Tag Archives: #fibromyalgia

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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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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