Chest Pain in Fibromyalgia…What is it called?

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Did you know that fibromyalgia can cause chest pain? I sure didn’t!!!! The first time I had experienced this type of chest pain was the scariest moment of my life – thinking something was wrong with my heart. Chest pain that is felt with fibromyalgia can mimic what may present as a heart attack. It is actually a condition called Costochondritis – which causes inflammation of your rib cartilage. This cartilage connects your ribs to your breastbone. With the symptoms mimicking a heart attack, I would definitely not just assume its costochondritis and get it checked by a doctor to be sure it’s not anything serious or heart related.

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Since I hadn’t heard of this condition before, I decided it was a good time to do some personal research and find out as much information as I could about it as at the time. I was dealing with this chest pain daily for a while. On several sites I used to research, it stated that costochondritis pain is usually only felt in a small area of one’s chest while a heart-attack involves a more widespread area and often causes pain in the neck and into the arms. My chest pain I experience is always on my left side of my chest – hence why at first I thought it was my heart. The pain is a sharp aching pain, which can have a gradual onset or appear immediately. For myself, the chest pain would start minimal and then increase to the point it hurts to breathe or move. I would also feel like there was an air bubble stuck in my chest- it really isn’t an air bubble, but cartilage inflammation. Costochondritis is not a life-threatening, but can be very painful. The attack can usually be relieved by resting and waiting for the condition to improve. Everyone will experience costochondritis differently. Your pain may be less severe than mine, similar or even more severe than I have experienced. I found the duration of the attacks different each time. Sometimes the pain would ease after several hours, while other times it would last until the following day.

To help treat costochondritis I have found lying flat on the bed or couch helps ease my pain. I remain as still as I possibly can as movement aggravates the pain further. I also apply heat with a heating pad to the area. One could also try to ice the area, but I prefer heat. My body responds poorly to icing. My body has become intolerant to icing areas causing pain to arise. Some people may not get any relieve by laying down but may get some relief by standing or sitting in a particular position. You may find yourself experimenting to see which works best for pain relief for you. I often take over the counter pain killers such as Advil or Motrin to help relieve the pain. A few times I have had to rely on prescription anti-inflammatory medication to help.

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There has been no solid evidence towards what could cause an attack of costochondritis to form, but possible causes could be anything that may cause tension to the chest area. The stress can therefore cause inflammation to take place. Even a simple action such as coughing, could cause an attack to happen or reaching for an object off a high shelf above your head. In most cases, it remains unknown to what causes each episode of costochondritis to take place. If you can pinpoint the cause, you may be able to prevent future attacks from taking place. However, without being able to know what the direct cause for the cartilage is to become irritated and inflamed, it remains very difficult to prevent.

I have come across a few articles over the years, that states there are exercises and stretching one can use to help relieve the pain felt from costochondritis. However, I have never explored these stretches and exercises as it states it is best to be directed by a trained physiotherapist. If anyone attends physio for other reasons, you may have the opportunity to ask your physiotherapist about these exercises. Usually at physio, they will teach you the proper stretch or exercise, so you do not hurt yourself further. There are many videos on YouTube about these specific exercises if you wish to explore further.

You can find more information on Costochondritis here. You will be redirected to the mayo clinic website for more information.

I’m sure costochondritis can be present without being diagnosed with fibromyalgia. So don’t assume that if you have fibromyalgia, you will have costochondritis or vice versa. Individuals who are diagnosed with fibromyalgia just seem to have higher chances of having the cartilage in their ribs inflame.

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Fibromyalgia and Insomnia

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Fibromyalgia and insomnia seem to have a high correlation. In all the research I have done on fibromyalgia in the last three years, I have never found a solid explanation as to why people who have fibromyalgia suffer from insomnia. In the book, “What Your Doctor May Not Tell You About Fibromyalgia“, a study states out of 665 males – 80% suffered from insomnia, while out of 4, 075 women 88% reported problems of insomnia. As we know, getting a good night sleep is important for anyone. The less sleep a person gets the less energy reserve one has, causing various negative effects such as cognitive changes. For people with fibromyalgia, insomnia can become a nightly issue. Decreased sleep can cause a person’s pain threshold to become lower. People who have fibromyalgia already have a lower pain threshold to begin with. This is due to desensitization – which will decrease one’s pain threshold even lower as time goes on. With a lower pain threshold, higher levels of chronic pain are formed, and the pain is felt at even higher rates. In all my research, before improving any other fibromyalgia symptoms, the number one advice listed in many sources is – one must first fix their sleep or at least improve their sleep. Sounds easy right? But that is not the case. It is not just an easy fix. I’ve had bouts of insomnia on and off for years, but after so long my body just crashed and I would sleep. These days no matter what I do to try to improve my sleep, it does not happen and results in insomnia. For the last week I have been sleeping poorly. In turn my pain levels have been hitting levels of ten and I’ve been exhausted.

Some of the remedies to help lesson insomnia sound very straight forward, but reality is they are much more difficult than one thinks when factoring in chronic pain/fatigue. Here is what I have struggled with trying to improve sleep quality and quantity.

  1. Stay active and don’t become sedentary. Not so easy when you live with chronic pain and chronic fatigue. Just getting out of bed some days is difficult enough. If you have read my pacing blog – remember the spoon theory? Some days I don’t have a spoon to use to exercise.
  2. Stick to a sleep schedule. I tend to go to bed early and at the same time every night – due to the fact that if I go to bed even an hour later then I usually do, I can’t function at all the next day. Getting up at the same time every morning is a different story. Who wants to drag themselves out of bed if they have not slept at all or very little? Just to keep a scheduled sleep schedule? I rather get sleep when I can.
  3. Lots of times people overlook their medication list as a cause of insomnia. Many medications can have a side effect of insomnia. After researching and speaking to a pharmacist I have come to learn that many of the medications I take to manage my pain, have a possible side effect of insomnia. For example, my one medication I use to manage my migraines, can possibly cause a reduction in melatonin levels being secreted. Melatonin is naturally released in our bodies, and it is an important hormone to trigger optimal sleep. Many doctors may make a suggestion to try melatonin supplements to help with sleep. You can buy these in the vitamin section in any pharmacy (at least in Canada). Before adding in melatonin, I would suggest speaking to your doctor or pharmacist. For myself, I found these melatonin supplements caused me to have very intense and weird dreams, so I stopped using them.
  4. Avoid or limit naps during the day. For myself I need to rest when tired, otherwise the fatigue levels get worse, pain levels increase, and my ability to function over all decreases drastically.
  5. Pain during the night? There are medications out there that can limit pain, but people who have fibromyalgia are often on medications already to help with pain levels. At night pain often wakes me up, and then I cannot get back to sleep. I end up tossing and turning the rest of the night and getting out of bed in the morning feeling like I am a zombie. I’ve yet to find a solution to this issue.
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You can find more information about insomnia by clicking here, which will redirect you to the Mayo Clinic website.

It is always a good idea to have a sleep study completed to make sure it isn’t sleep apnea. After my appointment with my neurologist, it was suggested I get a sleep test done to rule out apnea. The take home apnea test is simple to hook up. The only issue I had was getting tangled in the cords at night. My test came back negative, but I know a few others with fibromyalgia who tested positive on their test. Once they got a C-pap machine to use at night, their sleep improved immensely.

The use of sleeping pills to help get the necessary sleep needed, can be a touchy subject. I have found that many doctors do not like to recommend sleeping pills and are very hesitant to prescribe them. Many sleeping pills can become habit forming and an individual can become reliant on the use of these pills. In my case, I decided using sleeping pills – the benefits outweighed the risks. I used to use Zopiclone – which did help me sleep, but this drug is not meant to be used long term or nightly. I would use it one night- get a wonderful sleep and then not use it for nights to come. I would go 2-3 nights without sleep and then breakdown and take one. When I did take it, the medication was not out of my system by morning, and I was often left groggy half the day. My doctor and I had a very in-depth discussion about sleeping pills and he switched me over to another one, which is safe to use nightly and the groggy feeling wears off by morning. Even with the use of a nightly sleeping pill I often wake up anywhere from five to ten times a night – experiencing choppy sleep patterns and feel very fatigued during the day. Even on the nights I do manage to get a solid night’s sleep, I wake up feeling extremely fatigued. However, I am a firm believer I also have chronic fatigue syndrome (CFS), alongside my fibromyalgia. The two conditions usually go hand in hand, but I have never been given a solid diagnosis of CFS by a doctor. If you have done any research on chronic fatigue syndrome, you have probably learned that fatigue experienced with this condition will not go away with sleep. I will be writing a blog on chronic fatigue syndrome soon!

Failing to get enough sleep can have many negative effects on one’s body. I won’t list these effects here because the list is way too long to begin to discuss. The pictures at the end of this blog, show many side effects lack of sleep and insomnia can have on one’s body. I will pick a few effects lack of sleep can have and discuss further in future blog posts. Stay tuned.

The best advice I can give to anyone who is experiencing insomnia alongside with their fibromyalgia, is to have a conversation with your doctor, and come up with a plan to help you with sleep. Everyone’s situation will be different. It may be a trial-and-error situation, to see what works best for you! As you can see even after three years, I still struggle with improving my sleep quantity and quality. Every night is different.

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Pacing Yourself….

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Every health care provider I have seen, has always discussed how important pacing oneself is when dealing with chronic pain, such as the pain we experience with fibromyalgia. Pacing is a technique we can implement when trying to complete tasks in our day to day lives. It requires one to break up a bigger task into smaller tasks to help us complete them. If you are like me, tasks such as cleaning can become very strenuous on us, resulting in, higher pain levels, extreme fatigue, frustration, fibro flare, etc. I often forget to pace myself because I was always the type of person to work at a task until it was completed. As of recent, I have been working on learning to pace myself to avoid a “fibro flare”. Pacing can be a very difficult strategy to follow, as most times on our good days we push ourselves over our limit just to get things done – instead of things sitting unfinished. I’ve personally made this mistake over and over again – then several hours later or the next day think to myself, “Why did I push myself so hard, instead of stopping at my limit?!” or ” If I had only slowed down while cleaning, I could have attended my friend’s birthday party.” Sound familiar? When doctors first mentioned pacing to me, I thought to myself that it would never help me. Now after 3 years of having to live with fibromyalgia and the forever unpredictable symptoms and flares, I have learned how important it really is to pace. Some days pacing works, some days its ineffective – and that is okay.

At the bottom of this blog, there are two PDF files that I found online on other sites that I personally found useful. Please note I did not write or create these documents, but I am sharing them to pass the knowledge along. I hope you too will find these helpful.

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I recently saw an article that explains “the spoon theory” and how it relates to pacing. The spoon theory was written and developed by Christine Miserando. She uses this theory to help people understand how to ration their energy reserve and pace themselves to complete tasks or daily activities. I found this theory rather interesting, and it makes complete sense. It is a great way to have a visual perspective right in front of you. Say we each start our day with 12 spoons sitting on the counter. Each task a person completes will decrease our spoon reserve. For example, getting out of bed might decrease by one spoon some days, while other days finding the courage to get out of bed may use two or three spoons up. Miserando’s theory states that if one did not sleep well the night before, a spoon should automatically be eliminated from the reserve before getting out of bed. I personally find getting out of bed extremely difficult when pain levels are high, and fatigue is at an all-time high. A shower may be considered two spoons, cooking a meal and eating may be three spoons, and going to work can be considered four spoons. Once again this is just an example of her theory. Obviously, everyone’s reserve of spoons (in our case energy) will deplete at different rates. Some days for myself just getting out of bed and eating breakfast requires all my energy, while other days my energy reserve lasts until noon and I can accomplish more. As the day goes on, our collection of “spoons decreases” – just like our energy levels. This is where pacing yourself through-out the day can possibly help you extend your energy to complete more tasks. Even though the tasks may seem to take longer to complete, you may be able to complete more in one day with pacing. Remember, pacing takes practice and patience. It may be difficult at the start, but the more you pace, the more efficiently you may be able to get things done without setting yourself into intense pain levels and possibly causing a fibromyalgia flare to take place. How will you use your spoons?

Pacing Yourself to Increase Valued ActivitiesDownload
Pacing And Goal SettingDownload
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Stand up and advocate for youself….

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Advocate, Advocate, Advocate!!

I wish I had found the courage to advocate for myself sooner than I did. After all, we know our bodies best. Not knowing very much about fibromyalgia when I was diagnosed, I put my trust in health care providers. If I could go back to early diagnosis, I would not be so scared to let my voice be heard. When I finally found the courage to advocate for myself – I got labelled as being difficult, uncooperative and told I was not trying to improve my condition, I held my head high and stood my ground.

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By Advocate I mean you should take the time to explain your condition from your viewpoint, not from a medical stance. I’m not a textbook or a website – nor does my body conform to reflect as such. Just because something is listed about fibromyalgia does not mean it will apply to your specific case. Everyones fibromyalgia journey is unique and different – symptoms we experience will be felt at different intensities and treatment plans and options will vary person to person. Don’t be afraid to ask questions. I would encourage you to ask as many questions as you need to clarify with doctors. After all – It is YOUR health involved. If you don’t take the time to ask the necessary questions in regard to your health, who will? By advocating, you will help others involved understand your condition and how they can best support you. If you have a difficult time advocating for yourself there are usually organizations that one can contact who will help you advocate. Often times an advocate can be arranged to attend medical appointments with you.

Here are some following tips in advocating for your health. They have been taken from the Alberta Health Services website to share with you. Please note: if you visit this site from another country other than the province of Alberta in Canada, the information on this site may not apply to you directly. I only linked the page in reference to what is listed below.

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Here are some tips that may help:

  1. Learn how to explain your health condition clearly. Practice speaking about your health condition with a parent, friend, or someone else you trust.
  2. Write down your concerns or questions before you go to your healthcare provider. It reminds you to talk about them at your appointment.
  3. Ask whatever questions you need answers to. It is your body and you need all the information to make informed decisions about your health.
  4. Keep track of all your doctors, nurses, and other healthcare providers including who you see, when you see them, and what you talked about.
  5. Stay calm and polite, but assert yourself to get the support or information you need.
  6. Speak up if you don’t agree with your healthcare provider. You are the boss of your own healthcare; no one knows your body better than you do.

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Fibromyalgia? Flu? Another illness? Autoimmune?

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One day you begin to feel aches and pains in different areas of your body. You assume you have a flu. You take the extra time to care for yourself to ease the body aches you feel – applying heat, ice, soak in a warm bath, take some cold/flu pills to help…Whatever you personally find helps you ease aches and pains from a flu. Nothing eases the dull pain and aches you feel. You make the trip to the doctor’s office in hopes of a professional’s opinion and relief. Your doctor does a physical exam and finds nothing physically wrong and orders bloodwork to investigate further. You return home and continue to try to ease the symptoms of this horrible flu bug you think you have caught. Results come back from your bloodwork and reveals nothing is wrong. No abnormalities detected to indicate your body is malfunctioning in any way. Your doctor decides to run blood work a second time. In the meantime, your body is so tired and fatigued from the consistent aching and pain that you begin to become mentally and physically exhausted. As the days go by the pain continues to become more intense and you notice more areas of your body begin to ache and different intensities of pain levels begin to form. The fatigue and pain become unbearable. You go back to the doctor to get the results. NORMAL? ‘How can everything be coming back normal when I hurt so bad? “Why do I hurt the way I do?” “What is causing my pain? ” Your doctor responds with, “I suspect you have fibromyalgia.” You take a moment for this to sink in and absorb the presented information. Does this story sound familiar? I often hear the same story from many other fibromyalgia sufferers. Some of us have heard of fibromyalgia while some of us have never heard of this diagnosis. Whether you have heard of fibromyalgia or not, most likely you went home to begin your own personal research on fibromyalgia. This is where my journey began. What about you? There is much more to fibromyalgia then just the aches and pains.

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The diagnosis process can be very long and a drawn-out process and become frustrating. Doctors often diagnose fibromyalgia from symptoms (which I won’t list here as there are a lot) and possibly will conduct a physical exam as in fibromyalgia, there are 18 trigger point/tender point areas on a person’s body. Some or all of these areas will be tender to the touch. Scroll to the end of this article to see a picture of these tender point areas. For myself I have all 18 areas that are tender to the touch – however my upper back, legs and arms are the most sensitive areas, but the areas can change daily. As most of us know there is not a specific test that can detect fibromyalgia (at least in Canada). I have read articles posted in other areas of the world stating there is now a test that can be conducted to determine if you have Fibromyalgia. I am not sure if this is accurate information, but in a perfect world, wouldn’t it be wonderful to just get a test done to confirm the assumption?!?! I found not having a solid yes on diagnosis hard to accept. I was in denial for the longest time and second guessing my health. Fibromyalgia is diagnosed by eliminating possibilities of other illnesses and conditions prior, which can take time. My doctor diagnosed me fairly quickly – almost so quickly that I wondered if I was really fibromyalgia or misdiagnosed. However, over the years I have seen specialists such as a rheumatologist and neurologist who firmly have agreed with my primary doctor’s diagnosis of fibromyalgia. There are many other conditions that have some overlapping symptoms of fibromyalgia and can be mimic fibromyalgia such as rheumatoid arthritis, Lyme disease, multiple sclerosis (MS) lupus and polymyalgia rheumatica. I’m sure there are other conditions that could possibly mimic fibromyalgia. The above listed are conditions that I read about in my own research. All my blood work kept coming back with no detected abnormalities – no indication of autoimmune disorders. I even requested an MRI be completed to check for brain lesions that may detect MS. To my surprise, a lesion was detected on my brainstem, which is usually an indication of MS. My neurologist quickly ordered a second MRI, to rescan and also had my cervical neck scanned for further lesions. In the end my results never revealed any further lesions and my neurologist stuck with the fibromyalgia diagnosis but never full ruled out MS. My primary doctor was very through in his tests prior to me seeing specialist. My neurologist was impressed at how through he was and ran all necessary tests needed and reran those tests more than once to make sure the results were conclusive.

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My advice to you, if you are still in the diagnosis stage and suspect you may have fibromyalgia and want your doctor to investigate further……

  1. Be sure to see doctors, specialists, and any other health care providers that believe in fibromyalgia. There are many health care providers out there that still think fibromyalgia is in one’s head or are not up to current information on fibromyalgia. Never let anyone convince you that fibromyalgia is just a mental state, and you are imagining it. The pain we feel is real and so are the symptoms experienced. I questioned this myself early on and wondered if I was mentally ill – thinking I was in pain, and it was not really there. The best thing my doctor did was tell me the pain I feel is real and that I was not just going crazy!
  2. Don’t be afraid to ask questions. Ask as many as need!
  3. Do your own research. Arm yourself with knowledge. Doctors often discourage you from researching on your own. My doctor encouraged it. It helped me understand fibromyalgia on a different level. Doctors often explain in medical terms which can be confusing and face it “over our heads”. Reaching it yourself and reading it in simpler terms is easier to understand and comprehend without a medical background.
  4. Try to connect with other people diagnosed with fibromyalgia. There are so many wonderful groups on Facebook these days help us stay connected. Connecting with others who are experiencing the exact same as you or similar, even if they are at a distance makes one feel not so alone during this journey.

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