By Celeste Cooper
Those of us who live with fibromyalgia (FM) have experienced a battery of tests, often only to be told they are negative. Because of this, we may dismiss new symptoms as more of the same. But, could our complacency prevent us from sharing important information?
When Knowing Isn’t Enough
A light bulb is flickering, but we ignore it. That is, we ignore it until it burns out. Then we are left wandering around in the dark, stubbing our toe, and reprimanding ourselves for not taking action sooner. Do we deny the inevitable when our body is trying to warn us? Do we:
- Minimize the effect of your symptoms?
- Refuse to acknowledge something could be wrong?
- Rationalize reasons to delay treatment?
Denial is currency. For instance, it can provide us time needed to process information, allowing us to minimize stress until we can take a rational approach. But when we ignore our symptoms for too long, denial loses its currency. The light bulb goes out, and we are left with a source of great anguish and urgency.
So what is the best approach to denial?
- Consider how frequently the light bulb flickers, to what extent, and for how long.
- Weigh the consequences of not responding.
We know acceptance is important to moving out of a stuck position. But acceptance is not the same as complacency, so how do we prevent complacency from transitioning to urgency?
Symptoms as Indicators
Consider this example. You know your friend has FM, which in her case is accompanied by a condition that causes a sudden drop in blood pressure, called neurally mediated hypotension. You know she has periodic migraines too. Suddenly, she passes out, and you lurch into action. You try to arouse her. You want to know she will be okay.
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What you don’t know is that for the past two weeks, she has had a different kind of headache and intermittent facial drooping. If you had known, you would have encouraged her to get help immediately, because you know it could indicate something very serious. You understand your friend has been in denial. This is why acknowledging new or worsening symptoms isn’t enough. We must relate them.
Relating Symptoms to Our Healthcare Provider
We now know from the example that a clear history is imperative. Following are questions to ask yourself about new or worsening symptoms.
- When did it start?
- How long does it last?
- Does it come and go, or is it constant?
- Where is it? Is it localized or diffuse?
- How intense is it (mild, moderate, or severe)?
- Is the intensity constant or in waves?
- Is it worse at certain times of day?
- Can you relate it to something you did, such as activity, eating, or sleeping?
- Describe it using words familiar to you. What is its character?
- Are other usual symptoms affected, such as pain, weakness, fatigue, or sleep?
- Are there things you do that make it better or worse?
- Are there any relatable events, such as recent travel or exposure to toxins, bacteria, viruses, insects, altitude, different foods, water, etc.?
- Are there changes in your skin, breasts, scalp, mouth, vagina, scrotum, nail beds, etc.? Include color, texture, and density.
- Are there any unusual lesions, swelling, itching, bleeding, odors, or excretions?
- Have you had any vision changes, new type of headache, twitches, etc?
- Have you had any changes related to pelvic organs, like reproductive organs or bladder?
- Have you had an unexplained change in appetite or weight, a change in your stool, or other digestive problems, such as difficulty swallowing, flatulence, unusual taste, heartburn, etc.?
- Have bowel and bladder habits changed?
- Are your symptoms persistent? Can you admit to yourself that they are not going away?
Note: Under the right circumstances, taking pictures may be helpful, not only for your provider, but for you too. Photographs can chronicle your general appearance, appearance of an affected area, and things like how long it takes a wound to heal.
Because FM can be accompanied by some unusual symptoms, please follow the American Heart Association guidelines for heart attack and stroke and seek immediate medical attention if:
- You have new or different chest pain. Do not dismiss it as being the chest wall tenderness that is often reported in FM.
- You experience sudden visual changes, facial drooping, difficulty speaking, or one-sided weakness.
Pay Attention to Detail
While the above are examples, they are not all inclusive. Hopefully this helps you understand what, when, why, and how we should pay attention to the many ways our body shares important information. Anything different is important. Don’t let denial lead to complacency when your light bulb is flickering. Our healthcare providers need the details so they can collect the necessary information for making the right diagnosis.
~ Jean-Martin Charcot