The truth about living with Rheumatoid Arthritis


Rheumatoid Arthritis – is it pain or fatigue?

all medsI have to laugh at myself.  I have been lying here most of the morning.  Last night was an awful night.  I had to get up twice to take more pain killers.  Oxycodone, 10mg.  So I started today behind the eight ball.  Even for me.

Pain is moderate just sitting here. And climbs to severe if I actually try and use a joint.  Typing is hurting, but I need to DO something, so dear fingers, you WILL do my bidding!  And you wrists can just keep it together a little longer.

So back to laughing at myself.

I hurt. Fine. I’m used to that.  But today is a really bad fatigue day as well.  I don’t always suffer terrible fatigue.  But today I feel like my body is made of lead. My brain has been squished into a little corner of my head and the rest is full of some cottony substance.  My muscles hurt and I keep thinking of things I need to do…and then they are gone.  Whatever I should be doing right now is forever lost to the ether.

Wait! I need to buy drinking chocolate.  Best write that down.

Back to why I’m laughing at myself.  I CAN stay on topic. I CAN!!!

The fatigue.  So. Damn. Tired.

So I eat a healthy breakfast.  Bran cereal with some fruit.  Ok, stomach feels better. Settled.  Surely all that good nutrition will give me some energy.

Still tired.

Take some vitamin D.  Take some vitamin B6.  Magnesium.  Surely THOSE will make me feel a bit better?  Give me a lift?

Still. Tired.

Another hour of lying here and wondering what I should be doing.  My vision is blurring. Because I’m THAT tired?  Or is it actually my eyes failing in some way.  I should check when my ophthalmologist appointment is. It’s soon.  I know it’s soon.

But I’ll just lie here a little longer.

And have a coffee!  THAT will give me some energy.  Surely.  Strong. Black. Sweet. Coffee.  Caffeine and sugar.  That will give me the shot in the arm I need!

Snore.  Ooops.  I actually fell asleep for a while.

Ok. Take a pain killer.  It’s overdue.    I didn’t take my morning dose of oxycodone, because I took so much in the night.

I take a pain killer.  Fatigue starts to lift some.  I am sitting up now.  My head is clearing up.  I’m about to tackle that basket of washing that needs folding and putting away.  And I have done the dishes and cleaned up the kitchen.

It wasn’t really fatigue.  It was pain. It was pain that I am so used to feeling that I don’t even acknowledge it as pain anymore.  Oxycodone doesn’t treat fatigue. Opioids treat pain and can cause fatigue

But when I take opioid pain relief for my rheumatoid arthritis pain, the fatigue tends to lift.  Because for me, the fatigue is a function of pain.

I feel fatigue because my body is fighting so much pain. And it’s exhausting to be always fighting pain.  My brain can’t hold any thoughts because its busy blocking pain.

But I hate being dependent on oxycodone.  Hate it.  I know I need it, but I hate any sort of dependence.  And that is what is at the core of my bouts of depression. Being dependent.

Dependent on people. Dependent on drugs.  Especially dependent on opioids.

I have always been a very independent person.  I have always been the kind of person that helped others.  I always had the capacity to carry others with me.  I could always fill in the gaps. Because I had tonnes of energy and got 25 hours out of every day.

And now I’m the opposite of that.  And I have no one to carry me.

But I DO have my oxycodone.

Rheumatoid arthritis and the role of the General Practitioner in pain relief

I would be lost without my GP (or primary care doctor).  He is the guy that prescribes my pain relief.  My rheumatologist does not.  That seems to be a pretty normal state of affairs.

Yesterday I was desperate, and couldn’t get in to see my usual GP.  But I saw a different one, whom I have seen a few times before.  He’s got a special interest in muscular skeletal issues and sports medicine, so he is a good choice, and has been very attentive and interested on previous visits.

But I was worried. He has also expressed concerns about the dosages of Endone and Targin (oxycodone)  I have been taking. So I was afraid he would not want to fill my script for Endone.

He was wonderful though.  He asked where I was at ‘with everything’. The last time I saw him I was begging him for cortisone injections into my SI joint and lumbar spine.  He sent me for those and wanted to know if they helped.  They did indeed!  He offered to send me again, but the truth is I can’t afford any more cortisone shots right now.  I would love to get my SI joint injected again, because it also causes a lot of referred hip pain.  But I can manage it right now.  If I get to the point where I can’t walk again, I will find the money then.

I explained it to him this way.  Cortisone shot = out of pocket expenses at $70 per joint. I need at least 8 injected.  Total $560.

Box of 120 endone tablets  = out of pocket expenses $6.

Yes the cortisone injection is treating the problem and the oxycodone is just masking it. But you can’t argue with the math when you live on a Disability Support Pension and have two kids.

So he agreed to fill my script.  I asked him for a higher dose.  I know that Oxynorm is 10mg of oxycodone, and I always take two 5mg tablets, because one doesn’t touch the pain.  So why not prescribe the 10mg tablets.

He refused.  He gave me my one month’s supply.  Six boxes of endone.  Twenty tablets per box.  That’s 120 tablets.  He told me I could take up to 8 tablets per day.  So let’s do the math again.

Assume a 30 day month.  8 tablets per day.  That would mean I need two hundred and forty 5mg tablets to make it through the month.  Or one hundred and twenty 10mg tablets.  Lucky math was my best subject, because this doesn’t add up.

He is telling me I can take 8 tablets per day, but my prescription authority is only for enough to take 4 per day.

Clearly he doesn’t believe I should need 8 tablets per day, every day.

He asked me to only take them when I really need to. I told him I do. He told me I was addicted now.

I paused. I was going to correct him, and say ‘No, I have developed a tolerance and so need a higher dose now.’  But that’s semantics, really.  Instead I said, yes, so some extent I am, and I do understand that’s why I need higher doses.  Then I asked him if he had a solution to that.

He actually looked very sad and said ‘No.  I’m sorry.’

I told him I didn’t really expect any treatment to work (because that’s exactly how I felt at that moment), and that oxycodone at least gave me some quality of life.

He asked me how long I had been suffering from rheumatoid.  I said 8 years.

He quietly agreed, and handed me the script.

I gratefully accepted the script and thanked him.  But that conversation finalised my decision on prednisone.  I asked for a script for prednisone as well, because I am going to need something to control the inflammation, not just pain relief, just for a little while.  Because I need a break.  Otherwise I will be back in two weeks asking for more Endone.

He agreed.

And then he stopped.  He asked me if I knew why my disease had gotten worse lately. Had anything changed. Was I under too much stress?  Was I depressed?

He was being caring, trying to help.

I told him my disease hasn’t gotten worse. This is normal for me.

He said I looked considerably worse today than the last time I’d seen him.

I told him this was because I have just spent nearly 4 days without Endone.  Without proper pain relief.  That every other time he has seen me I have had enough Endone in my body to allow me to function and to even smile. I have a habit of smiling. It’s a good habit. Except when you are trying to explain to people that you are in pain.  People seem to think you can’t do both.

Yesterday I couldn’t smile.  Three nights with no sleep because of severe pain will dampen a smile.  Plus I was still in severe pain.  No smile meant he took me more seriously.

But I still smiled when he handed me the script for Endone.

Rheumatoid arthritis and pain and more of the same

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.

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.

Rheumatoid Arthritis update

I have been MIA again…it’s been a very interesting 10 days or so since I returned from my holiday.

Firstly, thank you all for your support and advice and inspiration!  There were moments where I felt like I couldn’t handle it, I was crazy to have gone so far from home with two kids and just me to deal with everything, and was afraid I wouldn’t manage the trip home.  Some kind words at moments like those are sometimes all you need to realise other people are doing harder things right now, and you just need to take a breath, pick yourself up and keep going.

And the holiday was a success…and I would say to everyone who is thinking about doing something big, something scary, something fun, something they need to do to rejuvenate their soul…DO it!  Be confident.  You CAN do it. You WILL find a way.  And you will do yourself proud.  Some of the people I have met through having Rheumatoid Arthritis are the strongest people I know, and inspire me every day to keep fighting.

So thank you…for lifting me up when I thought it had gotten too hard.  My kids had a great holiday, and we all have memories that will last forever.

When I returned from the holiday, I fell in a big heap for almost three days.  Utter exhaustion first…and then the mega flare for two days.  It was to be expected.  I think I was holding it all together by sheer force of will…the moment I was back at home, safe and sound, my body fell apart.

I didn’t mind that.  I expected it.  I understood it.

The strange part is what happened next!

Three days of mild symptoms.  Only mild pain.  Nagging, annoying maybe…but NOTHING compared to normal life!  And I had energy!  I could NOT believe how much I could get done in a day!  The brain fog lifted.  The headache went away.  I felt good.  Good!!!

I could exercise…hard!  I ran on the treadmill.  My fitness gave out long before my joints did!  I did group exercise classes that are normally too high impact for me. I traded Yoga for Step. I lifted heavier weights.  And I loved it!  I had muscle soreness that was far worse than the joint pain.  Sheer luxury!

And yes, I started to hope that it would last.  That just shy of the six month mark of Enbrel, maybe things were finally turning around.

And then on the evening of the third day a familiar ‘itch’ started in my joints. It quickly developed into the deep ache I am so used to.  Then the stabbing screw driver pains began. And then someone started twisting the screw drivers and wiggling them around in there.

Back to normal life.

The pain came back suddenly and ferociously.  I took as much endone as I safely could, and it didn’t even touch it.  I lay awake all night, quite literally.  No chance of sleep with pain that severe.  I just tried to breathe and meditate, and get through the night.  The next hour.  The next minute.

By lunchtime the next day, the pain hadn’t lessened at all.  But there was also the realisation that within just a few days of mild pain, I had forgotten how bad ‘normal’ is for me.  When each day gets a little bit worse than the last, when slowly you are dealing with more and more pain, you don’t notice it so much.  You deal with it, because you have to.  It’s just a little worse than yesterday.  Yes, you take more pain killers.  You’re aware of that.  But you’re still managing. You’re still living.  You’re still getting things done, even if it’s the bare minimum.

And you don’t really notice that your life has become a constant battle against severe, unrelenting pain.

And you don’t really notice how little you actually *do* on an average day.

But when the pain returns all of a sudden, literally overnight, you notice!  You notice in a big way.

You notice and you don’t cope.

So.  Phone call to rheumy.  Emergency appointment.

I saw her the following day.  I was in her office for about two minutes before she told me she was filling out the paperwork to start me on Humira.  Enbrel has definitely failed.

I had an MRI done a few weeks ago.  She looked at those results and tut-tutted.   Herniated disks, nerve impingement, facet joint arthritis and spondylitis.

She was unimpressed with the level of endone and ms contin I have been taking.  She told me it would be better to up my prednisone again, until Humira kicks in.  But I reminded her I can’t do that, because I have cataracts from the prednisone.  I cannot risk losing my eyesight, or even becoming seriously vision impaired.

I told her I am taking 1500mg of Naprosyn daily.  That is 1.5 times the maximum daily dose.  However, I have done this before, and I am a large person – around 80kgs (176 pounds).  She said I have to lower the dose to 1000mg per day, because my kidney function won’t handle it.  Also, the risk of ulcers is always there.

So she came back to oxycodone.  Slow release every 12 hours and immediate release for break-through pain.  So, every four hours.

She has nothing else for me.  I’m not sure how long Humira will take to be approved.  In the meantime, the pain is impossible…even though I appear to be going about my life as normal.

This is normal.

So I wait.  For Humira.  And hopefully, a new normal in a few months.

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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