This flare is really getting to me.

Standard

I finally got into the doctor on Thursday.  

“Dr. D, I’m having inflammation and pain in new joints.”

“Like which ones?”

“Um, how does that kids song go?  Oh right, HEAD, SHOULDERS, KNEES AND TOES, KNEES AND  TOES. Ok, maybe not head but also wrists, hips and fingers. And also, I am unable to comfortably do the movements to the aforementioned children’s song right now.”

“Hmmm, and on our last visit I thought you were really starting to show improvement.”

“Sure.”

He examined me and agreed that things have really regressed.  We are pricing out two options with my insurance company- either Remicade or Actemra- and hope to have a final decision made later in the week.

“Is there anything else I can take in the interim?  I’m really having a hard time functioning?”

“Are you not taking the Tramadol I called in for you last week?”

“No, I do not take pain medicine.”  

Yes, you read that correctly. I believe that pain is a good warning sign.  I don’t want to NOT feel pain and then do something that would end up hurting me more.  My pain is caused by inflammation- I want something to treat the inflammation. Does that make sense?  

You should probably also know that I worked in a pain control clinic for two summers in college that coincided with the debut of Oxycontin.   Best job ever for two reasons: HOT RESIDENTS who invited me to attend ‘liver rounds’ with them on Thursday evenings and a handful of our patients were so nuts that I never had a boring day. So even though I may joke about pain meds and laugh about the potential of medicinal marijuana for RA patients, I’m actually pretty adamantly against it on a personal level.   I do realize that I am most likely in a different league of patient than what we saw there: our worst drug seeker was the alcoholic who passed out drunk on the train tracks and lost his legs.  True story- only in the south….

“Well, I don’t want to give you anymore Prednisone- I know you don’t like taking it and I know the problems you’ve had in the past weaning off of it.”

“I’m not asking for Prednisone.  It’s just that I’m taking x Aleve a day to get any relief from the inflammation and I don’t think it’s good for me.”  (imagine eyes bulging out of his head and no, I’m not willing to admit the number but let’s just say there’s a limit in the PDR about how many you can safely take in a day and my intake matched just that.)

So he put me on Mobic.  Not really a fun of it but my stomach likes it better.

I stopped at the vending area to get a Coke before my bloodwork because I didn’t have any breakfast and really thought that passing out during/after bloodwork would be pretty sucktastic.  While I was there, I got to peek into the infusion center.  I was actually pretty impressed- it looked like a “real” infusion center, not like a doctor’s office infusion center.  

Bloodwork was a breeze as usual and I was out the door fifteen minutes later.

I’m feeling a little better tonight after 2 days of good rest, good food, and some serious quality time in the hot tub and steam room at the gym.

And now it’s raining so I think it’s time for me to get in bed and enjoy the sound!

9 responses »

  1. I am sorry you are not feeling any better. I hope they can find something that gives you some relief.
    I have to agree w/ you on the pain meds.
    I Personally believe ( my personal belief as well ) Oxy is one of the most evil drugs given . The potential for addiction is so high w/ that drug its unreal ! Feel better soon i will be thinking of you .

    • Thanks- me too. How are YOU doing? Yep, the sad part is that while most of these meds are good things, there is so much potential for misuse of them. I don’t think I’m at risk for that but after seeing it, I just would prefer not to take them. I guess I’m weird. :)

      • I am doing better. I had my food biopsy on Friday I go tomorrow for the follow up and hopefully for the results. My Flare up or what ever you want to call it seems to have subsided for now. The gastro was supose to call me a day or so ago but has not so i guess i’ll call them tomorrow.
        I totally agree w/ you on the narcs. The potential for addiction is just too great . They wanted to send me to a pain managment clincic for my migraines years ago and I said no .
        They just wanted to put me on narcs.
        I hope you are feeling well soon .

  2. I agree with you about narcotics too. I tried Tramadol though, doc said it wasn’t addicting. I didn’t get addicted, but I do believe it actually made some of my pain worse when I tried to back off of it. That’s when I started adding in the Tylenol Arthritis. I do take NSAIDs rx, but the “24 hr” kind. So I alternate the Tylenol with that. The Tylenol does help a good bit, I feel it’s better than the Tramadol was. I still have issues with the Prednisone and trying to get off of it. I SOOOOoooooo want to increase it back up because the “feeling like crap”/pain problems are not going away, and I’m still on 5 mgs, have been for at least two months – so I don’t want to cut it down more right now and as I said I so want to increase it back up just to try to get through my days even a little bit better! I hope your pain improves. You might be a little too worried about hurting your joints. A physical therapist might be able to help in that area. Pain as a signal is one thing. Having to live with it day in and day out when you don’t have to live at that level of pain and be inhibited by it (short of taking narcotics) should not be something we have to just accept.

    • I agree completely about physical therapy- once things settle down, I do want to see one. I need to ask about Tylenol Arthritis too- I’ve heard from someone else that you can piggy back them but I’m on so much right now that I’m really hesitant to change anything. Good luck with Prednisone- it took me several months of back and forth to get off of it last time. But you’ll get there!

  3. Balancing out the need for pain relief and the method by which that relief comes is so tough, Amanda. I absolutely understand and respect your feelings about narcotic (and synthetic narcotic) pain relievers — I take Tramadol, along with diclofenac and a couple of DMARDs. But sometimes all those meds just don’t work well enough. That’s when I’ll take Vicodin. I don’t take it often (thank goodness I don’t NEED to) but when I do take it, my last worry is that it might mask my pain and make it easier for me to injure myself. For one thing, it never works quite well enough to completely erase the pain. I’m still aware of it, even if I’m not suffering as much. For another, if I do take V, I wait until I’m home, know I won’t be going out again for at least 12 hours, and plan to simply take it easy and rest while the drug allows me to do that.

    Dealing with RA is sometimes so difficult. My heart goes out to you as you struggle with this latest bad flare. I hope the Mobic will make a marked difference for you as you wait for the biologic med to be approved — and then as you wait to find out if it’s going to work.

    In the meantime, here’s wishing you the gentlest week possible. I hope you’ll be able to get adequate rest, plenty of nutritious meals, and lots of laughter. Be kind to yourself and don’t forget to look for the gifts. They’re always there, no matter how good or bad we feel.

    Hugs for you,
    Wren

    • Thanks Wren! I probably do need to at least give it a shot. Does Tramadol make you loopy? That’s another concern of mine- the few times I’ve taken it (post surgery for wisdom teeth and after breaking a bone pre RA) I was completely non-functional. How are you doing? How’s the hand?

  4. I’m getting my first remicade infusion today. I’m already not impressed with my doctor’s infusion person. She’s a dingbat on the phone and I think made some errors that took forever to fix with my insurance. I’m already wondering if my doc can send me to the hospital for infusions. We’ll see how today goes.

    I also take massive amounts of naproxen. My stomach is starting to complain. I take the occasional Tramadol but I don’t follow it up with lots of activity – I just don’t want to hurt.

    • Oh- let me know how it goes! I was getting ready to google “what to expect” posts. Thinking of you and hoping that the nurse was better than she seemed. :)

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