Full Body Mega Flare. That’s what I call it. Somehow the words ‘flare up’ just don’t really cut it. It’s more than that. It’s every joint you knew you had, and a few you didn’t, hurting, burning, grinding, aching.
And remember, I’m in pain every day. Normal, everyday aches and pains. Actually, wait. Not normal. Not normal at all. Normal people DON’T hurt every day. I forget that sometimes. I hurt every day. Not discomfort – pain. That’s the ‘new normal’ of my life now. I am used to it. Most days my hands, feet, knees, hips, shoulders and lower back ache. To varying degrees.
And then there are full body mega flares.
When a flare hits, all bets are off. All plans cancelled. I’m not capable of anything except loading up on pain killers (oxycodone – opioid. Strongest oral pain killer there is) and wondering what I did in a previous life to deserve this :).
During a full body mega flare, the aches, become deeper. Then they become knives. Stabbing pain, twisting, prising my joints apart. It is excruciating, and I actually am amazed at how much pain one body can generate. Sometimes I only have a few joints that are intensely flaring like this. But a full body mega flare is ALL my joints at once. Wrists, fingers, elbows, shoulders, collar bone, ribs, jaw, neck, lower back, SI joint, hips, knees, ankles, toes…have I forgotten anything? Probably. It is the most incredibly painful experience I have ever had. And yes, I’ve had children. Not even close. I’ve had kidney stones. Gall stones. It really hurts, OK?
The drugs do take the edge off the pain. But they don’t take it away. And I am so doped that I‘m not capable of actually *doing* anything sensible, anyway. But at least it hurts a little less. Great choice though, eh?
And the really fun thing is I never know how long a flare will last. It might just be a day. Or two. The longest full body mega flare was around 4 months. 4 months of almost every joint on fire. I was completely couch bound. It took me 15 minutes to walk to the bathroom. My hands were useless. My body was broken. The kicker was that no one believed me…I was expected to just keep on living life normally and getting stuff done. My ‘friends’ mostly laughed and called me ‘hoppalong’ and joked about mobility scooters and bullied me into doing their biddging, because they figured I was exaggerating, or I was just depressed. I don’t know how I got through that one…I hope it never happens again.
Some people who have rheumatoid arthritis have periods where they are pain free. The usual pattern is a period of no symptoms, followed by a period where one or more joints will ‘flare up’ – become painfully inflammed, perhaps red and swollen. Then the flare will pass, and life will go back to normal. Until the next time.
I’m not like that. Or rather, my rheumatoid arthritis is not like that. I am always in pain. Some days it is not bad…but it is always there. I no longer remember what it is like to be pain free. To me a ‘good’ day is a pain level of about 3 or 4. That’s still enough to be annoying, trust me! When some of my joints are flaring, it moves up to a 6 or a 7. I class this as bad enough so that I want to just lie down and do nothing, but I don’t. I need to work, take care of my family, all the usual things. A full body mega flare is an ‘8’ or even an ‘8.5’. A ‘9’ is a trip to the emergency room. A ‘10’ is dead, as far as I’m concerned.
And even as I write this I think to myself ‘it can’t be that bad…’ Because I am not in a Full Body Mega Flare right now. Just the normal, day to day pain. And I work through that pain every day, and just deal with it. I don’t have a choice. Not if I want to have any kind of life. So I forget how bad Full Body Mega Flare pain really is. How it truly breaks me and often brings me to tears. And I’m not a big crier. Or I didn’t used to be.
I only cry alone though – it’s not fair to inflict my tears on people who can’t do anything about it. They will only be upset by it. And if they are upset, they tend not to enjoy being around me. In fact, they tend to want to get away from me. So I’m not being strong and selfless… I’m being very selfish. I don’t want to be left alone.
So I cry alone.
And no, I don’t have a low pain tolerance. Another topic I’ll save for another day.
Right now I need to lie on the couch and wonder what I can do to make this go away. I would try anything at this point. I probably already have. Modern medicine hasn’t solved this yet….neither has the alternative medicine world. I just have to believe that I will find something. The power of positive thinking? Well, it can’t hurt…