How my father’s terminal cancer battle/memories have helped me through my fibromyalgia struggle!

As of recent, I have been focusing a lot of my time on grieving. After being diagnosed with fibromyalgia, I learned grieving the loss of my old life needed to take place. When one is diagnosed with fibromyalgia we often lose our identity. It took me years to realize this. Once I grieved the loss of myself, I began to find the strength to push through again. At an appointment with the psychologist I currently see, I soon realized I did not really grieve the loss of my father. I once again had to allow myself to grieve ( and still in the process). Grieving the loss, many conversations my dad and I had while he was sick began to flood my mind.

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In 2015, I lost my father to a long battle with cancer. One of our conversations always comes back to my mind. “No matter what, take care of yourself. Get all the testing possible to detect anything at early stages. I am not just referring to cancer! Promise me this my girl. ” As we sat on the couch I whispered beneath my tears I promise. My dad always called my mom and I his girls and he was always so proud to have been able to call us this. I don’t have cancer, but I do have fibromyalgia which is also a very debilitating condition ( obviously not the severity as terminal cancer).

Picture taken at the moment of the above conversation in 2014.
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I kept my promise. Doctors probably think I am a hypochondriac because when my symptoms of fibromyalgia began I insisted on every test possible. I even pushed for a brain MRI to make sure it was not MS ( MS and fibro have many overlapping symptoms) – even though there was no indications of rheumatoid conditions in my blood work detected. We only get one body, so it is important to take care of it no matter what. I know I am not a hypochondriac, so I decided if doctors want to have that opinion of me, they can own the problem.

This text I hold close to my heart. My last text my dad sent to me.

I look back at my dad’s courageous battle, and realized not once did he ever complain about the pain from cancer or side effects of chemotherapy. I often wonder how he did this with the bone pain he experienced. I too have bone pain with fibromyalgia and wonder if the bone pain I have is similar to what my father felt. I assume the pain from cancer is much worse and it amazes me how he never complained once. Obviously many tears were shed, but never once did I hear him speak negatively. The bone pain I experience breaks me most of the time – to the point I can’t stand up out of bed or off the floor. I try to stay strong remembering how strong he was during his battle. It motivates me to not allow fibromyalgia to overtake my life. I refuse to let it win. I was recently listening to a podcast on fibromyalgia and Dr. Liptan ( author of The Fibro Manual and fibromyalgia warrior herself) spoke two sentences which resonated with me. “Your life is not over. It’s probably going to look different, though!” It sure does look different, but she is correct when she states your life isn’t over because of fibromyalgia.

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My dad often was heard saying “It is what it is!” after being diagnosed with terminal cancer. These five small words have made such a drastic impact on me and have stuck in my mind. The saying is often used when a person is facing a challenging situation that cannot be changed and must learn to accept these circumstances. I often find myself saying these exact words in regards to being diagnosed with fibromyalgia. I had to come to terms with the fact I got diagnosed with a chronic pain condition with no cure. There are many strategies out there that can help improve fibromyalgia symptoms, but finding the right combination is the challenging part. What works for one person may not work for the other.

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My journey has led me down a pathway of stepping out of my comfort zone and trying new strategies with the guidance of a psychologist. Strategies that I finally feel are showing benefits instead of resulting in failures. I got so frustrated and discouraged with health care providers trying to “fix” me instead of helping me learn how to manage fibromyalgia and it’s symptoms or trying to repeat failed treatment routes. False hope does not help improve fibromyalgia – just like false hope does not cure cancer. It can create high anxiety/depression and further frustration to set in ( at least in my case). Even the rheumatologist who confirmed my fibromyalgia diagnoses told me ” Go enjoy nature alone and ignore society – your fibromyalgia will improve!” Say what!?!? Nature is good for the soul, but please do not take this rheumatologist’s advice. Don’t hide from society! Find the courage to live your best life under the circumstances that you are faced with . “Fly above negativity.”

The occupational therapist I was working along side, gave me this decorative piece at discharge. She knew I felt I had hit rock bottom, and needed to hear these words of wisdom!
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As for my father…I hold the memories close to my heart. My father’s final words to me were “Smile, don’t be sad! The last life lesson he taught me before he passed away – GRATITUDE!

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Can fibromyalgia go into remission?

Living with fibromyalgia can be like being on a rollercoaster. You never know what to expect day to day or even hour to hour. One minute you can be on that incline to the top of the rollercoaster, the next you are declining to the bottom. We are told fibromyalgia has no cure, but can a person with fibromyalgia go into remission? Believe it or not – the answer is YES!

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The chances of going into remission are better if you have been suffering with fibromyalgia two years or less – with only mild symptoms. Sadly for most of us, our fibromyalgia symptoms are not mild. Experts state that if you have mild symptoms and can learn to control these symptoms, you have up to an 80% of going into remission with fibromyalgia. With fibromyalgia there can be short and long term improvements. When a person is able to find success in long term improvements, this phase is considered remission. For myself, my fibromyalgia symptoms are classified as moderate to severe – the chances for remission is extremely low.

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There are many aspects to consider when trying to lower fibromyalgia symptoms. Your entire life is flipped upside down, and affects every aspect of your life. It can become overwhelming to try to “control” symptoms – as many of us find the symptoms control us. How can we try to put fibromyalgia into remission? Fibromyalgia does not improve without hard work and dedication. We must fight through every step.

Here are a few important areas that I feel should be addressed. Again, please remember the below are based from my personal experience living with fibromyalgia. The areas in which you work towards will most likely look differently then mine.

1. Work towards improving sleep

In all the research I have done over the years and attending fibro summits online by doctors who treat patients with fibromyalgia , trying to improve sleep quality is important. I know, easier said then done. I myself struggle with sleep issues and each year it seems to get worse. I often wonder if I could get the adequate amount of sleep needed if I would experience less fibromyalgia symptoms. Dr Liptan, who is the author of “The Fibro Manual”, states in her book that sleep is the first thing that needs to improve before any other treatment will even begin to work.

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2. Mind and body practices.

At the beginning of my fibromyalgia journey, I would just roll my eyes at suggestions about improving mindfulness skills. After so many failed treatment plans, I have stepped out of my comfort zone and started to focus on mindfulness practices. The previous attempts at mindfulness practices always failed me in the past – or did they? I think having the wrong guidance by health care providers was the issue. I am currently in the care of a psychologist who is helping guide me in mindfulness strategies. The difference this round – the psychologist I see is trained to focus on chronic pain, while the others were not trained on chronic pain strategies. It sure makes a difference when you attend sessions and are not judged. In the past I was heavily judged for failed attempts and told I was not trying hard enough to improve my condition. With those judgements eliminated, mindfulness practices are making a positive change.

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3. Lifestyle changes are necessary.

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Many lifestyle changes need to take place when diagnosed with fibromyalgia. Obviously if one sits back and does nothing fibromyalgia can get worse. Learning to slow down and pace is one strategy that one must acquire. You may not be able to get everything done like before, but setting priorities will help you learn to pace. If you haven’t already you can read about pacing on my previous blog.

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Dietary changes may benefit. There is not a specific dietary plan for fibromyalgia, but there are many foods out there that can cause symptoms to flare. I bought Dr. Liptan’s book ” The Fibro Food Formula”. Liptan explains how certain foods seem to make pain and symptoms worse. We are often told to avoid eating foods with aspartame, MSG, sugar etc. – basically your unhealthy foods. Alcohol is also listed to avoid or limit. For myself, I often find alcohol triggers my pain to go out of control. Sadly watching your diet is hard to do at times when fibromyalgia is attacking full force. When I am in a flare up, I tend to eat whatever is easy to make – usually full of ingredients that won’t benefit me further down the road. I package of mac and cheese is quick and easy to make – but not the healthiest choice.

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For some people just adding in a bit of exercise helps their symptoms. For myself, exercise just brings on a huge flare up. I choose not to focus my treatment options around exercise as much anymore. I go for walks when I can. Exercise for fibromyalgia must be gentle. Walking, yoga, tai chi, etc. all are considered exercise.

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Medications and supplements. I am not going to go into a huge discussion about either products. Some people benefit from medications prescribed for fibromyalgia while others find it creates too many side effects or have absolutely no change in their condition. One medication might work for one person and make life even more miserable to another. I was lucky to find a medication that has lowered my pain levels enough to at least get out it of bed and get a few tasks done throughout the day. I know many others who found the same medication I am on useless.

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There are many aspects to consider. The above are just a few to mention. Everyone has to find the right combination for themselves. You can’t simply be on the same treatment route of someone else with fibromyalgia as it is very much individualized. Whatever routes you take, I hope you find the balanced combination to allow relief of symptoms and/or possibly allow you to experience fibromyalgia remission! Never say never, because I have seen a few people succeed. I often wonder if I had the right guidance early on, if I could have gotten my fibromyalgia under control. My symptoms were mild at the beginning, but due to covid restrictions taking place I was unable to access the early interventions at all.

Fibromyalgia and migraine headaches show a high correlation…

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Fibromyalgia and migraines have a correlation. It is not understood why fibromyalgia causes migraines to form or why migraines may cause fibromyalgia. However, there is a theory that both conditions are linked to the levels of the hormone serotonin. Serotonin is a chemical in the body that is necessary for communication between nerve cells. Low serotonin levels can cause blood vessels surrounding your brain to dilate. The dilation of these vessels can cause the throbbing pain felt in a migraine. People with fibromyalgia often have low serotonin levels as well. What happens when you experience a migraine along side fibromyalgia!?

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In 2015, a study was conducted on the frequency of migraine headaches in patients with fibromyalgia. A total of 1730 people were surveyed. The results concluded that migraines are very common among people with fibromyalgia. Doctors and healthcare providers should be aware of the two overlapping conditions. Individuals who have both conditions are more likely to see an increase in cumulative health problems. My question is, do doctors know migraines and fibromyalgia often coexist? Most doctors only include unexplained pain in their diagnosis.

You can read more about this study here.

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“Over 30 percent of people with migraine also have fibromyalgia, according to a study published in Clinical Rheumatology, and the frequency of migraine in people with fibromyalgia is 55.8 percent”

https://www.everydayhealth.com/migraine/what-you-need-to-know-about-migraine-and-fibromyalgia/
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In 2018, another study on migraines and fibromyalgia revealed several factors. Fibromyalgia can increase the intensity of migraines. Individuals without fibromyalgia, might feel migraine pain levels at moderate ( but can be severe) , while people with fibromyalgia might have severe pain. The intensity of these migraines can be extremely debilitating and disabling. People with both conditions experience a higher headache intensity and disability. The study also reported that people who have both conditions will also have higher depressive symptoms. I personally can see the higher rate of depressive symptoms as a possibility. both conditions are chronic pain conditions, which lowers one function ability even lower.

For more information about this study, you can visit here.

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A few facts…

1. Women are more likely to suffer from fibromyalgia and migraines.

2. A survey concluded that 97% or respondents reported that light was a trigger for pain and other symptoms

3. In the same survey, 63% were sensitive to light between attacks.

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For myself, my neurologist prescribed appropriate medications to treat my migraines. A rescue medication to be taken at the onset of a migraine and a preventative. It has lowered my migraines, but I still find I do get more then my share of migraines. I’ve experienced really intense headaches since I was in my early twenties. However , I was always told they were cluster headaches or tension headaches. It wasn’t until last year I was diagnosed with chronic migraines with aura.

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Conclusion

I do believe fibromyalgia can intensify migraine pain levels. Fibromyalgia lowers our body’s tolerance to stress ( migraine) and also lowers our pain threshold. Both factors can increase how we feel pain levels. For now, I take every step to try to prevent migraines from occurring as much as I can, because the migraines I do experience are debilitating and leave me bed ridden.

Here is a website about migraines which I found very detailed and informative. Migraines.