Monthly Archives: January 2023

How can family/friends support someone with Fibromyalgia ( or any chronic illness)

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1. In order to be supportive to someone with fibromyalgia or any chronic illness, you first need to understand what the condition is. Fibromyalgia is more then just chronic pain. Research is the best option to arm yourself with information. The web holds a-lot of knowledge at a click of a button. Just be aware of what sites you are reading, there are many misconceptions about fibromyalgia floating about. If your loved one is on medications – know that with the use of medications comes unwanted side effects. With knowledge comes greater understanding!

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2. Understand the pain cycle and pain scale of chronic pain. Chronic pain is not the same type of pain a sprained ankle brings. The pain from a sprained ankle will eventually go away. Chronic pain is just that- chronic. It will not heal or go away. I am left dealing with extreme pain that is debilitating. Did you know fibromyalgia pain is listed on the McGill pain scale just below childbirth!?

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3. Offer to help with tasks or chores around the house. Don’t automatically assume you need to do everything for me. I appreciate the help, but I still need to maintain a sense of independence. Fibromyalgia has takes away many things from me. Please allow me to continue to keep some independence, but at the same time offer help where you can. Even if you know a task I’m working on is going to possibly backfire and cause increased pain or symptoms to arise allow me to try. I often use these moments to evaluate my limits.

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4. Please know that living with fibromyalgia we grieve who we used to be. I miss the full of life, spontaneous person I used to be too! It is said people living with any chronic condition, tend to go through the 7 stages of grief. I may be frustrated with myself, but it comes out as anger towards you. Let me say this now. I’m sorry for the way I react somedays. Frustration can get the better side of me. I am still learning how to accept my illness.

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5. Chronic illnesses can cause a flood of emotions and can begin to effect our mental health. Please watch for signs of anxiety or depression quietly. Living in extreme pain and dealing with all the other symptoms cause mental exhaustion. I may not connect how living with fibromyalgia affects my mental health early on. If you notice any signs of anxiety or depression, please be gentle in telling me.

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6. Sometimes we just need someone to listen without judgement or opinions being put forth. As the saying goes, “Sometimes we need someone to simply be there. Not to fix anything or to do anything in particular. But just to let us feel that we are cared for and supported!”

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7. Know that we understand it is as hard on you as it is us. Chronic illness affects all involved. Please understand it will be a difficult road ahead. Support each other the best we can and try not to get angry with each other. There will be times where it happens. After all, we are only human.

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8. Please understand I am not my pain. It is not my fault that my pain levels and other symptoms arise at what seems like the most inconvenient times. I still want to live and enjoy life as much as you do. If we had plans to go do something and suddenly can’t I am not being difficult. Please remain flexible! Be realistic instead of having extremely high expectations when it comes to making plans.

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9. Please respect my physical limitations. Fibromyalgia is often accompanied with fatigue. I get fatigued very quickly. Know that my fatigue is not like your tiredness. My fatigue doesn’t go away. Some days I need to slow down or take a break. Just because I was capable of something today, doesn’t mean I will be capable tomorrow.

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10. Please take the time to believe what you see and what I tell you. I am not just making up symptoms, to share with you. My pain is real and so are all my symptoms I speak of. There is often a misconception that chronic pain suffers fake or exaggerate their pain. Don’t you think if I could choose I would choose to be happy, full of life and be who I once was – before the chronic illness over took my body!? I don’t enjoy being isolated from others and possibly have to be in bed all day long.

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12 ways I hide my Fibromyalgia Pain and other symptoms

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1. People with chronic pain learn to hide their pain well. You are probably thinking – pain is not visible. Pain itself isn’t visible, but when my pain levels are so intense – it makes me drop e to the floor and all I can do is cry. That is visible! Just because I have a smile on my face, doesn’t mean I don’t have pain. I have pain everyday – the only thing that changes is the intensity levels of the pain. The pain does not go away.

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2. I stay at home on my worst days. No one ever sees my worst days. I only tend to leave the house when I feel not too bad. Even doctors hardly ever see my bad days, yet alone friends. Since you only see me on my good days, you may think fibromyalgia isn’t as bad as it seems. If you take a few moments to speak to the people I live with – who witness my bad days head on, you may actually take a step back and realize how painful and life altering fibromyalgia can be.

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3. I often pretend the pain I have isn’t there. I may have pain in my knees, but try to walk and carry myself as if the pain isn’t there. When you see me at the store and stop to talk, you won’t know I’m having that extreme knee pain nor will you find I mention pain at all. Unless others experience chronic pain themselves, they will never understand what it feels like. It is not your everyday pain – it is worse.

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4. I use a lot of medications to drown out the pain so I can half function when I leave the house. I don’t mean just take a Tylenol. Tylenol doesn’t ease my levels of pain like it may ease your backpain. You should see the endless bottles of prescription medications I take daily. You may understand after seeing my “pharmacy” in the kitchen cupboard how I am able to half function. If I do not take these medications I can’t even get out of bed, yet alone function to leave the house.

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5. I force myself to be okay when I am actually not. I may tell you I’m ok, but inside my body wants to just shut down and collapse to the ground. When you see me, I may want to actually lay down like a 2 year old kicking and screaming in a temper tantrum, from the frustration that goes along with any chronic illness – but instead I force a fake smile upon my face.

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6. I often isolate myself from having to socialize with others. It is easier to stay home then explain to people why I do not work or why I have to leave a get together suddenly because I need to rest. I don’t like to explain to people why I don’t work and why I am not having an alcoholic beverage! To be honest socializing can become absolutely exhausting for people who deal with chronic pain 24/7.

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7. I hide the emotional aspect of fibromyalgia, I used to be embarrassed about the mental toll fibromyalgia has had on me. Chronic illnesses can create anxiety, depression and panic attacks to form. I bet when you talk to me you would never know I actually have an extreme anxiety disorder. It is being managed, but circumstances and pain levels can trigger an anxiety attack to take place.

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8. I usually give a short answer when Asked how Am I doing. It is too hard to actually explain how I am doing. I often say I am doing okay when I am not to avoid being told, ” I hope you feel better soon!” I have a chronic pain condition with no cure. Chronic means it will most likely not go away.

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9. I tend to hide my pain behind humor. I may be in pain, but I still can joke. Might as well joke instead of cry.

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10. When you see me you may think I dress the way I do to be comfortable. The truth is the baggy sweaters and sweat pants hide my bloated stomach. Many people with fibromyalgia also suffer from stomach issues. I am one of those “lucky” people.

11. People often ask why I don’t feel well. If I know they won’t be able to fully understand what fibromyalgia is I often say I must have a flu bug or a migraine. It is just easier then having to explain to people what fibromyalgia is and how it affects me.

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12. I often forget what I am saying and lose my train of thought. It is part of fibro fog, but I often joke it must be “old age ” setting in, instead of explaining why my cognitive functioning is affected by fibromyalgia.

Can watching horror movies lower Chronic pain levels? Do movies help improve mental health?

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I came across a few article that claims watching horror movies may help reduce chronic pain. I never thought watching a scary movie could actually benefit my pain levels. I have never heard of this theory before. However, the information presented in both articles does make sense to why it may reduce chronic pain

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According to both articles I read on pain and horror movies, both writers explained that according to experts and research our brain is not capable of producing pain and fear at the same time. Our brain may flicker back and forth between pain and fear while watching a horror movie. I tried to look up this theory, but I was not successful in finding any information to back this up. However, the article did mention Professor Lorimer Moseley’s name. Moseley is a professor of clinical neurosciences and an expert in pain from the University of South Australia. He has published over 300 papers and 6 books. You can also find many of his videos on Youtube. It appears Moseley has a podcast – the information could have been shared in one of his podcast presentations.

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When we watch horror movies, our body enables our fight or flight system. It is believed that in fibromyalgia our system is stuck in the fight mode. When our fight or flight system is triggered properly, our body releases more endorphins, adrenaline and dopamine. The boost of adrenaline causes your heart to race and pump more blood to your muscles. In a previous blog I posted I shared that Dr. Liptan stated that in fibromyalgia there is lack of blood flow to the muscles of people with fibromyalgia. Would the increased blood flow, lower pain levels? Endorphins help relieve pain, reduce stress and improve over all well being. If we experience an increase in endorphins while watching a horror movie, could this be why people with chronic pain feel lower levels?! As for the increased dopamine levels, it can possibly help lower chronic pain. According to evidence, a disruption to normal dopamine levels plays a role in fibromyalgia.

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Does watching a horror movie really lower pain levels? Or does it just make us watch intensively and we are distracted from the pain at the time!? I don’t have the answer, but it would be easy to trial this theory! Turn on some horror films and test it out yourself! Movies in general help us escape from reality for a short period of time.

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Watching movies can also benefit our mental health.

1. Relaxation. Ever had a movie night in on a Saturday evening? I have. Often times when I need down time, I will turn on a movie. We all need to sit back and relax every so often.

2. Movies can be a mood booster. Everyone likes different types of movies, but a good comedy movie that can make you laugh the entire movie boosts my mood. How about you!?

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3. Reduces stress. Back to the comedy movie – laughter helps reduce levels of hormones in the body responsible for stress.

Did you know there is actually movie therapy ( cinema therapy) !? It is usually directed by a therapist for therapeutic purposes. Read more about it here.

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Lets talk about algophobia – fear of pain!

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While I was was looking up something on chronic pain the other day I came across algophobia – which is fear of having pain. Most of us with chronic pain tend to suffer from algophobia. I don’t know about you, but I developed extreme anxiety about my pain levels possibly rising. The pain levels we experience in fibromyalgia are extremely high and unbearable that I worry or protect myself from possibly exposing myself to actions that may cause increased pain levels to arise. People with algophobia often have intense feelings of worry, panic or even have depression result. The truth of the matter – the anxiety algophobia creates can leave a person more sensitive to pain!

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Back in the fall of 2020 I decided to attend a pain clinic. This pain clinic is where my algophobia began. I attempted their recommended stretches – which soon led to increased pain levels and being unable to move out of bed. They discharged me from the program stating it was unsuccessful. In the mean time it left me being scared to do anything. I was even scared to go to the store or go for a small walk for increased pain levels would result. I eventually got to know my limits and when to stop before my pain levels would increase. I found my own rhythm without help. This last fall 2022 , I attended more programming through another clinic which suggested an exercise program once again. It created unease very quickly and I began to have major anxiety episodes. I had anxiety and worry even before the assessment with the kinisiologist. Upon filling out papers for the psychologist i soon realized I was showing as having an anxiety disorder. After reading about algophobia, I’m sure this is what I was experiencing at the time. I soon began having higher pain levels which I attribute to the thought of a kinesiologist incorporating an exercise program in knowing how my body reacted at the last pain clinic.

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If you live with chronic pain, most of us will avoid situations or actions that can possibly increase our pain. We protect ourselves. Its human nature to protect ourselves. However, when it comes down to algophobia experts state that exaggerating the threat of pain can actually make the pain worse. It is known that the chemicals in your brain that regulate anxiety and fear also regulate how you perceive pain. The imbalances of these chemicals can trigger both problems.

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Symptoms of Algophobia

  • Fear-avoidance. You may find yourself avoiding activities and exercise that you believe may cause you pain. Who wouldn’t avoid taking part in something that causes pain?
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  • Catastrophizing. Envisioning every situation before hand to predict whether it will produce pain. You look for the worst possible outcome in every situation. In our case pain levels.
  • Hypervigilance. You may focus on pain levels in every situation.
  • Experience symptoms of anxiety attacks.
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How to overcome Algophobia

1. Cognitive behavioral Therapy. A psychologist can help you overcome your fear of pain. Your therapist will help you change the way you think about pain. I won’t mention any cognitive behavioral strategies here as there are many different approaches and each therapist will take a different route in treatment.

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2. Exposure therapy. Slowly exposing yourself to situations and avoided movements that you were afraid would cause higher pain levels to arise may be used. For example instead of doing full leg stretches, maybe start off by laying in bed doing a few ankle rolls instead.

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3. Exercise or physical movement. Chronic pain sufferers often avoid movement due to increased pain. Experts say that gradually increasing exercise or movement can increase chemicals in your brain that manage pain more efficiently. I have yet been successful in trying this. I do increase my movement, but it often always results in high pain levels overtime, no decreased levels. I often wonder if my chronic fatigue plays a role in this. As the fatigue sets in, my pain levels increase. I guess everyone is different.

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Most people can learn to manage their fear of pain with the right combination of treatments. For myself, I still struggle and continue to over come Algophobia. I hope one day I can live without the fear of increased pain levels.