The truth about living with Rheumatoid Arthritis

#pain relief

The Chicklet and her anxiety and my own head space

I am so unbelievably tired.  And I’m in more pain than usual, because I have taken my one pain pill for today.  And slow release is rubbish.

The Chicklet is not well. She has gastro and we all know that’s not fun.  A lot of us auto-immuners have gastro pretty constantly anyway, so I’m sure there’s a lot of empathy out there for her.

But here’s the thing. She works herself into a frenzy about gastro. She always has. For some reason she thinks she’s dying and has developed a deep anxiety about all things tummy ache!

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Chronic pain and opioids – my take

There is a huge disconnect in the chronic pain world, largely between those who believe opioids are an effective therapy when prescribed appropriately, albeit one that needs to be closely monitored, and those who believe there is no evidence that opioids work for chronic pain, and therefore there is no place for opioids in chronic, non-cancer pain management.

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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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Rheumatoid Arthritis and pain – pain and happiness are not mutually exclusive

happiness-painI gave up any expectation of ever having another day without pain a few years ago.

This doesn’t mean I gave up. 

It was actually a liberating experience.  It allowed me to stop wishing for things I can’t have, and start finding ways to make the best of what I still DO have.

Once I stopped waiting for the pain to go away, I started living again.  Really living.  Not the way I lived before Rheumatoid Arthritis, of course.  I have physical limitations now. There are many things I will never be able to do again.  But I appreciate every moment that I am upright and moving, and able to work and play.

I am mindful, and I am grateful.  And I am happy.

It’s not possible to be happy while you are focusing on all the things you can no longer do.  On all the things you have lost. On the people you no longer see.  On all the cruel things people think its OK to say to you.

Letting all the negative thoughts go is hard work.  It’s a process, and it takes time to get through.  There are no time limits.  Everyone is different, and everyone gets there in their own way, and in their own time.

The day that shift happened for me was the day I was able enjoy life again.

Don’t get me wrong, I still have my pity-party days.  They are totally allowed.  In fact they are essential.  RA sux bigtime.  Being in contstant pain sux bigtime.   Ignorant, arrogant, insensitive people who say the most appalling things to me suck bigtime!

Sometimes I watch people moving around, knowing it doesn’t hurt them to do so, and I feel the most intense jealousy I have ever known.

I listen to them complain about their minor niggles, or a bad hair cut and I struggle to be supportive and NOT tell them to suck it up and be grateful that their whole body is not on fire.

Some days I just cry.

I have to get these emotions out, but believe me, it’s not easy to do.  I don’t like to admit I can’t do something.  I don’t like to admit I can’t cope.  I don’t like to admit defeat.

I have a very good psychologist whom I see about once a month.  To vent. To explain (endlessly) what it is like to be locked in a body that hurts every day, and how strong I need to be to live my life in a meaningful way.

How hard it is to take each breath and accept that it’s just going to have to hurt.

Because that is the only option. 

The alternative is to spend my life on the couch, or in bed, waiting for the day the pain goes away.  But what if that day never comes?  What if the pain NEVER goes away?  If I am depending on being pain-free, haven’t I then wasted my life?

When RA first hit and knocked me down hard. I waited for a few months.  I believed in the promise of remission. I had to believe in that promise, I had to have that hope, in the beginning.

Now, seven years on, I have to believe in my ability to enjoy my life with pain.

Pain and happiness are NOT mutually exclusive.

My pain is in my body…in my joints, in my muscles, my tendons, my skin, my eyes…so many places.

My happiness is in my heart, my soul….myself. 


Note:  I take all my medications religiously.  I am still searching for a combination of medications that will get me closer to pain free…and I still believe I could be pain free one day. BUT I don’t let the pain stop me from living a meaningful life.  Each new medication gives me hope.  Each new treatment option is a chance to get my old life back.  And if I get that, I will feel like the luckiest woman alive.  But if I don’t, my life will still be worthwhile and wonderful.


Norspan patch (Buprenorphine) for Rheumatoid Arthritis pain

It is four days since my last post, and I spent two of those in a semi-comatose state.

I either reacted very badly to this particular opioid, or the patch was just too high a dose.  The pain doc has opioid conversion charts, and using the amount of oxycodone I usually use daily, he decided that the 10mg per hour of Norspan (Buprenorphine) patch would be the place to start.

There is a 5mg per hour patch, but this is only for people who have never been exposed to opioid or strong narcotic pain medications.  So regardless of my previous dosage of oxycodone, I would have started there anyway.

So what happened?

At first I felt nothing.  A few hours in, the nausea began.  But I thought the pain was lessening also.  Good!  Though I wasn’t a fan of this treatment approach, I started to feel quite happily wrong.

Then I started feeling tired, so I decided an early night was the way to go.  When I put the kids to bed, I went to bed too.

Around 11pm I woke up feeling so nauseous I headed for the bathroom.  Or rather, I tried.  I rolled over in bed and the whole room spun.  I tried to stand but couldn’t.  I crawled to the bathroom.  I tried to throw up, but only retched pathetically.  Then the room was spinning so much I lay down on the cold tiles.

They felt wonderful.

I passed out.

I woke up around 2am.  I crawled back to bed.  Lying on cold tiles doesn’t make arthritic joints feel wonderful.  I slept for another hour.  I woke to intense nausea.  I fell asleep again.

At 7:30 I heard the kids had gotten up.  I managed to walk down the hall and to the kitchen.  I had to sit down on the floor.  I crawled to the couch and then called for my son to get me the phone.

I had to call my ex-husband to come and take the kids to school.

He had already gone to work.

The kids were amazing.  The made their own lunches, and they walked to school.  Not a big deal for a normal 10 and 11 year old.  But my son has Asperger’s Syndrome.  He has never walked to school without me before.

So if there is an upside, he achieved something that day that he hadn’t previously been able to do.  Necessity is like that.  I am proud of him, so proud.  But angry too.  It cost him great anxiety and it wasn’t easy for him.  It also wasn’t easy for my daughter, who supported him all the way.

My husband came home from work early and picked up the kids.  He took them to their after school activities and fed them.  He stayed with me until bed time and made sure everyone was OK.

I am very thankful to him too.

But this drug incapacitated me more than RA does.

It would seem the choices are either deal with severe pain.  Or take strong opioids.  The problem with that is for the narcotics to be strong enough to manage the pain, they are also so strong that they sedate me completely.


Take prednisone.

Again I am thinking quality of life is more important that quantity.  In the end it will be my choice.

But if I take the prednisone I will look fantastic when I see my new rheumy.  That appointment is still eleven days away.

I can’t wait that long.  The pain is too awful.  I don’t think it’s worse than it was before…but now that I know I can make at least 50% of it go away, I can’t live with it anymore.  My tolerance is gone.

I am spent.

Prednisone it is.