Rheumatoid arthritis and pain and more of the same

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It’s a brand new day. Except if feels alarmingly like the last one. Full of pain.

I ran out of endone.  Immediate release oxycodone.  I’ve tried pretty much all the opioids, and this one works the best.  It gives quick relief and quite good relief, obviously how much relief is dose dependent.  Enough endone to give complete relief would also put me in a coma, so that’s the impossible dream…

I also take slow release oxycodone.  Oxycontin or targin.  My doctor prefers me to take slow release, and has been asking me to increase my slow release, so as to decrease my endone use.  I have been trying.

But endone works better. Here’s why.  It works within 30 minutes.  I feel a noticeable reduction in pain within 30 minutes.  I also experience nausea and dizziness.  But there are always side effects, and I can work through nausea and dizziness. When the pain is knock down pain, I can’t work through that.  So nausea is better.  So I take an endone when I need to get something done. When I need to shop.  When I need to clean the house.  If I need to go to the school.  Even so that I can go do a gym workout.    Then when the endone wears off, I can rest.  Or take another if I still have more things that I MUST do. Endone gives me more control, because its fast acting, though not long lasting.

I usually take the same dose in slow release at the same time, so when the endone runs out, there is still some oxycodone kicking around.  So on a not so terrible day, I can get away with two doses of endone.  Because my GP really wants me to cut down on the endone and rely more on the targin.

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But when I don’t take the endone, just the targin, I don’t get that quick reduction in pain.  I just get the nausea and dizziness. And, funnily enough, a headache.  I’m sure the pain level is dropping, but slowly. Almost imperceptibly.  And the nausea and dizziness and headache without a reasonable reduction in pain means I still just want to lie on the couch.  Hours later I notice the pain isn’t so bad.  But the pain gets better over the day anyway.  And then returns.

I have been explaining this to my GP for months.  But he continues to ask me to do it this way.  I read a study that stated slow release pain meds have less addiction potential.  I bet that’s why my GP wants it done this way.  So I try.  But I consistently go over my allowed dose of endone, because I need the quicker pain relief.  To function.  To get through things that must be done, and then once it’s done, it doesn’t matter if the pain levels rise again, because I am back home and can slow down and rest.

This all sound fun, right?  It’s a well honed system, that does work for me, except that I need higher doses than my doctor wants to prescribe.  I know he has my best interests at heart.  But the major problem with opioids is tolerance.  I have a pretty high tolerance.  I am going to need every increasing doses to maintain the same level of pain relief.  This is a known fact.  Not much I can do about it.

It is much harder to endure pain when you know it can be reduced if not relieved.

This weekend I ran out of endone. I was sure I had another box. But I didn’t.  Now I really realise just how effective endone is for me. Just how much I rely on it to function.  Even though I am taking 15mg of targin morning and night (and last night I took much, much more) my pain levels are out of control.

Almost every joint aches constantly. And I have sharp, stabbing, icepick-inserted-in-joint-and-twisted pain in my wrists, some fingers, my ankles, knees and hips.  My shoulders, elbows, ribs, and jaw are just a dull ache today.

The last two nights without endone have been unbearable.  Some of the worst pain I have ever experienced.  Last night I took 30mg of targin (I think).  I drank more than a bottle of wine to kick it along.  Then I took two valium, because I still couldn’t sleep.  And a couple of  ms contin (morphine sulphate).

That was insanely stupid.  It was far too much medication, and in the cold light of day I realise how dumb that was.

The point to be realised though, is that I was in too much pain to think straight. I had taken too many drugs to think straight.  And I couldn’t cope with the pain.  I am no longer super woman re: my previous post.  I am not as strong right now.  There is a little part of my brain that is utterly ashamed that I am writing this, and admitting this, and telling me not to be such a wussy.

That little part of my brain is wrong. This is too much for me to cope with right now.  I need better pain relief.  I don’t know if this is a worse flare than usual, or if this is just what every day would be like without endone.

Messing around with too many drugs like I did last night is dangerous.  Isn’t it better to give me a higher dose of the drug that works for me?  Isn’t that less dangerous? When you’re in a lot of pain and have been for a long time, sometimes you break. Sometimes it’s too much.  Once you have let the pain get to an extreme level, you can’t get it under control so easily again.  Better not to let it get that bad.  And sometimes you’ll do anything to make it stop.  That’s when accidental overdoses occur.  NOT when appropriate doses of pain meds are prescribed.

Hopefully tonight will be better.  I’ve just taken another dose of targin.  Double my usual dose, so that I can get moving today.  I would normally take that much endone on top, so we’ll see if that helps.

It’s Sunday.  And chances of me getting an appointment with my doctor tomorrow are slim.  But I will go down there and beg for endone.

Or I need to up my prednisone again.

Or I need to wait it out.  See if it’s a flare and it passes, or if it’s normal life.  I spend so much time in this shape that I believe its normal life.  Every time I have an ultrasound the tech can see active synovitis.  Even though there is no conspicuous swelling.  Much as professor dipshit would like to keep telling me my rheumatoid arthritis is under control, I know it is not.

I need to have that bone scan to prove that there is something wrong with me.  I’ll need some endone to get there though.

I will be on the phone first thing to my GP to beg for an extra box, because I can’t get my usual refill until Wednesday.

And I will be back on the phone to my rheumy and leave yet another message.  In fact I’ll just go ahead and make an appointment so she can’t ignore me.  I might need to find someone to drive me there though.  Depends if my GP gives me the endone.

In the meantime, I’ll…do nothing.

I know that my desperation for endone will sound like addiction to some people.  This isn’t the case.  Endone relieves a large proportion of my pain. Of course I want it quite badly.  It takes me from couch bound to functional.

That isn’t addiction.  It’s trying to live.

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5 COMMENTS

  1. Dear girl, a rose by any other name…is still a rose. Of course you need the drugs so you can function, and of course you need more and more of them because you are building a tolerance. That is addiction. It sucks, but a lot of people in chronic pain become addicts. I’m addicted to Tramadol right now, and I take an occasional Vicoden of my husband’s (actually, in the last week I’ve taken one every day just about), but two of those is the most I will take a day and I only do that on rare occasions. I don’t need to be addicted to those as well…sadly, I think my hubby is. He has a physically demanding job and has been taking them for two and a half years. Chronic pain has no effective treatment I don’t believe unless you can find its source. How often does that happen? I am glad that you have a lot of self awareness and you know that taking too much drugs (especially w/the wine…lol) is probably not a good idea. It’s the people with no awareness you have to worry about. I hope you can get in to see your doctor on Monday 🙂

  2. WOW- on any level this post is scary, not just becuase of the risk you are taking yourself, but also as I read it I relise that I have been there. One night I took so much pain meds I was scared to fall asleep in case I stopped breathing, and I only took half what you took.I think you have come to a cross roads, what you do now-take the path most traveled(pain meds) or the path less travelled. I know this sound strange but some times you need to stand back and take a step by step look at the basics, afterall things have changed since you first started taking all the meds. Lets face it we have RA, we will never be pain free again! Go back to the basics- What effect the way we repond and cope with pain? Sleep, exercise,diet,sate of mind and our own beliefs about pain and medication. Look at sleep first- I could not believe the differance a better nights sleep effected my ability to cope with pain. The first thing I did was reserach mattresses- I ended up replacing my mattress with a tempur one-great decision- its a pressure free mattress. Then I looked at developing a strict bed routine-even when i was doubled over in pain-same routine, trained my body to recognise sleep indicators. This all made a huge difference. Its not an easy path, to reassess all the basics, and work through them. Its like when you ring the IT dept with a computer problem and they say-step on is the computer plugged in!!! and you think-this guys a fuckwit!! and then you see the kids have unplugged your computer!!!!!! Some times we have been doing this for so long that we do need to check the computer is plugged in!!! I do not mean to preach, after all you know that is not my nature- I much prefer nipple tassels and marching bands, but I am scared for you. Wishing i was able to help you more. you keep safe girl, and remember you are loved.xxxxxxxx

  3. It’s not addiction…it’s dependence. There’s a difference. Just like a diabetic isn’t addicted to insulin. Dr’s fearing law suits is the problem here. It’s a crying shame. I know it personally. Nothing is getting done with out pain meds for me too. If they could live this for a week, they would think differently. Sorry you have to go through this. Living with RD is tough enough…having to be humiliated at a Drs’ office to get medication so you can be a productive person in your own life is flat out wrong.

  4. Sarah…great advice about the mattress. That’s my next step and I do believe it will help. A good night’s sleep can make a world of difference. I was thinking Tempurpedic myself. Of course I will have to make payments on it, or sell my first born as those mattresses are not cheap! This pain thing we get trapped in does mess with your mind…hard to step back sometimes and look at it objectively.

    *note: I didn’t mean to sound judgy in my previous post. I just want you to be safe. Hugs…and I hope today is less painful for you.

  5. I have to say I was worried about you last night when I saw your wine/meds post, I was scared for you and at the same time I understood that desperate need to ‘numb up’. There is nothing more comfortable when you’re in a world of pain, than to have a drink and painkillers to ‘take you away’, to ease that pain to a point where you no longer feel it or if you do, you just don’t care anymore.
    I simply don’t understand doctors of chronic pain patients who are so concerned about the dependency/addiction whatever term you wish to use. Surely the goal is to stay on top of the pain so it doesn’t get to the point where you do what you did last night, and we all know that that is dangerous. I’ve been on di-hydrocodeine for several years now, primarily I was given it for my constant hip pain (secondary OA), but of course it helps all over and it’s the first thing I reach for in the morning, mid afternoon & last thing at night. I know I couldn’t do without it now, I’ve experienced withdrawal from it and it’s not pleasant. But as my pain is constant and unlikely to ever go away ( I have RA too), that doesn’t really worry me. I would rather be dependent and in less pain than the alternative. I have never as yet taken more than my prescribed dose, I realise that I may need somewhere to go with my dosage as time goes by and so I’m very careful, that doesn’t mean I’ve not thought about it, “I wonder what would happen if I took just one more”, so I do understand. I really hope you can make your doctor see how desperate you are to have steady, safe, reliable pain relief, the kind that you know from experience works for you, not what they think you should be using. I’m also glad that in the cold light of day you’ve seen how close to the wind you sailed & I really hope that you’ll never be pushed to sail that close again. I hope today is better xx

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