Just a Thought…

I’ve been considering sharing this story with all of you for a while.  I’ve finally decided that, even though it’s a little more on the personal side, this might help some of you.  And that’s the most important thing.  So here goes:

If you flip back a couple posts in my blog you’ll see this picture of my swollen and very painful left hand.  This is what both of my hands and feet looked like last March-April, but my whole body was in pain.  It was by far the worst and longest flare up I had ever had, and it had been building since as far back as November ’09.

My RA is not the constant flare kind (thank goodness…), and I had been doing fairly well before.  I even went into a little remission for a while and quit taking the Methotrexate (chemotherapy).  I think quitting this med is what brought the flare up on, so I know now that I should never miss a dose of mtx, no matter how much I just wanna chunk it out the window.

It was hard to do anything.  Hard to sit up in bed, walk, eat, even sleep.  Here’s where I had a thought: it’s important for us to move around just enough to keep from getting too stiff, which can cause more pain.  When you’re in that much pain, however, moving around at all is almost impossible.  It is an inescapable cycle.

Because I was diagnosed at 15, the only rheumatologist I’ve ever seen specializes in JRA.  When my mom called her office asking if there was anything else they could give me, they offered me trammadol, a slightly more effective NSAID than naproxen.  I saw no difference.  My mom called again, but they refused to give me anything stronger.

I was unable to attend school, scared to death I would fail the entire semester and lose my scholarship.  I remember crying to my mom, so desperate for help from my doctor, but they couldn’t give me anything else for me to just try.

During this time I went to see my general practitioner.  It’s been so long ago that I don’t even remember why I went to see them.  I try to keep them as updated on my RA as possible, so I explained what had been going on and showed them my swollen and extremely tender joints.  My mom and I asked about prednisone, curious as to why my rheumatologist wouldn’t let me try it so maybe I could go back to school.  After discussing different options, they agreed to give me a limited supply of darvocet, a much stronger pain medication, but told me to only take it when I absolutely needed it, otherwise I would build up an immunity to it.

I realize my rheumatologist did not want to give me darvocet because it is so strong and it should not replace the daily NSAID.  My mom called them before I took the darvocet, and they were completely against.  I believe they told my mother “We don’t give our kids that.”

I never intended on staying on the darvocet daily, you simply can’t.  But taking the darvocet made the pain so much more bearable.  I was able to wash my hair again, walk around the house, and hold a fork for longer than sixty seconds.  I’ll be eternally grateful to my doctor for helping me keep my scholarship.

I only needed that darvocet for three days before the flare was gone.  I went from absolute hell to feeling better than I had in months in DAYS.  Can this really be coincidence?  Or could controlling the pain long enough for me to move around and relieve the stiffness do the trick?

I know my rheumatologist would never have given me a stronger pain killer, so I can’t help but wonder what would have happened if my general practitioner didn’t give it to me.  How long would I have flared?  Would it have progressed further?  Would I still be in a flare, like so many of you are?

I don’t know if there is something to my discovery or not, but I feel that it is worth looking into if you are in a similar position that I was in a few months ago.  Ask your rheumatologist or your general practitioner for a couple weeks worth of darvocet or something like it.  Call me crazy, but it may be worth trying.  Even if it doesn’t work, at least then you’ll know.

I’m not a doctor, but I know how desperate some of you are to feel even the tiniest bit better.  I truly hope this can work for someone.

Stay healthy, everyone.

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11 Comments (+add yours?)

  1. JT
    Jul 02, 2010 @ 20:04:29

    Another good article. I still love how you’ve taken this thing that you’ve had since you were 15 and constantly find new ways to inspire others or give them some positive advice. That’s not an easy thing to do in a world where people constantly complain about their shortcomings or have nothing but negative things to say. You make being positive in the face of something negative look easy.

    Reply

    • Cari Elliott
      Jul 06, 2010 @ 22:09:11

      I promise, its not easy, but some people do make it harder than it has to be. I firmly believe that half of being happy is just deciding you’re going to be , despite the hand you’ve been dealt in life. Thank you for your continued encouragement and support, J.T, I really do appreciate it. 🙂

      Reply

  2. Cathy Prentice
    Jul 02, 2010 @ 21:19:18

    After fighting this monster for 27 years, every so often I have to rely on low doses of hydrocodone/acetominophen to get a flare under control as well. It is no coincidence that once you could move around, the flare passed. I have also found that if I up my fluid intake I seem to get over it sooner. I don’t remember where or how long ago I read it, but when we flare, our bodies create chemicals that send pain signals to the brain (another one of the reasons we should not donate blood, the recipient would also get these chemical triggers). By upping my fluid intake, it seems to flush them out of my system faster, thus resolving the flare up sooner. No medical proof, just seems to be what helps me.

    I do agree with you that taking the narcotics can leave you tolerant of them. But, used only when totally necessary to function can help you break through the ‘wall’ of pain. I also agree with you that trammodol is virtually useless if you already take oral NSAIDs, they actually tried it on me coming out of surgery!! of all times.

    I am on a daily dose of 5mg prednisone, on it, I was able to go from 3 OTC anaprox, 3 times a day, down to 2, once a day most days. It is worth it for me, the side effects of it are way less scary than those of methotrexate.

    I was 27 when a rheumatologist wanted to put me on methotrexate, I refused. At the time my daughter was only 2 and I knew that if it was in my system & I got pregnant again, I would have to terminate the pregnancy and I wouldn’t take that chance. Anaprox, prednisone & plaquenil have kept mine under control for the last 20 years with no long term side effects. The doctor would not listen to me (he took over my original dr’s practice when he retired) so, I walked out and found a new one that would listen and discuss all my options, not just what HE thinks I should do.

    You have a say in your treatment….EXERCISE it. It may not work right all the time, but, it is YOUR body after all.

    Reply

    • Cari Elliott
      Jul 06, 2010 @ 22:13:23

      They put you on a NSAID after surgery?? Isn’t that when most people get morphine or something? That’s the strangest thing I’ve ever heard of. It’s almost as if doctors assume that everyone who takes a pain medication regularly is an addict and they have to purposely keep us away from stronger medications, even when needed, to protect us. Something is seriously wrong with this system.

      That’s the second time that I’ve heard an increased intake of fluids could help get over a flare faster. That is definietly something I need to remember to try.

      Thank you for your suggestions, I’m going to keep them all in mind.

      Reply

  3. Stacey
    Jul 02, 2010 @ 23:23:00

    I really love your blog, it is helpful to read what other people have been going through. I am lucky, my Dr really listens (maybe too well) I had a lot of pain over the winter when I was first put on prednisone. When I went in for my one month checkup, I told my dr that I wasnt sure if it was the prednisone or the weather that made me feel better, so he took me off the prednisone and put me on hydroxychloroquine (took me forever to pronounce that) and boy oh boy did the pain come back with a vengence. I am back on a low dose of prednisone with this other med.

    Now dont laugh, but my husband talked me into getting a magnetic bracelet, now I dont know if it is really helping or if it is pyschological, but who cares, it makes me feel better. Not sure if anyone else has tried this, but hey, if it makes me feel better, great, and is is cute so that is also a plus 🙂

    Reply

    • Cathy Prentice
      Jul 03, 2010 @ 00:00:06

      @ Stacey, Plaquenil (hydroxychloroquin) is a DMARD (disease modifying anti-rheumetic drug), it will help slow down the degeneration of your joints. It can help ease pain by reducing the swelling and tenderness in them, which in turn, can ease the pain. Granted, without it, I would no longer be able to tailor professionally, do data entry, or throw darts… it has saved my hands.

      Another thing I have found to be a wonderful thing for my hands is my Homemedics Para-Spa. The warm wax dip really penetrates into the joints and the emollients in the wax help with the skin dryness from my SLE. I discovered this wonderful device after I had a graft done to my hand due to an infection caused by the SLE and part of the PT was usiing the dip, my therapist was cool, would look at my other hand and let me dip it too. They are available at Walmart, Kmart, CVS etc for about $25. Since I am the only one that uses it and I always wash my hands thoroughly before use, I just peel the wax off and put it back in the warmer. After 5 yrs, I haven’t had to buy any more parafin yet. But, it is relatively inexpensive compared to the relief.

      Reply

    • Cari Elliott
      Jul 06, 2010 @ 22:14:54

      I’ve been wondering if there was any truth to the magnetic bracelets! That’s all the convincing I need, I’m about to google a retailer lol. I’ll try anything if it could mean one more step towards a “normal” life. Thank you!!

      Reply

  4. Melinda Winner
    Jul 03, 2010 @ 07:08:30

    Great Post , thanks for sharing . I have been on pain meds fro many years now . Its not that I want to but there are times I could not get through the day without them

    Reply

  5. Stacey
    Jul 07, 2010 @ 20:20:34

    rotten day today, my hands are huge! and really painful. Time for the icepacks. Just wanted to let everyone know how to make cheap and flexible ice packs. Corn Syrup and zip lock bags. These work well. For one, they dont completely freeze, therefore they stay somewhat flexible. Only drawback is they dont stay cold for more than 15 minutes

    Reply

  6. Melinda Winner
    Sep 10, 2011 @ 10:55:28

    Great Read ! . I thought i was in remission for over six months and the doctors said I was. However when my RA returned as yours, it did with vengeance. Lesson learned , I stay on my meds. Thank you so much for sharing. This is an important topic that I do not see addressed often. Feeling good is doable with the right treatment.

    Reply

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