I’m going to preface this blog post with some important information:
There is NOTHING WRONG with comparing our experiences. In fact comparing is one very important way to learn. I really hate people who say “you shouldn’t compare your disease to other people’s”
Bull.
Comparing is normal. Comparing is how we learn and understand eachother.
Its COMPETING that causes problems. It’s the Pain Olympics and playing “my pain is worse than your pain” and power-leveling that causes problems.
Comparing is absolutely fine. Competing is not.
What is a rheumatoid arthritis flare? What does it feel like? Is this a flare?
I often see the newly diagnosed ask these questions on forums.
It seems a weird question because a flare is simply an exacerbation of symptoms. We all have our baseline pain and fatigue levels, a “flare” is when we’re experiencing more pain and/or more fatigue than usual.
But you can see the problem with this, right?
Flares are relative to your personal baseline. All the word “flare” really tells you is that you’re feeling worse than usual. Without knowing how someone usually feels, it’s a totally meaningless word.
Flares are as unique and individual as RA itself. RA affects everyone differently, some people have mild disease and others are completely disabled by RA. So a flare for someone with mild disease is going to look very different than for someone with very severe disease.
I follow lots of rheumatoid arthritis advocates on social media, and when I was first diagnosed I figured out pretty quickly that people experience RA very differently. I’ve followed elite athletes who are competitive despite having RA and I’ve followed people who have died from complications of severe RA. The difference is massive…those two people had absolutely NOTHING in common with eachother…except a diagnosis.
A few months ago I was talking to an RA friend who was experiencing what she termed a “full body mega flare”. That’s my name for when all of my joints are inflamed and painful and the flare is disabling. When I’m in a full body mega flare I go to the couch, directly to the couch and I don’t pass “go” usually for a several days.
My friend’s “full body mega flare” was both hands being so inflamed, swollen and painful that she couldn’t make a fist. She was in terrible pain and couldn’t function because she couldn’t use her hands for anything. She needed help with self-care and she couldn’t work that day.
Her flare looked very different to mine, but we used the same terminology to describe very different things.
Why does what you call a flare matter?
The people around you need to know what a flare means to you. Does it mean you’re resting on the couch watching Netflix? Or does it mean you’re in excruciating pain, unable to keep food down, unable to function independently, unable to concentrate on Netflix even if you could watch it.
Your loved ones need to understand what a flare means for you so that they can provide support and appropriate help.
Your rheumatologist needs to know what a flare means to you so they can assess the effectiveness of your treatment plan.
Picture this: my rheumatologist asks me and my friend the very common question “How often are you flaring?”
We both say the same thing – I have about two flares a month.
But for her, a flare is painful, but only lasts a few hours, twice a month. That would count as low disease activity and wouldn’t warrant changing medications.
But if you’re having full body mega flares where every joint in your body is on fire for four or five days at a time and THAT happens about twice a month, then your treatment plan is NOT working and you DO need to change up your medication.
The first scenario, even if the pain is severe, means two days a month truly suck.
The second scenario means that about ten days of the month truly, truly suck. One third of your life is spent on the couch in agony.
But when the rheumatologist asks “How often do you experience disease flares?” the answer will be the same from both of us. Usually twice a month. IF we don’t elaborate and explain what a flare looks like and ensure that our rheumatologists understand.
I know it can feel like you’re whinging, or sometimes doctors will make us feel like we’re exaggerating when we go in to detail about how painful disease flares are. Its still essential that we go there though.
Without detail on what a flare means to YOU, and how it impacts your life, the answer to “how often do you flare” is meaningless. It tells your rheumatologist nothing, or worse, gives your rheumatologist a false impression of your disease activity. And if you’re not on the same page your rheumatologist is going to be over treating or under treating your disease. Neither is optimal.
My point? Make sure everyone around you knows what a flare is TO YOU, and how a flare affects you. If they don’t understand, they can’t help you.
Another friend, who has RA, has a flare once a week. But her flares last a few hours, always come on in the evening so she usually goes to bed early and wakes up the next day feeling fine. She takes a Naprosyn, has never taken opioids because her pain severity is not that high, and she rarely misses work. Her flares absolutely SUCK for her but her flares look pretty mild from where I’m sitting. I’m not power-levelling or competing with her. When she needs support, I’m there for her. I don’t talk about my pain or dismiss her pain as mild. Whatever your degree of disease, RA is a crappy disease and everyone deserves unconditional support and understanding.
But we can’t have understanding if we don’t first explain exactly what RA is like for us. As individuals.
I am in pain every day. My joints are “flaring” every day. The “normal” pain is the deep aches in the joint, but it’s not severe, its moderate. I work, go to gym and even jog with this level of pain. This is my usual baseline.
When I have a megaflare, the pain is 8+ and I take to the couch. The pain and fatigue are disabling and I can’t do much except lie there. I can’t concentrate, can’t blog, can’t function, can’t type, can’t work. I feel nauseous and utterly exhausted on a cellular level. I can’t concentrate, can’t focus on anything. I can’t read a book or watch Netflix, I’m too sick.
My flares are nothing like my friend’s flares. My disease is nothing like my friend’s disease.
I’m not competing and I’m not power-leveling. ALL RA sucks! But its important to know what your “normal” and what your “flare” looks and feels like. And be able to communicate that to the important people in your life. Otherwise they’ll make assumptions that are likely to be wrong.
Rheumatoid arthritis is such a difficult monster, it attacks some people insidiously and it flattens others. Some people climb mountains while living with RA and some people use wheelchairs.
When my friend is having a flare and she needs support, I’m there. I never say “you’re lucky, your flare days are better than my average day.” Because I’m not an asshole. I listen and allow her to vent. A few weeks ago she had dinner plans that she’d been looking forward to for weeks. Ofcoruse the say arrived and she had a bad flare. She knew it would only last that night, but she was unable to go to the dinner. She was devastated. I gave her a shoulder. I felt terrible for her. Not once did I think (or say) “I wish my flares were as mild as yours.” Because it wasn’t about me, it was about her. We talked about her, and hopefully my empathetic ear helped her feel a bit better. Allowing her to talk helped her feel a bit better.
I say again, it is NOT a competition.
Its about knowing what a flare means and when you’re loved one says “I’m flaring” whether that means showing up with a casserole and keeping them company, or whether that means being on standby to take them to the ER because a severe flare can trigger a life-threatening adrenal crisis.
Its about being honest with those around you. And for them, its about knowing you and your disease. Its about caring enough to know what you need from them when they are “flaring”. And its about communicating effectively with your rheumatologist to ensure you get the best possible care.
What does a rheumatoid arthritis flare look like for you?
For me a full body flare is just that, every joint from toes to jaw hurt and when I can literally feel the inflammation running round my body. I have days where certain joints flare, my hands may swell or my shoulders or knees may be super flared up but that is just normal day to day stuff for me, but full body means full body. That means I’m on the sofa, watching a film or reading on my Kindle, usually a film cos I can lie there and not move at all, under a blanket for the comfort and warmth. That means I may need an extra dose of my opiates or Amitriptyline to get any kind of relief/comfort etc.
these days I seldom have long lasting or terrible flares. It needs a different word from Flare. I sometimes say you know Sheryl this is a 1 alarm flare. If we get to a 5 alarm flare, that is when we need to roll up the sidewalks and turn off the lights. I have had those. But as I say not so much in a few years.
No doubt it will come again, but for now hey Sheryl this is a 1 alarm flare, is as much as i need.