Tag Archives: chronic pain

Ten things NOT to say to someone with fibromyalgia or any chronic condition

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1. Don’t tell me everything will get better. Fibromyalgia is a neurological condition with no cure. We can’t predict the course it will take. Some people find improvement, while others may never find any relief.

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2. Don’t tell me to get more sleep because I say I’m fatigued. Did you know with fatigue, sleep does not improve the situation. Don’t get me wrong sleep is important, but with chronic fatigue, no matter how much sleep you get you don’t feel refreshed!

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3. Don’t tell me to exercise. We are constantly told to exercise to improve fibromyalgia symptoms. Exercise may help relieve some symptoms, but it is not a cure!

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4. Don’t tell me at least it isn’t fatal. It might not be fatal, but living with chronic pain 24/7 is life altering and debilitating. Fibromyalgia wears you down little by little. A chronic illness diagnosis is almost like getting a life sentence.

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5. Don’t tell me I should get a job to distract my pain. If I could work I would. If my doctor deems me not fit to work, that is just how it is going to be.

6. Don’t tell me you also have the same aches and pains as I do. We may both have back pain, knee pain ect, but chronic pain is more intense then your regular sore back from sitting too long in an office chair.

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7. Don’t ever tell me it is all in your head. This comment shows me lack of respect and understanding! If you must know it is all in my head – its a neurological condition!

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8. Don’t ever say you are too young to have fibromyalgia. Age has nothing to do with it. Even children can be diagnosed with fibromyalgia!

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9. Don’t ever say fibromyalgia isn’t real. If fibromyalgia wasn’t a real condition doctors would not be diagnosing so many people with it. There is also research to back up fibromyalgia does exist. It is just not well understood!

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10. Do not ever tell me I don’t look sick! Fibromyalgia is an invisible condition – with over 100 symptoms.

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Why do some doctors stigmatize fibromyalgia!?? My personal experience!

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Why is there such a stigma attached to fibromyalgia!? Why do some doctors believe fibromyalgia is a real condition, while other doctors do not accept fibromyalgia as a diagnosis!? I was lucky that the doctor I first started to see in regards to fibromyalgia had an in-depth understanding of it and was supportive over the last 2.5 years. My doctor relocated last spring and I have been left seeing walk in clinic doctors at different clinics. I find it absolutely insulting the way some of the doctors reaction to the fact I have fibromyalgia. I often feel like having a fibromyalgia diagnosis on my file, red flags me right away.

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I recently had to visit the local hospital due to the fact I had severe lymph node pain in my neck. After a three hour wait in emergency, the doctor spent literally 40-50 seconds with me in the exam room. He began asking me questions such as how long have I had a sore throat, cough, swollen lymph nodes and fevers. Any of us who live with fibromyalgia and chronic fatigue often suffer from all the above daily. I told the doctor I had fibromyalgia and his whole demeanor changed after mentioning this to him. He got frustrated that I could not answer his questions and soon dismissed me from the exam room after I told him a second time I could not verify how many days I ran a fever. Dismissed me without even addressing my sore throat. I got left sitting in a dark waiting room by myself where my anxiety began to rise. I left the hospital untreated and hysterical. I believe the fact I mentioned fibromyalgia made him think I was just at the hospital to pill shop or that my pain in my lymph nodes was not severe and made up. I would say this was the worst health care I have ever received in my life. I rarely go to the hospital, but the pain in my lymph nodes in my neck was so severe all I could do was sit and cry. At that point, the lymph node pain was more severe then my fibromyalgia pain when I am in a flare!

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Later that morning I decided to attend a walk in clinic since I had no luck at the hospital. A clinic I had never gone to. A clinic where the physicians do not know my file and severity of fibromyalgia. The doctor did address my lymph node pain, but was more focused on the MRI results I had over a year ago. I had to keep repeating over and over that my MRI results were being overseen by my neurologist and to not worry about it. He soon found on my file that I have fibromyalgia and then told me my lymph node pain was caused by anxiety. There is a belief that anxiety can cause enlarged, swollen lymph nodes, but all the articles I read state its a highly controversial subject. There isn’t a medical connection between lymph nodes and stress. Lymph nodes function to fight off an infection. They do not swell to fight off anxiety. Again I left the clinic without treatment of my swollen painful lymph nodes. Instead the doctor concentrated more on my fibromyalgia and the fact I have high anxiety. His advice- lower your anxiety and the lymph node pain would reside. I actually had no anxiety until the hospital incident earlier that morning.

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This morning I decided to go back to the clinic for a second opinion. I finally was heard. I have strep throat, tonsillitis and my right ear was starting to get infected!! That was three days since I saw the other two doctors. I had been sick for awhile, since these infections don’t just appear over night.

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In the past I have also had to see different doctors for prescription refills and have to explain and defend why I am on each and every medication. If these doctors would look at my file, they would see these prescriptions have been in use consistently and prescribed by the same doctor before he moved. Some doctors feel like we are pill shopping, when we are not! I have left the clinic without prescription refills because the doctor did not want to refill them. Thankfully my neurologist stepped in and gave me 15 months worth of refills on several medications.

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Why is it I have a difficult time getting my medications for fibromyalgia refilled, but someone else who needs the same drug for depression not have an issue!? Because fibromyalgia is stigmatized by many doctors. Sadly in this day and age I thought the stigmas would have been eliminated by now. Why should people with fibromyalgia defend their medication list each and every time they see a different doctor!? The truth is we shouldn’t have to. Nor should we feel like we have been denied care because a physician doesn’t understand fibromyalgia and continues to think it is caused by mental instability. After this experience, I was left feeling crazy, unheard and with high anxiety. I should not be left feeling unheard because fibromyalgia is marked on my file!

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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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Fibromyalgia- The Seven Stages

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Are there stages of fibromyalgia!? I often see the following article being reposted on social media – Seven stages of fibromyalgia. Doctors, specialist and other health care providers do not seem to refer to stages of fibromyalgia. I personally think this was written by people with fibromyalgia. Not everyone will go through the stages or necessarily in this order. In my case it is fairly accurate. I thought I would share this article. Please note I have not written this.

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Different Stages Of Fibromyalgia

Stage 1: In this Fibromyalgia Stage you started experiencing pain and fatigue more than before, you’re not sure what is going on but you hurt and you are tired.You can hold a job, you can make it through your day, but you know something isn’t right…so it’s something you’re going to start researching.

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Stage 2: In this stage you are in pain a lot, sometimes taking an anti-inflammatory drug or what have you. You do not get much relief, and you have accepted the fact this is something you are going to have for a while. You feel a lot of pain and you are exhausted almost every day, but for the most part. You keep going and hold down a job. Can still go to events, spend time with your friends and loved ones, and have some good time here and there.

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Stage 3: You are in constant pain, you are constantly tired. You wonder whether you will be ever able to function normally again. You are considering not working, because you no longer have the energy you once had. You come home from work and all you can do is rest. You have to turn down invitations. You have no energy left and you have to rest up just to go back tomorrow. In this stage of Fibromyalgia, you start to feel more alone, and more and more people are beginning to think you whine too much. This stage of fibromyalgia can last a long time, perhaps years.

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Stage 4: You are in unrelenting pain all the time, good days are few and far between. You are calling into work sick more than you even make it in. You are in bed a good portion of your day. Your family begins to think you are using Fibromyalgia as an excuse to not do things, because Fibromyalgia Stages 1-3 you were able to do much of what you just can’t do now. They think you are using your illness as an excuse, you feel alone, isolated, worried, emotional, sad.

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Stage 5: You are struggling to make ends meet. Maybe have a person who takes care of you. You spend a lot of your day in bed, although you still take advantage of that one good day once in awhile. You are sore, very sore, you cry a lot, you feel like a prisoner in your own body. By this time you have already explained to your friends that it still feels good to be invited even if you don’t go.

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Stage 6: It’s easy to feel overwhelmed in this stage, because things are piling up around you: bills, laundry, dishes. You do a little everyday, you push yourself so you don’t feel like your day was wasted in bed .You feel guilty that you no longer pull your own weight in the house.

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Stage 7: So stage seven for fibromyalgia sufferers would be acceptance. Acceptance doesn’t mean giving up. It means facing your illness with a new perspective. You find peace with that acceptance. Anger, fear, hopelessness all but disappear. You stop feeling like you are a worthless human being and you find some purpose in your life.

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Fibromyalgia and temporomandibular joint ( TMJ)

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Fibromyalgia and TMJ are two completely different conditions, but seem to travel together. Many people with fibromyalgia often suffer from jaw pain and have TMJ symptoms. People with chronic fatigue syndrome are often seen to struggle with TMJ as well. High occurrences of TMJ have been reported with people who suffer from fibromyalgia – which can affect the jaw muscles, jaw joints and can cause myofascial pain to arise. A study revealed that many people who have a fibromyalgia diagnosis tend to grind/clench their teeth more then those who do not have fibromyalgia.

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Last spring I had gone to the doctor because my jaw was extremely sore, clicking and locking in place. I had heard of TMJ, but never experienced having it myself. It can become rather uncomfortable and very painful at times. This attack was caused by high stress levels. My doctor advised me that my job was to go home rest my jaw, apply heat and try to destress. However, the stressful situation was beyond my control! Since this incident took place my jaw has been clicking and locking ever since. On Boxing Day, I was eating popcorn, and my jaw decided to lock when I bit down and when I opened my mouth it forced it to unlock suddenly. The pain was unbearable. I don’t even have the words to describe how it felt. All I know is after I had an instant migraine. It is still extremely sore and my jaw feels out of place.

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Symptoms of TMJ:

TMJ can cause many other issues and symptoms to arise. Believe it or not a sore throat, is a common complaint by many. People can even experience pain behind their eyes – your jaw muscles are attached to the jaw from behind your eye sockets. Decreased hearing is also possible. TMJ can cause swelling in your jaw and jaw muscles. The swelling can interfere with your eustachian tubes – causing these tubes in your ear to be congested. Below is an image that lists quite a few symptoms that we may not consider being signs of TMJ.

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How to help relieve TMJ.

1. Heat or ice. Applying either heat or ice to the affected side of the jaw will help relieve pain and any swelling of the jaw joint.

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2. Avoid overuse of the jaw muscles. Try to eat only soft food and cut food into smaller pieces.

3. Stretching and massaging the area. If are able visit your doctor or dentist, they may be able to help guide you in exercises to help TMJ. You can also find some helpful videos on youtube on stretches to help heal and relieve the pain.

4. Acupuncture can possibly be used to help with TMJ. I do not know much about acupuncture.

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4. Over the counter pain medications may be needed to help relief pain. In some cases anti inflammatories may be needed or a muscle relaxant.

5. Depending on what is causing your TMJ, you may need a mouthguard. Some people form TMJ from grinding their teeth.

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6. Lower stress levels. If you are experiencing high levels of stress, clenching your terth together from being tense will cause TMJ ton arise. Take time for self care or use some stress relief techniques to help ( deep breathing)

https://pubmed.ncbi.nlm.nih.gov/36152974/

https://mhnpc.com/2021/07/13/fibromyalgia-tmd-relationship/

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Fibromyalgia. Listening to ten minutes of music a day can possibly lower pain levels…

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When I first started attending sessions with an occupational therapist a few months ago she directed me to listen to ten minutes of music a day. Not just listen to music in the background, but listen to the actual lyrics. I was so confused because I thought an occupational therapist would help me brainstorm strategies to help make tasks easier to complete. Music therapy is often used in many circumstances – even to help chronic pain sufferers.

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Music therapy has many benefits. It can help lower stress, reduce anxiety and can be used as a motivator. Do you ever turn music on when you are cleaning or working at completing another task!? Music motivates us! Music has many different genres – each genre has a different sound, beat and speed. Everyone likes different types of music . I often have music playing during the day. Music often brings me comfort and helps me relax.

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Scientists actually conducted a study on how music could benefit people with fibromyalgia and the findings are rather interesting. The study revealed that music helps reduce pain and increases functional mobility. The increased functional mobility seemed to be highly related to the music induced analgesia. Researchers found that self selected music proficiently decreased pain levels versus music selected by the researchers for the patients. In other words, listening to music you enjoy helps decrease pain levels. In another analysis researchers found that there was a significant decrease in pain from day 1 to day 14. The participants in the control group – there was no significant decrease in pain. Listening to music you enjoy also releases opioids into your brain and spreads through out your body. This acts as a natural pain reliever – reduces pain levels while you enjoy music.

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You can also use music as a means of meditation. I often listen to music when I walk. I was told listening to the lyrics attentively can act as a way to meditate. Meditation doesn’t always have to be sitting with your legs crossed with your eyes closed. I also used the music lyrics as a way to be more mindful. Instead of allowing my thoughts to take over, I concentrated on the music lyrics. Music is a great way to lower stress, anxiety and is proven to help stabilize one’s mental health. Experts often say people with fibromyalgia need to learn routes to help lower stress levels. If you enjoy music, why not use it as a way to help calm your mind!

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For more information on this study visit: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3920463/

https://pubmed.ncbi.nlm.nih.gov/26245724/

https://www.apmaugusta.com/blog/listening-to-music-and-relieving-pain

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Does fibromyalgia weaken the immune system? According to researchers it does!

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Does fibromyalgia weaken our immune system?! We are usually told it doesn’t, but sometimes I wonder how accurate this information is. Doctors never seem to share the studies done on fibromyalgia. Why is it when we do get sick, it feels 3x as bad!?! At least for myself it does. Fibromyalgia seems to amplify whatever illness you are battling off at the time. I also find that it takes me longer to recover. I just got the news yesterday that I tested positive for strep throat. I’ve had strep throat several times before my fibromyalgia diagnosis. Now it feels like the symptoms of strep are worse. I know the strains of the strep virus change and alter overtime and become stronger, but I also feel like my body does not handle getting sick very well anymore.

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Does fibromyalgia cause our immune system to be weak!? Even though we are told by doctors that fibromyalgia doesn’t weaken our immune system, are our doctors familiar with research and studies being done on fibromyalgia?!! According to a study completed, various reports prove that fibromyalgia does in fact weaken our immune system. A study revealed that patients with fibromyalgia were exhibiting higher white blood cell count and cytokines ( immune cells) then people without fibromyalgia.

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A similar study reported that fibromyalgia weakens our brains immune system. A reduced blood flow to the brains pain center results and affects neuron receptors. This will lead to increased pain , and higher stress levels. Your immune system will become weak and and will be incapable of fighting off bacteria.

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People with fibromyalgia often have lower cortisol ( primary stress hormone) levels. Lower cortisol levels cause an increased level of estrogen to form in the body. Estrogen is seen to have a strong effect on the immune system. When there are high levels of estrogen in the body, the immune system is more likely to have an autoimmune response. This series of events causes progestin in the body to decrease. When progestin is low our immune system may tend to flare a lot . The fluctuation of these hormone levels are know to weaken our immune system. ( 2021 study showed an immune response was found).

Other factors that can also lower ones immune system are lack of sleep which people with fibromyalgia often battle and chronic fatigue levels. When people with fibromyalgia get sick with a cold, flu, sinus infection or in my case strep throat, it puts extra stress on our body. The stress our body feels from being sick can trigger a fibromyalgia flare. The flare up can intensify both fibromyalgia symptoms and illness symptoms all at once making it feel like you are even sicker! It is best to prevent getting sick. If you do get sick, self care is needed. Be sure to take care of yourself!

https://southernpainclinic.com/blog/why-does-fibromyalgia-weaken-the-immune-system/

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Fibromyalgia – Yoga and Tai Chi. What do researchers say in regards to how well they help lower fibromyalgia symptoms

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We are often told activities such as yoga and tai chi are good choices for people with fibromyalgia. Our doctors or any other health care provider involved share this information with us in hopes that it will help ease our fibromyalgia. We rarely stop to question this information because all we want is some relief from the excruciating pain. However, do these activities really help improve fibromyalgia symptoms?

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I was one of those people who thought yoga could possibly help benefit me instead of allowing my pain levels to run my life. I immediately went out and bought a few books on yoga – beginners yoga and yoga for chronic pain. I also looked up yoga videos on Youtube. Now, I am not a yoga fanatic, in fact I find it boring instead of relaxing. I tried to get into yoga before my fibromyalgia diagnosis and never was successful. However, I thought if it would help relieve the pain, why not try to learn to like it. I was desperate for any relief I could find. I soon realized I couldn’t get into most of the yoga poses without extreme pain. I eventually gave up. I started researching yoga recently as I thought about trying it again. I found some interesting facts about yoga and fibromyalgia. Does yoga really help fibromyalgia!!?

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Yoga is often recommended because it is a gentle intervention to help stretch tight muscles and joints. Yoga can also help build up strength. According to a study in 2011, participants didn’t report a reduction of pain and fatigue caused by their fibromyalgia. In 2013, an analysis revealed yoga helped reduce sleep disturbances, depression and improved their quality of life. However, again researchers concluded there was not enough evidence to confirm a link between yoga and reduced fibromyalgia symptoms. As far as I can see, there has been no further studies done on yoga and fibromyalgia

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Conclusion – there is not enough evidence to prove yoga is an effective treatment option for fibromyalgia relief. Don’t get me wrong, yoga does have it’s benefits, but is yoga really the right route for people with fibromyalgia!? If it hasn’t actually been proven by scientists to help reduce fibromyalgia symptoms why are we being recommended to take part in yoga!? With inconclusive findings, researchers state yoga MAY help relieve fibromyalgia pain, but there is no solid proof! I would suggest try yoga to see if it benefits you. If it does, continue to take part in yoga!

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Tai chi on the other hand has proof it is an effective activity to help fibromyalgia symptoms. Tai chi combines meditation, deep breathing and gentle slow motions. For myself I found tai chi too slow for my liking. I could never really get into the flow. Maybe this is because I find meditation exercises and deep breathing very difficult to do. Meditation requires a great deal of concentration which I lack. The study concluded that tai chi is as effective as aerobic exercises – if not a better choice for relieving fibromyalgia symptoms. The participants in this study filled out questionnaires at the end of the study. The information collected on the questionnaires reported decreased fibromyalgia symptoms – improvements in pain intensity, fatigue, physical function, depression, anxiety, morning tiredness and over all well being.

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My thought is even if there is not proven findings that yoga helps your fibromyalgia symptoms – if you find it helps your fibromyalgia, keep doing it! Everyone will benefit differently from each and every route tried. After all, all we want is some relief from the constant pain. There are many videos on yoga for fibromyalgia on Youtube that you can access for free.

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Here are the links to the studies carried out on yoga and tai chi:

Yoga study https://pubmed.ncbi.nlm.nih.gov/22398352/

https://www.medicalnewstoday.com/articles/315142#What-the-research-says

Tai Chi study

https://www.nccih.nih.gov/research/research-results/tai-chi-has-similar-or-greater-benefits-than-aerobic-exercise-for-fibromyalgia-study-shows

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Life with fibromyalgia – I can’t be spontaneous, but I can’t plan ahead either!

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Anybody who knows me, knows how spontaneous I used to be prior to being diagnosed with fibromyalgia. I used to jump in my vehicle and take random road trips. I would stop and site see everywhere along the way. I used to join friends at the last minute to watch their child play hockey or go for a coffee and chat for hours. I used to be able to plan my weekends days in advance. Reality – I can no longer do this living with fibromyalgia.

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Living with chronic pain makes making any plans difficult. Fibromyalgia is a very unpredictable condition. I find myself always cancelling plans because the pain slowly creeps in and takes over, or the chronic fatigue decides to attack. Better yet, a whole new symptom appears out of nowhere and I am left scrambling trying to figure out how to manage it.

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For example, if a friend calls me randomly asking me to go for lunch or coffee I will most likely decline because I just can’t do spontaneous anymore. I often decline due to the fact I fear while we are out, I will suddenly not feel good. I’m always scared fibromyalgia will attack while I’m out and I won’t be able to get myself home. This is not an excuse to not spend time friends. It is a true fear and my reality! When my fibromyalgia decides to attack, I know I have to go home immediately and lay down. If I do not I will send myself into a full blown flare that will last for days. Even if I do accept the invitation, it takes a lot of planning. I have to make sure the restaurant has softer chairs or booths because seating without cushioning makes my body hurt. I have also developed a sensitivity to noise and smells. If the music is loud or there are a lot of people talking in the background – it becomes overwhelming and my anxiety levels begin to rise.

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Even a planned relaxing weekend away can be exhausting. Travelling when you have a chronic illness takes a lot of preparation. Most people when they travel take clothing and toiletries – maybe a few other items. Pretty easy right!? Packing when you factor in a chronic illness takes way more planning. It is almost like I need a whole suitcase to accommodate my “pharmacy”. I have to pack so many different items just in case the pain decides to attack or any other symptoms I suffer from arise. From different sized heating pads to neck pillows all have to be packed. I have a full cosmetic bag of medications I have to take along. I dare not leave any behind because I know what will happen if I do. The one bottle of muscle relaxants I use as last resort I will need the next day! By the time you run every possible scenario through your head – and pack all the necessary items you are exhausted just from packing and mentally drained. I tend to pack days in advance so it isn’t all rushed right before we leave.

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Friendships are often lost due to the fact that we can’t plan ahead nor be spontaneous. Please know that if I have agreed to meet up for a coffee and suddenly cancel – it is not on purpose. I am not just making up an excuse, or avoiding you. Fibromyalgia truly does run my life. You may not be able to see how sick I feel. If I try to make plans with you it is because you are important and I value our friendship. A friend of mine called me and as per usual I declined going out for supper. Instead she brought supper to me and we had a great visit!

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