Fibromyalgia Loves to Mess With You

When you’re feeling a symptom that’s new and different… How do you know when there’s something really wrong? How do you know when it’s time to see your doctor?

The problem of Fibromyalgia is that you exist in a state of constant sensory overload — in an internal sense. In other words, your own body is forever giving off loud signals. Often it can be so deafening that it drowns out external stimuli.

(Incidentally, if you live with or know someone that has Fibromyalgia, please go easy on us. We don’t mean to outright ignore you, be distant, behave in a socially awkward way, or become completely self-absorbed at times; sometimes the “noise” our bodies gives off just makes it impossible for any other signals to get through.)

It’s very common, in my experience, to feel new pains, symptoms, or sensations on a frequent basis. The issue that arises from this is that it can be hard to tell when to take one of those new sensations seriously. (Not to mention that you might find yourself wondering if you’re losing your mind.)

Example: Right now, I have a strange pain on the top of my foot. It appeared yesterday out of the blue, and it’s making walking a little harder. It feels like a couple of bones are grinding against each other. Did I injure it in martial arts class? Did I hit it on something? Did I sit weird and affect a nerve somewhere? Or is it simply a random cramp that will go away? I have no clue. Should I call the podiatrist? Or wait and see what happens?

I usually opt for the second route, usually to the displeasure of those around me. The thing is, if I went to the doctor every time there’s a weird new pain or symptom, I’d be there almost every day. Because with Fibromyalgia (and Lupus, and POTS), there’s always something.

The really aggravating “somethings” are the ones that get worse… and then get better, entirely on their own. Which usually happens after you’ve had something wrong for a while, gone to the doctor, had them run tests only to find nothing, and then a few days later the whole thing suddenly, inexplicably self-corrects. You can practically feel the people around you thinking about how much of a hypochondriac you are — because you’re thinking it about yourself!

I can only speak for myself, but it’s late afternoon or evening before I can adequately assess how I’m feeling on a given day. Maybe my shoulder is more sore than usual today because of something I did yesterday. Maybe it’s indicative of a flare or another bigger problem coming on. Or maybe I just slept on it in an awkward way. I can’t say one way or another until I’ve had time to live with it a while, see how it reacts to my day-to-day routine, determine if it’s improving or getting worse… And by then, it’s too late in the day to see a doctor, anyway. Plus, many days I wake up with brainfog that doesn’t clear until at least mid-afternoon — if it clears at all. How am I supposed to know how I’m feeling if I can’t even think straight?

So. How do you know when to see a doctor? I really don’t know. If you’ve read my book, you know that I’m “Mr. Listen-To-Your-Body,” so you’d think I’d have this process all figured out. Something like, “If it feels this bad, that’s worthy of a doctor’s visit. If it’s less so, then wait it out.”

But I don’t. I’ve got nothing. I’ve erred on both sides of this equation more than once. The best advice I can offer is to (say it with me) listen to your body and do the best you can with what you’ve got.

Fibromyalgia or not… Do you have any history with trying to know when it’s “bad enough” vs. when it’s a bizarre fluke that will go away on its own? Please share your experiences with this, I’d love to hear them.

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3 Comments

  1. Deena Peterson
    October 24, 2017

    Even though I’ve had Fibromyalgia for almost 2 decades, I convince myself I’m fine and it’s all in my head. But it’s very real.
    I was having surgery on my back about 10 years ago, and was just chatting with the nurse when she said “Oh, you have IBS!” I had no idea what she was talking about.

    Now I know it very well. And when my fingers and toes were turning purple I mentioned it to my doctor as a joke, and I was diagnosed with Sjogren’s Syndrome.

    Then my back issues got a name, and I know why I itch when I perspire. And when I get tiny white bumps a flare is coming. So, I’m a huge believer in listening to your own body.

    Reply
  2. Damian Sawyer
    October 25, 2017

    Greetings from Wales!

    I have Asperger Syndrome (finally diagnosed last year at the age of 44) and I gradually developed fibromyalgia after suffering head trauma back in 2001. I react adversely to medication, usually exhibiting rare and even more debilitating symptoms, so I’m not taking any medication now. I’ve had to just learn to live with the constant pain, fatigue etc.

    When I get new symptoms the usual response from my doctor is, “Well, you’ve got fibromyalgia.” When I suffer increased, intense pain they suggest exercise – which would give me even more pain. If I’m even more exhausted than usual they tell me not to sleep during the day – which leaves me narcoleptic. If I’m struggling to concentrate, to the point where I can’t read or count, they put it down to the fibromyalgia. That does seem to be the case but they tell me there is no help available with this.

    I do listen to my body to know when things are severe enough to go to the doctor, but even when they are I usually don’t bother getting an appointment. I can’t cope with the stress and physical exhaustion involved, only to have my symptoms arbitrarily dismissed.

    Reply
    1. Robin
      October 25, 2017

      Hi Damian. And welcome!

      This sounds oh-so-familiar. The uncertainty factor is enough to make you question your sanity, and when coupled with doctors who are unhelpful or simply don’t know what to do for you… It compounds things exponentially.

      I’m so sorry you’re going through this. If there’s anything a Fibro guy across the pond can do to help, please don’t hesitate to ask. Just don’t give up, ok? There is *always* hope.

      Reply

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