The truth about living with Rheumatoid Arthritis

Pain / Pain relief

Pain scale charts and my daily number living with chronic pain

You know when you tell a doctor you’re in pain, and they ask you what pain number you are?  They usually ask you this question without any kind of terms of reference,or pain scale or guide.  Which renders the question utterly useless.  How can I give a number, if I don’t know what each number means to the doctor?  Because he or she is the one who is going to decide on my treatment based on that number, but I don’t know what that number will mean to them.

Continue Reading

Pain management doctors…WTH?

Ahhh pain management doctors. They’re a special breed, aren’t they?  You really have to laugh.  I did.

I saw my pain management doctor today, second consult.  His first idea was a ketamine infusion which I just could not manage logistically. I had no one to care for my teenage children while I spent 5-7 days in hospital.  So I didn’t have the procedure.

Continue Reading

Are opioids appropriate for the chronic pain of inflammatory arthritis?

The opioid debate. I read an article today about how opioids ‘don’t work’ for chronic pain. That chronic pain is not severe enough to warrant opioids (um, really? Why do people continue to think that the words ‘chronic’ and ‘mild’ are synonomous?) and that chronic pain should be looked at and treated largely the same way other *PSYCHOLOGICAL* diseases are.

Excuse me. But OMFG. Clearly the learned doctor who wrote that article has never experienced severe chronic pain (yes, pain can be both chronic, and severe.)

Continue Reading

Rheumatoid Arthritis and those nights where the pain is out of control

I’m only having two or three full body mega flare nights each week now…nights where the pain is out of control…nights where I lie on an electric blanket with a heated throw on top…nights where the pain is all consuming and there is little hope for sleep…nights where I breathe, and let my mind wander though my body can’t…and I wait.

Wait for morning, or maybe and hour or two of peace, in that state between waking and sleep, when you’re not truly in either place. But you’re still aware.

I cry sometimes. But mostly I’m still. I debate whether to go over my oxycodone allowance. Not because it’s dangerous for me at this dose to take a little more. But because of dependence and tolerance and when do you push that envelope too far? There has to be a line you refuse to cross. There IS a line you can’t come back from.

So sometimes I take an extra dose and choose relief. And sometimes I hold firm at the line. And I wait for morning.

But these nights used to be every night. And now most nights the pain is controlled with narcotics, at least well enough to sleep. And that is a huge leap forward. In fact It’s like travelling back in time. Clawing back a few years…back to better days….nights.

That doesn’t mean that tonight doesn’t s*ck b*lls, to quote my eloquent teenage son. But no matter how bad it gets, I’m grateful that it’s not every night anymore.

And if that kind of improvement can happen for me, it can happen for anyone. It’s possible. I hope so, anyway.

Dr Pain – radiofrequency neurotomy complications. No care and no responsibility

Ok, so Dr Pain’s nurse finally called back. She has decided I’m really in pain that warrants further attention. Today I told her almost exactly what I told her on Monday, verbatim. But she didn’t pay any attention on Monday because she assumed I am just a cry baby and I was talking about normal bruising after a radiofrequency neurotomy.

Today she agreed that this much pain is not normal. I told her I had seen my GP because I couldn’t manage the pain, and for someone with refractory RA to say they can’t manage the pain is quite a statement. I told her the doses of pain meds that had been prescribed to me. She was shocked and said she would talk to the doctor.

Hear that? She hadn’t even told Dr Pain that I was having post op complications. Even though I specifically asked her to talk to him to give me pain management advice. Being that he’s a pain management doctor, and all. Unbelievable.

I was in a load of pain on Monday not to mention doped to the gills, but I believed she said that she would reserve a spot for me on Thursday (today). But she didn’t. Dr Pain is fully booked out today and tomorrow. The best she can do is the cancellation list.

Great. Thanks for that. Awesome after care. This woman clearly has no idea what it is like to be in excruciating pain. And I must admit, I wish I could let her feel my nerve endings for just five minutes. She deserves it!

But there is no point arguing with her. She is the gatekeeper to further treatment. It doesn’t pay to piss her off. She has made no appointment time for me. She will just call me when a space becomes available. It will be very interesting to see when/if that happens.

And the truth? I’m not even sure that I want this doctor anywhere near me again. He has screwed up big time. I’d love another doctor’s opinion on what the H he did to me…but that’s unlikely. The procedure was a cock up from start to finish. The anesthetist didn’t use local with the propofol so that the sedation burned. He rendered me completely unconscious when it was supposed to be twilight sedation. You are supposed to be able to talk to the patient while doing nerve ablations to be sure you are burning the right nerves.

He clearly did NOT burn the right nerves.

Having said all of that, I AM feeling a bit better today. I can walk unaided for a few minutes. I could drive a car a short distance if I had to. I have reflexes in my leg, and I can move it quickly now. I still choose not to drive just yet.

I am improving, but slowly. I cancelled my GP appointment tomorrow, because I don’t believe there’s anything more he can do. I have pain meds, I have anti-inflammatories. I have heat and ice and I am resting.  All I can really do is wait and see how much improvement I will get over coming days. When that improvement levels off, I will go see him.

I am doing some yoga stretches, very gently. It’s a very concentrated, and intense area of pain. I’m working around it. I am trying not to be angry, but I am inventing new swear words daily. I’d like to learn a foreign language, so I can swear multilingually. This has been one of my worst weeks ever, and I am very curious as to whether Dr Pain will do anything to assist.  A decent doctor would fit me in somewhere.  A doctor who cared.