The truth about living with Rheumatoid Arthritis

#pain management

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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Rheumatoid Arthritis and pain management

I had my appointment at the Pain Clinic yesterday.  My rheumatologist organised this, and at the time I felt he was washing his hands of me.

He told me he wanted a second opinion on what was causing my pain…he can’t get passed my mostly good blood work, even though it was he who explained to me that many people have seronegative Rheumatoid Arthritis, and relatively normal bloodwork.

Usually, so the theory goes, seronegative disease is mild, but this is not the case with me.  I haven’t responded to any treatments except prednisone, so its easy to look at my clean blood  and non-visibly damaged hands, and forget all about my ultrasounds and bone scans which show inflammation, synovitis and joint effusions.

His conversation was getting dangerously close to ‘it’s all in your mind’ which for me is a red rag to a bull.

He again explained that my pain might be caused by Fibromyalgia, rather than Rheumatoid Arthritis.

He has since sent me a letter making an appointment at the Biologicals Clinic.  So he clearly has had second thoughts.  That appointment is not until January 30th, 2013, but because of its existence, I have been inspired to ‘toe the line’ and follow his treatment plan.

Let’s face it, I need him.

So.  I have tapered down to 7.5mg or prednisone and dropped my Naprosyn to 1000mg per day.

Life is horribly painful.  This post covers what an average day with rheumatoid arthritis feels like.

It is very, very hard living with this pain when I know that if I up my prednisone to 15mg per day, about 50% of the pain will go away.  My joints will cease popping and grinding.  I will move more freely.  I will be able to jog sometimes and work out at the gym.

But if I want any chance of getting onto a biological Dmard – very hard to qualify for in Australia – I have to do as my rheumy says.

So off to the pain doctor for another opinion.

He was a good doctor.  He asked all the right questions, and listened to my answers.  He assessed my joints, and asked exactly where the pain is and asked me to describe it.

He explained there are two main types of chronic pain – nociceptive pain and neuropathic pain. Both have very different causes, and respond to different medications.  Rheumatoid Arthritis pain is nociceptive pain.  Fibromyalgia is neuropathic pain.

Fibromyalgia often co-exists with Rheumatoid Arthritis.  Some doctors even misdiagnose Seronegative Rheumatoid Arthritis as Fibromyalgia, just because the blood work is clean.  The two diseases are very different, although they do overlap and co-exist.

Anyway, I asked the pain doctor where he thought my pain was coming from and he felt it was quite clearly nociceptive pain caused by inflammatory arthritis.  He felt that my pain has been undertreated for many years, and that if we could get my pain under control, my quality of life would improve.

Sure, I agree totally.  The less pain the better as far as I’m concerned!

And I must admit, I haven’t wanted to take large doses of narcotic medications to control pain, so I am at least partly responsible for the undertreatment.  I have often prefered to ‘tough it out’.  I don’t want to be a functional addict.  Or potentially a non-functional addict.  I have spent weeks at a time on slow release morphine, and ultimately I always stop the morphine and prefer the pain to the nauseous zombie I become.

I much prefer prednisone, which while the side effects may be potentially disasterous, actually deals with the *cause* of the pain – the inflammation – and reduces it.

Opioids only mask the pain, and they don’t take it all away.  They only dull it somewhat.  And I am experiencing a need to take higher and higher doses of oxycodone to deal with the pain.  I am now taking four times the dose I was taking six months ago.

And my pain is not under control.

So the plan of attack?  A pain patch.  The strongest one available  – norspan (buprenorphine).  It’s a seven day patch.  It will reach steady state in three days.  The doctor warned me that the first day I will probably feel nauseous, dizzy, and sleepy.  All the things I hate about opiods.  He asked me to persevere.

I don’t like this plan.

I want to up my prednisone and just stay there.  I will risk the consequences.  A semi-decent life now is more important to me than a healthy, old age.  A healthy old age was off the table five years ago, whether I realised it or not.

But I need to do as the doctors say. They hold the power.  They are the gatekeepers to biologic therapies. The ones that could change my life.  Or not work at all.

I think I have a right to access every therapy that’s out there…but there are hoops to jump through.  And so I will try the pain patch.  I fill my prescription this afternoon, and will slap it on my arm tonight.

In two weeks I will see my third opinion rheumatologist.  She may offer a quicker pathway to biologics, or have another treatment option.  So I will try the pain patches for these two weeks and see how I function.

I suspect I won’t be able to go to the gym – which I can do on prednisone.  I suspect I won’t feel very good at all.  But I shouldn’t prejudge.  The patches are supposed to be better than the oral drugs.  But I will just have to wait and see.  Again.

Hurry up and wait…

Full Body Mega Flare

Full Body Mega Flare.  That’s what I call it.  Somehow the words ‘flare up’ just don’t really cut it.  It’s more than that.  It’s every joint you knew you had, and a few you didn’t, hurting, burning, grinding, aching.

And remember, I’m in pain every day.  Normal, everyday aches and pains.  Actually, wait.  Not normal.  Not normal at all.  Normal people DON’T hurt every day.  I forget that sometimes.  I hurt every day.  Not discomfort – pain.  That’s the ‘new normal’ of my life now.  I am used to it.  Most days my hands, feet, knees, hips, shoulders and lower back ache. To varying degrees.

And then there are full body mega flares.

When a flare hits, all bets are off.  All plans cancelled.  I’m not capable of anything except loading up on pain killers (oxycodone – opioid.  Strongest oral pain killer there is) and wondering what I did in a previous life to deserve this :).

During a full body mega flare, the aches, become deeper.  Then they become knives.  Stabbing pain, twisting, prising my joints apart.  It is excruciating, and I actually am amazed at how much pain one body can generate.  Sometimes I only have a few joints that are intensely flaring like this.  But a full body mega flare is ALL my joints at once.  Wrists, fingers, elbows, shoulders, collar bone, ribs, jaw, neck, lower back, SI joint, hips, knees, ankles, toes…have I forgotten anything?  Probably.  It is the most incredibly painful experience I have ever had.  And yes, I’ve had children. Not even close.  I’ve had kidney stones.  Gall stones.  It really hurts, OK?

The drugs do take the edge off the pain.  But they don’t take it away.  And I am so doped that I‘m not capable of actually *doing* anything sensible, anyway.  But at least it hurts a little less.  Great choice though, eh?

And the really fun thing is I never know how long a flare will last.  It might just be a day.  Or two.  The longest full body mega flare was around 4 months.  4 months of almost every joint on fire.  I was completely couch bound.  It took me 15 minutes to walk to the bathroom.  My hands were useless.  My body was broken.  The kicker was that no one believed me…I was expected to just keep on living life normally and getting stuff done.  My ‘friends’ mostly laughed and called me ‘hoppalong’ and joked about mobility scooters and bullied me into doing their biddging, because they figured I was exaggerating, or I was just depressed.  I don’t know how I got through that one…I hope it never happens again.

Some people who have rheumatoid arthritis have periods where they are pain free.  The usual pattern is a period of no symptoms, followed by a period where one or more joints will ‘flare up’ – become painfully inflammed, perhaps red and swollen.  Then the flare will pass, and life will go back to normal.  Until the next time.

I’m not like that.  Or rather, my rheumatoid arthritis is not like that.  I am always in pain.  Some days it is not bad…but it is always there.  I no longer remember what it is like to be pain free.  To me a ‘good’ day is a pain level of about 3 or 4.  That’s still enough to be annoying, trust me!   When some of my joints are flaring, it moves up to a 6 or a 7.  I class this as bad enough so that I want to just lie down and do nothing, but I don’t.  I need to work, take care of my family, all the usual things.   A full body mega flare is an ‘8’ or even an ‘8.5’.  A ‘9’ is a trip to the emergency room.   A ‘10’ is dead, as far as I’m concerned.

And even as I write this I think to myself ‘it can’t be that bad…’  Because I am not in a Full Body Mega Flare right now.  Just the normal, day to day pain.  And I work through that pain every day, and just deal with it.  I don’t have a choice.  Not if I want to have any kind of life.  So I forget how bad Full Body Mega Flare pain really is.  How it truly breaks me and often brings me to tears.  And I’m not a big crier.  Or I didn’t used to be.

I only cry alone though – it’s not fair to inflict my tears on people who can’t do anything about it.  They will only be upset by it.  And if they are upset, they tend not to enjoy being around me.  In fact, they tend to want to get away from me.  So I’m not being strong and selfless… I’m being very selfish.  I don’t want to be left alone.

So I cry alone.

And no, I don’t have a low pain tolerance.  Another topic I’ll save for another day.

Right now I need to lie on the couch and wonder what I can do to make this go away.  I would try anything at this point.  I probably already have.  Modern medicine hasn’t solved this yet….neither has the alternative medicine world.  I just have to believe that I will find something.  The power of  positive thinking?  Well, it can’t hurt…