Monthly Archives: February 2023

The Spoon Theory – What is it and how to use it?

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Have you ever heard of the spoon theory?! The spoon theory was created to help give a visual picture to help illustrate the energy limitations on people who live with a chronic illnesses ( which included chronic pain). The spoons represent a unit of energy. Every task you work at during the day uses up a spoon – depleting your energy reserve. Some tasks use more spoons then others. This theory not only helps people living with the chronic illness, but also helps those living without a chronic condition understand those who live with chronic illnesses.

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The spoon theory is usually based on a 12 spoon count. You begin each day with 12 spoons. If one doesn’t get a good nights sleep, forgot medications or even skipped a meal immediately take a spoon away. If you have a cold or are sick automatically take four spoons away. Imagine starting your day with limited spoons. How would you function?! For example, you have a cold bug, were too exhausted to eat supper the night before, forgot to take your evening medication and did not sleep well. That leaves you 5 spoons left for the day.

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I was introduced to the spoon theory in the fall of 2022. Before this I had never heard of this theory before. I wish health care providers would have shown me this theory long ago. We are often told to pace ourselves during the day, but most of us struggle with what pacing looks like when factoring in chronic pain. When given the visual aid of the spoon theory, we are able to understand how to be economical in how to spread and use our energy ( spoons) through out the day! I try to refer to this theory so I remember to pace myself everyday.

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To “replenish” spoons a person needs to rest or take breaks between tasks to allow energy reserves to build back up. Keep in mind, just because you rest between tasks, does not necessarily mean your energy will rebuild. If you are like me, once I hit my limit for the day, no matter how much I rest, my energy does not seem to rebuild. Example. If I clean the floors in the morning and then rest for a few hours, my energy is still not replenished by the evening. Even though I use pacing the day, I still find myself exhausted. To help replenish spoons practicing self-care can help restock your energy.

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Here are a few examples of what helps me replenish my energy ( your list will look different)

1. Music

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2. Resting in bed

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3. Reading

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4. Time with pets

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5. Puzzles

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6. I recently found a few guided meditation sessions that relax me so much that I am almost asleep at the end of them.

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There are many websites out there explaining the spoon theory in greater depth. If you need more examples of which tasks use how many spoons, I found looking under images on google have a lot of different visual aids with different tasks. For more information on the spoon theory visit: here.

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I asked! You shared! What advice would you give to a fellow fibrofighter!? 40 answers shared

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I asked the following question on many different social media platforms. “What advice would you give to a fellow fibrofighter?” I asked. You all shared. I decided to put together a post sharing all these wonderful ideas and tips. I hope those reading these can find some comfort, useful tips and feel understood.

1. Give yourself permission to take as many breaks as you need and don’t ever feel lazy or guilty about it!

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2. Slow down! Don’t push yourself!

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3. Give yourself time to grieve.

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4. Advocate for yourself.

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5. Adaption and acceptance are long term processes, they don’t come over night. You will develop routines that help you adapt to situations better.

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6. Know your limits!

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7. Having compassion for yourself is so important. Take things slowly and listen to your body.

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8. Learn to pace and read your body’s signals. This isn’t something anyone can teach you. It is something you have to figure out on your own. How much can you do in a day? How often you should take a break? How much exercise does your body needs and how much is too much? Only you can answer these questions!

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9. Breathe. Remember to breathe!

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10. Take it one day at a time. You have good days and bad days. Give yourself credit for what you can do and don’t beat yourself up over what you can’t do.

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11. It is okay to be frustrated by fibromyalgia. Especially since there is no cure. Don’t dwell on it, but allow yourself to grieve.

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12. Accept modern medicine will not cure fibromyalgia. Look at other aspects such as diet and exercise.

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13. We shouldn’t belittle another’s pain. We feel things a little differently then the average joe. Others may not have the same pain tolerance! What may bring the average joe to their knees is something most of us deal with on a daily basis. For them it is more shocking, dramatic and immediate.

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14. Don’t push yourself to the point of exhaustion, because that just makes it worse.

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15. Listen to your body. If it tells you to rest, then rest.

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16. Fibromyalgia is a long haul situation. Try to accept that now. I think acceptance makes life easier.

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17. Don’t be ashamed to use mobility aids if you need to! It does not mean it is the end of the world. Those aids are there to help us, not shame us.

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18. Find your new normal, slow your pace of life and say NO if you have to!

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19. You don’t have to fight all the time. Retreat and regroup!

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20. Be more purposeful with your days. By that I mean instead of just trying to get through them, try to be actively present throughout the day. Check in with your mind, body and surroundings often. Catching any off moments, can prevent the pain from getting worse.

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21. Look after yourself. Do things according to how you feel and how your body feels. Don’t pressure yourself and be patient!

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22. Keep up on electrolytes. We burn through them faster then people without fibromyalgia.

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23. Deep relaxation and meditation helps.

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24. You are not weak. Having to survive and get by in daily pain is something only tough people can do! Let the insensitive comments roll off your shoulders.

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25. Find new hobbies you can succeed it. It helps take your mind off the pain!

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26. Do something every day that warms your heart!

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27. Do your best, because that is good enough!

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28 . Do not give up. Pain is real. It is very tough, but not stronger then our hope!

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29. You don’t have to try to be positive every second of every day! It is okay to say, ” this is really S***. I can’t do this today and wallow. As long as it isn’t everyday!

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30. I tell myself, ” yes today is rough” and I allow myself to take it easy!

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31. Don’t try to do everything all at once. Don’t feel guilty or berate if you are not able to get things accomplished. Do listen to your body. Rest when you need to.

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32. Be patient and gentle with yourself. Remember every day is different.

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33. What works for one person might not work for someone else. Keep trying different things.

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34. You don’t have to validate your pain to others.

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35. Accept that a sofa day is not being lazy, it is healing yourself.

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36. Accept that not everyone will understand that your pain is real. Don’t worry about them, worry about you!

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37. Don’t be scared to ask for help. If people offer you help, don’t be afraid to accept it.

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38. Focus on what you can do, rather then what you can’t do! ad

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39. Don’t let family or friends push you into doing more than you can.

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40. Do not let fibromyalgia define who you are!

What I wish I knew early diagnosis of fibromygia!

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1. Learn to slow down and pace myself! Fibromyalgia requires you to slow down so you don’t cause a flare up to form! It also helps reserve energy. I wish I was told this earlier on. I could have prevented so many flare ups from forming. You may not get everything done that you wanted to in a day and that is ok. Learn to prioritize what is most important. There are many days where I have a list of things I want to get done. I may only get to one or two on the list.

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2. Health care providers stress self care with fibromyalgia! I wish I knew how important this truly is when dealing with chronic pain. Most times our lives get so busy to even factor in self care, but once you are diagnosed with fibromyalgia or any chronic pain condition self care becomes so important. Make sure to take the time for you! Even if you can’t manage to take say 30 consecutive minutes, I am sure 5 minutes is possible. I noticed once I started to take time for me to wind down or relax my pain levels stay a bit lower.

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3. I wish I would have known how important self advocacy was earlier on! I was always too scared or shy to speak up. After 3.5 years I have learned to use my voice! After all, we know our body best and know what may work and not work by gaging from our limitations. I feel by not speaking up sooner, I have now gotten labelled as being “difficult” by many health care professionals. It is not that I am difficult, I now know what works and what doesn’t. Repeating failed treatment routes is not where I want to find myself. It only causes frustration and anxiety to form!

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4. I wish I knew that there was more to fibromyalgia then just chronic pain! When we see the list of possible symptoms that can occur along side fibromyalgia, we often think it isn’t possible. Reality is it is possible! As the months pass, I often find myself dealing with a new symptom.

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5. Fibromyalgia is not a uniform condition. Everyone’s fibromyalgia journey will look very different! What works for some people, will not work for others. Do not compare yourself to others with fibromyalgia. This is not how the condition works. Remember, your body does not read like a textbook. Just because a symptom or solution is listed on a site or book, doesn’t mean it will be successful! Keep exploring ideas for relief if one option fails. I have watched several attempts fail, but I keep searching for something new to try!

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6. I didn’t realize I would grieve my diagnosis before I could accept it! Fibromyalgia is a very debilitating condition with no cure. It took me three years to come to terms with the fact that my life is very different now. Fibromyalgia takes a-lot away from a person and you need to learn to accept and adjust to the new normal! Don’t feel weak if you are grieving. Grieving does not make you weak!

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7. That I would come across many people who do not understand fibromyalgia. There will be many insensitive comments and gestures be made. Remember, it is lack of knowledge and understanding fibromyalgia at work here! Many doctors and health care providers don’t quite understand fibromyalgia themselves. Friends and family may make remarks that are hurtful and insensitive! Try to share information you know to be true about fibromyalgia to help educate people around you – to be able to somewhat understand the condition!

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8. How exhausting fibromyalgia actually is. We are always told that fatigue is a symptom of fibromyalgia, I never realized how much fatigue would control my life. The exhaustion is not simply just being tired. It is a complete life altering fatigue to the point where it can become difficult to take care of your basic needs. Early diagnosis I had fatigue, but it has gotten worse over the years. Every task no matter how small it is, just drains every last energy reserve I had built up!

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9. I wish I would have known how important it is to listen to my body. As the saying goes your body never lies to you! If your body is telling you to rest, then rest. It is what it needs at that moment. We learn that being in tune with our body becomes an important survival mechanism needed when dealing with fibromyalgia.

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10. I wish I knew the amount of strength it requires to push through each day living with fibromyalgia. We are often thought to be weak because we can’t handle the pain levels. It is actually the opposite. It takes alot of courage and strength to live everyday in extreme pain levels and actually succeed to get at least something done in 24 hours!

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

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

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

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

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

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

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

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

Fibromyalgia and sound sensitivity. Why do sounds become difficult to deal with? Is brain inhibition responsible?

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Before being diagnosed with fibromyalgia noise rarely bothered me. Working in a school you learn to ignore all the different sounds. Since my fibromyalgia diagnosis, sounds begin to bother me more and more. People who live with fibromyalgia are hypersensitive to muscle, joint and widespread pain, but research is revealing hypersensitivity to sound as well.

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For myself I find noise can create many emotions to arise. These may include:

1. Feeling annoyed

2. Feeling anxious

3. Feeling panic

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Other symptoms I experience:

1. Pounding heart

2. Tightness in chest as anxiety increases

3. Headaches may appear

4. Increased pain levels

5. Sounds feel like they echo within my ears

7. Loss of concentration

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There are a few theories to why people with fibromyalgia develop sound sensitivities. In one study, researchers had people with fibromyalgia listen to certain sounds through earphones and they were asked to rate the sounds based on how mild or severe they sounded. The study also had a group of participants without fibromyalgia do the same. Three different stimulus intensities were used. The participants with fibromyalgia required less sound pressure to report similar loudness ratings then people without fibromyalgia. The conclusion of the study showed people with fibromyalgia are more sensitive to sound and reported lower volume sounds to be more intense.

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Most times we are often told the sensitives are just “in our head”. However studies such as the one described above are proving this to be wrong. Studies are beginning to reveal that it is most likely due to nervous system problems. Our nervous system makes people with fibromyalgia perceive sound more severity then those without fibromyalgia. More research is still needed.

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A second theory has to do with brain inhibition. I had never heard this term before. Inhibition is when our brain filters out things that are unimportant. Easiest way to understand it is imagine our brain has a noise cancellation function – almost like a set of headphones with noise cancellation. For example you may be working in your office and the florescent lights may be making a loud buzzing noise. Usually our brain inhibition eventually stops us from hearing the buzzing noise. However, experts explain that people with fibromyalgia will lack inhibition – which means we have a difficult time tuning out sounds. Our senses will bombard our brain with so much information and our brain can’t handle it! Our bodies react from over stimulus. We may be unable to concentrate and we forget what we are doing. Anxiety or panic attacks can even form – pounding heart, sweating,dizziness,etc. This creates stress to form within our bodies which make pain levels of fatigue get worse!

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I am still learning to deal with the sound sensitivities. I am still working at identifying which sounds trigger me. I can identify most of my triggers, but the sounds still irritate me and cause my anxiety to rise. I read one strategy is to work on lowering the symptoms of anxiety and panic before a full blown anxiety/panic attack is set off. If you need guidance in how to lower anxiety, there are many excellent Youtube videos on anxiety management. If in doubt, I would recommend speaking to your doctor or a psychologist who may be able to guide you further!

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There are a lot of situations I may avoid to prevent having to deal with some of the sound sensitivities or alter my routine when possible. I often go to the store earlier in the day to beat the loudness or go out for dinner slightly early to avoid the overwhelming restaurant hustle. When I attend the pool to swim, I often go when the pool has a quieter atmosphere. They set aside certain hours dedicated for those who live with sensory issues. Sound sensitivity can be manageable if using the right strategies. I believe there may be cognitive behavioral therapy strategies out there to help one cope with living with sound sensitivities. I am still researching how to manage my own noise sensitivity!

People with fibromyalgia may also be sensitive to light, smell, heat or even to tactile. To prevent my blog post from becoming to long and overwhelming I broke it down. I will write another blog on other sensitivities later on!

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Fibromyalgia and osteoarthritis (OA) – Is there a comorbidity between the two conditions?

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Three and a half years ago I never thought I would be being diagnosed with fibromyalgia. Now here in 2023 I find myself being diagnosed with osteoarthritis. Both fibromyalgia and osteoarthritis are chronic pain conditions. Fibromyalgia in itself is debilitating enough. Experts share that fibromyalgia often co occurs with some form of arthritis. In a study 88.7% of participants reported chronic joint pain/degenerative arthritis along side their fibromyalgia. Read more here about the study!

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I found out last spring that I have osteoarthritis in my neck. My neurologist had ordered a cervical neck MRI which revealed arthritis. I always thought the neck pain I was experiencing was all fibromyalgia pain. When I found out I have osteoarthritis in my lower back as well, it came as no surprise. If osteoarthritis is found in one area of the body, it is most likely in other areas of the body too! My doctor suspects I may have OA in my finger joints and knees as well. Osteoarthritis has no cure. The belief is that OA often gets worse over time- but not in all cases. Experts say lifestyle measures such as exercising, maintaining a healthy diet/ weight, or attending physiotherapy sessions can help relieve pain and possibly slow progression. However, when you factor in fibromyalgia it complicates osteoarthritis greatly.

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Fibromyalgia and osteoarthritis are two separate conditions. the coexistence of both together can make the symptoms of each condition worse! Both conditions have overlapping symptoms such as stiffness, pain and limited range of motion.

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Fibromyalgia causes the brain to misread pain signals. In my case, my fibromyalgia makes my osteoarthritis pain feel worse then what it actually is. Technically my OA is considered mild, but I’ve had several doctors tell me that I am most likely feeling the pain at moderate to severe pain levels. For example, the arthritis is my neck causes severe pain to form leaving me unable to turn my head or even lift my arms. The pain radiates into my shoulders and upper back limiting my range of motion in all areas. Fibromyalgia tender points are often seen in the neck and upper back as well. Adding the pain from both conditions can become very debilitating.

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Fibromyalgia and OA both report sleep disturbances. Fibromyalgia rarely left my lower back and hips with pain. When the pain got unbearable I knew something was not right. The lower back and hip pain would continuously wake me up through the night. It was impossible to find a sleep position that wouldn’t exacerbate the pain. I already suffer with insomnia from fibromyalgia,` then the OA pain made sleeping even harder. Research states 70% of people with OA have a sleep disturbance. Cortisol ( hormone that helps control inflammation) levels in your body also drop through the day and are the lowest at night. When cortisol levels are low more inflammation takes place causing pain and discomfort to result. Read more about how osteoarthritis impacts our sleep here.

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Mental health issues can also be seen in people with fibromyalgia and any form of arthritis. Anxiety and depression are two examples of mental health issues that can form. No matter what mental health condition you are faced with, it adds extra stress to your body causing more pain or higher pain levels to be felt. It is know that mental health conditions can lower one’s pain threshold even lower. In return, the chronic pain being felt will cause higher levels and anxiety to form even more. It becomes a vicious circle! Learn more about how arthritis can impact your mental health here.

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How to limit pain levels in both fibromyalgia and osteoarthritis

1. Massages are often recommended for both conditions. Massages may help relax tense muscles which will reduce pain. In osteoarthritis, massage can help reduce swelling, improve joint mobility, and provide stress relief! If you can handle hands on treatment routes you may find this helpful!

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2. Drink plenty of water. Dehydration can cause muscle cramps. Fibromyalgic muscles are tense. Adding dehydration on top can exacerbate the pain. Water helps the muscle flush out toxins that need to be removed. Same goes with osteoarthritis – water helps flush out body toxins and can help fight inflammation and hydrated cartilage helps reduce friction between bones ( move easier) .

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3. Swimming or walking in water. Swimming has been proven to help both conditions. Water exercises are easier on your joints and muscles then dry land exercise. Swimming will also help stimulate blood circulation and can help reduce muscle stiffness and ease pain levels. Experts state that the water provides resistance that helps boost your strength and over all range of motion!

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4. Walking. Walking has been proven to help both fibromyalgia and osteoarthritis. With both conditions, we need to continue to stay active to prevent muscle/joint stiffness or loss. Even if you can only handle walking for one minute, it will help. Slowly build yourself up in walking time. My max walking time most days is 15-20 minutes at a time. I pushed myself on a walk yesterday and I almost had to send someone home for a vehicle. Walk within your limits! Walking is considered a low impact exercise, which is recommended for both fibromyalgia and osteoarthritis!

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5. Heat. For many of us applying heat to our aching bodies help relieve fibromyalgia pain. Osteoarthritis pain can also be relieved with heat. Heat can be very effective to help relieve stiffness of the joints from inactivity!

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I am sure there are more strategies out there to help combat fibromyalgia and osteoarthritis. I am currently working along side a physiotherapist to help gain some strength and mobility back. I am also seeing a psychologist who is helping me find routes to help lesson my pain levels. I have only just started my journey with both these health care providers, but I have a feeling both treatment routes will be very beneficial!