Rheumatoid Arthritis and opioids and pain

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medications and scans

alcohol with medicationI had an interesting discussion with the phlebotomist at my local pathology lab today.  I was in a lot of pain, and I really had no business being up and walking around, but I needed the ECG for my impending Gall Bladder surgery.

We started talking about opioids, and she confided that without her pain medications, norspan (Buprenorphine) , she would not be able to function.  She would be home, balled up in her bed, living a life of tears and depression.

Thanks to a slow release patch on her arm, you cannot tell she is in chronic pain. She IS in chronic pain every day, but the Norspan dulls it enough so that she can function.

I had no idea.  And she had no idea I am in the same boat, except that I cannot work.  My recent attempt to go to school has proven that unequivocally. My opioids of choice (and I use the word ‘choice’ very loosely. No one CHOOSES to be on opioid pan relief) is oxycodone. It is safe and effective for me.  However, the pain medications do not take away all the pain. They only take the edge off. They take it from all-encompassing to manageable.

Then there are full body mega flares, and nothing really works then.  The oxycodone still makes life more bearble though.  The pain is more manageable, but I am still unable to function.  I generally just stay on the couch and dread the next time I need to go to the toilet, because that ten metre walk is excruciating.

We discussed the misconceptions about narcotic pain relievers.  I can’t count the times people have told me they are terrible, addictive drugs. That you can’t take them without becoming an addict.

The statistics don’t bear that out, but why let the truth get in the way of a good story?

Still other people have said that morphine etc will just knock you out.  It’s only for palliative care.  End of life palliative care, to make those last few days or hours more gentle.  They say you cannot function on narcotics!

They simply do not understand how many people need opioids like morphine,  buprenorphine, oxycodone, fentanyl etc to function. And that people CAN and DO function while taking these medications.  That these medications offer quality of life benefits. They are not the playground of dirty addicts.

My phlebotomist said “I know I’ll have a shorter life.  But I’d have no life at all otherwise. I’d rather have some sort of life and have it be shorter than spend it in bed.”

I couldn’t have said it better myself.

I am an expert in how oxycodone affects MY body. Only my body. I don’t know how it will affect your body, so I don’t try to recommend or dis-recommend (er, new word there. Can’t think of the real one) oxycodone to anyone.

I know how long the immediate release takes to hit my system, and what will happen when it does. I know how long the slow release takes, and that it comes along with more nausea and dizziness for some reason.  I take varying doses of slow release. I know when I need to take 5mg and I know when I need to take 25mg.

My usual dose of immediate release oxycodone (oxynorm) is 10mg, and I usually time that to take it an hour and a half before a gym class that I want to attend. My opioid pain medication relief levels will be optimum then.  I will be able to exercise, which is generally good for my body.

Oxycodone is a tool I use to improve my quality of life.  To allow me to do things that improve my sense of wellbeing.  Like work, when I can.  Like exercise, when I can.  Like Socialise when I can.  Normal things.  Normal people things.  Things normal people take for granted.

Things normal people think I shouldn’t need take opioid pain medications to be able to do.  Well, sorry, if only that were true.  Wishing a problem didn’t exist,  or deciding it shouldn’t, doesn’t magically make it go away.

So I can take my oxycodone.  Or you can take my oxycodone away and my life would literally not be worth living.  The levels of pain I experience are severe. And I am not catastrophising.

 

 

It is bad.

Most people with inflammatory arthritis are familiar with one or two joints being unbearably painful. It’s common for me to have 7 or 8 joints flaring to that degree, on a daily basis.  And it’s also common for all my joints (except thoracic spine) to be flaring.  So that my whole body is on fire.  There is aching, burning, stabbing, grinding…I’m out of adjectives. It’s hard to be articulate when you’re in a lot of pain.  Let’s just go with ‘It hurts a lot’.

I am not focusing on the pain, making it worse. I am not catastrophising. I am not attention seeking. I don’t even acknowledge the pain half the time. It creeps up on me, and I keep ignoring it until suddenly it has become too bad.  Until suddenly I am overwhelmed. This happened at my ECG appointment today.  My body decided it had had enough.  I felt weak and nauseous.  I needed to lie down. Like, now.  I didn’t even consciously realise it was pain.  I just…stopped.  Brain stopped.  Body stopped. I asked to sit down.  The lovely ladies made me lie down. And got me a bucket.

When I felt a bit better I headed for home. And I collapsed on my couch.  My pain killers were over due and my innate stubbornness meant I didn’t tell them at the pathology lab that I needed to get home NOW because I was breaking down.  They were calling the hospital for me, because I did these labs last week. In the end I just begged them to forget it. Take the blood. It’s easier than sorting out the administrative mess that some healthy person has created by not doing their job properly.

It feels terrible when the pain overwhelms.  At home, I took my opioid pain medications and lay down. That was all I could do. And I waited.  Then I took another dose, because it was clear that the usual dose wasn’t  going to cut it.  Then I waited some more.  And an hour and a half later, the pain is back under control. It’s not gone. It’s never gone. But it’s back to where I can manage it.

Now I’m considering a light workout at the gym.  I feel alone, and isolated and like some dirty little secret that society and medicine doesn’t want to acknowledge.  I want to go to gym and see my friends.

People make their judgements, blissfully unaware that anyone who has spent any time with me in the last six years, spoken to me, interacted with me, socialised with me, did so while I was taking opioid pain medications. 

And they couldn’t tell.

No one has EVER said to me ‘Hey, are you taking narcotics? Cos you’re acting funny…’

People just want to judge. Facts aren’t really that important.  They believe the scare tactics.  The believe that drugs turn people into addicts, when in fact addicts seek out drugs.

Addicts will be addicts. There will always be people prone to addiction, and they will seek out various substances to get their hits. Some addicts are addicted not to drugs, but activities like shopping, sex…whatever.  Addiction and drugs are not even necessarily related.

And addiction is serious.  It requires serious treatment. And compassion!  But the core of addiction is not drugs, it’s unhappiness.  And whatever substance or activity an addict uses to mollify their pain becomes the thing they are addicted to.

I am not prone to addiction. I am in pain.  Narcotics ease my pain.

If you have never hobbled in my shoes, then your opinion is not informed, nor is it required.

 

7 COMMENTS

  1. It is called mamanaged pain for us RA’ers, as my rheumy pointed out to 3 years, i will no longer be completely pain free unless I was sedated for surgery. It takes the edge off so we can function

  2. Some people don’t realise that there’s a huge difference between addiction and dependence. We are dependent on narcotics/other pain relief in order to function to some degree. Not a normal healthy person degree, just enough to get what needs to be done, done.
    When I listed my meds to my optician (a new one), the other month, he was shocked, visibly when I read it out to him, I’ve had other medical specialists look visibly shocked when I tell them my daily doses of di-hydrocodeine. Yes I’m in daily pain and need that relief to be able to function.
    I know if I’m late with a dose, my body screams at me and if I were to miss a dose I’d start feeling withdrawal symptoms. Do I get a buzz from taking it, no. I used to when I first went on it, I’d feel woozy and not quite with it & for this reason I’d not take it before I went to work, I’d struggle through and take it afterwards because I worked with children & needed to be 100% with it. Luckily my job was part time and I only had to manage a couple of hours, but I’d need to take it right after, normally before I’d left work. I no longer work, I can’t. Now I feel nothing but the relief when I take it. I know it takes my body around 50 minutes to an hour for it to metabolize and give me relief. I know that one dose lasts about 4 hours but I try and stretch it to 6 most days, because I know that the really bad days I need to take it 4 hourly to keep on top of the pain, so I try to eek it out. We don’t take these meds because we want to, we take them because we have to, or we’d be in bed or on the sofa 24/7 and get nothing done. I already spend too much of my time on the sofa, I need some of my life for me and the meds give me that.

  3. I too take oxydodone for inflammatory autoimmune arthritis.Mtultiple joints flare freqently. I live with pain every day. I have been much more mobile since increasing my pain meds, but have been having chronic migraines for three months, it seems perhaps from the oxycodone. I am at present trying to reduce my doses and although the migraines have become less frequent, my mobility has worsened and today my back, wrists and knees are terrible. I’m on the couch and feeling crap. I also had a migraine. The stigma about these drugs is unfair. I am trying damn hard to reduce them but struggle so much without.I hear you and understand what you are saying.

  4. I’m new to your blog. Thank goodness I found it. I too struggle with pain DAILY and am on a low dose narcotic. It’s time something is done but I’ve been so afraid to discuss with my Dr. thinking he would think I’m just “wanting more”. My pain is increasing, the fatigue is increasing, I’m not nice to my husband (because he gets it)…I put on my happy face when around everyone else (as they DON’T get it). Two comments from family members recently really hurt me…”does your mom like having surgeries” (shoulder surgery due to arthritis), and “do you ask for the Dr.s to “shoot you up”…oh, just give me a shot, it feels so good..while laughing” (I had an epidural in my neck 2 days ago). So again, thank you for writing. It helps me to know I”m not alone. And will also give me some ammo next time I see my Rheumy which is on the 21st. Cheers!

  5. I am on 7.5mg of Norco a day (the old Lorecet minus all the acetametaphen or so I’ve been told). If not for that, I could not continue to work. I need to work for the health insurance, to get the expensive biologics. I told my GP, I’d rather be hooked than hurt.

    • Agree Melissa! You’re doing everything right, and using pain meds appropriately so that you can have hte best life possible. I hope that youre GP is listening!

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