Living with fibromyalgia and heart disease

“Coping with a chronic illness is work”, Carolyn Thomas

A very new book has just been published by Carolyn Thomas: A Woman’s Guide to Living with Heart Disease, Baltimore: Johns Hopkins University Press, 2017. It is one of a kind! Finally, a book that allows the woman with heart disease or those with a family history of heart disease, to pour over it and sigh with relief as questions about the leading cause of death among women is now in print as a source of expert information. Furthermore, it is written in a style everyone can understand.

I have been following Carolyn’s blog Heart Sisters for the past four and a half years since my own heart attack. Any questions I have had about my poor little damaged heart has been answered, not by a cardiologist, but through Carolyn’s blogs. She has been my salvation these many years. We have never met face-to-face even though we live in the same country. Canada is vast. I live on the east coast, she on the west coast of this second largest country in the world. But though we live thousands of miles from one another we have become friends, sort of like the pen pals of yesteryear.

When the American women’s health collective Our Bodies Ourselves first decided many years ago to acknowledge 22 women in the world who had contributed to women’s health, we were the only two Canadians to be so honoured. Carolyn contacted me through this website of mine and a friendship was created. I was not particularly concerned about heart disease at the time but that was about to change. I did however, acknowledge that fibromyalgia and heart disease had many attributes in common. Both were chronic and while one was life threatening the other was not. One could be treated with life saving medications and treatments, while the other was not successfully managed with medications. More research on heart disease in general, (but not specifically for women) was available, while fibromyalgia was still regarded by many to be malingering, especially since it appeared to affect mainly women. However, what we shared in common was that both conditions are invisible and many of the symptoms are alike. Both seriously affect quality of life. Furthermore, in terms of the commonality of these conditions, research about women living with fibromyalgia and heart disease was sadly inadequate. But, importantly, there is a very significant difference. Heart disease is an actual disease, while fibromyalgia is a dis-ease of the central nervous system.

What has it been like for me, living with both? I seem to be constantly in a state of uncertainty. I often ask myself if this is a symptom from my heart or am I having a flare-up of fibromyalgia? Should I see my family doctor? (I don’t have a cardiologist. I was told after my labelled  ‘major’ heart attack and stent, that I was “good to go” and unless something new developed my family doctor could handle any concerns I had! I didn’t receive any advice from cardiologists or nurses in the hospital before discharge, although I was given a pamphlet about diet and exercise.) But, I don’t bother my family doctor about fibromyalgia issues as there isn’t anything she can do. I am my own expert of this dis-ease. I would however, book a visit with her if I was convinced it was a heart issue, but I am usually unsure, so I ruminate and wait it out. Many of the symptoms of the two conditions are alike. Both can cause pain and both can have debilitating fatigue, among a host of other symptoms in common. Dizziness, shortness of breath, increased anxiety and what they mean for me can be very upsetting. The dilemma has caused considerable angst these past four and a half years. Added to which my trusted family doctor of 28 years recently retired. He was a great support for me and I don’t know the new female doctor who replaced him. So, I see a physician relatively rarely.

To add more confusion to my journey through this maze, last year I had hip surgery which in hindsight seems was less that I had some degree of arthritis, but was more that the buttock muscles of that hip had torn away from the bone. Radiating pain obviously ensued. Fibromyalgia? Heart attack about to happen? My muscles are weak as with most of us with fibromyalgia. Some of us can tolerate small or moderate amounts of exercise while many cannot. On the one hand I should exercise every day but if it is too vigorous it causes an intense flare-up. The hip surgery, like all surgeries for those of us with fibromyalgia was not tolerated very well, even worse for those of us with heart disease. Walking even moderate distances is compromised. Along with aging, heart disease and fibromyalgia I am struggling with low energy. I say this with tongue in cheek however, as I have a relatively busy and happy life despite constant pain and fatigue. But, I once was a runner, then I became a walker of  somewhat long distances, now I can only walk for 10 minutes and am exhausted and in pain. This fibromyalgia pain is a devil. It moves around and I know not where it will strike at any time. Lately it has been on the top of both feet. No expert has been able to tell me why. In fact, x-rays of both feet have not revealed anything amiss. I worry because with heart disease exercise is primary, and even though I can tolerate 20 minutes on my exercise bike at least five times a week, it isn’t walking which I love, and I miss most. Fibromyalgia is the most challenging in my life. Heart disease is the most worrisome.

Ah, but wait. The times they are a changin’, as Carolyn has now presented us with excellent research, support and recognition that heart disease in women must be more seriously addressed by health professionals and, that it generally differs from men with heart disease. And now,interestingly, with Lady Gaga and Morgan Freeman, well known entertainers, coming out acknowledging they have fibromyalgia the public is more aware about this syndrome as never before. I have been approached by two self publishing companies since then asking if I wanted a rewrite of my old book on fibromyalgia. I have not been enticed to do so yet, as living with two chronic conditions sometimes feels like the burden is too much. It is indeed hard work.  As Carolyn has written on her most recent blog, writing is an exhausting undertaking and that adds to the daily struggles.

I applaud Morgan Freeman coming out with his announcement of fibromyalgia. What I discuss in these blogs is from a position of female, white, heterosexual privilege. His story is one of a person of colour and is a male perspective, albeit social class privilege. While those suffering from PTSD are predominantly male military veterans, they have not had the label of a ‘women’s‘ dis-ease. I have written that fibromyalgia is either an identical or a fraternal twin of PTSD and that these two syndromes and their labels are significant in terms of whether or not they are credible conditions. I have also written about the many research findings of the ways in which to ‘change the brain’ for those of us with highly sensitive personalities who live with fibromyalgia. Fortunately, there is more that can be done for women with heart disease that is more direct and evidence based, if only women were listened to with the same amount of attention as men.

For now this about sums up my treatise about fibromyalgia and the denigration of this chronic pain syndrome said to be a women’s ‘neurosis’. On to a heralding of this magnificent book of Carolyn’s and the questions (and answers) that are posed. Why is it that breast cancer has gained such public sympathy and financial support, while women and heart disease, the leading cause of death in women, has remained a quiet torment for those of us living with or dying from the lack of information and treatment because we are women? Answers to these and other questions are addressed in her blogs and the book. Carolyn and I are both white, privileged women who can speak up on our own behalf about our health issues. It is the disenfranchised, suffering women whose voices we must speak for as we walk this path with our own challenges. Neither of us see ourselves as victims but women who have wonderful supports from family and friends. We are not poor. We live in Canada where we have universal health care. We can afford to speak out on behalf of our sisters.  I encourage readers to check out www.myheartsisters.org and of course, the book. In the meantime I can gaze at the beginning of the lovely foliage in our Nova Scotia autumn and although I am in the winter of my life I consider myself fortunate to have met Carolyn on line and continue to be in awe of the gift she has presented to women.

 

3 comments

  1. Carolyn Thomas says:

    Oh, Barbara. What a sweet and generous and wise essay this is. Thanks so much for your kind descriptions of my book – I could not have said it better! 😉

    I’m sure I’ve mentioned this to you over the years, but I used to be surprised at the number of women living with fibromyalgia or breast cancer or MS or other serious non-cardiac diagnoses who read and comment frequently on my blog articles (given that I don’t write about non-cardiac stuff).

    But I know now that the experience of becoming a patient, of living every day thinking about, obsessing about, and having to ‘manage’ our health seems to be universally shared. You taught me that such understandable rumination is not good for our central nervous system, as I quoted in my book (on pages 96 and 158!)

    I would love your permission to re-post this essay on my Heart Sisters blog. Heart patients will instantly relate to what you’re saying.

    The diagnosis may be different, but at the end of the day we all leave the doctor’s office or hospital and spend our days trying to figure it all out.

    Thank you and take care, dear Barbara… ?

  2. Kathy says:

    I love your blog! I believe fibromyalgia is a true disease. You should check out Dr. Ginevra Liptan’s book, The fibromyalgia manual. Getting good deep sleep is really important. There is a lot that we can do to reduce our symptoms.

    Kathy

  3. Barbara Keddy
    Barbara Keddy says:

    Thanks Kathy! However, I believe just the opposite that fibromyalgia is not an actual disease but is caused by past trauma and a hyper-aroused central nervous system in a highly sensitive person. That isn’t to negate the challenges it poses for us. I have read Dr. Ginevra Lipton’s writings and although a medical physician she does appear to dabble in alternate medicine which is difficult for me given I have tried them all in the past. I rely on evidence based medicine. If fibromyalgia were a disease I would expect it to be either caused by a ‘germ’, like a virus, bacteria or other microbes, or perhpas autoimmune, etc but there isn’t any evidence that any of these are the case. There are no effective medical tests that can present evidence of a fibromyalgia ‘disease’. Ah, sigh*. If only…then we could anticipate that BigPharma might produce a miracle drug.
    I agree wholeheartedly that sleep is crucial for the central nervous system as well as moderate exercise, avoiding as much stress as possible and finding relaxing strategies that calm our hyper-aroused brains!
    I wonder what future scientists in the next several decades will come up with as they explore even more about the brain? In the meantime thanks for your interest in this site and I hope to hear from you again in spite of our differences in beliefs about a disease versus a dis-ease!
    Best wishes,
    Barbara

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