Fibromyalgia and Setting Limits/Boundaries

“Sometimes we stare so long at a door that is closing, that we see too late the one that is open”, Alexander Graham Bell

In so many ways we are fortunate to have access to valuable  information which then allows us to take more control over our own lives. I can only speculate about what it must have been like for those who suffered from fibromyalgia for decades without a diagnosis, or recognizing what the causes were, or how to work with chronic pain and fatigue. Even worse would have been the cost of trying to find someone who could alleviate the worry. It would have been a time when communication with others who suffered from the same condition (that is, those of us with a highly sensitive personality trait, causing our fibromyalgia) would not have been as accessible.

Before medicare in Canada it is likely that people could not afford to go from doctor to doctor hoping for a name for this invisible dis-ease. It must be dreadful in those countries whose citizens are not insured and cannot afford visits to physicians. Still, in every country in the world, not just those who do not have access to health care for all , many of us with such conditions as fibromyalgia experience health professionals who are dubious about the very existence of this dis-ease. So, the question arises: what do we do when we encounter those who do not believe there is such a syndrome as that which we live with day after day? How do we deal with the constant demands of others who do not understand that while we look healthy we are not able ¬†to participate in the usual activities that others enjoy? It is only ourselves who can take control over our own situation with those doubters. It isn’t easy.

Summer time when there are crowds at concerts, museums, or on beaches where the noise level can be high becomes especially problematic. It can be overwhelming to even attend family barbecues/reunions when there is perhaps music and laughter and our nervous systems then go into overdrive. Children, young nieces and nephews, grandchildren whom we love, are by their very nature easy to arouse and excite us.

Sometimes it seems like we have to be in a cocoon just to find peace, while at the same time feeling happy and depressed simultaneously at gatherings which should give us joy. The difficulty is how to set limits on those occasions which over- stimulate us without offending anyone or embarrassing ourselves. Finding a physical space where we can escape for a few minutes and calm ourselves is not often easy, but is so very important to our well being. Those of us who recognize that the few moments of quiet are necessary to avoid flare-ups must become expert in finding that private space. It’s all about setting limits to what we can tolerate ,which at times seems impossible. It is then that we must bring on our strategies, such as taking time to deep breathe, finding a place where we can do a minute meditation, and avoiding as much as possible those who are particularly excitable and cause us to go into overdrive. Practicing these schemes of relaxation can open doors for us that we once thought too difficult to enjoy.

The summer is almost over. Time to gear up for the cool autumn! Relax, breathe, take time to open up a new way of being in the world, think positive thoughts, and move that body as much as possible.

3 thoughts on “Fibromyalgia and Setting Limits/Boundaries

  1. Regina

    Hi Barbara,

    I just wanted to say how happy I am to have stumbled onto your site today. Your entries have been more helpful to me in understanding fibromyalgia than talking with a number of doctors, almost all of whom have seemed to be completely clueless about this condition (some even told me it was all in my head). I’m only in my early 20’s and have recently been diagnosed with fibro (by a rheumatologist with a specialty in fibro, but since fibro seems to be a poorly understood condition, even he hasn’t been able to give me advice other than getting more exercise and sleep, which I’ve been trying to do, but it’s easier said than done when you’re a busy student!). It’s been very frustrating for me already, to say the least, since I used to be able to manage a busy lifestyle (classes, extracurriculars, internship, etc.) with relative ease, but over the past couple of years that’s gotten to be much more difficult as I feel that my symptoms have worsened. I’m sensing that some people around me are starting to wonder if I’m borderline anti-social or lazy, and I feel like I can’t go on saying that “I’m sick” or “I’m too tired/in pain” as an excuse to miss someone’s party or not be able to attend class, even if that’s truly how I’m feeling. And I feel like I can’t begin to explain my condition to others around me because I don’t think they would understand why a young, healthy-looking person like me would suffer from such a condition, one they’ve probably never heard of. So I’ve come to the realization that it’s entirely up to me to take back control of my life and learn to manage my fibro in whatever way possible, even if that means devoting much of my time to gathering information online and trying out different therapies. And your blog is helping me do that, so thank you.

    Just two more things I’d like to mention: first, I think you’re spot on when you say that people with fibro tend to be highly sensitive people, and I wonder if many of us are perfectionists too and very meticulous about details. I’m like my dad and my aunt (his older sister) in that we’re all hyper-sensitive people and perfectionists. Though they were never diagnosed w/ fibro because such a condition was never heard of when they were younger, I’m thinking that both of them probably have the condition too since they exhibit the same symptoms that I do (so fibro probably runs in my family too, unfortunately). Second, I thought the link you posted to an article stating that people with fibro experience faster brain aging and greater loss of gray matter was particularly disturbing–personally the most alarming thing I’ve read so far about fibro, since my mental abilities have been the one thing I’ve been able to pride myself on to date. If this is true, I seriously hope there’ll be more research done to try to find ways to combat this brain aging, but in the meantime I’ll be trying different methods to cope w/ my fibro so that hopefully my brain won’t age as fast. Any suggestions you may have or useful articles you can post about slowing down the process of brain aging would be greatly appreciated!

    Thank you again!

    Best,
    Regina

  2. Jai

    Hello Regina:) I just finished reading your post and felt drawn to add in my two cents worth and hope that it benefits you in some way or another.

    First I want to say that I really feel for you especially at your age to have been diagnosed with Fibromyalgia. That seems way too young to me. I’m 47, soon to be 48, and I received my official diagnosis nearly a year after presenting with problems and being redirect to various different doctors for assessment, My first symptoms presented in March 04, (immediately following gall-bladder surgery, and diagnosis wasn’t achieved until late February of 05. It was grueling to say the least.

    A couple of suggestions that I’d like to throw out for your consideration are
    1. Get clear clarification from your doctor as to whether your diagnosis is considered to be a “Primary Diagnosis” or a “Secondary Diagnosis”. This will put you in a much better position to strategize where you go from here. If it is primary, then you have your answer. However if your Fibro is considered a secondary diagnoisis, then this means that there is something else at the root of the health problems that has gone unidentified to date and would require further investigation and testing. This is what occurred in my set of circumstances. My diagnosis was “secondary”, and the “primary was not known.

    2. Have you had a spinal tap test done? The varying symptoms of Fibro and that of MS (Mulitple Sclerosi) tend to overlap in definition and often times one could possibly be mis-read for the other. To make a determination with MS, a spinal tap test is required. It’s very similar to how a pregnant woman is given an epidural during childbirth. They stick a needle in your lower spine and draw out spinal fluid which is then tested.

    3, You may want to read up on Asperger’s Syndrom & Fibromyalgia. There have been some studies in this area that are quite compelling to view and become aware of. In my case, the findings were uncanny!

    4.At this point, do you feel that your Fibro is preventing your from performing your job? The work place is required by law to make accommodations for you in what ever ways possible. Be it ergonomics or the likes.

    I’ll be happy to discuss these things with you further if they apply, or share my own shorty –whatever seems appropriate. I know exactly how tough this can be and am here to support you in any way I can.

    Stay focused and optimistic.

    Jai

  3. Barbara Keddy Post author

    Hi Regina and Jai:
    It is true that fibromyalgia is now known to be caused by a hyperaroused nervous system and in highly sensitive persons. It can occur over a lifetime of overstimulation of the nervous system wherein the brain becomes familiar with these pathways and can be easily enticed to re-inact the same stories we have been telling ourselves over and over. Oftentimes fibro occurs spontaneously after an accident or some kind of trauma like surgery. Whether it is one or the other is, in my view, irrelevant as we all suffer from the various ‘symptoms’. The issue is how can we train the brain to change the messages it is receiving. Medication, while helpful in some instances and can help with pain, is only a bandaid and masks the real issues. Read some of my other blogs, particularly the ones with the books from the neuroscientists which I document. While more research on the brain will continue to tell us how we have become people with this syndrome, at this point enough is already known that we can implement in our lives. We are the only ones who can help ourselves. It isn’t easy, but we have little choice. No one else can train us!
    Best regards,
    Barbara

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