Onset, Part 2

Some people have dramatic onset of symptoms seemingly overnight.  Not me.  As I started to tell in Fairy Tales, my disease came creeping slowly over a period of years.  First came the fatigue, then a swollen neck/throat.  One hand swelled to three times its normal size, turned bright red with matching heat production, and was incredibly painful.  Then I got pneumonia.  Headaches were next.  My hips began to hurt.  I started to understand what my dad meant when he would say, despite being only in his forties, “It’s hard getting old.”

More and more things began to go wrong.


My skin has never been dry.  Oily, yes; dry, no.  Nonetheless, the skin on my shins and arms developed scales.  These scales did not hurt, nor did they itch.  They just… sat there and looked flakey.  Lotion had no impact, but I could remove the scales by scrubbing with salt & oil.  Sandpaper would probably have worked, too.


I think it was around this time that my knees started to bother me.  Mostly it was when I was going up and down stairs.  I played a lot of soccer when I was younger, as well as a fair amount of gymnastics, so it’s not surprising that my knees would have twinges every now and then.  Notice how I rationalized away another symptom?  I chalked it up to just something I’d have to live with.

What surprised me, though, was my elbows.  You never know how often you lean on your elbows until it’s not possible to do.  Simply resting an arm on my desk would cause me to jerk back and start looking for the push-pin or glass that I’d stuck in my elbow.  There was never anything there – which made no sense, given how I felt.

Can You Believe There’s More?

Around that time, I commented to my husband, “It’s the weirdest thing.  When I get out of bed in the mornings, it feels like my feet are swollen.  After I walk around for a while, it goes away.  It sure is strange!”

“Strange” didn’t last long.  My feet started to hurt when I got up in the mornings.  I began to stay in bed until my husband was in the shower so that he wouldn’t know how bad it had gotten.  Once the water was running in the bathroom, I’d gather my courage and roll out of bed.  Then, as soon as my feet hit the floor, I’d yelp in pain as I rotated to fall face-first back onto the bed.  With the weight off my feet, they didn’t hurt as much.  I’d then gently lower my feet to the floor and ease my weight back onto them.

One morning hubby forgot something and came back into the room just in time to hear, “Aaaaaah!” and witness my collapse onto the bed.  Truly shocked, he gasped, “What’s wrong?”  Somehow my, “Nothing,” wasn’t convincing.  “You don’t usually do this.”  As I gingerly placed my feet back onto the floor, I retorted, “Yes, I do do this.  Every day.  I make a point of waiting until you’re out of the room.  I told you that my feet hurt in the mornings.  It’ll be better in a little while.”

I also started having horrible night sweats.  I’d wake up with the sheets drenched.  Eventually I started sleeping on a giant towel; it would absorb everything and I found it much easier to toss a towel into the laundry than to change all the bedding on a daily basis.

Next my shoulders started to hurt.  I’d re-arranged landscaping bricks in the yard so thought that maybe I’d injured myself.  Truth be told, though, mostly I’d pointed to where I wanted things and had my strapping teenage son do the heavy lifting.  The kid had grown up hearing his father say, “Don’t hurt yourself,” to me so often that he didn’t think I should be moving heavy things and was happy to help.  I know people can get hurt lifting things that are too heavy for them, but it didn’t make sense for my shoulders to hurt due to my son lifting things.

My wrists started giving me fits, too.  I’d spent a fair amount of time on my computer and wondered if I was getting carpal tunnel syndrome on top of everything else.

I felt like I was falling apart.  How could I keep hurting myself without remembering what I’d done?  It never occurred to me, until after my diagnosis, that all those things were tied together in one tidy little problem.

Stay tuned for the conclusion


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