doctor blew them off rather than running appropriate tests and really examining joints. It’s good to hear that your doctor recognized your fatigue as a disease symptom.

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