The main symptom of rheumatoid arthritis is…pain. No surprises there.  what

But what is a surprise to the uninitiated is the severity of that pain.  After all, it’s just arthritis.  Everyone gets a bit of that as we get older, right?

Wrong.

Most people will never feel the kind of pain that people who live with uncontrolled rheumatoid arthritis live with every single day.  It is the kind of pain that nothing can relieve.

Narcotic pain medications can improve life significantly, however.  Yes, they come with a whole bunch of risks and side effects, but without narcotics (in my case slow release morphine and oxycodone) I would be bedridden.  I would not be able to function at all, most days.

With my pain meds, I live an impaired life. But it’s a life!  I can function. I can care for my children. I can do basic household tasks.  I can cook and make lunches and wash clothes. Albeit slowly and with great big rest periods in between.

In Australia, though they are highly regulated, it is not uncommon to be prescribed opioids for pain if you have a chronic pain condition.  Many doctors realize that for some of us, it’s the only opportunity for any quality of life.

Addiction is the main concern, and therefore these drugs are highly regulated.  A government authority is required to prescribe them, and the quantity is monitored very closely.  ‘Doctor shopping’ is not possible because there is a centralized database, and scripts need to be renewed in person every month.

I am allowed 120 tablets per month.  I have had months where I have needed more.  Then things get very difficult.

Without pain control, my life spirals downward very quickly.  I can’t sleep because of the pain.  Therefore the fatigue gets immeasurably worse.  There is no recovery. No break from the pain.   And so the pain gets worse.  And sleep becomes more impossible. Depression sets in.  Life becomes a hazy dark place where there is nothing but aching joints, and pain, and pain, and just pain.  I can’t get up. I can’t work through it.  I can’t even think.  I’m a non-person, taking up space on the couch.

But slow release morphine and oxycodone work well for me.  They cause nausea, constipation, dizziness, memory problems and drowsiness.  Oh and they make me itch.  But they allow me to live my life.  They allow me to function.

It’s not ideal. But modern medicine doesn’t have a better approach for me right now. I saw a pain management doctor, and he recommended opioids.  He didn’t have any better ideas.

What makes me furious is doctors who tell me that I should NOT be taking these medicines.  Who even try to take them away from me.

A few months ago I saw a new rheumatologist, for a fourth opinion. (Long story).  Her registrar took a history, which she skimmed. She looked at my blood work, which is entirely negative.  Not even a raised CRP level to be found.  She looked at my hands briefly and asked me about my pain.

I listed off all the joints where I experience pain, and how often.

She did no further physical examination.  She had made up her mind when she saw my clean bloodwork. She cluck-clucked and told me my treatment plan was all wrong.  She said my rheumatoid arthritis is under control, because my blood work says it is.

Therefore I have fibromyalgia.  So I needed to be on Endep or Cymbalta. I told her I had tried these drugs and they offered no relief.  Then I got annoyed. And I politely argued her diagnosis.

I have no symptoms of fibromyalgia.  I do not have generalized, widespread pain, nor tender points.  I don’t suffer the sensory issues, nor migraines.  I do have fatigue, but this is explained by my RA. In fact I have no symptoms that aren’t completely explained by uncontrolled inflammatory arthritis.

She stood her ground.  She said I have a pain sensitization syndrome.  The latest and greatest theory in chronic pain.

This may well apply to many people, but it does not apply to me.

I argued with her again.  I showed her a burn mark on my elbow where I was leaning against a hot pan on my stove.  I didn’t move my arm, because I am so used to my elbow hurting. I thought it was just one of those sharp, burning pains I get in my joints.  No, it was sharp burning pain on my skin.  Complete with scar, now, to prove it.

The point is, I didn’t react to the pain. I barely acknowledged it. I am so used to pain, it is no longer a signal to alter my behaviour.

But someone with fibromyalgia or a pain sensitizing syndrome would have not only felt that pain ten times stronger than I did, but they would have reacted quickly and not been able to tolerate it. I told her I wanted her to test my pain tolerance before slapping a diagnosis like that on me.  I’m happy to stick my arm in ice water and hold it there to prove my point.  I know the kind of pain I live with. I know what I can tolerate.  I do not want it to be misjudged, or misunderstood.  I need help with it. And for that I need the correct drugs prescribed to me. Cymbalta gives me no pain relief whatsoever.

She shrugged.  She couldn’t back down now, she’d made her rash diagnosis in front of a junior registrar.  She was now demonstrating how to deal with a ‘non-compliant patient’.

She lectured me on the perils of oxycodone, and told me I was addicted.

Again I politely debated the topic.  I am not addicted. I am dependent.  This is a very different thing. I am entirely dependent on all my other medications as well, so I believe that’s a moot point.

I have developed a tolerance. This is a genuine problem. It means that over time I need more and more oxycodone to achieve the same level of pain relief.  It’s a problem with all opioids.  There is no solution to that.

I told her that prednisone was the only drug that had any significant effect on my symptoms.  And that I had read that prednisone was not effective in fibromyalgia.  She told me I was wrong. She felt prednisone wasn’t helping me, so I needed to get off it. In fact she suggested I stop my biological and methotrexate and arava as well.

I showed her my ultrasound reports that showed active synovitis and effusions in my hips and shoulders.  She just ignored those.  I asked her about all the cartilage damage, and told her I did not think my inflammation was under control if damage was occurring. She told me I am old enough to have a lot of osteoarthritis, and I probably had lots of sports injuries.

Except I didn’t.  And I’m 44.  Hardly old enough to be riddled with osteo/cartilage damage.  Again she ignored me.  Why let the facts get in the way of her favorite theory?

She stood her ground. Just take this glorified anti-depressant and you’ll be fine.  How many times had I heard that in the early years?  I wasn’t going to take it 8 years down the road!

I stopped arguing at this point.  I wasn’t going to get anywhere. She is a doctor who can’t see past blood work. Who doesn’t listen to patients, nor perform physical exams.  She doesn’t care about ultrasound or MRI nor nuclear bone scans.  She has read the latest and greatest theory on pain management, and now every patient she sees will be squeezed into that box, whether they belong there or not.

She is demonstrating ignorant and downright dangerous medical practice.

Pain control is an essential part of living with rheumatoid arthritis.  You will note I said control…not relief.  Many of us never have complete pain relief.

A life lived in constant pain is not a life.  Far more dangerous than the potential dependence on opioids is the risk of serious depression and suicide from living in unbearable pain, with no hope of relief.

I wish I had thought of that at the time.  I wonder what she would have said about that?

 

Please note that the content of this post reflects the personal experience of the blogger and does not constitute medical advice. Success or failure with a drug, a personal fitness program, diet, or psychological outlook is individual. Readers cannot assume that they can replicate any success or failure they read about in a blog. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding your medical condition or medications.

 

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