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…
[…] the pain is showing, you can bet its a very bad day. If you haven’t read this post on the pain of rheumatoid arthritis, take a look. Should I show it more? Should I complain more? What would be the point? […]
Oh So True. I am not bleeding, so I must be ok. Or after my family has seen me suffer walking up stairs and to add to that, they look at me and ask “WHAT WRONG”. My gosh have I been talking to a wall? what is wrong with me? Why can’t you walk a few blocks, my mother does and she says she has RA So, now my RA is compared to another women. Well, it turns out this other women, never goes to the doctor. She does not have insurance and is waiting for 65 to take advantage of Medicare. Where did she get the diagnosis of RA? Her head!
[…] still have at least six joints flaring every day. But over the last six months I have had fewer, full body mega flares where I am completely incapacitated on the couch. They still happen, however. I still have two […]
[…] and they flared at various times. Sometimes ALL my joints flare at once and these are what I call full body mega flares, or knock down flares. That’s when the pain is so bad that I can do nothing but lie down and […]
To me, it can feel like the flu all over my body. When I was first diagnosed with Fibremyalgia. (spelling).. I was asked by the doctor at every visit, where is your pain. Ah.,,,,,Everywhere Doctor. He was not a specialist and I was not being treated but instead being given pain pills with no explanation of what is going on in me. When I finally got a REAL Doctor and the blood tests they ran, I know now that had I stayed with that other doctor, my body would have been even more damaged. MAKE sure you have a good doctor who knows as much as he/she can about RA.
[…] then there are flares. Full body mega flares I call […]
[…] one way that things have improved is that I haven’t had a full body mega flare in 4 weeks. This is a huge deal. This is amazing in fact. I have never gone that long between mega […]
[…] of bipolar madness. Not only did my pain and fatigue not improve, I went into one of the worst full body mega flares I’ve EVER […]
[…] never done this without the support of an able bodied adult. Someone to take the wheel if I have a full body mega flare. I am anxious…and last night I felt absolute panic about whether I can, in fact, physically […]
[…] Full body mega flare. […]
I wish I had periods of being pain free, I always have pain at some level, even when I’m sitting/lying doing nothing, its’ there nagging away. Last week I was knocked totally flat, literally, not by the pain but by the fatigue, in all honesty I’d rather be dealing with the pain than with the fatigue. With the pain I can take meds, painkillers, muscle relaxants, use heat, it’s still bad but at least I feel I can do something to help myself through it. But with the fatigue the only way is to ride it out, doing nothing cos even eating is too much energy expenditure, picking up a drink to take said meds, too much effort. People have no idea, take a walk, get some fresh air, occupy your mind with something. Walking hurts, doing anything remotely constructive hurts and when the fatigue hits that’s it, you’re out until it decides to leave, it’s not up for discussion, you have no say. Yet we have to keep going because tomorrow could be one of those less pain days, I might actually be able to bake for my kids, clean up, do something constructive, those days are precious, well everyday is precious, but sometimes, those days that all I do is stay on the couch, I do wonder what I’m actually contributing.
Gillian..Don’t you love hearing people and their suggestions. Ok, I will take a walk if you promise to have an ambulance at the end of the block waiting for me. And FATIGUE. Oh goodness, I can’t say anything better than you did. I would like to know why we suffer with the fatigue . When I get a spurt of energy, I clean house, wash clothes so that everyone “thinks” I am ok.
[…] for the record this post describes a full body mega flare. I wrote it almost five years ago. That’s a long time to be going through these […]
A full body mega flare began yesterday. I was home alone and I could do was go to bed and pray. When I experience one of these I never know if this is it or if I might live through it. Today is tough but the pain is not quite as debilitating this evening. Everything still hurts just nothing much compared to yesterday. People think we are weak, lazy, making excuses, but if they had any idea what we are going through they would think we are the strongest individuals on the planet! Hang in there RA Warriors.
I think that’s what makes it so hard…when the mega flares start, you have no idea how long its going to last. I hope you continue to improve, Deborah, and you’ll have another one behind you.