Catastrophe!
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Profile photo of Wren

It’s this @*#!! rheumatoid disease, which is making my hands feel like padded garden gloves filled with gravel, sand, and shattered glass. My feet are OK, today, and the rest of me feels just generally tender and battered. I figure this is how I’d feel after going a round with Ali and recuperating for a month.

All kidding aside, I’m doing OK.

No catastrophies here. So, what’s with the headline? It refers to a similar word used frequently in the world of pain management: catastrophizing.

Physicians, physical therapists, and mental health professionals who treat chronic pain patients use the word “catastrophizing” when they refer to the attitude of a patient who, when thinking about their immediate and long-term future, envisions the very worst: a catastrophe.

I get this. Not long ago, while forcibly weaning off opioids and looking squarely at a future without them, I catastrophized even though I’m a naturally sunny, optimistic person. Suddenly, there was no light at the end of my tunnel, and that scared me. I mean, this is me! I always find a bright side! I even disgust myself, I’m so cheery. I can’t help it!

But this time, facing daily, unpredictable, moment-by-moment pain without being able to blunt it in real time with medication was demoralizing. I was struggling. My government (the Centers for Disease Control and Prevention’s Opioid Prescribing Guideline) and my doctors were telling me, earnestly, that I could handle my pain—forever—simply by treating the underlying disease, first, and then with exercise, good nutrition, mindfulness/cognitive behavior therapy, and meditation. If I needed to (and could afford it), I could add physical therapy and acupuncture, too.

Let’s Get Real

In real life, it hurt too much to do more than some gentle stretches, most days. I tried to eat right, but my success varied from day to day. I care for my elderly mother 24-7. She loves tasty foods like ramen, canned chili, fried chicken, cookies, and donut holes. She is not into stir-fried or steamed veggies, skinless chicken breasts, or brown rice. While I can and do eat those foods, frankly, I don’t blame her.

And I’m the Mindfulness Queen. I started practicing mindfulness as a form of self-defense about a year after I received my RD diagnosis. I made myself slow down and notice the beauty in the world around me, to live in the moment even as the pain and disability of my rheumatoid disease often narrowed my world down to me, a blanket, and the music in my earphones.

These things help—a lot. Distraction—forcing my mind off my pain and onto something else, like music, or a book, or a movie, or writing, or sketching—has always worked best for me, as I can sustain it the longest. I’ve meditated off and on over the years, as well.

Still, I always knew that if my joint pain got too big for me, I could rely on some form of opioid analgesic to smooth the sharp edges off it. Then I could move on with my life. I could be productive. I could be happy.

My doctors were not free with these drugs, not even three decades ago. They were cautious. They made sure I understood that they were harmful if misused or abused. They prescribed them in limited amounts. We worked together to control my rheumatoid disease and pain. We were a team. But these drugs were suddenly verboten.

So, believe me, I tried hard not to let going without them scare me when the big pain hit. “Hey, this pain is making you stronger!” my mercilessly cheerful inner voice shouted at me, trying some desperate Cognitive Behavior Therapy. “Be proud! You’re a true warrior!” When I whined anyway, it shrieked “Hey! Not many people out there can handle this @!&*! like you do!”

But my other mind-voice, the quiet one that faces facts and worries about them, whispered “This hurts so bad, Wren. Can you endure it for the rest of your life? How?”

Today? This moment? I don’t know the answer to that.

What I do know is that the alternatives to pain-relieving opioids pushed by the CDC in its guideline can and do work. Nutrition is good. Exercise is great. Good sleep habits, ditto. CBT, mindfulness meditation, and Therapeutic Neuroscience Education (TNE) are incredibly useful for controlling chronic pain. I can’t deny that thinking more positively about my pain, circumstances, and life is better and healthier for me than descending into hopeless, catastrophic despair.

There’s just one catch. You must constantly drag your mind into the here and now—the present moment—in order to make these alternative pain relief methods work.

Living one day—one hour, even one minute—at a time helps. That way you’re not allowing your mind to range ahead into uncharted territory. See, it’s there, in the amorphous and unknowable future, that your thoughts can hurt you right now, today.

But let’s get real again. Few of us have the skill, the will, or the leisure to meditate continuously. We have jobs, kids, husbands, wives, lives. And while it’s good and healthy to push away negative thoughts like “I can’t handle this” and “I hurt so bad! How can I get through the rest of today, let alone tomorrow and next week and, well, forever?” the fact is that sometimes we just can’t. Sometimes we must face those thoughts head-on.

Because these are reasonable questions when you’re living with a chronic disease as painful and physically disabling as RD. I think the CDC needs to pause its battle against opioid abuse long enough to see and do something about the catastrophe they’re causing in the lives of responsible patients when they deny them these useful and benevolent drugs.

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13 comments on “Catastrophe!

  1. Profile photo of dors dors says:

    Hi Wren! I don’t have RA myself but read the articles for a friend that does. Not only does she have RA, but also Lupus and MS. Like you she is a super positive person and finds the silver lining in every cloud.
    When I first saw the new guidelines on opioids I was furious. The problems the government is trying to address has nothing at all to do with users of a serious illness. I expected them to exempt certain illnesses from their ruling and they did not. If these rule makers had to live even one day with the pain you all endure every day they would certainly rethink their rules. Not for one minute do I believe that these rules will combat the street use of these drugs. The sellers of these drugs do not obtain the majority of their wares through prescriptions, they are obtained through drug smuggling. So why the government thinks restricting legitimate use will cure the problem is beyond me. It is a typical knee jerk reaction and knee jerk reactions have never worked in my experience.
    It is hugely important that the patients have an advocacy group that gives them a voice. The government is to be for ALL people and that should certainly include people that are entitled to pain relieve.
    It is my believe if the government does not realize this the black market will only get additional customers.
    My prayers are with all of your community and my hope is that there are enough compassionate doctors that will fight this ruling and use their own good judgement to continue to prescribe as necessary.

  2. Profile photo of stormlight stormlight says:

    Restriction of Opioids, and its resultant increase in suffering, is a stupid idea. Pain, constant serious chronic pain, is extremely bad for the brain: I read of one study which showed that for every year a patient spends in constant serious pain, 5% of their grey matter is lost. Yikes!

    In the UK, although our docs – naturally – haven’t been hamstrung by the CDCP, they are still cautious and will try everything else first before doling out the good stuff. I went through Cocodamol (constant ‘flu symptoms because of Paracetamol intolerance), Codydramol (I’m good with Dihydrocodeine but, again, Paracetamol), Amitriptyline (completely insufficient as sole pain control), Gabapentin (caused me to gain 12lbs in 10 days while destroying my appetite), Pregabalin (absolutely nothing happened), pure Dihydrocodeine (fine for a while but after that it wasn’t “man enough”; I was taking 60mg at a time and my doc wondered how the hell I was still standing) and, finally, Morphine.

    Now… *that* worked. And after four years, although I naturally need rather more of the stuff than before, it still does the trick.

  3. Profile photo of pugpen pugpen says:

    Wren, I enjoy reading your post, they are so well written and I can tell you write from your heart. I’m an RN who had to give up my career due to RA shortly after my diagnosis in ’99. That sucked & this disease sucks, but after so many years I’ve learned to accept & abide by it’s limitations (not that I had a choice). I agree with what you say, totally. And I do believe that all this opioid hub-bub will ‘run it’s course’ and will in fact shift back once again to focusing on people’s need (and right) to be treated for their pain. Back when I was was a nursing student we were taught that pain should always be assesed & that the patient had a right to expect prompt treatment for their pain—plain & simple. Nowdays, pain is looked at differently & doctors are so afraid of loosing their medical license that patients are being referred to pain mgmt centers by huge numbers. And so consequently patients are having to wait unacceptable lengths of time to even be seen by a pain mgmt physician. I myself fall into this category (needing a steroid injection for spine issues). The government is frustrated by the numbers of opiod over-dose deaths & the CDC is doing I guess the only thing they know to do. Here in Kentucky the “war on opiods” isn’t gaining much ground except to increase the use of heroin which now is cheaper and more plentiful than opiods on the street. Chronic pain patients need a voice of reason in Washington.

  4. I find it frustrating when the government is pushing physicians to not prescribe “excessive” opiates yet, not a lot of common knowledge about other non-opiate meds which can help with pain.

    I’m specifically thinking of
    Cymbalta (duloxetine),
    Lyrica (pregabalin),
    Neurontin (gambapentin),
    Fetzima (levomilnacipran).

    Anyone know of any others?

  5. Profile photo of stormlight stormlight says:

    For neuropathic pain specifically, there is also a drug called Amitripyline. It began life as a tricyclic antidepressant, but after a furore in the British headlines some years ago now it was withdrawn from that use; it caused suicidal thoughts and, if memory serves, a thankfully small number of suicides in the under-25 age group. I believe it’s still forbidden to them in its two new “off-label” uses: I say two because it’s also, besides the neuropathic element, a pretty good drowsy-maker. For me, anyway. It’s also, with careful dosing, one of the few tranquilisers/sleep meds which can work safely with Morphine. The only problems I find with it are that it can set my Asthma off, and that it leaves me with a severely dry mouth (possibly this is a result of mixing it with Morphine).

  6. Profile photo of MNwithRA MNwithRA says:

    Most of us with RA were not abusing opioids. I agree with you. Seems nuts to withhold the occasional pain pill. If a doc sees abuse, that’s different. For me, I hate talking them but on occasion, they bring a short respite from flaring!

  7. Profile photo of Richard Faust Richard Faust moderator says:

    Thanks for writing MNwithRA. Thought you might be interested in this article from one of our contributors on understanding the CDC guidelines for opioid prescribing: https://rheumatoidarthritis.net/living/understanding-the-cdc-opioid-prescription-guidelines/.

    One of the main reasons this may be helpful is so you have as much information as possible when speaking to your medical team. Sometimes even the professionals don’t completely understand and will often err on the side of caution on how to proceed. Best, Richard (RheumatoidArthritis.net Team)

  8. Profile photo of Piplover Piplover says:

    Last night, when having a bad reaction to my methotrexate, I found myself doing this, falling down the hole of “What if it never gets better than this?”
    Some days I’m able to forget I have RA, but most days it’s a constant reminder in my life, and I think I needed this little reminder that this, too, shall pass. Thanks!

  9. Profile photo of Richard Faust Richard Faust moderator says:

    Glad that the article helped Piplover. Sometimes the emotional aspects of a condition like RA takes a back seat to the physical, when the reality is that the two are intertwined. This article from our editorial team looks at managing the emotional and stress related aspects of RA: https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress/.

    Also, if you haven’t already, you may want to check out our Facebook page at https://www.facebook.com/RheumatoidArthritisDotNet/ as an additional resource for information and support. Best, Richard (RheumatoidArthritis.net Team)

  10. Wren, I am ready to do some catastrophizing, but I want my catastrophe to be really good. No second rate catastrophes for me. I want a whopper. Any good ideas?

  11. Profile photo of Wren Wren moderator author says:

    Hey, Lawrence ‘rick’ Phillips!
    Catastrophizing is easy, right? Having RD and, in your case, diabetes, means you’ve got your battles lining right up. The harder job is not catastrophizing and, instead, keeping your thoughts on living well here and now, in the moment. No whoppers here, I’m afraid, but the daily, moment-by-moment challenge of staying in the pragmatic now.

    Thanks for stopping by and commenting, m’friend. I love hearing from you and as always, wish you well. 🙂

  12. Profile photo of Kittymom Kittymom says:

    My heart goes out to you. In your shoes I would be very tempted to fire that doctor. I have a rheumatologist who works on controlling my disease and I also have a pain doctor who works with me on controlling my pain. We use physical therapy, meditation, and opioids. They can be used responsibly. Some months I need less and go longer between prescriptions, some months I have a bad flare and use more. Pain is hard on the body. It can raise your blood pressure, increase the harmful hormones and generally do real damage to you physically along with making you miserable.

  13. Profile photo of Wren Wren moderator author says:

    Hi, Kittymom!
    I did finally fire my doctor, and when I saw her replacement, was quickly referred to a pain management specialist. To my relief, I am now taking both gabapentin and low-dose opioids to help me manage my pain.
    Both of which have helped me, also, to keep the catastrophizing to a real minimum. I’m sure you’re right about the harmful side-effects of uncontrolled pain, including increased blood pressure. Unrelieved stress, which keeps us in permanent “fight or flight” mode is just not good for us physically or mentally.
    Thanks for your kind wishes and for taking the time to comment. It means so much to me! I hope to hear from you again soon. 😀

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