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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Fibromyalgia and Dry eyes

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Did you know fibromyalgia can affect your eyes?! Over the last six months I noticed my eyes would become extremely irritated. My eyes would appear blood shot, burn and my vision would go blurry. At first I thought my vision had changed and I needed new glasses. My eyes started to bother me daily so I decided it was time to make an appointment with the optometrist. They ran all the pretest exams on my eyes to make sure my eye structure was healthy. The optometrist had me fill out a few questionnaires on dry eyes. It turns out I have dry eyes. The optometrist knows I have fibromyalgia and she explained to me there is actually a high correlation between fibromyalgia and dry eyes. I never knew this.

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After having yellow dye drops put into my eyes and looked at under the microscope the optometrist told me that my tears were not healthy. Who knew this was possible!?! I didn’t know one could have unhealthy tears.

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Your tears are made up of three components – water, oil and mucus. In my case my oil glands are not secreting enough oil.

When any of the three components of your tears (tear film) are not producing enough it can create issues with your eyes to form . The oil portion helps coat your eyes and and keeps the water component from evaporating. If there is not enough oil secreted the water component will evaporate and create dry eyes. The water component is the biggest portion of your tear film and it is responsible for supplying the moisture your eye needs to feel comfortable. The last layer of your tears is the mucus layer. The mucus layer helps the tear film to adhere to the eye and hold the next layer in place. The mucus layer is what produces “sleep crusties” in the corner of your eyes when you wake up.

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What can be done to treat dry eyes?

1. There are many over the counter eye drops you can purchase from your pharmacy to help treat dry eye.

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2. I was also prescribed an eye drop that contained a corticosteroid as I had eye inflammation from having such a severe case of dry eye.

3. Heat mask. Applying heat to your eyes for 15 minutes at a time will help the oil glands in your eyes secrete the necessary oil. The optometrist recommended I buy a specific eye mask from them that consists of dry heat. I was told dry heat was better – it applies heat evenly and the mask stays warmer longer.

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4. Drink plenty of water!

5. Use a humidifier to keep the air in your home from getting too dry.

6. You may require an eye drop for long term use.

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Did you know:

There are three different types of tears. Basal, reflex and emotional tears.

Basal tears help protect the eyes. These tears will appear if you get dust or debris in your eyes. Your eyes shed these type of tears without you even noticing!

Reflex tears are tears made of mostly water. If a small bug or particle gets in your eye reflex tears will flush it out.

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Emotional tears shed when you are overcome with emotion. Scientists have found traces of stress chemicals in these tears. This finding could mean crying is a form of stress relief!

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For more information about dry eye visit here.

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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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Why does fibromyalgia cause skin rashes!?!?

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Do you get random skin rashes with fibromyalgia!? These rashes can be painful, bumpy, raised, itchy and you may even experience your skin crawling. I often experience these rashes. I even broke out in a fibromyalgia rash just sitting at the doctor’s office. Since I was already at the doctor’s office I decided to show my doctor the rash that appeared out of no where. My doctor thought I had been scratching the area, but I had not scratched it once. It appeared red, inflamed and felt hot. I was always so puzzled to why I got random rashes. Sometimes the rashes look like heat rashes, but are actually not caused by sweating.

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Not everyone with fibromyalgia will develop rashes, but many people do. Rashes can appear at anytime anywhere on the body. Some fibromyalgia rashes can become so sensitive it is difficult to even sleep. If you are like me you often wonder what can cause these rashes to appear. The exact cause to the rashes has never been determined, but there are several factors that may contribute to a rash arising.

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Possible causes of why fibromyalgia rashes appear:

1. Medications you are on to help treat your fibromyalgia symptoms could be the culprit. Talk to your doctor of pharmacist to discuss whether your medications could possibly be causing the rashes to appear. I would advise getting any rash checked if you are unsure.

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2. Signals in your central nervous system (brain, spinal cord and nerves). Your brain could possibly be sending out “itch” signals to the nerves in your skin. Your skin will become oversensitive. The result of your skin becoming oversensitive will create a sensation of itchiness.

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3. Chemical imbalances. A chemical imbalance in the brain could trigger a rash to appear. When you scratch an itch your brain will respond by releasing serotonin which helps stop the pain or itchiness. However, the more you scratch the more you itch. The more scratching and itching you do the more serotonin levels increase. The itching and scratching cycle can possibly lead to worse skin pain linked to fibromyalgia. Researchers completed a study on mice that showed the release of serotonin made the itchiness in mice worse. The higher the serotonin levels are the more you itch which then results in a rash forming.

Food for thought… there are a lot of medications used to lower pain levels which have serotonin in them. Do these medications create the same response?!? The higher the dose, the more serotonin levels we have causing a rash to form?!?

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4. Is an immune response responsible for creating the rash?! If this is true your immune system believes the proteins under your skin are foreign invaders. This would promote your immune system to release histamine which would increase skin sensitivity, which results in a rash. There has been no research on this hypothesis as of yet.

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How to manage a fibromyalgia rash. ..

1. Avoid scratching the rash even if it is itchy. The more you scratch, the worse the rash becomes.

2. Apply a cold cloth or compress. The cold will reduce swelling and any pain. It may even help reduce the itchiness.

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3. Apply a hydrocortisone cream. It will prevent a histamine reaction from taking place and help reduce itchiness and help relieve the rash.

4. Avoid using extremely hot water to shower. Use lukewarm water instead. Using lukewarm water will help soothe the rash.

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5. If you have dry skin, use moisturizing lotions to prevent itchiness. Dry skin can lead to a rash forming.

Don’t always assume your skin rashes are caused by fibromyalgia. Always take the time to go talk to your doctor or pharmacist. You could be having an allergic reaction instead. I bet just reading this article makes you itchy!

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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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What fibromyalgia pain may feel like. Real life examples…

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We all know that fibromyalgia is an invisible condition. I decided to explain what fibromyalgia would look like and feel like to people without fibromyalgia.

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I am including a sensitivity warning on this post as I have visually described what some fibromyalgia pain can feel like! If reading such imagery, I suggest you not read this post.

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1. Have you ever had a huge bruise somewhere on your body that hurts when you barely touch it?! The type of bruise that turns dark purple/ blue and stays for over a week?!! Image your entire body covered head to toe in bruises. Pretty painful thinking about it. I often tell people my body feels so bruised up. The below picture is a image that represents fibromyalgia pain well. This image often circulates on fibromyalgia groups with a description stating, “If fibromyalgia were visible!”

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2. Ever dropped a glass item and watched it shatter such as a drinking glass? I know I have and picking up the glass, results in possibilities of getting glass splinters in your fingers or accidentally stepping on a piece. Now image the spot where the shard entered getting infected and the area starts to throb. Try to image that feeling in every muscle you have – there are over 600 muscles in your body.

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3. Have you ever been on an acreage or farm that has barbed wire fences installed?!? The barbs on the fence are very sharp. I know I’ve cut my finger on these fences and snagged my clothing. Now image a piece of barbed wire wrapped around your legs and arms. The bards dig in and feel uncomfortable and possibly cut your skin. Now imagine someone pulling that piece of barbed wire tighter. What an unpleasant thought, yet alone feeling! Welcome to what fibromyalgia pain can be compared to.

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4. We have all received a static shock at some point in our lives unintentionally. Clothing creates shocks during the winter months. Imagine feeling like you are being shocked all day with no break. Everything you touch shocks you. Every step generates a shock. The feeling can become annoying or uncomfortable. Imagine putting on fuzzy socks and dragging your feet across the rug. It creates lots of shocks back to back. Now image these shocks in your brain or in every muscle in your body at once. Ouch!!

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5. Ahh! Sunshine!! Image you are Enjoying a beautiful day at the beach, not a worry in sight… until the next day when you realize you forgot to apply the sunscreen. Your skin is screaming back at you as you try to soothe the redness. Your sunburnt area is so sore even applying aloe makes you want to cry or the touch of your shirt lightly resting on your skin is unbearable. People with fibromyalgia can experience sensations like their skin has been burnt, with no relief. The touch of wearing clothing is enough to make us want to scream. People with fibromyalgia often get rashes on their body that can burn. I have experienced a few of these attacks.

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6. Image sitting around a relaxing campfire on a beautiful summer evening. You throw a piece of wood on the fire that begins to spit hot coals from the fire and sparks. Have you ever had a spark land on your skin and it hurts?! People with fibromyalgia can also experience these sensations without the visible sparks. It isn’t just one spark, its continuous spark pain for hours on end – even days..

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7. Imagine you just got off a long shift at work. You are exhausted and feel like you have been through the wringer! Now force yourself to stay awake. The fatigue a person with fibromyalgia feels everyday is equivalent to someone without fibromyalgia not sleeping at all for three days! Can you function if you were to stay awake for three days straight? Not even a 5 minute cat nap? I bet the answer is no.

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Fibromyalgia might be invisible, but there are many ways to visualize and represent what fibromyalgia pain can feel like. These are only six that I have written about. There are many more examples that come to mind.

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What happens if you start your day with selfcare….

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When I got diagnosed with fibromyalgia I bought the book “Let that Sh*t Go” – written by Nina Purewal and Kate Petriw. This book has been an eye opener and has helped me look at life differently. In one of the chapters they write about how self love is selfless. The chapter begins by having you imagine that you just woke up and so many thoughts begin to flow – listing off everything you need to do that today. Instead of getting ready and jumping right into that to do list, what if you started your day off with something you absolutely enjoy like reading a book for 30 minutes before begin that long list of yours?!! How do you think the rest of your day would pan out!?!

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I decided to put it to the test to see if it really made a difference. Instead of worrying about housework, what I would cook for supper, ect – or in my case what wouldn’t get done due to high pain levels and fatigue, I allowed myself to watch an episode of a favorite tv show, listened to music or a couple chapters of my audiobook. I found taking time to start my day this way made a huge difference. I was able to handle most high pain days a little better. Not everyday, but most. Being on disability, my schedule allowed me to be able to do this. I know lots of you reading this may not have the opportunity to do something just for yourself first thing in the morning, but what about a few small things throughout the day? Even calling your best friend for 5 minutes can be considered self care or take a minute to take a deep breathe in and out. The authors of this book, explain the purpose of starting your day by doing a self care activity, is so that you don’t start your day overwhelmed and anxious. Instead of trying to pour from an empty cup, you start your day with a full cup. For those of you who have not heard this saying, it basically means you can’t take care of others ( or in this case your to do list) unless you first take care of yourself!

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I believe the saying is true to its words. How can you go to work and be productive, care for your family, coach hockey, be supportive to friends ect. if you are running on empty all of the time?!? The answer is you can’t – or at least not effectively. Not taking time for self care actually has many negative effects. We will notice that when we get run down, and don’t stop to take a break, we often get sick more often. When we don’t slow down, we feel overwhelmed, exhausted and anxious when things don’t go our way. At least I do. Being stressed can create tense muscles and headaches to form. For people with fibromyalgia, adding tense muscles from stress is not going to help our pain levels, but will result with increased pain.

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Self care is a very important aspect in anyone’s life , but for those who have a chronic illnesses such as fibromyalgia, it becomes necessary for survival. Life gets so hectic that many people forget to incorporates self care routines into their lives. Making time for selfcare has proven to be beneficially. Self care helps reduce or eliminate stress, anxiety and depression. It can also increase your mental health and self esteem, along with improving your physical health. These are just a few benefits to practicing self care. There are many other benefits.

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Taking some time for yourself, will help you be in a “happy zone” which then tends to have a trickle down effect. Ever had one of those days where everything goes wrong? One incident after the other seems to take place? Now imagine yourself starting that day over, but starting it by doing a self care activity first. You begin your day with your cup full. The result will most likely be that you will handle your day completely different. The coffee you spilled all over your meeting notes in your office may not seem like such a big deal. Your child missing the bus home may not throw you over the edge. Why? because you took the time to start your day by taking care of yourself!

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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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Can we make our brain not misread pain signals? Food for thought…

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Just a blog to make you think deeper. I attended an online fibromyalgia summit not long ago. Dr. Whitten spoke along side Dr. Murphree. Both these gentlemen treat fibromyalgia patients in the United States. The information in the video I watched made me think on a different level.

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Food for thought…

We all know there is no cure for fibromyalgia, but what about treatment options ?!? Finding a treatment or routine that helps improve your fibromyalgia symptoms can be tricky. Looking at my own journey I have realized I haven’t really ever found that treatment route that works – especially when symptoms appear when they feel like it. I feel like no matter how much I try to prevent fibromyalgia symptoms , I’m fighting a losing battle. I’ve come to realize that my body will do what it wants to do and it’s hard to rein it back. You learn to deal with your symptoms day by day as you never know which symptoms will be prevalent that day.

Question:

Fibromyalgia is considered neurological at this point, so how do we rewire our brain so we don’t feel pain so intense?

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If fibromyalgia is really caused by our brain misreading signals, how do we think we will be able to control it or change it? Ever been driving to the store and your mind wanders and you find yourself thinking about other things? “I really should finish that assignment for work. What should I buy at the store? I should really be cleaning. I can’t forget my best friends birthday on the weekend.” We usually don’t even realize our brain is thinking up thoughts without us thinking. Interesting, isn’t it? This is our chatty brain talking. If we cant even shut off our chatty brain, how do we make our brain not misread signals ?!! Technically we can help limit our mind from wandering by “living in the moment.” It takes a lot of redirection of our thoughts. If our brain is stuck in fight mode (fight or flight) how do we rewire our brain so we can increase our pain threshold? I asked the following two questions to most health care providers I have seen and I have never been giving any answers. I don’t have the answers to these questions. Just a few questions for you to ponder over.

*”Pain threshold is the minimum intensity at which a person begins to perceive, or sense, a stimulus as being painful. Pain tolerance, is the maximum amount, or level, of pain a person can tolerate or bear.”

1. How does one raise that pain threshold without causing excruciating pain, chronic fatigue or flares to arise!?!

2. How does one create a successful treatment plan without the pain going out of control?

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I was often told to raise the pain threshold level by slowly adding time to activities or tasks, but I found this unsuccessful. Example: adding 30 extra seconds a week to your walking ability may help raise your tolerance slowly. Some people may add time to their activity every few days, but I found this to be physically demanding on my body causing increased pain levels to arise. For myself, this strategy would just backfire and cause me to flare, even if I stopped before I hit my pain threshold line. After three years of trying to incorporate this strategy, I can say it has failed. No matter the time increments I can’t seem to get passed being able to walk longer distances. Don’t forget, everyone’s body will respond differently. Just because it didn’t work for me, doesn’t mean it wont work for you. Give it a try! You can alter this strategy however you want.

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Health care providers mentioned using yoga to help raise the pain threshold. Yoga incorporates meditation, physical poses along with mental training. Many people without fibromyalgia take part in fibromyalgia and find it relaxing along with many increased health benefits. These benefits include increased muscle strength, flexibility, energy, weight reduction and energy. However, for people with fibromyalgia it can become very difficult to get in the “zone” to concentrate enough to take part in yoga. Being able to meditate can be difficult on its own, but factor in chronic pain and fatigue levels makes it even harder. For myself, I found yoga too slow for my liking and I couldn’t even get into half the yoga poses due to pain levels increasing. How does one find the benefit of yoga with difficulties concentrating and have limited motion /flexibility to get into the yoga poses is beyond me. I even started with the easy poses and had a difficult time. Yoga may benefit some people, but it wasn’t for me.

There may be more strategies out there, but these are the only two I was ever introduced to.

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If our pain, fatigue or flare ups increase drastically during treatment routes, I personally think that this is a failed treatment route. I’m not a believer in the “no pain, no gain” saying when it comes to fibromyalgia. First of all I live with daily pain, why would I do something that causes further pain to result!? My goal is to decrease pain levels not cause further pain from forming. When we live with pain levels that are 10/10 why would I want to “add to injury”?!? In my eyes, a successful treatment route should cause limited or no pain at the time being done. A successful treatment plan should not cause a flare up to form the next day. If it does, it means you have gone over your pain threshold level and pushed too hard. I am a firm believer in stopping before one hits that threshold level. You may want to try to push just slightly above that line to help try to heighten that threshold level. Successful programming or treatment routes should improve your ability to function and move better and not result in more pain. After-all the goal is to improve quality of life not hinder it further!

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In my experience, health care providers do not seem have current up to date information on fibromyalgia or have a lack of knowledge of the condition. Don’t get me wrong, some are very knowledgeable on fibromyalgia. The lack of understanding and knowledge often can lead to hands on treatments – which are often too aggressive. Example: A massage therapist may not even know what fibromyalgia is and when you go for a massage may not apply gentler pressure while massaging your back or legs – resulting in extreme pain levels. Many healthcare providers overlook the common issue in fibromyalgia – our bodies are hypersensitive. Dr. Whitten also mentioned this in his discussion.

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In order to help reduce fibromyalgia symptoms, we must find the right combination of routes for ourselves. This process can be very exhausting. Don’t give up! Try everything you can possibly try. Don’t be afraid to speak up if a health care provider mentions possible strategies that have maybe failed you. They may even be able to provide you with ways to modify those strategies that may help you find success!

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What can cause a fibromyalgia flare up…

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1. Weather changes or season changes. The constant changes in weather can contribute to fibromyalgia flares arising. Every fall my body responds poorly to the change of seasons – summer to fall. As the cooler temperatures set in, my aches and pains soon become consistent deep down to the bone pain. The colder the temperature drops the worse my pain levels become. The chronic fatigue becomes even more debilitating – making tasks even harder to complete. Getting out of bed in the morning itself is a challenge. I keep telling everyone that I need to win the lottery and buy my own tropical island. For myself warmer weather eases my pain levels. Other people, find heat difficult to handle. Everyone’s body is different. If I wake up with deep down aching during the spring and summer months – I often know the humidity is usually going to be high or if rain is on its way. Who needs a weather app when your body tells you the weather as soon as you wake up!!

2. Stress can also create a flare up to form. As we all know stress is not kind to our bodies, even without factoring fibromyalgia into the picture. Stress weakens our bodies, causing our body to become vulnerable. For people with fibromyalgia, the stress response tends to be heightened symptoms. It is very important for people who live with fibromyalgia to learn how to manage their stress in their lives.

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3. Over exertion. People with fibromyalgia or any chronic pain disorder need to pace themselves even on their good days. Its probably not a good idea to clean the house, go get groceries, run errands, and attend a friend’s birthday party in the evening. Trying to accomplish too much will cause over exertion and a fibro flare will result! I often make this mistake and then end up bed ridden for days to come.

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4. Illness. Even a common cold can create a flare up. People with fibromyalgia tend to have a cold or flu worse then people without fibromyalgia. Fibromyalgia can cause inflammation in the body and then add in a cold or flu that may cause further inflammation to form is unpleasant. I often wonder why when I get a cold it seems three times as bad then before my fibromyalgia diagnosis. According to my lab work my immune system is working as it should with no limitations detected , but yet it takes me longer to recover from the cold. Prevention is the key! Avoid being around other people who are sick.

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5. Lack of sleep. One bad night of sleep can cause a major flare up. This happens to me often as I have insomnia plus pain levels wake me up through out the night. Once I wake up, there is a slim chance of me falling back to sleep. For the last week, I have been waking up at three or four am, and then I can’t get back to sleep. It makes for a very long day. Even if I go to bed an hour later then I normally do the pain levels and chronic fatigue both hit a level of ten!

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6. Hormonal changes. Changes in hormone level can cause one to experience a flare. A women’s menstrual cycle, causes hormone levels to fluctuate. These fluctuations can be enough stress on the body to create a flare up! Thinking about it…is it really a flare up or does fibromyalgia just make a women’s menstrual cycle symptoms feel worse?!? I’ll let you be the judge of that question! I don’t really have the answer ro my own question. Just food for thought.

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7. Treatment changes. Adding new medications can cause a person’s body to react. Maybe the increased dosage your doctor prescribed caused some of your symptoms to get worse. I recently had a dosage increase of medication and I felt nauseated everyday for two weeks. I often get nausea, but this was worse. Even adding in a treatment pain such as light stretches can cause higher pain levels and fatigue to form. Any changes to your treatment plan causes stress to your body. The stress then is not tolerated well causing a flare up! I changed both my medications at the same time which caused extreme stress to my body. I probably should have increased each medication separately instead of at the same time.

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8. Travelling. For myself this is a major cause for a flare up. When we travel we have to sit in a vehicle or whatever means of transportation you take for extended amounts of time. This in itself is hard on your body. Sitting in a vehicle creates pain levels to increase which causes fatigue to set in from mentally enduring the higher pain levels. When you travel daily routines are also set aside for the day or even several days. After I travel I always go into a very bad flare up that lasts for days or even up to a week later.

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9. Individual sensitivities. This can range from certain scents, brightness of light, loudness or even triggered by an allergy. You may have other sensitivities. For myself I have become sensitive to scents. Stores that use sir fresheners or are using essential oils can trigger me to go into a flare. I have gone into several stores and had to immediately leave due to the scents. Loud noises is also a trigger for me.

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