Missing My Body’s Signals

or … Why Patient Awareness is Vital to Improving Autoimmune Arthritis Diagnosis

I thought I was a pretty aware patient. I’m a massage therapist, holistic health coach, and a yogi. I know bodies, and thought I especially knew my own pretty well. But looking back, I missed some signals.

It’s been 14 1/2 months since I was officially diagnosed with Rheumatoid Arthritis. I’ve been thinking about that diagnosis process lately, because until about a month ago I thought I was one of the lucky ones. My diagnosis process wasn’t long. It wasn’t fraught with speculation about various diseases. None of my doctors ignored my requests or told me that my concerns were in my head. So I thought that I had been lucky enough to have been diagnosed in an early onset stage.

Now that all may in fact be true … but lately I’ve realized that my RA symptoms started long before I even noticed them. Why did I realize this? Because it was this fall (about a year after official diagnosis) that I really started to feel like “myself” again. I realize looking back that three changes happened in my body that I discounted.

1. My entire body temperature felt like it raised about 5 degrees. Instead of always being freezing, I began to be warm or even hot most of the time. I attributed it to many things, but never thought about it being a possible symptom of systemic inflammation.

2. My ring sizes increased half a size at a time when I had lost about 10 pounds. Again, this would have been a warning sign but I attributed it to things other than inflammation. There was also no obvious joint swelling at this time.

3. I began to struggle with constant low-level fatigue, sometimes increasing to temporary exhaustion. I guess my sense of logic kept me focused on the many possible reasons (I had a long list) why I might be over-tired. I never ever considered that I had a disease. The fatigue crept up on my slowly, and was building during a time when I was indeed burning the candle at every possible end. So if you were working full time, going to school part-time, starting a new business, leaving your full time job and dealing with the illness and death of a loved one … wouldn’t you just figure you were tired because of all that? I did.

All three of this things have resolved for me in the last two months. I believe this is due to medications, as well as lifestyle and nutrition changes. When do I last remember not having these symptoms? 2002. OMG - that’s almost ten years ago!

Does this mean I’ve had RA to some degree for this entire time? And what if I had gone to my physician with any or all of these symptoms and asked for help? Sad to say, but I’m pretty sure she would have patted me on my head and written me an anti-depressant prescription. My family even asked me to get some anti-anxiety or anti-depressant meds but I resisted. (Been there, done that. It was helpful believe me!) Somewhere deep inside I knew I wasn’t depressed … it was physical. But even so, I waited until my joints were visibly swollen to ask for help with medical diagnosis.

So here’s my new crusade … when people tell me they are tired all the time, I remind them that it’s not normal to be exhausted. Especially if it goes on for a long time and they are generally taking care of themselves. When people express their frustration at pain, I remind them that it’s not normal to be in chronic pain.

We can all do a lot of things to take care of ourselves – exercise, eat nutritiously, sleep well, hydrate, etc. But when all those things aren’t enough it’s up to us to ask for help! There’s no way to start working towards a diagnosis without first realizing we need to ask for help.

**This blog post is part of a larger Blog Carnival organized by Rheumatoid Arthritis Warrior, Kelly Young. Please visit the other posts as well … this carnival’s topic is “How Can Diagnosis Be Improved?”**

2 Comments

  1. Chelsea
    Jan 8, 2011

    Ah, and therein lies the problem. With folks so much on the
    go, not taking care of themselves well enough or getting enough
    sleep and trying to do it all, and the docs realize that easier
    than anything else – then no wonder most of us don’t get diagnosed
    quick enough. Neither docs nor patients recognize it fast enough,
    and probably never will with the way society is these days. The
    mantra of diagnosing it early enough will stop some of the damage
    has been stated in the texts for nearly 150 years already. At least
    we have some stronger drugs though! And yes, it has been shown that
    there are changes that do occur YEARS before obvious clinical signs
    of RA ever show up.

  2. Kelly Young
    Jan 11, 2011

    Barbara, Thank you for participating in the carnival. Your
    points are good additions to the list to anyone trying to gain a
    picture of early RA.

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  1. Rheumatology Blog Carnival #2: How Can Diagnosis Be Improved? | Don't miss this! | Rheumatoid Arthritis Warrior - [...] of This Luscious RA wrote Missing My Body’s Signals. Looking back for clues before diagnosis, Barbara recalls subtle signs …

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