The truth about living with Rheumatoid Arthritis

pain medications

GP pain management appointment

I saw my GP this morning about my pain medications and dosages. I booked a long appointment so we could discuss everything.  He started off very hard line,  but quickly softened.  I looked like poo.  I had about two hours sleep last night. Tired. Very foggy.  And we could both hear all my joints crack whenever I moved anything.  I’m convinced he’s under pressure to lower my doses, and it’s not coming from him.  He was very understanding, in fact.

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Rheumatoid Arthritis and pain management with opioids (morphine, oxycodone)

oxycodoneYou’re in pain?  Can’t you just take a pill?

Yeah, I can, but it’s not that kind of pain.  A tylenol or an ibuprofen just isn’t going to cut it.

RA pain can be severe pain.  It’s definitely the most severe pain I’ve ever experienced.  But it’s not always that way, some days are mild.  And for some people RA pain is always mild. It’s very personal.  And it’s that kind of disease. Different for everybody.

So what do you do about heavy duty pain?  You take heavy duty pain killers.

Oxycodone is the strongest oral pain killer available.  It sits just above oral morphine.  There are also a few skin patches that deliver a steady dose of Buprenorphine or fentanyl.

I’ve tried all of these, and the one with the least side effects for me is oxycodone (endone). Again, that’s individual.

And this is where the problem comes in. Side effects.

What do heavy duty narcotic pain relievers do?

Well, firstly they don’t take all the pain away. They just take the edge off.  The big problem is that if you take a high enough dose to get rid of all or most of the pain, you are basically sedated out of existence.

So you haven’t gained much.  You’re still not able to function.  You’re still not able to interact with the world.  You’re still not able to achieve anything meaningful.

But at least you’re not in pain.

So the thing to do is to find a balance.  Take away enough pain so that you can do the things that need doing (like feeding the kids) but not turn yourself into a zombie.

It’s a tough balance.

Especially as the days go on.  The cumulative effect of a narcotic like morphine or oxycodone is more and more nausea.  Dizziness.  Headache.  Itching.  Apathy. Depression, constipation.  Seriously, this stuff can take away your will to live!

And turn you into a non-person.

I take oxycodone every day now.  Still a very modest dose, comparatively, and I only take it when I absolutely need it.  If I need more than three doses to get through the day, I take it as a sign that I need to up my prednisone.  If I’m already maxed out on prednisone, then I just need to suck it up.

When it gets too bad, I take what I call ‘morphine holidays’.  When my mind and body just need a break from the pain, I accept that I am going to spend three days being a zombie and be useless.

But the pain will be less, and my body can recover for a few days.  My mind can reset.  I can rest and swirl around in bizarre drug induced dreams for a few days, then return to reality refreshed and ready to tackle the daily pain anew.

To do this I need another adult present, however.  Since my husband and I split, it is impossible for me to take a morphine holiday.  And maybe that’s a good thing.  Like most holidays, it is nice place to visit, but you wouldn’t want to live there.

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