Tag Archives: fatigue

Four reasons I blog about my fibromyalgia journey…

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You may be wondering why I write and blog about my fibromyalgia journey. There are many different reasons behind why I began blogging. Many people probably think I blog to receive attention – wrong assumption! Here are the reasons I began blogging…

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1. After being diagnosed with fibromyalgia I soon learned that I was beginning to journey down a pathway that many health care providers and people do not understand. I realized fibromyalgia was recognized as a condition, but it is very much misunderstood. After different “treatment” routes attempted and no improvements noted, my frustration soon set in. I figured people all over the world who are diagnosed with fibromyalgia, must be feeling the exact same frustration as myself. It took me a long time to find the courage to begin my blog, because I was afraid of being judged or my blog would simply fail. After months of deep consideration I started my website and promoted as much as I could. My goal was to help other fibro fighters feel not so alone. Chronic illness can be just that- lonely. It becomes a journey that is only understood by those directly affected by fibromyalgia.

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2. As I research to write blog posts, I learn more information about fibromyalgia. I’ve learned a lot of new information about fibromyalgia – probably more then most health care providers I have seen know. Most doctors know the basic information about fibromyalgia, but are they able to provide information on all the previous fibromyalgia studies completed? Probably not. The more I research, the more quality information I can also share for you all.

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3. Through blogging I am able to find purpose in life. Since being diagnosed with fibromyalgia I had to stop working, give up my career I trained in and stay home most days to learn to manage my fibromyalgia. I felt a loss of identity ( which is often felt by people with chronic illness). As human beings we seek purpose in life. We wake up, go to work, work towards a goal, ect. When one is diagnosed with chronic pain such as fibromyalgia, our whole life is turned upside down. I find since I started my blog I have a sense of purpose back. Blogging gives me a goal to work towards – helping others. It brings a sense of accomplishment when I see people connecting to what I have written! When you have purpose, you are more likely to actively seek self management for your fibromyalgia!

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I came across a 2018 study which stated that “regular blogging is potentially useful for people with chronic pain as it provides a conduit to enable them to connect with others who understand and share their experiences of pain, possibly encouraging increased participation in personally meaningful life activities, positive pain management experiences, and social connectedness.” You can read the article here.

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4. Raising awareness and fighting stigmas. Writing about fibromyalgia raises awareness – especially if people without fibromyalgia read my blog posts. My posts give people the opportunity to read and understand what living with fibromyalgia is really like. My blogs also help spread fibromyalgia information/awareness to anyone who has just recently been diagnosed as well. When you are newly diagnosed, it can be overwhelming. There is also such a stigma attached to a fibromyalgia diagnosis – even if I can make a small change in one person’s attitude towards chronic pain- I have succeeded!

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There you have it! The four main reasons I decided to begin blogging about my journey with fibromyalgia. I hope as you read my blog posts, at least one post resonates with you!

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Fibromyalgia – I wish doctors and other health care providers could live in our shoes for a month! Would they be able to take part in their own recommendations?

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There are times I wish every health care provider we deal with could actually put themselves in our shoes for a month to see how it truly feels to live with chronic pain on a daily basis. I bet if they were faced with the chronic pain and other symptoms that they too would have a difficult time finding the energy to take part in all the recommendations to decrease pain levels. When health care providers recommend these routes, do they stop to understand the whole picture? Or are they just recommending these routes because according to science it works? Most times I now take many of the recommendations as a “grain of salt.” If you haven’t heard of the saying ” take it with a grain of salt” it simply means to not completely believe something that you are being told. During early diagnosis, I believed what I was being told could fix fibromyalgia. I soon learned that this was not the case and my body does not respond well to many of the recommendations.

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There have been many recommendations made to me that I should attend physiotherapy, massage therapists, and just learn to exercise more. I know health care providers mean well by recommending these treatments, but I know they don’t exactly understand how painful it can be for us who live daily with fibromyalgia. Adding chronic fatigue on top of the pain makes it very difficulty to find the courage to take part.

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I recently started physiotherapy for osteoarthritis in my lower back. After assessment I felt it might actually be a great decision. However, after my third appointment, I found myself in a full blown flare up. After almost a week of increased pain levels and major fatigue I am second guessing myself. A treatment that was supposed to help relieve my lower back and hip pain has turned into widespread jumping pain down to the bone. Most times we are told to push through and it will get easier- in most cases it doesn’t get easier and we are left bed ridden.

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I had the same experience when I attended a pain clinic and was working along side a kinesiologist. The basic stretches they gave me would send me into a complete spiral and I would go into a flare for days. After months of trying to slowly work stretches in without causing a flare up, I gave up. For myself the extra pain the stretches were causing was just too much to handle on top of my everyday pain I was dealing with.

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Massage therapy is often recommended to help relieve fibromyalgia. I am sure there are many out there that find it helpful, but I do not think it is the right route for me to take. I have never attended a massage therapist, but even the slightest pressure to my muscles hurt me. I could not even imagine someone trying to manipulate my muscles to make them feel less painful. Even a muscle roller where I can control the pressure causes extreme pain to form.

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Exercise! Don’t get me wrong, exercise is important, but it just isn’t as easy as it sounds when you factor in fibromyalgia. Is anyone else absolutely tired of being told to exercise more and fibromyalgia will get better? I was always told to get a gym membership and go to the gym, but reality is the gym is just too much for me to handle. They want me to use the treadmill to walk, but what they don’t understand is I can’t even walk fast enough on the warm up setting. A stationary bike was also recommended, but my legs burn so bad after 15 seconds of peddling and my knees begin to ache. When I step off the bike I feel like collapsing. I won’t push through because I will just end up in a flare.

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I often wonder why certain routes work with some people and not others. Does it come down to how severe your fibromyalgia is? I know fibromyalgia isn’t exactly classified as mild, moderate or severe, but some of my symptoms over the years have gotten worse. I can guarantee it isn’t because I don’t exercise and move. My doctor always said some people recover fully from fibromyalgia with adding some exercise and lifestyle changes , some improve and then hit a plateau and remain there, while others get worse. After speaking to many people on numerous fibromyalgia support groups world wide, I now realize how true his statement was. He believed I hit that plateau. We exhausted all routes we could possibly explore – it has now been quality of life based treatments.

Fibromyalgia and Brain fog…Aka Fibro fog.

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When people think of fibromyalgia we often associate just pain with the condition. Fibromyalgia goes beyond pain and causes a person to have brain fog which affects a persons cognitive ability. We call this fibro fog. In my opinion fibro fog just on its own is debilitating. Think about it, how does mental cloudiness, reduced ability to recall words and issues processing information not become disabling!? Brain fog soon begins to drastically impact your daily life.

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I was reading “The Fibro Manual” written by Dr. Liptan. A study revealed that fibromyalgia patients demonstrated decreased blood flow in areas of the brain important for cognition and increases blood flown in pain processing areas. Dr Liptan states that the brain thrives on blood flow. Adding in a gentle exercise routine will help increase blood flow to your brain , resulting in increased cognition and memory. I found this information rather interesting. This is a process. You can’t exercise for a few days and expect to see results.

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Fibro fog symptoms ( just to name a few)

  • Difficulty holding conversations
  • Not being able to access stored language information efficiently
  • Lowered ability to think quickly ( worse in distracting environments)
  • Forgetfulness
  • Problems remembering new information
  • Impaired ability to to concentrate
  • Lower ability to remain focused
  • Fatigue will result
  • Losing your train of thought often
  • ect
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There are times where I find myself frustrated because I can’t recall words I am looking for. I can even be looking at the item and not be able to name it. Most of the time I tend to laugh it off. One day I thought to myself, why Get frustrated and angry with myself because I can’t recall a word!? Getting frustrated will only add extra stress to your body – stress is the worst thing to aggravate fibromyalgia symptoms. The people I am around often all know my cognitive struggles with brain fog. Fibromyalgia is a neurological condition so it is not surprising that it can alter a persons cognitive abilities.

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What causes fibro fog!? My thoughts

1. Pain levels. Having to live each day experiencing high pain levels can become exhausting and your quality of life will decrease. If our brain can misread pain signals, can our brain dysregulate how neurological pathways function within the brain – causing lower cognitive function!?

2. Lack of sleep. Not getting enough sleep can also affect our cognitive functioning. Most of us have experienced a poor nights sleep at one time or another. The next day it is difficult to think and function. People with fibromyalgia wake up often through the night because of pain. We may even develop other medical conditions which prevent us from getting a solid nights sleep. Insomnia and restless leg syndrome are two examples.

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3. Medications. Be sure to check with your doctor or pharmacist to see if any medications you are taking could be contributing to the brain fog symptoms.

4. Stress can also contribute to fibro fog arising. It is important to deal with any stress appropriately.

I’m sure there are many other reasons for having fibro fog but in my opinion I feel these are possible causes.

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How to cope with brain fog…

1. I use alot of sticky notes to write reminders on them. You can stick them wherever you need to. I will also use phone reminders when needed. There are many free apps out there. Utilize them! You just may need to write a note to remind yourself to check your phone! Haha.

2. Try to get enough sleep. Lack of sleep will not help fibro fog. Easier said then done, is what you are thinking right!?! Don’t worry I get it! Try to stick to a sleep schedule.

3. Work your Brain. Crosswords and word searches will make your brain work! They help improve cognition. Any brain games may help.

4. Break up tasks into smaller steps so you don’t feel overwhelmed. Try not to multi task as your brain can’t process everything you are trying to do at once. Trying to keep up while you multi task could make your fibro fog even worse. By breaking up tasks, your brain has time to process and is not overworked.

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5. If you suspect your medication may be causing brain fog to form, you may want to discuss possibly changing medications with your doctor.

6. Add exercise to your daily routine.

Here are a few of my fibro fog moments… Feel free to laugh. I won’t be offended!

1. Putting toothpaste on my razor instead of my toothbrush!

2. Stuttering while I search for words I am looking to use.

3. Spraying deoderant on my hands while looking at the lotion.

4. Creating a whole new language or words because I can’t think of the word I wanted to use.

5. While having a snack I sat down to work on a puzzle. i found myself eating the puzzle pieces instead of my food.

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6. Looking for my phone while I am using it.

7. Forgetting our keyless code to our house!

8. Ripping up some papers and throwing the paper in the toilet instead of the garbage beside it!

Fibromyalgia what you should know about me…

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WHAT YOU SHOULD KNOW ABOUT Me

Author’s note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn’t want to spend even a day in their shoes…or their bodies. This is not my post. Im just reposting to share with everyone!

  • My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.
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2. My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

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3. My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

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4. My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

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5. My sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the “aggravating everything disorder.” So don’t make me open the drapes or listen to your child scream. I really can’t stand it.

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6. My intolerance – I can’t stand heat, either. Or humidity. If I am a man, I sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

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7. My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

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8. My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

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9. My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

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10. My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

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11. My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

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12. my uniqueness – Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

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Why does Fibromyalgia get worse in the winter? Winter hack….

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Why does fibromyalgia get worsen in colder weather? Many fibromyalgia sufferers report that they experience heightened symptoms and more flares during the winter months. I’m also one of those people that the cold weather affects drastically. As soon as fall begins the fatigue gets extremely bad, so bad that I have a difficult time functioning to complete simple tasks. Once the fatigue sets in the pain slowly increases. Each day that goes by the more pain I experience. With the increased pain, many sleepless nights result and the chronic fatigue sets in further. The fatigue causes a whole other set of issues such as daily sore throats, fever, swollen lymph nodes and migraines. The list goes on and on. What really causes fibromyalgia to become worse in the winter?

My thoughts:

1. We are less active during the winter months because of the cold weather. At least I know I am. This year I have an intolerance to the cold so I tend to stay home more. Even walking from my vehicle into a store leaves me chilled, and takes me forever to warm up. This winter I’m trying to go swimming to see if it lowers the pain levels. Swimming is always recommended to help fibromyalgia pain. I am also utilizing the mall as a place to walk since its too cold out for me to walk outside. Could lower activity during the winter be the cause to why we hurt more!?!

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2. Changing weather. I find our weather changes so drastically over the winter months the last few years. The changes in weather will cause the barometric pressure to also change. One day we will have -30c weather and then the next day it can be -2c. Barometric pressure has been known to irritate sensitive nerves in ones body( usually at lower readings). Could this contribute to the increased fibromyalgia symptoms?! I don’t have the knowledge to explain further. I am still currently doing research on barometric pressure. I just know weather affects my fibromyalgia drastically.

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3. People with fibromyalgia often suffer from anxiety or depression. Not everyone with fibromyalgia will, but lots do. Research often reports higher cases of anxiety and depression caused by lack of sunlight during the winter months. Can anxiety and depression heighten the symptoms of fibromyalgia? It sure can! When one experiences anxiety or depression, it results as a stressor to your body! People with fibromyalgia will know that stress to the body will create more symptoms or flares to form. If you didn’t know, you do now.

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4. If you have arthritis in your joints, cold weather can cause joints to become inflamed. The inflamed joints can make fibromyalgia pain feel even more intense. I often wonder if I have arthritis in my hands. I had an MRI done to rule out MS and the MRI revealed I have the start of arthritis in my neck, so I wouldn’t be surprised if I have it in other joints as well.

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Hacks to get through winter the winter with fibromyalgia…

1. Dress in layers! I live in Canada so our winter months can be brutally cold. We go through extreme cold snaps where I’ve seen -50 c cold warnings. If you have to go out in such cold temperatures, I would recommend layering clothes. This is the first year I’ve bought insulating pants to wear under my clothes. Avoid getting a chill is the best prevention.

From one of my favorite Christmas movies. “A Christmas story.”
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2. Hand and toe warmers. These can be a life saver when it is extremely cold. You can tuck these warmers into your gloves to keep your fingers from getting cold and put them in your footwear as well. Almost like a mini heating pad.

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3. Heated gloves. When I was shopping at a few stores I noticed there are various winter mittens and gloves you can buy that have rechargeable heaters built into the gloves. I do not own a pair, but next winter I think I will invest in a pair!

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4. Stores also sell heated winter coats now. Same concept like the heated gloves. Small Rechargeable heated devices are located through the coat. Only problem is they can be very pricy!

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5. Buy winter footwear that has a temperature rating for extreme temperature. Last year I had bought a pair of Sorell winter boots, but my feet still got cold. My boyfriend bought me a pair of Bog winter boots and I can’t believe the difference this brand makes. Not only are they comfortable to wear, but they are well insulated and have a rating of extreme cold weather to -50c!!

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6. Use heated blankets, heating pads or take a warm bath to help relieve the winter chill from your body. I’ve been using my heated blanket a-lot lately. It sure helps warm me up quickly and soothes the pain! Some people would rather have a hot bath to help warm up and relax.

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Is your chronic fatigue caused by fibromyalgia? Have you considered chronic fatigue syndrome?

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One of the most difficult and frustrating symptoms for myself is the chronic fatigue I have alongside fibromyalgia. When I got told by doctors and specialists that fibromyalgia is often accompanied by fatigue, I never thought the fatigue would be this life disrupting. I’ve learned that feeling tired versus feeling fatigued are two completely separate terms. When a person feels tired, sleeping will cure this tiredness, while fatigue is not relieved by any amount of sleep. In my case I have come to realize no matter how little or how much sleep I get, I feel extremely fatigued the next day, to the point it makes it extremely difficult to function and take care of my basic needs. Who knew eating could become tiring?!? Lifting food to my mouth and chewing the food has proven to be a chore at times. I literally told my doctor this exact sentence not long ago. Some days finding the energy to eat is just overwhelming. Can anyone else relate?

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At my last neurologist appointment, he explained to me that chronic fatigue is one of the most difficult things to treat as there are so many factors to think about to even pinpoint why the fatigue may be so disruptive. Fatigue is a symptom of fibromyalgia to begin with. A survey revealed, 780 males who have fibromyalgia, 93% reported chronic fatigue. While 4467 women were surveyed – 97% reported fatigue. The use of certain medications to help limit fibromyalgia pain could be part of the culprit to the added fatigue. Many medications used in treatment; have a possible side effect of fatigue.

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Ever hear about chronic fatigue syndrome (CFS)? I have done a lot of research between fibromyalgia and CFS. CFS is a completely separate condition from fibromyalgia. There again, it can be difficult to diagnose – just like fibromyalgia. There is no one test to diagnose CFS. I have never been officially diagnosed with it, but I stand firm when I state I do have it. Chronic fatigue syndrome also presents with many other symptoms. Below are some of the possible symptoms of chronic fatigue syndrome.

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Fatigue is not the only symptom people may experience with CFS. I often get daily sore throats, fevers that range from 99-103 F, and swollen lymph nodes. My blood tests always reflect no indication of any infection or that my body is battling a cold or flu. I’ve come to the conclusion that these symptoms I experience, are from chronic fatigue syndrome. There is no other explanation to why I exhibit these symptoms. These symptoms have a very quick onset and with little warning. As I write this blog, I found myself with a fever of 103. When these symptoms arise, it feels like I have the world’s worst flu bug…but I don’t. Have you ever had a flu that has knocked you down for days?!? Most of us have at some point. That is what I experience, but every day. Imagine living with a flu everyday – 24/7 for 365 days. Welcome to my reality.

As for treatment options for CFS, there have only been a few options mentioned to me, but not just a simple fix. My doctor and neurologist both mentioned the possibility of using a stimulant medication such as modafinil. By using a stimulant, one may see a response of wakefulness. Before using these medications there may be many aspects to think about prior. My doctor was very concerned that using a stimulant to improve my wakefulness during the day would be counter-active and not wear off before I went to bed causing further sleep issues to form. There are many listed side effects on these medications as well. Not everyone will experience the possible side effects. I personally find most medications can help relieve some symptoms, but then leave behind another symptom that may be unpleasant to deal with.

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The other treatment option that is supposed to help improve chronic fatigue syndrome is exercise. I was never given any further direction on what type of exercises help or duration; however, I’ve found adding exercise into my day very difficult. First of all, who wants to exercise when they are so fatigued and causes pain levels to hit pain levels of 10?!!One must find the right exercises and duration and not over do this exercise and make their fibromyalgia symptoms and fatigue worse. If you are seeing a kinesiologist, they may be able to guide you with this route. This was my running issue balance. In my particular case, trying to add exercise made me go into a fibro flare each and every time. Research states that pain levels will increase at the beginning until one’s pain threshold increases, but I found it difficult to follow through when the results were so negative and debilitating results. There may be other treatment routes to improve chronic fatigue. These two are the ones most talked about.

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When a person experiences chronic fatigue everyday it can impact a person’s cognitive abilities. I know I often struggle and search for words when I am trying to speak, leading to stuttering or creating words up that aren’t actually a word. I often joke saying maybe I could become rich by claiming rights to my newly created words. My concentration is also very limited, and I often find myself forgetting things. I will get into how fibromyalgia effects a person’s cognitive abilities in a later blog.

Just like fibromyalgia there is no cure for chronic fatigue syndrome. One must learn to maneuver through life the best he/she can while dealing with the exhaustion and symptoms left behind.

For more information visit: https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/diagnosis-treatment/drc-20360510

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