The Importance of Clarity: A Story

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Today is fibromyalgia awareness day. I find it quite apt that this happens the day before Mother’s Day.

For as long as I can remember, my mom has suffered from pain. She has always been particularly sensitive to noise, bright lights and abrupt touch. It was only when we were little and clumsy that it didn’t seem to bother her. An overriding maternal instinct I suppose.

I inherited my migraines from Mom. I remember trying to occupy my little sister and baby brother when I was eight and nine, because Mom was in pain and I wanted her to rest and feel better.

I remember waking up in the dark hours of the morning with all the lights on, finding that our help had been asked to babysit us in an emergency, so that Mom could go to the ER for pain management. She had severe backaches.

I remember there were nights when Mom went to the ER twice, in tears. Returning with no more than a diclofenac injection.

Mom’s pain is one of the reasons I have trust issues with doctors. For more than a decade, while Mom had exhausting and debilitating pain, she was not referred for a single X-ray. Her hands, swollen with osteoarthritis, were not looked at. She was told, “Ma’am, it could be so many things.”

As if that was a reason not to do a pain workup.

When I came to med school I became more and more convinced that Mom needed a better doctor. Little by little I learned new things: backache is bad. Night pain is bad. Patients deserve a diagnosis.

Last year we learned about fibromyalgia. And I knew, this was it.

In early January, while I was home for the holidays, Mom returned from shopping in tears. She was in pain again. I took her to the new doctors’ complex in town and made an appointment with the youngest doctor on duty.

She was from a school I trust. And I trust the young doctors: they are all too aware of their shortcomings and afraid of litigation. They will rather perform too many investigations than too few. And in this case, it was what Mom needed.

She struggled to get a history because Mom was crying. I don’t know how much of it was pain and how much of it was relief at meeting a doctor who didn’t tell her it was all in her head.

It’s five months later and Mom has a diagnosis. It’s not a diagnosis many people believe exists. There are some doctors who believe that FM doesn’t exist. But I look at my mom – an exceptionally strong woman who gave birth without pain medication and refuses to go for stitches when injured – and I simply can’t agree with them.

Mom is on medication now. It mostly keeps her pain under control. She is part of a Fibro trial, where she is receiving remarkable help.

Mom is emotionally better too. She has a physician that cares about more than just her blood pressure. Oh, and her OA is being managed too.

I want to be like that. I know there are many contentious diagnoses out there, but I want not to be blind to that which I do not necessarily understand.

Here’s to the exceptional people struggling with pain every day. I salute you.

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9 thoughts on “The Importance of Clarity: A Story

  1. I can fully understand what your mother and you have gone through. I have Severe Fibromyalgia that caused me to have to leave my career in 2007. I continue to try to manage my pain and fatigue along with my doctors to have a better life.

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  3. My sister has it, but they never diagnosed it. My grandmother has it too, so I know how it is to have people around you who are in constant pain. What touches me the most, is the fact that my sister can cope with the pain, but not with the consequences of it. She could not attend gym at primary school. She can’t walk for hours during shopping. When she excercised on, for example, the WII (doing things like Just dance) she feels broken days after that.. And when she cries, she often tells that it’s because of the things she can’t do. It breaks my heart. She is eightteen years now, my little big sister, and I wish I could take the pain away for her sometimes, so she could be just a teenager.

    But on the other hand. She also has these tempers. Days in which she is so unkind. And I try to understand it, but it can be hard too. My grumpy little thing :D

    I wish there was more attention for fibromyalgia and I hope that the new diagnosis will help your mother with her pain.

    • Thanks so much for sharing your family’s story. I heard recently that one of my little sister’s friends has also been diagnosed with fibro, and that she had to quit hockey – her favourite sport. That is sad. My mom’s currently participating in a study about the effects of mild exercise on the pain and fatigue of fibro. I’ll be sure to check the results when they are out. It seems that the general feeling is that some very mild exercise, with an eventual increase, could be beneficial.

      My mom also struggled – and sometimes still struggles – with bad moods. It is difficult for a family to remain understanding, but we have learned. Support makes her happiest.

      Best wishes for you and your sister!

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