Living with both fibromyalgia and heart disease

5 Nov
by Carolyn Thomas     @HeartSisters

     Dr. Barbara Keddy

In her latest blog post, Dr. Barbara Keddy quotes my new book in this statement: Coping with a chronic illness is work” – an understatement coming from somebody like her.  She is a Professor Emerita at Dalhousie University in Halifax, a retired teacher of nurses, a respected author and blogger – but more importantly to this discussion, she has spent five decades living with fibromyalgia, and more recently, almost five years as a heart attack survivor. With her kind permission, I’m sharing her blog post here: part very personal essay, and part book review:

“A very new book has just been written by Carolyn Thomas: A Woman’s Guide to Living with Heart Disease, published by Johns Hopkins University Press (Baltimore, 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 pore over a source of expert information and sigh with relief as questions are answered about the leading cause of death among women. 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 have been answered, not by a cardiologist, but through Carolyn’s blog. 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 my website, 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, although one was life-threatening while 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. And, in terms of the commonality of these conditions, research about women living with either 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 were 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 because I had some degree of arthritis, but 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 well known entertainers Lady Gaga and Morgan Freeman coming out acknowledging that they too have fibromyalgia, the public is more aware about this syndrome as never before. I have been approached by two publishing companies since then asking if I wanted to re-write of my 2007 book, Women and Fibromyalgia: Living with an Invisible Dis-ease. But 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 Post-Traumatic Stress Disorder (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 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 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 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 Heart Sisters blog and in 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 support from family and friends. We are not poor. We live in Canada where we have universal healthcare. We can afford to speak out on behalf of our sisters

“I encourage readers to check out Carolyn’s Heart Sisters blog and of course, the book. In the meantime, I can gaze at 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 online and continue to be in awe of the gift she has presented to women.”

Thank you so much for writing this, Dr. Barbara Keddy!  Readers, please visit her blog, Women and Fibromyalgia, for comprehensive information about living with what she calls this “dis-ease”. You can order her book of the same name here.

21 Responses to “Living with both fibromyalgia and heart disease”

  1. Patti L-L November 7, 2017 at 8:41 am #

    Hi Carolyn,

    Thank you again for your wonderful email/blogs — always informative! I learn so much.

    Hugs,
    Patti

    Liked by 1 person

  2. Prunie22 November 6, 2017 at 2:00 pm #

    Great article. I too agree that breast cancer gets more focus than women with heart disease, which baffles me. Women and heart disease symptoms really need a whole lot of research and serious attention.

    Liked by 1 person

    • Carolyn Thomas November 6, 2017 at 2:45 pm #

      You are so right, Prunie. Part of the issue remains that women do volunteer to participate in the so-called ‘bikini’ research areas (breast and reproductive organs) but are generally less likely to participate in cardiac research compared to our male counterparts!

      Like

  3. Janet B. November 5, 2017 at 5:56 pm #

    Dr Keddy, I think I have met my twin. I have heart disease (stent in the LAD 95% blockage) and severe fibro. I thought I was the only one trying to figure out if it is the heart or the fibro. And at the end of the day are they connected? Maybe so with the PTSD at the root.

    I am also a highly sensitive person. (Thank you Dr Elaine Aaron for her book.) I am also a caregiver for my husband with pretty bad dementia and my mother before him.

    Sometimes I feel so….pathetic and then I read an article like yours or Carolyn’s and I think I am pretty amazing. I never sit for long although I rest often when doing things. I hurt sooo much all of the time and just to know I am not alone is a godsend. I have theories about all of this and wish I could contribute to others in the future so maybe they don’t feel so alone and maybe find a way to ease their pain.

    Liked by 2 people

    • Carolyn Thomas November 6, 2017 at 5:50 am #

      I too think you are pretty amazing, Janet! To be both a patient AND a caregiver for your loved ones is really something. Please visit Dr. Keddy’s blog Women and Fibromyalgia if you haven’t discovered it already – I have a feeling that you both share some of the same “theories” on your shared diagnoses… Thanks for commenting…

      Liked by 1 person

    • Barbara Keddy November 6, 2017 at 2:20 pm #

      Hello Janet: I based my book upon the work of Elaine Aaron and the highly sensitive person. I have never digressed from that framework in spite of the fact that my book is no longer new. I believe it is still relevant and I know so much more now about this dis-ease of the central nervous system!

      I always wanted a twin so welcome to my family. We are indeed heart sisters.
      Barbara

      Liked by 2 people

      • Janet B. November 6, 2017 at 6:10 pm #

        Thank you Barbara. I ordered your book and Carolyn’s yesterday, and I am excited to read them. I see the HSP traits in my daughter and most especially my 6 year old granddaughter. Anything I can learn to make their path easier is a gift.

        Thank You and Carolyn and Elaine for all of your work – it has changed my life .

        Like

    • Jana d. November 7, 2017 at 11:43 pm #

      Complete understanding here. Both, plus a host of other challenges.

      Liked by 1 person

  4. lcriding November 5, 2017 at 5:12 pm #

    Thank you for the info on fibromyalgia. My 90 y.o. mother was diagnosed with this a few years ago but wasn’t given any information on how to deal with it. She is now in Aged Care and recently mentioned over the phone (we live in different countries) some odd health issues. It sounds very much like symptoms of fibromyalgia so I’ll get her to mention them to her doctor (which she was reluctant to do).

    Liked by 2 people

    • Carolyn Thomas November 6, 2017 at 5:46 am #

      Breaks my heart – a 90 year old woman in a care home who is reluctant to mention distressing symptoms to her doctor…. Hope she both talks about and receives some relief for her symptoms.

      Liked by 1 person

  5. Kathy Coletti November 5, 2017 at 1:30 pm #

    After a serious auto accident in 1990 with pain that wouldn’t go away, I was finally diagnosed with fibromyalgia. I still suffer from it today and take lots of meds and get trigger point injections every other month.

    In 1995 I had a massive coronary from a SCAD in my left main artery. I had another heart attack before I was properly diagnosed two weeks later and received a quadruple bypass. I had my third heart attack in 2015, twenty years after the first. I had a smaller heart attack, my fourth, earlier this month.

    It is so difficult to know when I have pain in my chest, neck, or upper back if it’s fibro or cardio related. I am not overweight and have little atherosclerosis. I have a hard time trying to establish a routine with exercise that doesn’t get interrupted by extreme pain or fatigue. My stamina isn’t what it was even a few years ago. I thought I was alone in this dual battle, so thank you, thank you for sharing your challenges with us!!

    Liked by 2 people

    • Carolyn Thomas November 5, 2017 at 3:56 pm #

      Thanks so much for weighing in here, Kathy. As Dr. Barbara Keddy explained as well, it can indeed be tough to tease out the source of symptoms when you live with such significant diagnoses. Fibro or heart? You are definitely not alone in this dual battle. Best of luck to you…

      Liked by 1 person

    • Barbara Keddy November 6, 2017 at 2:32 pm #

      Oh Kathy: I can relate to your dilemma, particularly since Costochondritis is so common among those of us with fibromyalgia. This inflammation of the cartilage in the rib case mimics heart attack and angina symptoms perfectly. So we are often in a quandary. Then too there is the increased anxiety from both conditions, dizziness, loss of energy, extreme fatigue. We have to become experts of our own lives and sometimes it feels like a crap shoot! It is so amazing that we aren’t spending all our time in the ER! I think we are brilliant diagnosticians!

      I had a great 30 minute pool walk this morning. But, yikes! I will probably pay for it tomorrow or the next day. It is indeed a vicious cycle.
      Best wishes,
      Barbara

      Liked by 2 people

  6. Jenn November 5, 2017 at 1:21 pm #

    Great article: thank you both. I was formally diagnosed with fibromyalgia and chronic fatigue syndrome when I was in my 30s. My first open heart surgery occurred when I was in my late 40s, my second when I was in my late 50s.

    With fibromyalgia, every minute of every day is painful. The slightest touch can feel like being hit. I still (now in my mid 60s) need a pillow between my legs when I sleep on my side because one knee resting directly on the other is painful enough to keep me awake. The biggest hurdle was to work with my family doctor to balance medications so that I could actually get out of bed every day and function. Because I was a student, then worked part-time, my focus was to be able to function well for limited periods between long sleeps.

    CHF ended my career. Being able to breath became my focus. My two open-heart valve replacement surgeries each made a huge improvement in my quality of life – after difficult recoveries. I can take the dog for a slow walk, shop in a mall (with an occasional stop to sit), and socialize. I’m very glad I have a great cardiologist. He sees me regularly, helps sort out what is normal fatigue and what needs to be be investigated, and fine tunes my cardiac meds as needed. He’s been terrific advising me on liberally using nitro spray for my cardiac microvascular disease, which is my most recent cardiac diagnosis.

    Liked by 2 people

    • Carolyn Thomas November 5, 2017 at 3:45 pm #

      Hello Jenn – I think it’s safe to say that you have officially reached your maximum lifetime quota of health crises! I am so glad you have a great doctor; that reality alone for many of us can mean the difference between managing well because of that support – and falling apart. Best of luck to you…

      Liked by 1 person

    • Barbara Keddy November 6, 2017 at 2:41 pm #

      Dear Jenn: You are still in your 60s and so listened to by physicians. On the other hand I often wonder if I would be now that I am in my late 70s! Since I don’t have a cardiologist, I guess I won’t have that opportunity to test it out.

      Still, I do worry about others who don’t have the privileges that I do. In many ways, I am fortunate. However, I could really do without this frolicking pain that reeks havoc on my life. It seems to strike with glee and confuse me because it is so erratic.

      Keep that wonderful doctor under wraps as others may want him to themselves (like me!)
      Regards,
      Barbara

      Liked by 1 person

  7. gerriluce1961 November 5, 2017 at 12:37 pm #

    I was diagnosed with fibromyalgia in 2012, and Prinzmetal’s Angina in 2015 by a female cardiologist after a male cardiologist told me I had “anxiety.” I saw that cardiologist in the beginning of this year and she said she thought my shortness of breath was due to my asthma. I saw her again last week, telling her I again had shortness of breath after everyday activities and often have to take a break. She began to say (rather condescendingly, I thought) that I had a stress echo two years ago and my heart function was normal. After examining me and feeling the pulses in my legs, she did 180 degree turn-around and said I was due for a stress echo and to take the first appointment available. Facing the computer, with her back to me, she asked me if I had chest pain to which I said YES. I timidly ventured that I’m exhausted and she said, “I’ll bet,” still not turning around. Then she walked out. Now I have to wait a month. I hate when doctors don’t or won’t tell you what they’re thinking or what made them decide to order a test. Ergh.

    Liked by 3 people

    • Carolyn Thomas November 5, 2017 at 12:46 pm #

      Waiting is THE WORST! This experience really reinforces how important it is for ALL OF US to ask questions so that we are not leaving the doctor’s office without knowing what made the doctor order a specific test for us. Please don’t ever be “timid” about explaining specific symptoms, or about asking reasonable questions that will help both you and your physician reach decisions. Good luck to you in your echocardiogram.

      Like

    • Barbara Keddy November 6, 2017 at 2:44 pm #

      Hello gerriluce: I agree with Carolyn: WAITING IS THE ABSOLUTE WORST! Ever notice it is the weekend when we suffer from this waiting game?I hate to be doctor bashing so often, but they are the keepers of the information and we desperately need their reassurance.

      Good luck and remember to breathe!
      Barbara

      Liked by 1 person

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