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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11 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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  5. Hi there! I have only just come across your blog in the last 2 days and have been devouring it at speed! I am (hopefully) going to be applying to med school next year and have been reading everything I can get my hands on about med school in SA. I cannot wait to follow my dream and finally become a medical doctor (although I have gone a very long way around to getting there!)

    I know this post is old, but I would like to share my story with you. I am a qualified Chiropractor in private practice and have a patient with fibromyalgia who was referred to me by her GP. She was in constant pain and had gotten to the point where steroid injections were no longer helping her and she was desperate for help. Both myself and the patient were sceptical about what I could do for her, but the GP didn’t know what else to do and thought trying something radically different might help (Even when I pointed out to him that current evidence based guidelines said that Chiropractic treatment would only aggravate the condition). At the first appointment, I made a pact with my patient, I promised that I would not do anything to hurt her unnecessarily but explained that some of the soft tissue and adjustment techniques that I was going to use would be slightly uncomfortable for her and that when she told me things were too sore I would stop treatment. It took a while for her to trust me as she had had other doctors tell her that she was making it up and it was all in her head, but when we started working as a team I was amazed with her progress. Some days she was too sore for a full treatment so we spend a lot of time talking about how her condition was affecting her life and how it made her scared to do things because of the pain. In a few months of treatment and lots of talking, she was off her pain meds completely and we started her on a very basic exercise program which she loved! She still had her bad days but said that she was able to cope much better when she did have them and loved that I had given her some pain relief strategies that didn’t involve taking pills. When she emmigrated a few months ago, she stood in my waiting room in tears because she didn’t know how she was going to cope without the support I had given her. It’s cases like this that make me love the health sciences because sometimes it’s less about the medicine and more about the supportive role that health care workers play. I certainly didn’t do anything miraculous for this patient, I essentially helped her by teaching her to manage her condition in a very individualised way, some things worked and others didn’t. Also, the support she got from her GP was fantastic and how he was willing to go out of his way to find a treatment for her that finally helped was something quite special, when you take into account that there is still a lot of mistrust between our professions.

    It makes me really sad when I hear stories like your mom’s, where it takes years for someone to actually listen to a patient and take the time to get to the bottom of their problem. I hope your mom has found a pain control strategy that works for her… and if not, maybe it might be worthwhile investigating some complimentary and alternative methods?

    Thank you for your blog and for chosing to make your experiences public to inspire others. I cannot wait to join you in this exciting career path and all the best of luck for the rest of your studies!

    • I loved hearing from you – thank you! I’m so happy to see people who are as passionate as you are.
      My mom’s pain is more manageable these days. She had a dietitian suggest certain food groups and a physio and chiropractor took her for a few sessions and also organised for her to be taught easy exercises. She’s managing her fitness and weight which also helps. But by far the thing that seems to have helped her most is what you have mentioned: practitioners that are kind and teach her how to handle Fibro. Thank you for what you do, and for what you will do as a great doctor one day. And thank you for stopping by, I so appreciated it. Best of luck to you!

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