Will I ever know the difference?

Here I am 20+ years into RA and I still, quite frequently, cannot tell when I am flaring versus when a treatment, be it medication or otherwise, is no longer working.  I find this to be almost as frustrating as the chaotic nature of RA, which still remains my number one challenge when dealing with this disease.

I have been suffering, and boy do I mean suffering, with ongoing, relentless shoulder pain for the last 6 months.  I have enjoyed some brief (perhaps a few days here and there) respite from the pain but, by and large, it has been ongoing and nonstop.  So, I ask myself, is this a flare or is my medication failing?  Is it related to adjustments in my NSAID dosage or what I am doing physically? So many questions and no definitive answer!  That is what drives me crazy.

I like to search for and find answers.  Anything less is failure for me.  So this particular dilemma not only makes it challenging to handle disease wise, but also psychologically weighs on me.   I have really struggled with how best to deal with this and although I don’t have a perfect solution I think I can at least come to a place where it does not aggravate me as much as it did.

First of all, in this particular case, I have to first ask myself what are the circumstances?  Did I change ANYTHING that might account for this?  Medication, physical exertion, etc.? If the answer is yes, than that may account for it.  If the answer is no, than I may need to think about the efficacy of my current treatment plan.  For my shoulders, there WERE some changes.  I have been gradually decreasing my corticosteroid dosage (vvveeerrryyyy slowly) for over two years now.  I know that doing that can cause my joints to rebel and it takes a lot of time for them to assimilate the decrease.  On top of that, I do try to exercise as much as I can and sometimes my joints simply do not like it.  The problem is, sometimes they don’t mind at all! THAT is what makes it so challenging!

Next, I try to consider if this seems systemic, versus always the same joints.  Does that matter?  I am really not sure but for me, over these last 6 months, it has been, primarily, my shoulders.  So, what, if anything, am I doing, or can I do, to change it? I really had to consider virtually everything for a while to try to figure it out.  I did discover a few things.

First of all, I cannot carry things where my arms hang down, like heavy shopping bags. It puts far too much of a burden on those shoulder joints.  Every time I do it, like when I carry milk in shopping bags with a handle, my shoulders will ache within hours, and the pain will least for days!  So I try to carry them in my arms rather than hanging down and that seems to help.  The issue is that when they DO NOT hurt, it is so easy to forget and just grab the bags and off I go.

Secondly, fatigue and stress are absolutely influential.  If I am tired or stressed my joints react.  I have noticed that when I am on vacation, my body is so thankful and my joints so much less painful.

Third, the cues I sometimes get are very subtle but I must pay attention to them!  This past weekend, for example, I was swimming, doing laps, and my arms began to feel somewhat heavy, not painful mind you, but heavy. Rather than take that as a cue to stop, I pushed through.  Sometimes that works.  This day it did not and the pain in my shoulders is back with a vengeance.

The lesson here is we MUST be vigilantly tuned into the signals we get.  I truly think that many times, not all, I could avoid, at least, the severity of a joint flare.

In terms of figuring out if this is a flare or something more, I have to look at my overall “joint map”.  Are other joints joining the party or is it largely limited to one or two joints?  For me, this often is what I use to determine the answer.  In addition, in consultation with my Rheumatologist, we explore the possibility. Blood work is done as well as a clinical exam, we discuss the nuances of the pain as well as treatment options.  Are there erosions or despite the pain are the joints still ok? Following all of that, we decide how best to proceed.   By taking these steps I feel more confident in the choice we make.  And if it gets worse, or there is no relief, we revisit the options.

In the end, this question remains one that may, in fact, have no clear answer.  But regardless, we need to address how best to deal with the joint pain to make our quality of life better and ease our minds.  It may not be perfect but it does work.

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