Sleeping dragon

I stand at the kitchen counter, looking at the array of pills laid out next to the sink. It’s dawn. My hips, aching with bursitis, have forced me out of bed once again and my RA is making my body feel as stiff as thick cardboard. Moving takes effort. It hurts.

I stand there, blinking at the pills. What do I take? My brain must be stiff too. Oh. Right. Take the ones from the daily pills thingy first. The morning RA drugs: sulfasalazine and plaquenil. They keep the rheuma-dragon drowsy and slow. There’s Ranitidine, toPill_Box quell the nausea the plaquenil invariably causes. Then the rheuma supplements: calcium and Vitamin D for strong bones (cross your fingers) and a multi-vitamin. Finally, a teensy loratadine tablet for the year-round grass allergy that living in the valley with Mom has so rudely reawakened in me. (At my home up in the mountains I only took the allergy stuff now and then. Here with Mom, I either take it every day or live with constantly clogged sinuses and itchy, red, watery eyes. Bleh.)

I run a glass of cold water, snap open today’s pill compartment and shake the fistful of pills into my palm. I swallow them all at once, then force myself to gulp down the rest of the water. There. Now for the pain meds.

My rheumatologist told me again last month that the RA drugs are keeping my dragon quiet and sluggish. I have to believe him–he has Scientific Blood Test sleeping dragonResults to back up his assessment. But I ache anyway. My rheuma-dragon may be much weaker than he was, but he’s still pushing hard against the bars of his medicated cage. Each push represents, to me, another throb of pain in my hands or my hips or both.

It may be only a shadow of what it once was, but it’s still pain. It dogs my existence. I gaze at the pill bottles. What to take?

There’s tramadol. It’s my favorite, a benign but fairly effective painkiller with no side-effects that I’ve noticed. Next to it is hydrocodone (Vicodin). It used to be my Number One pain med, an opiate I could count on to push the pain way back and send my mind floating sweetly away. But I didn’t dare take it if I had to drive or work or be responsible for anything, which naturally limited its usefulness.

Today, Vicodin is in definite second place. I’ve taken it for so many years, off and on, that my brain no longer reacts much to it. Its rarely any more effective than tramadol, and even the maximum dose doesn’t send me floating gently away from my misery anymore. My pain and I remain rooted firmly in reality.

This is the trap that narcotic painkillers set: to keep them working, over time you have to take higher and higher doses. Eventually, you’ll take a dose that will kill you. It’s the main reason doctors are so cautious about prescribing it, along with the fact that it easily makes the patient dependent on it.

I wonder, uneasily, what I’ll do if my dragon grows immune to the rheuma drugs and he wakes up? What will I do if my pain becomes huge again and the tramadol and Vicodin don’t work anymore? The thought itself makes me fearful. Memories of disabling pain flood my mind.

I push them away impatiently. Come on, Wren. Back to the here and now. We’ll deal with that when it happens. If it happens. Right now, though, your hips hurt. So, take some pain meds. Which should you take?

I refocus on the array of pill bottles in front of me.

Tramadol, Vicodin, and, finally, acetaminophen. You know that one: it’s Tylenol. I keep two strengths handy: extra strong (500 mgs per tablet) and arthritis-formula-strong (650 mgs per tablet). Alone, neither strength has any appreciable effect on even the sleeping dragon; I might as well pop a lemon drop and wish on a star. But they do boost the painkilling effect of the tramadol a little.

So, which is it to be this morning? Tramadol or Vicodin? Hmmmm. My mind does one of those odd little sideways slides: how about tramadol and Vicodin, it wheedles. And a couple of super-strong Tylenols, too? You know–the old one-two punch. That oughta shut the old dragon up for a while!

I actually consider it for a moment. But then I pull up short and tell myself not to be an eejit. Those two painkillers, taken together, could cause far more trouble than some bursitis pain. Both of them do their main work in the synapses of the brain, blocking different pain receptors, and each in their own way. Taken together, though, they could clash violently. They could cause my personal train to run right off the rails.

Visions of seizures and comas flood my imagination. Gods, no, I think.

Plus, I remind myself, taking that much Tylenol all at once (Vicodin combines 500 mgs per tablet in addition to the opiate) could do some serious damage to my liver. That poor, workhorse organ is already under stress, dealing with my RA meds as it does every day.

You don’t want to kill your liver, I mutter to myself, shuddering. Kill your liver and you die.

I decide to take the safest combination: the maximum dose of tramadol (two tablets) plus two extra-strength Tylenol tablets (1000 mgs total; 4,000 mgs per day, total). At this dose, I can take both pain meds three more times over the next 24 hours if I need to.

I usually do.

I take the painkillers with another full glass of water. And then I wait for the pain and stiffness to fade some. In an hour or so, I’ll be walking normally instead of stumping around like a miniature Frankenstein’s monster. The bursitis pain in my hips will still be there, but it will feel less intrusive, and the stiffness will mostly be gone. I’ll almost forget both–until I sit down for more than a few minutes and then need to get up. When I stand and move, the pain and stiffness will remind me yet again that I have an incurable autoimmune disease.

Both pain drugs will have mostly worn off in roughly three hours. I’ll start glancing at the clock, wishing I could take another dose. But I’ll have to wait six hours before I can, and by that time, the hip pain will once again be jostling for a place at the front of my mind.

Damn, I hate that.

All of what I’ve written about here took, maybe, a minute and a half in real time. Living with RA and its co-morbidities, such as hip bursitis, is a real, constant challenge. Even when the RA is “under control” there are symptoms of the disease that break through–and they’re just about impossible to ignore.

But I don’t want you to think I sit around every day whining and sniveling over my lot in life. I really don’t. Most of my days are just like anyone’s. I don’t work in an office anymore, but I do provide daily care for my elderly relatives. I plan and prepare meals, I shop for groceries, stop at the drugstore, run other errands as they come up. I take my mom and my uncle to appointments with their doctors and specialists and for blood and other tests. I spend, every now and then, hours and hours in the hospital emergency room with them, pacing or sitting on a hard metal chair. I take care of their pets, make their beds and carefully administer their medications.
holding hands
And I try to make them happy. To make them laugh, often. I admit that it’s all a lot easier to handle with my rheuma-dragon dozing. I don’t know if I could do it if he were wide awake, snapping and breathing fire in my joints. So I get on with life, telling myself it’s only the dragon’s dreams that ache in my hipbones and twinge in my hands.

I’m grateful.

14 responses to “Sleeping dragon

  1. Wren, I’m so sorry to hear that you’re still feeling poorly. Wouldn’t it be nice to send the dragon to obedience school? Are you still not on a biologic? I’d share mine with you, if I could.

    • Socks! It’s good to hear from you! My doc feels my RA is now kept under control by my trio of DMARDs, sulfasalazine, leflunamide, and plaquenil. My blood tests have shown for about a year now that the RA is quiet, if not in remission. He simply renews my pain meds during each appointment (and thank goodness!) The bursitis has come and gone and come back again, unfortunately; I didn’t even mention it to him in January. Didn’t seem worth it. The last time I got him to focus on my continued pain, he told me I had fibromyalgia, which irritated the you-know-what out of me. Sigh. And yet I’m not sure I’M ready for a biologic. I hurt, but it could be a whole lot worse.

      • I drug my feet on starting a biologic. After the fact, kicked myself for not starting as soon as my rheumy recommended it. Biologics take effect very quickly. However, there’s some research (can’t recall where I read it) that triple DMARD therapy can be as effective as a biologic in some people. Certainly, it’s much less expensive. Good luck!

  2. When I hear of your pain, I too think of a biologic. They are not without risk, true, but it changed my life. It could be worth talking to your doctor. I hope you are well, so many depend on you!

    • Thanks, Leslie! I think I will mention biologics to my rheumy next time I see him. He’s discouraged their use in my case when I inquired a few years back, wanting to try a third DMARD instead before bringing in the big guns. He’s not against biologics and does prescribe them, but mentioned the increased risk of infection as a reason to be prudent. I’m glad to know that they’ve made such a big difference in your life. That’s just incredible. We’re lucky that such meds have been developed for this aggravating disease.

  3. I am sorry that you dealing with all this. I am not a fan of the medications either but your right that the RA drugs are keeping the RA quiet – not fun, but we got to do what we have to. I don’t take prescription pain meds but I take an anti-inflammatory, Mobic and a muscle relaxer when the herniated discs in my back and neck act up. Like you, I worry myself crazy about the side effects and how my liver will be affected. I think that is why I am afraid to even consider anything stronger and I limit the over the counter meds I take. RA takes a lot of you and makes life harder. It is not far but, you try – I think that that is all any of us can do. Hang in there, friend. Here is hoping tomorrow is better.

    • I’ve not been prescribed a muscle relaxer to deal with RA pain, but I can understand how it might work. Back in the olden days I once had my neck and shoulder muscles go into spasm and cause a devastating headache; the ER doc (I was afraid I had a brain tumor or something equally as frightening, the pain was so overwhelming) prescribed Flexeril and told me to apply frequent moist heat to the area. The drug did help, as I recall. Hope you’re feeling well, Lana. Thanks for the kind wishes.

  4. Wren, I hope the “dragon” is not awakening for a full bore attack. I’ve read somewhere that Tylenol increases the effectiveness of opiates. I know that applies to Vicodin which is coupled with Tylenol. I’ve always wondered if it does the same for Tramadol which is similar to opiates but there is debate about how to classify it. Sometimes I’ll couple Tramadol with Tylenol if I’m having a bad pain bout. Take care of yourself. Andrew

    • My understanding is that there IS a form of tramadol that comes with Tylenol already combined. My doc prescribed me the form that doesn’t include it, and told me I could take Tylenol with it as needed. With or without, I really do prefer it to vicodin. By the way, I checked out the link you referred to in your last post. I’ve enjoyed it and already learned a lot. I hope my doc at the VA will start using ultrasound imaging sometime soon as a diagnostic tool. Be well, Andrew!

  5. Hi Wren, Sorry you’re still suffering – I do absolutely relate to the whole ‘Erm, which one do I take’ repeated about five times in 1.5 minutes, followed by brain-wanderings! Mind you, paracetamol (Tylenol I think) is about all I’m allowed to take for pain relief, but my brain is just so foggy in the mornings sometimes that I still go through that!

    I Warm Sock’s idea of sending the dragon to obedience school is great – sadly I don’t think anyone’s actually opened a rheumadragon obedience school yet. When they do, I’ll bet you’ll be enrolling yours right off!

  6. Gentle (((HUGS))). Life can be so hard at times without ra and all of its cousins. Maybe one of these days (I keep hoping) we can say we are truly cured. Now wouldn’t that be something :-) I also do tramadol. But for me it is all I can do as I have allergies to the rest of the pain med families.

  7. Just catching up. I’m sorry that you’re in pain, but it’s a blessing that we have choices in dealing with our situations — including various pain medications and treatment options. Hope you feel better soon.

  8. Wow, Wren, I felt like hitting the “like ” button, but it felt wierd to say I like that you feel this way! But then, I can sympathize with the hip bursitis and the daily array of pills. There’s so many, sometimes I forget which one is next. I hope today finds you with better pain relief. Take care, – Irma

  9. That sounds like a great deal of pain Wren. A biologic might well help you more. I don’t know how much the combos do for joint damage.

    Can the doctor think of anything more effective for bursitis? I have heard of cortisone shots for it. I have nothing at all against pain pills but as you say, if you build up a tolerance you have fewer options for the future.