The truth about living with Rheumatoid Arthritis

pain relief

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 treating shoulder pain – corticosteroid injection

shoulder-anatomyAnother day, another steroid shot…

Actually, that’s not really accurate.  I haven’t had a steroid shot in a year.  This time last year I had a whole bunch of them, shoulder, hips, SI joint, even my jaw.  Now I’ m wondering why I didn’t ask for one sooner.


90% of the pain gone.  Instantly.  Now, I know from previous experience that this relief might not last long.  But it might last for months.  Right now it is bliss!

This procedure is done under ultrasound.  First the radiologist visualises the tendons, bursa and synovium and assesses whether there is active inflammation that a steroid injection will tame.

Corticosteroids are powerful anti-inflammatories, and injected directly into the joint, they can bring instant and lasting relief.  Sometimes the effects take a few days to fully be felt.

Some people are afraid of the needle…getting a needle into a joint doesn’t sound like fun.  But I’ve had several.  And trust me, the sting of the needle is nothing compared to the pain of the inflammation!

Additionally, when you have a corticosteroid injection directly into the joint, you are treating the cause of the problem – the inflammation.  The pain is decreased as a side effect of reducing the inflammation.  So you are treating the problem directly, not just treating the pain.

It’s a simple, quick procedure (in the hands of a trained radiologist) with few side effects.

This most serious is the risk of infection.  The stats I found put this at about 1:20,000.  Not something I’m going to lose sleep over.

Rarely, the cortisone injection causes a flare, where the joint becomes more painful for a day or two.  This usually doesn’t last long, and the pain can be reduced by icing the joint.

Most physicians will limit cortisone shots to 3 or 4 per joint.  Reading through the available literature, this attitude is starting to change, because there is no evidence that repeated injections degrade the joint, as had been previously thought.  Animal studies have shown a weakening of tendons, and cartilage after repeated cortisone shots, however.  For this reason, caution is still used, and most doctors prefer to limit treatment.

My cortisone shot was in my right shoulder.  It has been very painful for about three years now.  Three years ago I had an MRI that showed bursitis.  I rested it.  That obviously didn’t help, because my oral treatments were not controlling my systemic inflammation. They still are not.

So I just pushed through the pain, safe in the knowledge that I am not actually doing any further damage. It just hurts.  Quite a lot some days.

A year ago I got a shot into this joint.  It helped for a few weeks.  Then gradually the pain returned.

Pain is a funny thing.  Like anything, if it slowly increases, you don’t notice so much.  You just adjust.  It’s like weight gain…if you’re gaining a few grams every week you really don’t notice.  Suddenly at the end of the year, you’re 20 kilos overweight, and you didn’t really see it happening.

Pain is the same.  It gets worse and worse, but you just tolerate it, and tolerate it, and get used to it.

Until it is gone.  Then you wonder why you put up with it for so long!

This time my radiological findings are much worse.  Both the bursa and the synovium were inflamed, but the radiologist felt that the AC (acromioclavicular) joint was the main source of pain.  (This is where the clavicle (shoulder blade) joins with the clavicle (collar bone).  The surrounding tendons also showed inflammation, particularly the supraspinatus tendon (the tendon that joins the main shoulder muscle to the humerus). From my symptoms he decided to inject the AC joint this time, whereas last time I had the bursa injected.  So far I am feeling more relief this time.

So in summary, bursitis, tendonitis, synovitis…every kind of ‘itis’ of the shoulder.  And some erosions.  Typical RA findings.

That double edged sword again – good because after all my years of denial, it’s clear that I do have RA, and taking heavy duty, scary drugs is my only option.

Bad because, well, I DO have RA!

But for now, I am having a little period of bliss.  And thinking about calling up my doctor to see if I can have a cortisone shot in each hip!  And my SI joint….and my knees…and my…