Tag Archives: chronic pain

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 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!

According to experts adding vitamin/mineral supplements in may help reduce fibromyalgia pain and symptoms! Vitamin deficiency often accompany fibromyalgia.

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Before I got diagnosed with fibromyalgia my vitamin levels were perfectly normal. As the years pass, my vitamin levels continue to drop. I do know aging can causes our vitamin levels to be lower, however I believe fibromyalgia has played a part in my vitamin levels dropping fairly low. Research actually proves fibromyalgia can lower certain vitamins in the body, which may make fibromyalgia symptoms worse. There are actually theories out there that vitamin deficiencies are partially responsible for fibromyalgia development. I recently had blood work done and a I have learned a lot of my vitamin levels are extremely low.

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Iron

Having low iron levels can either mimic or possibly contribute to heightened fibromyalgia symptoms. Women with fibromyalgia are more likely to have iron deficiency. Low iron can cause extreme fatigue to form. For those of us with fibromyalgia the chronic fatigue, muscle/joint pain, headaches, weakness, further decreases endurance levels and sleep disturbances may all heighten, as low iron levels can cause all theses symptoms to arise. Having low iron can also cause a person’s pain threshold to lower and increasing pain sensitivities! I’ve had lower iron levels for some time now, even with iron supplements. I now wonder if low levels of iron are causing some of my fibromyalgia symptoms to feel worse.

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A study done in 2010, revealed that there appears to be an association between ferritin levels and fibromyalgia. People with fibromyalgia tend to have lower levels of ferritin then those without fibromyalgia. Ferritin is responsible for storing iron in the body. For myself my ferritin level has remained stable. This study is older, but as far as I know there has been no current study done. Here is the link for the study.

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You can read more about iron deficiency here.

Calcium

Studies reveal people with fibromyalgia often have a calcium deficiency. Calcium is the main content in bones and joints and is important in muscle contraction. Low calcium can cause muscle cramps, fatigue, lack of energy and can also lead to insomnia. In fibromyalgia our muscles remain tight and have a difficult time relaxing and contracting. Adding a calcium deficiency on top of fibromyalgia can possibly heighten the tight muscles and other symptoms. Here is a short article about fibromyalgia and calcium deficiency.

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You can read more about calcium deficiency here.

Magnesium

Magnesium plays a crucial role in our bodies – muscle and nerve functioning and energy production. Magnesium deficiency is associated with muscle cramps, fatigue, sleep disturbances, and anxiety. Again the result of a magnesium deficiency are all the common symptoms of fibromyalgia. Women with fibromyalgia are often seen to exhibit lower magnesium levels. Magnesium supplements are often recommended to help relieve fibromyalgia pain and other symptoms. Ever hear of Epsom salt?! You can purchase it at a pharmacy. Magnesium is the main ingredient in it. We are often told to soak in a tub with Epsom salt to help relax muscles. It is said that Epsom salt will be absorbed through our skin as we soak in the bath. However, this theory has not been proven. For myself Epsom salt makes me feel nauseous after. Doctors always told me it was because my body absorbs too much magnesium. You can read more about Epsom salt here.

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You can read more about magnesium deficiency here.

Vitamin d

Vitamin d deficiency is frequently seen in people with fibromyalgia. It is common to have lower vitamin d levels during the winter months. We produce vitamin d when sunlight hits our skin. There are many symptoms of vitamin d deficiency. Some symptoms include muscle cramps/soreness body aches, fatigue/weakness,exhaustion and decreased endurance – which overlap with fibromyalgia symptoms. A study revealed people with fibromyalgia who used vitamin d supplements reported reduced musculoskeletal pain and helped improve their quality of life. You can read more about the study here.

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You can read more about vitamin d deficiency here.

One can try to up their iron, magnesium, calcium and vitamin d thorough your diet to try to raise the levels. For myself, I have decided to add in supplements as it can be rather time consuming to keep track of it through diet alone. You can discuss with your doctor how many mgs of each supplement you may need to take. The supplements can be found in many different dosages. You can even consult a pharmacist to help guide you.

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People with fibromyalgia can develop trochanteric bursitis – which results in swelling and hip pain.

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Have you ever heard of trochanteric bursitis? It is common condition that can form in people who have fibromyalgia. Trochanteric bursitis affects the fluid filled sacs (bursae) found between bones and soft tissues of the joints. The outer lining of the bursae becomes inflamed. I have recently had a lot of hip pain through the night, which prevents me from sleeping. No matter what position I try to sleep in, both hips ache with pain. I decided to research ” fibromyalgia and hip pain – and trochanteric bursitis was the first condition that showed up on my browser. After reading about bursitis – it sure sounds like this could be what I am experiencing. I will be getting it checked by a doctor in then near future.

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What are the symptoms of hip bursitis?

  • Joint or hip pain
  • pain in the hip , buttocks and thigh
  • Pain when laying on the affected side ( in my case it is both sides)
  • May have soreness when you push on your hip area
  • Hip pain taking part in certain activities
  • Pain when you walk up stairs
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For myself I find my hip pain worse when I am trying to sleep. I tend to sleep on my side, so there is always pressure on my hips. I wake up with one hip sore, so I switch to the other side. It eventually wakes me up from being so painful. It is a dull aching. I spend half my night trying to get comfortable. I even try to sleep on my back, but after I have pain on both sides of my hips, even that is too painful. My hip pain is not consistent, but I go through periods where it remains painful for weeks. By morning, it is difficult to stand up out of bed and aches on and off all day.

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Treatment of bursitis often requires one to rest and allow the swelling to subside. This is the most important part of healing. One must avoid activities that could make the bursitis worse. If you do not, the recovery time may become longer. Icing the areas will help the pain levels and help decrease inflammation. I did read you can use heat later on. Over the counter anti inflammatory medications such as naproxen can be used. Your doctor may even prescribe a prescription anti inflammatory. If you are able to add in stretches, it is recommended. People who suffer from bursitis often have a tight IT band. Fibromyalgia itself can also cause a tight IT band due to the muscle tension. If the above treatments fail steroid injections or surgery may be considered.

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When I speak to my doctor next week, I will have her assess me to be sure it is bursitis. I have been reading that bursitis and osteoarthritis can be mistaken for each other. I do know I have arthritis starting in my neck, but I’m unsure about my hips. My hip pain has only become a major issue in the last several months. I rarely had hip pain before this. The hips can also be a tender point area for fibromyalgia pain to attack. Always be sure to speak to your doctor first. Don’t assume it is automatically bursitis.

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Here is A link about bursitis and fibromyalgia!

https://www.news-medical.net/amp/health/Fibromyalgia-with-Bursitis.aspx

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Experts reveal people with fibromyalgia do not remain in deep sleep long enough to benefit the body!

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For those of us with fibromyalgia, we soon realize we do not sleep like we used to. Our sleep patterns change overtime. Most people with fibromyalgia eventually develop sleep disturbances. Do we really stop to think about what changes our quality of sleep?!

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People with fibromyalgia develop sleep patterns that remain choppy, inconsistent and leaves us feeling unrefreshed when we awake. Obviously chronic pain through out the night can continuously wake us up, but there is scientific proof showing people with fibromyalgia experience inadequate deep sleep. When we lack deep sleep, we may experience daytime fatigue, impairments to cognition such as slower thinking, reduced concentration and even muscle pain!! We experience sleep deprivation. A healthy person experiences a predictable sleep pattern -entering into each stage of sleep for so long and in a specific order. Deep sleep is the most important of all the sleep stages that take place.

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According to research, people with fibromyalgia do not spend much time in the deep sleep stage. The deep sleep we do get is often interrupted by “wakeful” brain waves that are normally only seen in a wakeful brain – known as alpha wave intrusion. The alpha wave intrusion seems to be connected to the stress response center. In healthy individuals the alpha waves are not active during sleeping. However, the alpha intrusions remain active in people with fibromyalgia, waiting to fight off a threat. This information takes us back to the flight or fight response. Our alpha brain waves are stuck in the fight response and “sleep with one eye open”. In 1975, Dr Moldofsky, was able to induce fibromyalgia muscle pain and fatigue in healthy college students. After a few nights of sleep deprivation, muscle pain and fatigue resulted. Both symptoms went away after they got deep sleep again.

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As we fall into deeper stages of sleep, our muscles cleanse themselves of metabolic debris. Experts state that in fibromyalgic muscles, there is an overabundant amount of “leftovers” because our muscles are constantly contracted. The contracted muscles do not allow for restorative rest needed to cleanse the muscles at night. Our brain also self cleanses itself while in deep sleep – removing harmful toxins. The build up of debris can possibly cause muscle twitches, pain and weakness to form.

Read more about deep sleep here.

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Doctors may suggest using medications that help a person stay in the deep sleep stage longer. I won’t list medication names here as depending on where you live, each medication may or may not be approved. I would advice you to speak to your doctor for more information. You can also work on practicing strategies to get a good nights sleep. You can find the list in my previous blog here.

https://fibrofighter.ca/2022/11/07/fibromyalgia-and-insomnia/

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What I took for granted before I got diagnosed with Fibromyalgia!

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Being able to get out of bed. Before being diagnosed with fibromyalgia, I always wished I could stay in bed just for ten more minutes when my alarm rang. When you live with fibromyalgia you soon learn just finding the courage to get out of bed every morning becomes overwhelming. Some days I get up and I find myself back in bed an hour later because sitting on the couch is painful, movement hurts and is unbearable or I cannot function at all. The chronic fatigue and pain can become very debilitating!

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Being able to shower and personal hygiene. Before I was diagnosed with fibromyalgia a shower was refreshing, a way to wake up and relaxing at the same time. Showering never felt like I was using any energy. Now, showering can be painful and exhausting. The longer I stand in the shower – my legs begin to ache and my feet and toes hurt with jumping pain. I never know where the pain is going to hit next. Washing my hair makes my arms ache, feel heavy and my fingers begin to cramp up. I often get out of the shower feeling absolutely exhausted and find myself laying back in bed to recover! I never thought I wouldfind myself having to rest after showering. Some days even brushing my hair hurts. The brush touching my scalp can cause pain and if I comb over a few knots in my hair it can trigger my brain to send out migrating wide spread pain through-out my body! Even brushing my teeth can hurt at times. My hands may cramp up and ache, and my back begins to throb from standing in front of the sink

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Being social. I was never an overly social person, but I still went out to visit friends. Living with fibromyalgia I have become a home body. I do still try to keep in touch with friends through text or a quick call. I do miss going out for dinner, concerts or just hanging out in general. Being social and interacting with others when living with chronic pain can become exhausting. Even carrying out a conversation is difficult at times as I suffer from brain fog and often search for my words.

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Sleeping without any issues or waking up feeling refreshed. Since I got diagnosed with fibromyalgia I have not been able to get a decent night sleep. I took part in a sleep study which revealed normal findings. The pain constantly wakes me up all night long, or insomnia decided to attack. I often lay in bed and experience “painsomnia”. – exhausted but in too much pain to sleep. Even when I do manage to get a full night rest, without waking up I wake up feeling exhausted and I can’t function!

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Grocery shopping. Before fibromyalgia, I used to automatically go grocery shopping every Saturday or Sunday morning to prepare for my busy week ahead. It just becomes a routine. Now to find the energy to drive to the grocery store is hard enough yet alone shopping. I have a difficult time pushing a grocery cart once it begins to fill with food. It absolutely exhausts me. After walking two or three aisles, the chronic fatigue sets in and it feels like I am dragging fifty pound weights behind me. I often have to rest the after shopping. Some times I can recover other times it becomes a movie day because shopping has proven to be too much.

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Standing and walking. We learn at such a young age to stand and walk. As adults, it just comes naturally. I was one of those people who was not in a rush to get my drivers license as I grew up in a small town where walking everywhere was feasible. I used to walk to the stores, work ect. Being diagnosed with fibromyalgia, I am lucky to make a 15-20 minute walk. My feet hurt when I stand and I get major pain in my back. I miss just being able to go for daily walks.

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Being able to work. Most people can’t wait for a day off of work to rest and just relax. I was like that before fibromyalgia. Now, I wish I could work! I’ve had to remain off of work due to the forever changing symptoms , pain and fatigue. Fibromyalgia is unpredictable! I miss socializing with coworkers, providing for myself and being independent. I do count myself lucky as I receive disability, but when on disability it is a fixed income that is lower then what I would make working full time! Cost of living continues to increase, but my monthly income remains the same.

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Being able to be physically active. I used to be someone who was always on the go – biking, hiking, walking ect. Now, I have a difficult time walking up a set of stairs or taking a walk for even 15 minutes. The first thing doctors or health care providers tell someone with fibromyalgia is to exercise. How do you exercise when you do not have any energy to do it?

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Being able to travel. Before fibromyalgia took a front seat in my life, I was spontaneous and travelled all the time. Now travelling takes alot of preplanning. It is exhausting having to imagine every single scenario that could cause chronic pain to increase or go out of control. I find even driving 10 minutes too much for me these days.

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Cleaning and laundry. We all hate cleaning and laundry! However it is part of life. When you factor in fibromyalgia, both tasks become overwhelming. I often try to break up cleaning into smaller tasks to make it manageable. After I vacuum and wash floors I am struggling with lack of energy, major fatigue and pain through out my body or stop many times to rest. I often find myself having to lay down for several hours after. Folding laundry causes my finger joints to ache and my arms feel like they are on fire. I have found myself hanging most of my clothing in the closet to avoid folding so many articles of clothing.

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Eating without pain. Eating a meal when you live with chronic pain can be challenging. Most times we eat and don’t really think about it. For myself I developed TMJ and my jaw hurts and locks if I bite down wrong or if I attempt to eat certain foods. I am often left with jaw pain after every meal. Some days even eating with a fork or spoon creates pain. To grasp the cutlery may cause my hands and finger joints to ache. I have been telling health care providers lifting food to my mouth and chewing the food makes me exhausted.

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Invisible Documentary on Fibromyalgia – What do the doctors say in their interviews? What I found interesting.

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I recently watched the newly released documentary on fibromyalgia – “Invisible.” produced by Nick Demos. The interviews with the individuals living with fibromyalgia did not surprise me – being I live with fibromyalgia myself and completely understand their struggles. What it did show me was that people all over the world with fibromyalgia do struggle with many of the same hardships. What I found interesting was the information presented by the doctors and wellness coach in their interviews.

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Dr. Liptan was interviewed in this documentary. She got diagnosed with fibromyalgia during medical school, has treated patients with fibromyalgia and now focuses her attention to research on fibromyalgia. She stated she feels we are 50 years behind in regards to fibromyalgia knowledge and treatments. Yes, you read that right, 50 years!!! In fact, she presented a time line of fibromyalgia. Did you know there was a 35 year gap on research or discovering anything new in regards to fibromyalgia!? We all know that there is lack of research, but I never thought there would be such an enormous gap between discoveries on a condition that is being diagnosed more and more. The first FDA approved medication to treat fibromyalgia was not even released until 2007! Reality is that wasn’t very long ago seeing as fibromyalgia was being diagnosed way before 2007! Liptan explains that she feels that fibromyalgia should be considered a disease, not a syndrome. She believes this because there is proof that there is consistent changes in the brain and body.

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Timeline of Fibromyalgia- Not the exact one presented in the documentary.
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Dr. Liptan also shared her thoughts about insurance companies and how they only pay for certain medical routes. Most support people with fibromyalgia need, is not covered by insurance companies – vitamins, maintenance appointments such as acupuncture, massage, myofascial release, ect. Dr. Liptan states insurance companies will pay for MRIs and expensive medications, but all she wants in some cases is to see insurance pay for a gym membership. It does make sense. I was told from day one I should utilize the gym, but I can’t afford to pay for a membership. Same goes with swimming – all the doctors I saw recommended swimming as a treatment option for fibromyalgia as it is a low impact exercise. However, who can afford a membership? Even a monthly membership to the pool can get costly not to mention the money spent on gas to travel to and from the rec center. In my case, the pool is on the completely opposite side of the city then I live.

Dr. Liptan – Author of the Fibro Manual
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Tammy Stackelhouse, who is a fibromyalgia coach and also has fibromyalgia herself was also shown being interviewed by Nick Demos in Invisible. Demos and Stackelhouse converse about how many people can’t afford the holistic treatments that insurance either has a cap on how much they will cover yearly or simply do not cover these treatment options at all. Nick asks what happens then!? I know many people who can’t afford treatments being recommended to them such as yoga, massage therapy, acupuncture..the list goes on – especially with cost of living continuing to increase! I know there are many yoga, tai chi, ect. self directed videos online, but when you factor in chronic pain, it is not as simple as taking part in these follow along videos. There are a lot of other aspects to consider when dealing with chronic pain – which many of us need the guidance with, but don’t receive. Stackelhouse’s response is very realistic and hit me hard emotionally. She states, ” There is not a-lot of hope!” People in these difficult situations – of not being able to get treatment because they can’t afford these routes – “are probably not living really.” In my own struggle with fibromyalgia I often told my doctor I felt I was only existing and not living anymore. When we wake up with chronic pain – pain that hits levels of 10 that lasts all day long and go to bed in pain it makes life unbearable! No one wants to live life trying to “survive” instead of enjoying life, but for many of us living with fibromyalgia that is reality.

Tammy Stackelhouse – Fibromyalgia wellness coach
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Stackelhouse explains there is a hopelessness in the fibromyalgia community. How true this statement is. I think all of us who live with fibromyalgia feel hopeless at some point during our journey! How can we not!? We get diagnosed with fibromyalgia which currently has no cure and then we are often left on our own without guidance to figure out how to limit our chronic pain. We are left to adjust to life with fibromyalgia. Many of us may even feel like we have “lost our identity” – of who we are. Through our journey we encounter doctors who believe fibromyalgia is not real and we are often told to get used to it as this is now your life. I recently had two back to back experiences with doctors who I believe do not believe fibromyalgia is a big deal. I got dismissed stating I was not sick and got told my anxiety was the cause of why I was not feeling well. These doctor visits were not even fibromyalgia related.

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Demos also gets diagnosed with fibromyalgia while filming the documentary. He visits Dr. Melissa Congdon ( who has fibromyalgia herself and treats many patients with fibromyalgia) who conducts a physical exam to look for a specific pattern of muscle spasms or swellings. I found this interesting information so I decided to do some research on Dr. Congdon. On her website she refers to Dr. St. Amand – who has examined over 10 000 patients with fibromyalgia. He noted in every exam – every patient had muscle spasms and swollen places ( he calls these nodules) scattered pattern like though out the body! 100% of the patients examined had nodules in their left anterior thigh. He believes if someone has nodules in their left anterior thigh they have fibromyalgia. I had never even heard of this theory. Why isn’t this way of diagnosing fibromyalgia used by doctors and specialists!? Is there not enough proof ? Or are doctors, specialists and health care providers just not aware of the information!? I don’t have the answer to this. Again, food for thought!

Dr. Congdon and Dr. St. Amand

I would recommend watching the documentary Invisible! It was put together well and very informative! You can rent it on Vimeo.

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How owning a dog can help people with Chronic Pain – such as fibromyalgia!

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When we have a chronic condition we often wonder how we will manage the responsibilities that come along with owning a pet. However, did you know pets can bring a sense of comfort for people living with fibromyalgia. Since I have dogs, I will focus my blog post around dogs. Dogs are often referred to as “mans best friend” for a reason!

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People who suffer from fibromyalgia can become isolated from those around them. Owning a dog can provide companionship. A dog can’t hold a full conversation with you like another human, but can help ward off loneliness. If you own a dog and you are like me, you will find yourself talking to your dog!

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Owning a dog can act as a distraction. No matter how much pain you are in, a dog always needs attention- Whether that is to feed, bath, throw a ball ect. My dog is still younger and gets acting silly. She races around the house acting like something is chasing her. It makes me laugh and takes away my focus on the constant pain I feel or any other fibromyalgia symptoms I may be dealing with. Even just sitting on the floor playing with my dogs helps distract my mind.

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Experts say that just ten minutes petting a dog can help lower stress levels. We all know that stress heightens fibromyalgia pain and symptoms. Apparently as you pet and interact with your dog, the stress hormone cortisol significantly drops. The drop in cortisol levels, lowers muscle tension that may be contributing to pain levels. Experts also report increased oxytocin hormone levels are seen. The oxytocin hormone seems to have pain reducing potential! Dogs are used for pet therapy for this reason!

Here is a study done on dog therapy and fibromyalgia! Click here.

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Owning a dog makes you have to get up and move/exercise. Even if you are only moving to let your dog outside – it still is movement! Often dogs will need a walk to help burn off energy. While taking the dog for a walk, you too are exercising! Even if it is just a 5 minute walk- you are still moving. Movement is important for fibromyalgia.

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There are instances where an individual living with fibromyalgia may qualify for a service dog. Service dogs are trained to help with many tasks. They can be trained to bring the person different objects – even medication. Some people with fibromyalgia experience balance issues and may walk with a cane. A service dog may be trained to retrieve a dropped can that the individual cannot pick up themselves. Service dogs are also trained to open and close drawers and doors and even bring clothing. The benefits of having a service dog are endless. These are just a few examples.

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Here are a few pictures of my fur babies!

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Having a chronic illness/condition is a full time job!

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If you have been forced to remain off work or given up your career due to a chronic condition, people often assume you don’t work! Having to live daily trying to manage the condition can actually become a full time job! A chronic condition is just that- chronic. There are many aspects that need addressing when you live with a condition that can become debilitating like fibromyalgia.

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Before we even get a diagnosis we are often already adjusting life so we can function better. As we slowly adjust, we sit and wait for answers. Fibromyalgia is not an immediate diagnosis and is a process. We wait for tests to be completed, referral letters to be accepted and in general waiting for answers to why we hurt so much. Waiting can actually become a full time job in itself. You must be prepared for any upcoming appointments. As we prepare and wait for these appointments we keep on adjusting our lives to be able to get through the days the best we can.

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Once diagnosed or even before, we have to learn how to live with a chronic condition. The life we once knew is no more and a new ‘normal’ needs to be found. One must learn their limitations and adjust life around those limitations. This is not an easy task! Nor does it happen overnight. It takes time. When you finally think you have it figured out, fibromyalgia decided to throw you an unexpected curve ball to knock you off track. New symptoms can arise daily and we are left scrambling trying to figure out a possibly remedy.

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Self advocacy takes a-lot of time, preparation and energy. Do you know how many hours I have spent writing down medical information to share with doctors?! Too many to even remember! There are many questions to ask doctors or specialists, symptoms to be logged, medication lists, possible treatment routes, ways to lower pain….the list goes on and on. If we don’t advocate for ourselves who will!

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Medication management. My medication list seems to grow longer and longer every year. It used to bother me that I had to be on so many medications, but I decided if I can function why should I be ashamed for using these medications!? I often thought people would think I was just a “drug addict”. Believe me, I tried to go medication free at the beginning of my fibromyalgia journey. The pain was too excruciating! I have daily medications I have to remember to take. I have to continuously manage how many days worth of medications I have left so I do not run out. When I go to the pharmacy, I often tell the pharmacy staff this is my second home as I’m there so much picking up medications and speaking to the pharmacists. Most medications I use leave behind side effects. These side effects also need managing. I may take medications to manage my pain, but these meds may leave behind numerous side effects to deal with.

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Having to manage 24/7 symptoms can become exhausting then to add in a flare up makes managing pain even more complicated. Most of us learn to manage our flare ups, but there are times where our flare ups appear and we are left scrambling to find new strategies to try to find relief. Even on our most excruciating pain day there is no break because we have to always “troubleshoot” our own bodies. A strategy used yesterday may not help the next day! It is rather exhausting to always try to manage chronic pain.

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Managing mental health. Often times when we are left dealing with a chronic illness, our mental health can become rather low. I know for myself I developed an anxiety disorder. We must learn to lower stress levels, anxiety and depression. High stress levels contribute to fibromyalgia flares and increased pain levels. We may need to take time through out the day to complete calming exercises to help lower stress and pain levels.

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Attending weekly appointments or treatments. Often times we are encouraged to attend a program such as a pain clinic. Appointments can possibly be daily (Monday to Friday) depending on how your program is set up. You may be required to work with a kinesiologist one day, psychiatrist the next day and so on. Attending the appointments can be exhausting and leave us with higher pain and symptoms to manage after the fact.

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Make sure to rest. People with a chronic illness such as fibromyalgia need to be sure to pace and rest when needed. Resting doesn’t sound like a hard task to do, but when it comes to fibromyalgia it can be. You need to learn to stop and rest at certain times. I decide when I need to rest from fatigue levels and pain levels. If I am cleaning and all of a sudden I notice dark bags under my eyes form, I know I need to stop and rest. If I do not, a flare up begins to start! Again this can be quite time consuming to be able to predict when to rest appropriately.

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Researching. Fibromyalgia is not well understood. Some doctors have a great understanding of fibromyalgia while others do not. I often find myself researching a lot on my own. Knowledge is power. Arm yourself with as much information as you can. Researching when you have a chronic illness that is forever changing daily can take up alot of time.

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