The fun of increasing joint damage and unsettling fatigue - "but you don't look sick"

One of the things about rheumatoid arthritis, particularly with the advances of biologic medications that slow the damage of the incurable, progressive disease, is that it's mostly an invisible illness at the beginning. People cannot see the oppressive fatigue or the joint pain if your meds are working. In the last several months, pain mostly because of my re-herniated L5-S1 disc that's exacerbated by bad neuropathy in my feet/ankles, I have a pronounced limp, so people notice there's something wrong with me, but otherwise I can cover during the week. Monday through Thursday are my "good days when Orencia, the biologic I'm currently on, is most effective.

But to most people, the illusion of being visibly "OK" has been fairly easy to preserve.

During my visit to the rheumatologist yesterday, the usual physical examination (manipulating my joints), revealed that the joint damage in my wrists and hands is well under way. I already wrap my wrists with self-adhering ace bandages for support, and that helps, but the doc noticed my outer finger joints are starting to settle into unnatural positions, and some enlarging. No restricted motion yet, but it's progressing since my 2011 diagnosis. Mornings are really hard, even on good days; almost all my joints hurt and are stiff for 90 minutes or so. Sometimes different joints will feel like they are on fire, sometimes not. I try to ignore what I can.

But at today's visit I recounted the latest problems I'm having preserving that illusion of being OK.

1) That untimely sleepy feeling. In my high-stress job as an IT manager (talk about a job incompatible with a systemic immune system disorder highly affected by stress!), I'm currently at 75% and have been functioning well most of the time, but it's pretty clear that my ability to work at the level that I'm used to is diminishing pretty rapidly. As I said, meds keep me well-functioning about four days a week, but those four days have been taxing me beyond belief over the last 3-4 months. Around 2-3PM I have an unreal surge of fatigue that I used to feel only during the weekends after dosing. It doesn't seem to matter what I'm doing or how much sleep I've gotten -- it's almost a narcoleptic event. I found myself nodding out at my desk, hand on my mouse, and I could be in the middle of typing or pausing to think about my next thought. I'm like WTF? It's a mini-moment, but my brain feels like it is really shutting down, like I feel the need to lie down. I'm petrified to do so, because on weekends, it means passing out for 2 hours or more. And that's not going to happen while I need to be working. I manage to power through it somehow, but I'm left feeling spent.

I told the doctor that no amount of caffeine or walking around seems to help (I can't tolerate a lot of caffeine anyway); I just feel the need to lie down or else I will collapse. She's checking my B12 levels. I may need a shot to help boost my energy levels, if they are low.

2) Sundown/sunset effect. And this follows on the heels of above. I feel the key in my back winding down when I leave work. While I've come to accept that my energy depletes more quickly because of RA, what is the most difficult to accept is my functional hours during the week are so short. By the time I've given all of myself to my job, what's left is precious little. I have to go to bed at 7PM. Not because I feel tired, it's because I cannot stay awake. I am literally shutting down, usually as I sit on the sofa, my head falls to my chest and I'm nodding out... gone. Zeroed out. Sometimes Kate has to wake me and tell me to get up and take my night meds and to head to bed. I'm sunsetting.

How pathetic is that?

Usually I'm back up around 10-11 PM for an hour or two, and then again at 3:30 AM to take my "AM" meds that I need to take early enough to get a bit more sleep, but will enable me to function at work without being too dizzy or loopy or tired (until that 2PM wall, anyway).

That is the rinse-and-repeat cycle for Monday through Thursday. Fridays are the real wind-down day. By 2PM on that day, my meds are wearing off completely and everything begins hurting in addition to the wall of fatigue. That's the nod to re-up my injectible biologic and take my methotrexate (oral med) around 4PM. Both of these make me sick (as in friends with the porcelain god and ungodly fatigue and fever/chills) for the rest of that day and Sat/Sun. So my weekends are sh*t too. All so I can hold down the job.

My life revolves around providing every ounce of energy for my job because it has to. So everything else about life takes a back seat. Makes for a sh*tty quality of life.

My doctor has heard all of this before; the majority of her RA patients are no longer working after going through this dance of decline. But the good news is that more and more RA patients in general are able to extend their work lives because of these biologics. What the commercials for Enbrel or Orencia don't convey, for obvious reasons, is just how much down time you still have to have to recharge after activity sucks the life out of you, or how the weather affects you, or what those miracle med side effects do to you. But they are accurate in that they can slow the progression of RA in most, and sometimes result in remission for others. They won't prevent flare ups or take pain away 100% -- they increase your quality of life.

Of course that is all relative if holding down a job is considered the "quality" part of your life when you'd like to reclaim the rest of it. But this is part of living with RA. Compromises, complications, reality checks, realizations of who you were, and who you are in the moment.

My doc said that we could try a couple of other biologics; she mentioned two (Simponi, Xeljanz), and I had to inform her that my prescription insurance, ExpressScripts, will not cover them. (For more on that issue, see my post "When your prescription insurance company forces you on meds that don't work") So even when there are options to try to help improve matters, you're kind of limited by your health/prescription insurance. You have to be "happy" with what you're able to take and what those meds deliver, and be thankful you have decent coverage at all. This is why, even with the severe limitations of the Affordable Care Act, people who would otherwise be completely left out of the ability to work with an illness like RA, may have a chance to remain viable in the workplace.