When Rheumatoid Arthritis wakes you up

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what does a rheumatoid arthritis flare feel like
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I woke up crying this morning.  It was a bizarre experience.  I wasn’t sobbing, just crying softly in my sleep. My pillow was wet with tears and as consciousness slowly took hold I was hit with a wall of intense pain.

My ankles, each toe joint, especially the big toe, my knees, shooting pains through my hips, but the deep, sharp aches, lower back, elbows, shoulders, collar bone, neck, wrists, fingers (especially my pinkies and thumbs) and my jaw.  All burning, grinding, deep, sharp aching.

I can’t explain the pain. It’s not the knives stabbing twisting, prising pain. It’s an ache, but the word ‘ache’ isn’t severe enough.  It the strongest, deepest, but dull pain.  And it’s all encompassing.

I wake up in pain every morning. But this morning it was so much worse than usual. And yet, still familiar. I have been here often. I have dropped to a level of prednisone (10mg) that means my inflammation is out of control. I also can no longer take Naprosyn, which did help quite some.  It’s just a reminder of how many levels of pain there are.  Mild, moderate, can’t sleep!

I was so tired I needed sleep.  My fitbit is a great tool.  It tells me how badly I’ve been sleeping, even when I don’t realise it myself.   My son woke me at midnight.  He has been struggling with his rage lately.  He needed reassurance in the middle of the night that I still loved him.  My daughter woke me at 3:30am because she’d had an anxiety attack. She often thinks there’s someone in the house, someone watching her.  I called the dog, our beautiful big German Shepherd, and installed her on my daughter’s be to stand guard for the rest of the night.

Yes, I outsourced my daughter’s anxiety attack to the dog.  And I felt pretty good about it too.

I was back asleep in moments.  Deep, exhausted sleep.  And while I slept the pain ramped up, to a point where I was in tears. I don’t cry from pain often, but it has been bad lately.  Two nights ago I was totally overwhelmed by pain.  Even when a friend offered support online, actually offered to let me talk about my pain, I had nothing to say. My body hurt in too many places. The pain was too much. I didn’t know what else to say about it.  I just marveled at how much pain a body can pump out and NOT be dying.  What else IS there to day?

This morning the pain was too much, but my body needed sleep.  I felt the pain at 3:30am but was too massively tired to acknowledge it. I should have gone for the pain meds then.  Because just before 6am the pain won the battle my body was having with sleep vs pain.  And the pain wrenched me awake.  But my body had been well aware of the bad pain for a while. As evidenced by my pillow, sodden with tears.

As I said, bizarre experience.

And once awake, there was nothing but pain.  Too early to get up, but no longer possible to sleep. To tired to get up, but no longer possible to sleep.  Pain meds too far away, but I had to get up and start the long hobble to the kitchen.

So now it’s an hour later, and I took my higher dose. They have done their job, but the pain is nowhere near controlled.   If I wish to function today, I will have to function with high pain.  If it were not school holidays, New Year’s Eve even, I would take another dose, and be OK with being doped, staying home, doing nothing but staying on the couch, BUT not feeling as much pain.

Even with my oxycodone, slow release and break through doses on board, the pain is bad.  I have taken 20mg of slow release, and 10mg immediate release.  I wish I had 5mg tablets – then I would take another 5mg and still be walking, talking and in less pain. But I can’t have 5mg tablets as well.  Opioids are too ‘dangerous’ and not one of my doctors will accept that I am very skilled in judging my pain levels and how much oxycodone I need.  If I take another 10mg tablet, I’ll be too doped to be useful.

I think I’ll probably be too doped to be useful anyway.  I can’t think straight when Im in this much pain either.  I don’t see a win today.

So I’ll accept that the oxycodone dose that I have available to me has taken the edge off, but I will still be in truckloads of pain today.  I will be fighting that all day, until I get home later and can splat at fade out.

There will be no New Year’s Eve celebration for me.  Which means there will be no celebration for my kids.

I promised my son Star Wars today.  He wants to go with his Dad, but ONLY if I come.  I want to see the movie, and I have always worked to maintain family harmony.  Though I am truly starting to wonder why I bothered. But I promised my son. I am hoping he wakes up and decides he doesn’t feel like it.  That would be awesome.  But that’s unlikely, so to the movies I will go. My ex can drive.

There will be no gym this morning.  There will be nothing this morning.  I will splat here on the couch for another two hours and then wake my kids.  Tell them to get ready.

On the other hand, I might just take that extra 10mg.  I’m typing this and tears are falling again.  Consciously, I am dealing with the pain. I am telling myself that I am dealing with the pain.  But my body is telling me that I am NOT dealing with the pain.  I am NOT dealing with it at all.

The tears are telling me so.

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