Despite more than 26 years of living day-to-day with rheumatoid arthritis, I am still learning.
Learning and struggling.
I don’t want anyone to think I’m sicker or in more pain than I actually am. The reality is that, say, if I were to rate my wellness on a scale of one to 10, one being in perfect physical health and 10 being near death’s door, I hover daily between three and five. Same goes for the joint pain.
Not too bad, really, given how horrific the disease and its accompanying pain has been in the past and could be again, should the RA meds I take every day stop working. And most of the time I can blunt any worse pain with painkilling drugs of varying strength: Tylenol, tramadol and vicodin.
And yet … and yet.
I finally saw my rheumatologist yesterday. I’d had to cancel this appointment twice because of ill-timed family emergencies, so now I was two months late. My doc gently pointed out that my labs were outdated by three months, since I’d done them in March for the original April appointment I’d missed. Please, he said, have them done again this week. I promised I would.
With the little scolding out of the way, he perused the lab results and said everything looked good. My sedimentation rate was somewhat higher than “normal,” but not bad given my RA. In fact, for someone with RA the sed rate was good. My CRP was good, too. My liver remains as healthy as can be. And there’s no anemia or any other problem to be concerned with.
Of course I was glad the test result was so glowing. Except… well… it was also confusing and even a little frustrating.
Why? Because I’ve had increasing pain and some swelling in my hands—enough to keep me taking tramadol regularly—and increased incidences of sudden, brief, sharply painful, way-up-there-on-the-pain-scale flares in my knees and feet near the small toes. In the early years of my experience with RA, these small flares nearly always announced a massive, days-long, crippling flare. Today, the awful flares don’t follow those sudden stabs. Instead, they fade away to nothing, rarely lasting for more than 30 minutes.
Well, yay, right? Sure, except that each time it happens, the pain wrenches my mind off whatever I’m doing and ohgodsitsabadflare! takes center stage in my consciousness for awhile. It’s like waiting for a bullet in the back every single time it happens.
The other exception to “yay” is that the daily hand pain is slowly, slowly getting worse, rising in tiny increments. Maybe that’s why no significant disease activity shows up in the labs. I swear, rheumatoid arthritis has to be one of the most maddening autoimmune diseases out there. Its symptoms—gnawing or shocking pain, fatigue, and malaise—can be constant and even debilitating without any worrisome disease activity showing up in blood tests. That leaves only the sufferer’s word to prove that he’s under attack by adverse symptoms.
And we do know what often follows such a claim: the words faker and shirker and malingerer come to mind first, closely followed by hypochondriac and even drug-seeker. Even if the doctor, friend or family member doesn’t say them out loud, their eyes shout them. It’s demoralizing. Embarrassing. Humiliating.
My doc checked my hands methodically. Naturally, yesterday morning was a “good” one. I’d awakened with no pain or swelling in my knuckles or wrists, and my appointment was at 8:20 a.m. My doc said my hands looked “good.” There was no telltale swelling, heat or redness. (Never mind that outside a clinical setting, swelling often doesn’t accompany RA pain.)
Nevertheless, he said he’d renew my painkiller prescriptions. I sighed, defeated again.
He also said that given my fabulous lab results, I could rest assured that my present RA medication cocktail is working to keep the disease under clinical control, even if it doesn’t necessarily relieve all my symptoms. He also reminded me that my particular cocktail—sulfasalazine, leflunomide and plaquenil—is just about the safest one he can prescribe.
How can I complain?
I did remember to ask him about that long-ago diagnosis of palindromic rheumatism I’d had. Could it have been true? That snooty, disdainful doctor—did he only seem that way? Was he right?
Oh, yes, said my doctor. Not only does palindromic arthritis frequently precede a diagnosis of RA, it can be present along with RA. And it’s treated with RA drugs. The diagnosis didn’t surprise him at all.
So, I continue to learn even as I struggle to cope with my old dragon. His teeth remain blunted, thankfully, but he still has a heck-of-a bite, one that reminds me of his latent strength and power.
And as for the family? Mom is doing well. My uncle, after succumbing to a bad case of c.difficile diarrhea and dangerously heightened blood calcium levels, is now living in a local senior care/rehab facility, where he’s regaining his strength and getting better each day. After a long course of strong IV and oral antibiotics, the c.diff has been vanquished. And because we’d already been practicing careful hand hygiene, neither my aunt nor I caught it or, we hope, spread it to anyone else.
It’s been an interesting couple of months.
Here’s hoping the next couple of months will be interesting in a better way. I hope the hand pain starts to recede soon; I too, have been having more hand pain, but like you, I always feel things could be much worse so why should I complain.
It’s good to know I’m not alone in feeling that way, J, though I’m sorry your hands are giving you trouble, too. Aggravating, isn’t it? I hope they’ll ease up soon. And thanks for the kind wishes–optimism is my middle name. 😉
Well, gosh. On one hand I’m happy because when you don’t post, I worry. And then when you do post, I’m sorry to hear that not only has your family had issues, but that old dragon has been gnawing on you. As you say, your labs were a few months old and that’s about the period that you’ve said you’ve noticed increased symptoms. Maybe the new labs will be more revealing. Sending hugs.
Thanks, Carla. It’s been a bit busy around here, that’s for sure. I started to post several times, but upon re-reading bored myself and deleted the dreck before publishing…
You could be right about the blood test timing, but I’m not holding my breath. I guess I’m going through a rough patch right now–I’m having a hard time with the patience and acceptance side of living with RA. Not the first time, of course. I’ll get through it.
Thanks again for your concern and kind wishes. My thoughts are with you as you prepare for yet another surgery. My own problems seem small in comparison. Take care, okay?
Delighted you’ve posted again as I was getting worried too – was on the verge of mailing to say ‘You alright?’ but have also been having family issues and never QUITE got round to it! 🙂 (My mum’s just recovering from a knee replacement and I’m looking after her.) Glad your Mum’s OK and uncle’s on the mend and GET THOSE BLOODS DONE! 🙂 It’s no good neglecting yourself to look after someone else or soon enough you won’t be able to look after them. (Nag over – I hope everything continues to go OK, and indeed gets better, for you!)
It is bedeviling when your body says one thing and numbers on a paper or screen say another. My doctor told me that sometimes the numbers don’t reflect what is truly going on. Really! I call RA the invisible pain. Only you can feel it, no one can tell just by looking at you how sick you are. Maybe we should come up with something we can wear, like the handicap thingy you hang on your car!
So glad your family is doing well. Family illness can so aggravate your own condition, sometimes only by increasing your stress level. We are traveling soon, my father-in-law is failing. Cancer. We want to see him while he is still cognizant. Take care of yourself, Wren. ` Irma
Just remember Wren, inflammatory blood markers don’t necessarily correlate with joint damage and pain! Keep advocating for yourself.
We have mirrored each other quite a bit this year. My labs have been looking good despite more pain and occasional swelling. I have been concerned since it has been a while since your last post. Hope your hand pain eases soon.
How frustrating for you, it always happens, doesn’t it? The day you go see them is the day you look the picture of health – my docs are quite good at going on patient reported symptoms rather than labs etc as not everyone gets raised esr/crp etc. Hope your hands get better – its so difficult when they are bad – and glad your family are on the mend.
and don’t forget that butterknife pain….
I’m a big fan of trusting your gut and your gut is clearly concerned. Also, your labs were grand 3 months ago. Things may have changed. That said, most good rheumatologists will check the labs, but trust physical exam and your reports more. It’s too bad your body wasn’t cooperating with a full-fledged flare. Maybe pop in to see your rheumie on a bad day?
Glad to hear your uncle and mom are better. Hopefully you will be able to take care of yourself now, too.
Sorry things have been so wild for you. Like you, I’m just off from an appointment where my bloodwork (sans CRP–always high) was normal. Nothing was high, nothing was low. Normal. And this news was received after I told my rheumy that I felt better than I had in 5 years.
So congrats on the good appointment and the additional info. I have “severe” RA, so to get the “right cocktail of meds” has been an interesting experience (Enbrel, methotrexate and Prendisone–I can’t be without that one).
All the best,
I guess we’ll see what the new labs have to say about you. My rheum also treats the symptoms, which is a bit of a problem as I don’t have much that is new. But still the symptoms chip away at my hand function, as I get more clumsy and they get weaker.
Right now I (we) am upping the MTX to see if that helps. It’s a cheap way to try to get it to settle down.
Good to hear you and your aunt did not get c. diff. What a problem that is.
I’ve been thinking about you. May the dragon’s teeth stay blunt and may he remain slumbering, liebe Zaunkönigen.
I hope that you will feel much better soon. Unfortunately with arthritis, there is not an easy solution. There are natural arthritis relief solutions. Although it takes some time, they are more effective in the long run.
Situation like this is somehow hard though we know there are many things we can consider in order to deal and somehow overcome it. What we can think is to do the safe things and of course as much as possible with the guidance of experts and doctors.