Rheumatoid arthritis…does it hurt that much? Or am I a sook (crybaby)?
I had shoulder surgery three days ago. An arthroscopic subacromial decompression. My shoulder has been giving me a lot of pain for several years now. While other joints may settle into mild aches, my shoulder and lower back are always painful. Always moderate-to- severe.
I have had physical therapy and cortisone injections, with no real improvement. I have done several prednisone bursts, and the shoulder improves, but not to the same extent that other joints do. The MRI showed cartilage damage, bone spurs and a labral tear. More indications for surgery.
My surgeon diagnosed shoulder impingement syndrome and told me there was a 95% chance of significant improvement in the shoulder’s function and a considerable reduction in pain.
There was also a 5% chance of the shoulder becoming worse – ending up with a frozen shoulder (adhesive capsulitis).
I decided to put it off. I’m brave that way. (I actually have an irrational fear of anesthetic).
But then I had a few really bad full body flares, and the shoulder was the worst. It got to the point where I really didn’t want to put up with the pain any longer. And I wanted to find out what’s really going on inside that joint. Scans are good, but there is nothing better than physically taking a look. And whatever is happening in that shoulder is a good indication of what’s happening in all my other joints.
So. Book surgery.
Surgery is well known to be painful. Surgeons routinely prescribe narcotics, usually oxycodone, in the post-operative period, for pain. Surgery is recognized as painful enough to require opioids. There is no question about it.
Unlike arthritis pain. There is great debate about whether narcotic pain relief is appropriate for inflammatory arthritis pain. This is for dual reasons: firstly, arthritis is chronic pain, as opposed to the short term, acute pain of surgery recovery. Which brings up concerns about addiction and tolerance, and ultimately a poorer long term outcome.
The second reason is just plain disbelief that rheumatoid arthritis pain could hurt that much.
So sometimes those of us who live with severe, debilitating pain get treated like malingerers, sooks and/or drug seekers.
It’s not a terribly helpful attitude.
I do have to say though, that not ALL arthritis causes severe pain. There are mild cases of arthritis, and there are severe cases, and everything in between. The real problem is that we are using the same word to describe what might be an annoying, uncomfortable condition for one person, and the same word to describe what, for someone else, may be a horrifically painful disease affecting every joint and their entire body.
Clearly not the same thing. But this is where the confusion arises.
I am in the second category. And yes, people often compare their osteoarthritis of the thumb to my full body mega flares. I just smile and nod these days. I try to inform and educate where I can. But I know what they are thinking.
“I have that. But I don’t need morphine for it. Geez, suck it up princess.” (Translation: You are weak and spineless)
“I have that. But I tough it out.” (I am so much tougher than you)
“My mum has that. And she crochets three queen sized blankets every week, despite it.” (Even my old mum is tougher than you.)
I know all of this is rubbish. But it does start to wear you down. And it does start to make you question yourself.
Pair that with every time I see a new doctor, they look at my negative RF and normal acute phase reactants (CRP and ESR) and decide that my rheumatoid arthritis is in remission, and the seeds of self-doubt start to sprout.
I have physical evidence of active rheumatoid arthritis – ultrasounds and bone scans that show inflammation. But even I start to wonder.
Are they right? Have I become so pain sensitized that I am complaining about minor pain? Is what I’m feeling just normal aging? Am I addicted to my oxycodone???
Is my pain really that bad?
I question myself. When doctors tell me that my rheumatoid arthritis shouldn’t be hurting this much, I have to accept their opinions. I hate to at least consider that they may be right.
Usually I then decide I will tough it out without pain meds for a while and see how I go. And it ALWAYS ends badly. I wind up staying awake for nights on end due to severe pain. The lack of sleep compounds the fatigue and exhaustion and pain, which makes it even less likely that I can sleep the next night. And the next night. And the night after that.
It’s a horrible downward spiral that ultimately requires a burst of high dose prednisone, and yes, lots of oxycodone to get back under control. It’s a foolish exercise.
And then I accept that I am in pain. But still the thought lingers. The fear nags. Am I a sook? Am I weak? Do I have a low pain threshold? I need the oxycodone. But IS my pain really that bad?
Having surgery has been spectacular for clearing this question up, for once and for all.
Immediately post- surgery, the pain in my shoulder was far worse than my arthritis. The pain was sharp. I couldn’t move the shoulder at all. I certainly couldn’t lie on it, and didn’t want it touched in any way. I was coping with it, however. I wasn’t in tears, nor overwhelmed by it.
Within 24 hours my body rebelled and I started to flare everywhere. At that point, the pain in some of my joints was far worse than the pain in my shoulder. My lower back was hideous from lying in an unfamiliar bed for 12 hours straight. My hands swelled up. My knees. My hips. I couldn’t move around, because I was attached to an IV pole. Normally I would move to combat the pain. But there was no easing this. There was no escaping it. This was the BAD arthritis pain. Not the ‘normal’ everyday arthritis pain.
At least with the post op pain, if I don’t move the shoulder, it doesn’t hurt. So I can get some relief in between my shoulder exercises.
Nothing eases mega flare pain. You can’t lie a certain way. You can lie still. You can’t move. NOTHING makes any difference. Nothing except oxycodone and/or prednisone.
Three days post op, and the pain in my shoulder is far less than my arthritis pain. No question. And yet, my surgeon is very happy for me to continue on oxycodone for two weeks. She believes the pain to be severe enough post-surgery that an average person would require oxycodone for at least two weeks. More if required.
And it does hurt a lot. It really does. But I am used to living with a lot of pain, and I am used to moving joints through a lot of pain. The first day I couldn’t move my arm from my side. But at three days, I can now lift it to shoulder height. It hurts. But not as much as my arthritis does, because I get respite.
So I have a yard stick. My arthritis DOES hurt that much. By comparing it to something that is universally accepted as being very painful I can ease my mind that I do need oxycodone to function through my pain. I do not have a low pain tolerance, or a regional pain complex syndrome.
If it’s OK to take oxycodone for the post-surgery pain, then it must be OK to take oxycodone for arthritis pain. I am emotionally vindicated. I have answered my nagging doubts. I am taking an appropriate medication that allows me to live a more functional life. That improves my quality of life. I can stop having this debate with myself now, hopefully.
An interesting side note is my surgeon’s attitude. At no time was she unsympathetic, or imply that she not believe me about my arthritis pain. She took my arthritis seriously, even though the MRI did NOT show active inflammation. I told her that my ultrasounds showed active inflammation, and she agreed that I have active rheumatoid based on what I told her.
But she focused on the mechanical damage – the labral tear, the bone spurs, the tendinosis.
When she opened up my shoulder what she saw was inflammation. A severely inflamed bursa and thickened, inflamed synovium. So she cleaned those out, removing both, in the hope that when they grow back, they grow back less inflamed.
And in our post op chat she was different. She was kind before, but now she was even kinder. She was more caring. She patted my hand and said “It’s such a horrible disease.” She was sympathetic. Genuinely so.
She had seen with her own eyes the evidence of the pain that I had been trying to describe. She knew it was bad. She knew I would be dealing with this pain forever. And she was kinder because of it.
Australia and New Zealand: a timid, cowardly person, especially a young person; crybaby.