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Can Anyone Tell Me About Flare Ups? Do You Feel Pain When U AREN'T In A Flare Up? Or Is The Pain Just Much Worse In A Flare Up ?

Can Anyone Tell Me About Flare Ups? Do You Feel Pain When U AREN'T In A Flare Up? Or Is The Pain Just Much Worse In A Flare Up ?

A myRAteam Member said:

Hi @A myRAteam Member.
I don think that there is a "one size fits all" answer. I've had RA for 12 years now and my experience in the first few years was very different than in the years afterwards, which I think is because of a combination of disease progression, which medication(s) I've been on (and how effective the cocktail was at a particular time). plus, sometimes, I think the Universe just gets mischievous (or bored).

In th early years, I could go pretty long periods - weeks...months, even - during which (on meds), I was largely pain and swelling free. The fatigue (which really needs a different word, to distinguish it from the "fatigue" of normal, non-RA life) of the disease was more of a constant than the pain in those days.

As the years went on though, pain became more of a daily constant and "flare" took on a different meaning for me. People use it in different ways, right? When some say "I've been flaring," they mean that in recent weeks or months their average daily disease activity has increased.

Some use it to mean "Today is just awful. Much, much worse than yesterday...," and are referring to a more short-term burst of symptoms.

For me, I have come to use "flare" in the latter sense, meaning "I'm suddenly much worse (some combo of pain, stiffness, swelling, fatigue)." A "flare" as I use the word lasts anywhere from hours to days...anything longer than that and (a) I've been in touch with my rheumatologist and am either trying to figure outbid there is an infection driving it, starting a steroid burst to bring it under control, or something like that, and (b) I start switching over from referring to it as a "flare" and instead start saying things like "My RA is pretty out of control right now.

Clearly a matter of semantics, but that's kind of my point. There is no specific I, technical definition of "flare," and either way, we're really talking about relative levels of disease activity, and how suddenly (or not) the change took place.

Not everyone is always symptomatic, which I think (forgive me if I am misinterpreting), is part - maybe most - of your question, but my importation is that as time goes on, most of us are symptomatic (pain, stiffness, swelling, fatigue) to some degree most of the time, it's more a matter of "how bad" the day-in, day-out symptoms are. It seems to me that, one way or the other, most of us use flare to mean "symptoms significantly more than I have most of the time."

Hope that's helpful.

posted almost 6 years ago
A myRAteam Member said:

Well, I have to disagree with @A myRAteam Member. It is not a given that you will always have pain. I was diagnosed with RA almost 12 years ago. The first year was almost unbearable. With a wonderful rheumy who fought to get me under control and out of pain, she was able to find the right "cocktail" that worked for me and eventually got me functional. I very rarely have pain any more.

posted over 5 years ago
A myRAteam Member said:

For me I am extremely tired,hard to function. Also pain level increases which I notice more at night

posted almost 6 years ago
A myRAteam Member said:

Unfortunately it is different for everyone, as everyone has said, I also am in pain every day. But when in a flare I just can't function. Flare = intense pain for me.

posted almost 6 years ago
A myRAteam Member said:

Actually, @A myRAteam Member, I think that's a pretty succinct way to describe my approach too, though I think you might be doing yourself a disservice by waiting until the tears can't be held back before declaring it a "situation" (I.e. Flare). Very, very....very hard when all you wan to do is keep it from distracting from your family's life. If I had to choose a single "most-hated-thing" about having RA it's that I can't always protect my family from its effects on me, much less hide it from those who know me best.

It's not the only thing I hate about it, of course, but the spillover into the lives of my loved ones is definitely the top of the list for me.

That said, I bet they know you're suffering to an usual degree before you reach the tear stage and just can't hold it in anymore. Any chance you'd benefit from declaring yourself "in rough shape" before you reach that point, so you can lay down, or take it easier, or reschedule, or off-load onto someone else in the family?

It's not a rhetorical question. Obviously, lots of us struggle with the problem of loved ones "not getting it."

My ex wife (it's been a couple of years) spent most of the years of my having RA really angry about it, and lacking anyone else to blame for it, eventually settled on just being angry at me for it. Marriage and Dicorce are both complicated states, but while still married, I used to force myself to keep going until I was just about half dead before admitting that I had reached the limits of my ability to keep functioning through a flare. Admitting to the flare meant suffering twice as much: from the flare itself AND from her anger at resentment that I was flaring. The problem of wanting to keep it hidden from my family hasn't gone away since e divorce. I have an 8 year-old son who lives with me half of each week, so it's not always possible to hide it from him. For us (him and me) it works better when I let him know if I'm flaring (badly). Keeps him from having to guess what he is areas perceiving (kids always "know"...they may not always know what they know,mouth they know that something is wrong). For us...for him...it just works better if he doesn't have to guess about what's going on. I keep it simple with him and certainly keep it out of his life as much as possible, but when it's bad enough that I can't keep it off my face, it's easier for me to figure out how to help him with it than if I were to try (and I would fail - I know this from experience) and pretend nothing was going on.

Anyway...I recognize this as a major digression from the original question, but I hate to think of you having hold it in until it burst out of you. Clearly, you are a strong and caring person for approaching it that way, but I hope you find an easier way to take care of yourself. I hope the people in your life can be there for you without requiring you to hold it in and keep it to yourself so long.

posted almost 6 years ago
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