Friday, August 7, 2015

Inflammatory Polyarthalgia

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I've been keeping the latest change around here under my hat hoping there would be definite answers on the horizon.  As medical things typically go for me though, that doesn't seem to be happening anytime soon.

Back in March, I experienced about a week and a half of joint pain in both my hands.  It started out in a few fingers and "spread" until every joint in both hands was affected.  I knew this was not a good sign and that it could point to either rheumatoid arthritis or lupus, plus I was living at Ronald McDonald House with Secora at the time, so I chose to chalk it up to stress and hope it would just go away.  That worked out really well for me, it disappeared and I breathed a sigh of relief.

In mid-April, it came right back.  So I did the only reasonable thing to do when faced with such a potentially serious symptom...took advil and ignored it, hoping it'd disappear again.  I was scheduled for a regular eye exam a few days later.  I have really terrible vision, so I see my eye doctor regularly and he knows me well and has pictures from my previous exams saved in my electronic chart.  I settled myself in the chair, he lined up his equipment and the first thing he said when he looked in my eyes was, "you need to go get tested for rheumatoid arthritis".  Well, crap.  He took pictures of the changes he was seeing and showed me old pictures to point out the difference.  So I got off the denial train and called my doctor on the way home.

My primary care doc listened to my symptoms and gave me a pity look, which is never good.  She ran some basic RA and lupus tests along with testing for gliadin (celiac) antibodies, though I'd already been thoroughly checked for celiac during my upper GI scope a few years ago.  She told me I really ought to see a rheumatologist regardless of results though because RA can be "seronegative".  I asked who she'd recommend within about a 2 hour drive and she very wholeheartedly recommended a newer doctor here in town.

Some waiting, paperwork and "can you put me on the 'if there's a cancellation' list?" later, I finally got in with the rheumatologist.  She ran more blood work looking for more specific markers and ruling out more possibilities, and scheduled me for a follow-up to discuss blood work and do a joint ultrasound.

And (of course, because it's me) the blood work all came back normal.  She explained that while that ruled out some stuff, it didn't rule out RA and she set up to ultrasound my hands.  That showed inflammation in the joints, but no joint damage.  And that's when I figured out we were just gonna be in limbo for a while.  She won't say it's RA since there's no damage as of yet, but she says it's possible it's very early RA or will "turn into" RA down the road.  The official diagnosis for now is inflammatory polyarthalgia (inflammatory joint pain in multiple joints, which really isn't much different from RA, that just means they don't know if it's forever yet).

She started me on daily plaquenil, an anti-malarial that is a DMARD (disease modifying anti-rheumatic drug), so I've been taking that for about 2 months now.  So the good news is I am WELL protected from malaria for the time being.  The bad news is I'm a little bit nauseous every night, but it's doable and I haven't had any other side effects.  Plaquenil takes a really long time to work, so I can't say too terribly much about it yet.  I'm most definitely less fatigued, which is interesting because I didn't know I had fatigue before.  My rheumy asked me if I was fatigued and all I could tell her was, "I have 3 young kids, of course I am".  Several weeks in on the plaquenil though, and I realized I could wake up in the morning without dragging myself out of bed and make it through the afternoon without longing for a nap.

The joint pain is the joint pain.  Some part of my hands has hurt all day every day for the last 4 months.  On the worst days it was every joint from wrists to fingertips and 6-8 advil over the day would dull it to a nagging ache.  On the best days, I wouldn't take any advil and I would have what felt like soreness with occasional sharp jabs.  One wrist that has given me trouble for years off and on hurts more often than not these days.  During the most recent bad flare-up I lost a lot of range of motion in it for a few days, but was pleasantly surprised to find out I could move it correctly again when symptoms subsided.  One shoulder has been nagging me a lot too...then I crashed my bike and fell on it, that didn't help.  It moves correctly, just not pain free.  My feet have, thankfully, been mostly okay.  Only very intermittent pain in a few joints. In the last 2 days, I've had entire hours where nothing hurts for the first time since this started, so I'm hoping the plaquenil is starting to do its job.

I don't yet know what the future holds.  For the time being, new blood work on a very regular basis and possible meds adjustments.  I'm hoping to avoid methotrexate for the time being.

My rheumy and primary care doc both say I can keep doing triathlons.  This is possible and there are several women with RA in my triathlon group, but it has required some adjustment.  A really hard workout will cause a flare in symptoms.  The next day or two I will have more pain and more fatigue.  With my last race, I needed naps and dealt with a lot more pain for several days after the race.  So basically, I need to take it slow and not push too hard.  My ideas of crawling my way up the age group rankings has to be shelved for now, and possibly forever.  My focus is just on keeping my body working and appreciating what I can do, time goals can't be put ahead of mobility preservation.  I've also changed my running shoes.  I've kept the zero drop that has been so kind to my knees, hips and back for so many years, but added on cushioning to protect my toe joints, so I've moved from five fingers to Altras.  Swimming held me back from triathlon for so long and was incredibly difficult and draining when I started.  Now, it's my rest day.  Everything moves better in the water and the hour or so after I get out of the pool is often the only pain free spot in my day.

Other adjustments have been pretty minor.  Some days Sierra braids the girls' hair for me if my fingers hurt too much.  Some days I prep ingredients for dinner throughout the day because I know it'll hurt too much to do it all at once.  I carry things differently a lot of times to avoid pain in small joints. I wear more sunscreen since the plaquenil makes you sun sensitive.  I snap, crackle, pop a lot more when I move.  I buy more advil.

I am extremely fortunate on many fronts.  I've found I appreciate what I CAN do much more, it's hard to justify skipping a workout when you know it may not be possible next week.  I'm fortunate to have an eye doctor that is very good at what he does and recognized the eye changes.  I'm fortunate to have a family practice doctor that is aware RA can be seronegative.  I'm fortunate to have a rheumatologist that meets every criteria on any "what you want from your rheumatologist" list.  She did all the right testing to rule out all the common mimics.  She does joint ultrasound, which is a bit of a gold standard as long as the machine is good and the examiner knows what they're looking at.  She asked a LOT of questions and took the time to listen to the answers.  She examined all of my joints, including the DIP joints (last ones on your fingers), which some docs ignore.  She took my report of what I was experiencing seriously instead of blowing me off as soon as the blood work came back.   This whole series of events is important because the current research/thinking is that early and aggressive treatment of RA gives you the best chance of remission and even though we aren't officially calling it RA at this point, we are hopefully heading off more severe pain/limited mobility by treating now.

Yes, I know RA is a fairly ominous diagnosis.  It shortens your lifespan, it slowly disables you, it attacks more than just your joints (notably the cardiovascular system).  Hopefully we are somewhat heading it off at the pass and if not, what will be, will be.  It's somewhat clarifying to confront the idea that maybe this period of life where I can move freely is more limited than I thought.  Just the possibility makes me appreciate things I took for granted 6 months ago and it makes it a little easier to "grab life by the horns" and not assume what I put off today can just be taken on tomorrow.

So that, as they say, is that.  If I seem to make some choices that seem a little out of left field, this might be why.  If I run 5 miles one day and can't unload my own groceries on another, this is why.  If I'm napping in the middle of the day, it's probably this, but I've also never learned that staying up until 2am is a bad idea, so it could just be regular ol' poor planning too.

1 comment:

One Acre Homestead said...

You continue to be an inspiration to me! As with all the other challenges you have encountered, you are meeting this one head on and looking for the positive. Thanks for sharing your life. I am so very thankful that I attended that LLL meeting so many years ago and met you!

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