Monthly Archives: November 2022

Medical Gaslighting

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Have you heard of medical gaslighting!? Medical gaslighting happens more often than we think, people just don’t seem to talk about it. We may not realize at the time, that we were being gas lightened by our medical providers, but after reading about medical gaslighting, take a step back and evaluate your appointments to see if you think you have been a victim in the past. When someone is experiencing medical gaslighting the doctor or healthcare provider may dismiss concerns about your health, or you are not being heard and taken seriously. Some health care providers may even deny a patient’s diagnosis entirely. Looking back over the years, I have been medically gaslighted a few times.

There are several warning signs to know if you are being medically gaslighted.

1. Your appointment is rushed once you enter the room. If you do not get time to explain why you are there and you are rushed to explain your symptoms it may be a warning sign of gaslighting. I know most appointments are often very limited on time, but when you are in the room with the doctor you should not be rushed. You should be given the allotted time allowed for your appointment. You are not just a number; you deserve the doctor’s full attention – after all it is your health. The time you do have with the doctor or health care provider – use your time wisely and prioritize what is most important to discuss. If you are like me, I often run out of time before I have mentioned half of what is on my list, but I go back another day for another appointment and pick up where I left off on my list.

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2. Your symptom list is not being taken seriously. Doctors should never dismiss symptoms you ask about, no matter how small the complaint may be. It could be a warning sign of a much bigger medical issue later on. I don’t know about you, but I’ve had this happen several times. As with fibromyalgia, there are so many symptoms that one can experience it can get overwhelming. I often would tell doctors or healthcare providers that my anxiety was extremely high. So high that my heart would pound all day long and I would feel sick to my stomach every day. No one seemed to want to take it seriously and responded back with, ” Yes anxiety is part of fibromyalgia.” And leave it at that. My anxiety spiralled out of control and started presenting as an anxiety disorder. My neurologist was the first person who took it seriously enough and helped me. Fibromyalgia is an invisible illness, but so many symptoms arise. Each and every symptom needs to be addressed and needs to be treated – usually with different routes. Another example here is I would constantly have leg pain – which is also a symptom of fibromyalgia. I was always told the pain was from the fibromyalgia, but I found out I also have restless leg syndrome that needed to be treated. The leg pain eased off after I started medication. Who knew restless leg syndrome could cause leg pain to be present? I sure didn’t.

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3. Doctors or healthcare providers tell you it all in your head and the symptoms are not there. Sadly, this happens alot with people diagnosed with fibromyalgia. We are not hypochondriacs. The symptoms are real! Fibromyalgia has no one test to diagnose which makes some doctors and health care providers wonder if all the complaints are true. Without listening to your symptom list, you may be diagnosed wrong, or the incorrect treatment may be used. I often wonder if I have chronic fatigue syndrome as a primary diagnosis and fibromyalgia as a secondary. In my case the chronic fatigue is worse than the pain most days, but there again it’s easier to blame fibromyalgia then take the time to properly diagnose me with chronic fatigue syndrome.

4. Your medical history is questioned. I don’t know about you, but my medication list has grown larger since being diagnosed with fibromyalgia. Most of the medications were prescribed by the same doctor, who recently moved or by my neurologist. However, I had to see a different doctor for refills one day at a walk-in clinic. He did not want to refill the ones my neurologist prescribed as he couldn’t see it on my file, even though all three medications were listed on my neurologist report. I had to explain and defend why I needed each and every medication. I left the office without the three medications, because he felt I was pill shopping and being dishonest about needing these pills.

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5. During appointments you are constantly being interrupted by the doctors or health care providers. How do you explain the issue or symptom when being interrupted over and over?!? The answer is you cant. I have been to doctors in the past where they think they know what you are about to say and interrupt before you have had a chance to explain everything. It can become frustrating. I have not experienced this as of recent. My doctors involved have always allowed me to explain my side of it and genuinely listened when I speak. I do know of situations where others have gone in, and their doctor was not attentive or even listening to what was being said. Not being heard is often a complaint of many people who suffer from chronic pain conditions. I also saw a dr who did not live where I live, and he constantly interrupted me the entire hour I was in the office with him. I was never able to finish a sentence. It doesn’t make a person feel heard.

6. Doctors refuse to investigate with lab work or any other tests. On the support groups I am a part of for fibromyalgia, I often hear of doctors not wanting to take the time to investigate further. Fibromyalgia is often diagnosed by ruling out several other conditions beforehand. I was lucky in that aspect. My doctor ran blood tests over and over again to verify that the results were accurate. My doctor sent me to a rheumatologist to rule out other conditions and ordered an MRI when I requested to rule out MS. Any tests that were recommended by specialists my doctor was quick to request further testing – such as a sleep study.

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7. Not being given the opportunity to have your opinions and thought in treatment routes. I have had this happen to me once and it was such a negative aspect in my treatment plan. My trust level disappeared and I found myself not wanting to even participate in what was recommended. I even formed extremely high anxiety. Disability flew a doctor to where I live to complete a medical status exam- a doctor who I had never talked to nor do i believe he reviewed any of my medical background information. This doctor concluded that I had full range of motion and I should return back to work based on my current capabilities – yet my family doctor reported the complete opposite a month prior. I’m not sure how a doctor can deem a person fit to return to work when being told I have a difficult time meeting my basic needs. Long story short, he had written a bunch of recommendations in his report which were put into place and I was not given the option if I wanted to take these recommended treatment routes. Looking back on this appointment I realize I was medically gaslighted the entire appointment.

Gas lighting can result very negatively. It can create emotions such as anger, frustration, doubt, worry, sadness and fear to form.

1. Medical Gaslighting can result in being diagnosed incorrectly, which then leads to the wrong treatment routes used.

2. A second result is the individual may experience high anxiety and/ or depression. Individuals who have experienced gaslighting may also become very emotional, thus resulting in poor judgement and asking the wrong questions to doctors or healthcare providers.

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3. Medical gaslighting can result in loss of trust and isolation from seeking further medical care.

4. Medical gaslighting can result in you feeling crazy and make you question your own judgement and sanity.

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How to prevent medical gaslighting from taking place:

1. Advocate for yourself. Advocating for yourself may require you to keep detailed notes of symptoms, treatments, medications and any other relevant records. Please see my blog on advocating if you want more information. If a treatment route is mentioned that you are unsure of, voice your concerns about it. If after advocating for yourself and you remain ignored, you may want to seek a second opinion from another doctor. There are also advocacy groups out there if you have a difficult time advocating for yourself. Sometimes you can arrange for an advocate to accompany you to your appointment.

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2. Take someone with you to an appointment such as a family member or a friend for support if you need to.

3. Ask questions. This requires the doctor or health provider to communicate with you directly limiting the chances of being ignored. Remember time is limited at most doctors’ appointments so prioritize your questions. I often go in with a list of what needs to be discussed. By asking questions the doctor has to engage.

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4. If the incidents of gas lighting are severe you may want to consider speaking to the manager of the clinic or filing an official complaint. Ive had to take this route a few times as the health care providers were belittling me during treatment. I actually discontinued care at this particular clinic due to being belittled and feeling uncomfortable as soon as I stepped foot in the front door.

5. Seek healthcare from doctors or health care providers who come across as genuine, respectful and honest. A doctor who cares will respect you and your time at the office.

I hope this information provided in this article helps you identify medical gaslighting.

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Kitchen Hacks: Cooking with Chronic Pain

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Cooking a meal should be pretty straight forward, right?! For those of us who live with a chronic pain condition such as fibromyalgia, we must adjust how we work in the kitchen. Preparing a meal becomes very intimidating and exhausting. I have had to make several adjustments in the kitchen be able to get meals cooked.

Kitchen hacks for those with chronic pain:

1. Anti-fatigue mats. I have two of these mats in my kitchen. I was reluctant to spend the money on them, because I didn’t know if it would actually help me. Anti-fatigue mats help reduce fatigue on your legs and body. By reducing the fatigue, you prevent or at least minimize the pain levels. I found out how quickly these mats work. With the mat I am able to stand longer to cook or wash dishes then without the mat. If I do not use the mat my legs get weak, feet sore and my shoulders and back begin to hurt. I highly recommend the mats.

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2. Food processor. I recently bought an electric food processor after having a discussion with an occupational therapist. This processor has made a huge difference for meal prep. Before I could not shred a block of cheese by hand. It would cause instant pain in my hands and wrists. The pain that throbs deep down to the bone. With the processor, the cheese is done being shredded in no time and I do not have any pain as a result. If you spend a decent amount of money on a processor, it will come with many different functions such as shredding, chopping and dicing. I even used my processor to slice potatoes. Again, done within a few minutes, and no pain resulted.

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3. Electric can opener. I bought an electric can opener a few weeks ago. It is much easier than using an opener you have to manually twist. Another hack to avoid the wrist and hand pain.

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4. Slow cooker/ crock pot. These are often recommended because you can cook a whole meal in it. I often cook a roast, potatoes and carrots – easy meal to throw in the pot and set the timer. No need to stand in front of it while it cooks. I often forget to pull my slow cooker out to use, but it would make life so much easier. There are so many recipes for slow cooked meals online.

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4. Jar opener tool. I bought one of these from Amazon and it makes jars so easy to open. If you are like me, I no longer have the hand strength to open jars, so this tool comes in handy. People with arthritic hands could also benefit from using this jar opening tool.

5. Utilize sitting down to do meal prep. I often will take whatever ingredients I’m preparing and sit at the table instead of standing. It is less stress to my legs, back, neck and shoulders. Sitting and cutting veggies for a soup is much easier sitting down.

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6. Rice cooker. Using a rice cooker instead of cooking rice on a stove top is so much easier. Add the rice, water, any spices you may add to your rice and plug it in and wait for the rice to cook. Rice cookers usually indicate when they are done. Mine clicks over to warm, but it clicks loud enough you can hear it.

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7. Rocking knives. I haven’t bought one yet, but I have spoken to others who have, and they find these knives much easier to handle. Instead of a chopping motion, you rock the knife to cut. These knives are often recommended for people with arthritic hands too. I’ve been looking at the different brands on amazon, but I have yet to order one. Check it out!

8. Double handled pots. I’ve often seen pots in the store with a handle on each side of the pot. These would be ideal to use for people with hand pain. My pots only have one handle, but I often think buying a few extra pots that have two handles would be safer. I have a difficult time lifting pots off the stove to drain the water out. Having two handles would make it easier to lift the pot and much safer.

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9. Mixing machine. I own a Kitchen Aid mixing machine. It comes with three different mixers which comes in handy depending on what you are making. These machines cut down the time it takes to manually mix by hand and make baking easier. The one good thing about the Kitchen Aid mixers – there are so many attachments you can purchase to go with the mixer – even a food processor. There are also handheld mixing machines that would also work- less stress on your wrists and lower opportunity for pain levels to go higher.

10. Cook extra food. When I cook meals such as spaghetti or soups, I will cook enough to be able to have left overs for the next day. This way I can have a break from cooking. On my good days where the pain is lower and fatigue is bearable, I will also do some meal prep and freeze these meals. The meals can be taken out and thawed on days that I can’t function enough to cook. I often make Shepards pie, chicken pot pie, and lasagna to freeze. By doing so, this gives me six meals to quickly take out to thaw and eat. Theres many meals you can prepare ahead and freeze them!

With the new counter-top cooking appliances coming out it becomes easier to cook one pot meals very quickly, even from a frozen state. I keep looking into getting a Ninja Foodi 6 in 1 appliance. This appliance can become an air fryer, pressure cooker, steam, bake and roast. It will remain on my wish list for a while as they are fairly pricy. Do you have any kitchen hacks to make it easier cooking with chronic pain?!?

Is your chronic fatigue caused by fibromyalgia? Have you considered chronic fatigue syndrome?

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One of the most difficult and frustrating symptoms for myself is the chronic fatigue I have alongside fibromyalgia. When I got told by doctors and specialists that fibromyalgia is often accompanied by fatigue, I never thought the fatigue would be this life disrupting. I’ve learned that feeling tired versus feeling fatigued are two completely separate terms. When a person feels tired, sleeping will cure this tiredness, while fatigue is not relieved by any amount of sleep. In my case I have come to realize no matter how little or how much sleep I get, I feel extremely fatigued the next day, to the point it makes it extremely difficult to function and take care of my basic needs. Who knew eating could become tiring?!? Lifting food to my mouth and chewing the food has proven to be a chore at times. I literally told my doctor this exact sentence not long ago. Some days finding the energy to eat is just overwhelming. Can anyone else relate?

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At my last neurologist appointment, he explained to me that chronic fatigue is one of the most difficult things to treat as there are so many factors to think about to even pinpoint why the fatigue may be so disruptive. Fatigue is a symptom of fibromyalgia to begin with. A survey revealed, 780 males who have fibromyalgia, 93% reported chronic fatigue. While 4467 women were surveyed – 97% reported fatigue. The use of certain medications to help limit fibromyalgia pain could be part of the culprit to the added fatigue. Many medications used in treatment; have a possible side effect of fatigue.

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Ever hear about chronic fatigue syndrome (CFS)? I have done a lot of research between fibromyalgia and CFS. CFS is a completely separate condition from fibromyalgia. There again, it can be difficult to diagnose – just like fibromyalgia. There is no one test to diagnose CFS. I have never been officially diagnosed with it, but I stand firm when I state I do have it. Chronic fatigue syndrome also presents with many other symptoms. Below are some of the possible symptoms of chronic fatigue syndrome.

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Fatigue is not the only symptom people may experience with CFS. I often get daily sore throats, fevers that range from 99-103 F, and swollen lymph nodes. My blood tests always reflect no indication of any infection or that my body is battling a cold or flu. I’ve come to the conclusion that these symptoms I experience, are from chronic fatigue syndrome. There is no other explanation to why I exhibit these symptoms. These symptoms have a very quick onset and with little warning. As I write this blog, I found myself with a fever of 103. When these symptoms arise, it feels like I have the world’s worst flu bug…but I don’t. Have you ever had a flu that has knocked you down for days?!? Most of us have at some point. That is what I experience, but every day. Imagine living with a flu everyday – 24/7 for 365 days. Welcome to my reality.

As for treatment options for CFS, there have only been a few options mentioned to me, but not just a simple fix. My doctor and neurologist both mentioned the possibility of using a stimulant medication such as modafinil. By using a stimulant, one may see a response of wakefulness. Before using these medications there may be many aspects to think about prior. My doctor was very concerned that using a stimulant to improve my wakefulness during the day would be counter-active and not wear off before I went to bed causing further sleep issues to form. There are many listed side effects on these medications as well. Not everyone will experience the possible side effects. I personally find most medications can help relieve some symptoms, but then leave behind another symptom that may be unpleasant to deal with.

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The other treatment option that is supposed to help improve chronic fatigue syndrome is exercise. I was never given any further direction on what type of exercises help or duration; however, I’ve found adding exercise into my day very difficult. First of all, who wants to exercise when they are so fatigued and causes pain levels to hit pain levels of 10?!!One must find the right exercises and duration and not over do this exercise and make their fibromyalgia symptoms and fatigue worse. If you are seeing a kinesiologist, they may be able to guide you with this route. This was my running issue balance. In my particular case, trying to add exercise made me go into a fibro flare each and every time. Research states that pain levels will increase at the beginning until one’s pain threshold increases, but I found it difficult to follow through when the results were so negative and debilitating results. There may be other treatment routes to improve chronic fatigue. These two are the ones most talked about.

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When a person experiences chronic fatigue everyday it can impact a person’s cognitive abilities. I know I often struggle and search for words when I am trying to speak, leading to stuttering or creating words up that aren’t actually a word. I often joke saying maybe I could become rich by claiming rights to my newly created words. My concentration is also very limited, and I often find myself forgetting things. I will get into how fibromyalgia effects a person’s cognitive abilities in a later blog.

Just like fibromyalgia there is no cure for chronic fatigue syndrome. One must learn to maneuver through life the best he/she can while dealing with the exhaustion and symptoms left behind.

For more information visit: https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/diagnosis-treatment/drc-20360510

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Fibromyalgia Flare Kit

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Fibromyalgia is difficult to handle on any given day, but when experiencing a flare up it becomes even more difficult to function. A flare up can be triggered by doing too much, stress, or even a medication change. My three biggest triggers include cold winter weather, stress and overdoing it on my good days (which I do way too often). These are just a few examples. When a person enters into a fibromyalgia flare all the symptoms get worse and exacerbate intensity of symptoms. New symptoms may even appear. Everyone who has to survive these flare ups soon learn strategies that will help them cope. Flares can last up to a few hours, days and even months. My worst flare lasted over a month. It was a very difficult time and wore me out physically and mentally. Fibromyalgia flares can result in limited abilities or result in being incapacitated leaving one bed ridden. Below are items that I keep readily at hand to get through a fibromyalgia flare up.

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My flare up kit includes:

1. Heating pads. I have several heating pads of various sizes. There have been times where I have had all three in use, depending on the severity of my flare. I have a heating pad that is meant to be used on the shoulders and neck. These two areas are problematic when I enter into a flare. Even though the heat doesn’t relieve the throbbing aches long term it helps while in use. I get a short break from the pain. Anything is better than nothing.

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2. Heated blankets. I often get chills when I go into a flare. Having a heated blanket takes the chill out of my body. It also acts as a full body heating pad if I have jumping pain all over my body.

3. Weight blanket. I absolutely love my weight blanket. My boyfriend gifted this to me for Christmas one year. If you know anything about weight blankets, you know there are many benefits in using them with or without fibromyalgia. The weight from the blanket is known to help reduce anxiety. For those of us with fibromyalgia, we know anxiety can become an issue. For myself, I find the weight helps relieve my leg pain. I’ve heard from others that the weight causes further pain, so they don’t use a weight blanket. The use of a weight blanket with be dependent on your body. Using a weight blanket is also supposed to help one sleep better. I have noticed when I use the blanket I in fact do sleep better.

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4. Travel neck pillow. Often times when I flare my neck becomes very painful and my muscles in my neck get weak. Having to hold my head up feels unbearable. I use the neck pillow to allow my muscle to relax and not have to work as hard to hold my head up. This is easy to take with you anywhere!

5. Medications. Make sure you have extra medications that you may use to remedy any flare up symptoms. For example, when I flare i often get flu like symptoms which can be relieved with over-the-counter Advil cold and sinus pills. Keep any other remedies you use available such as bio freeze spray.

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6. Ear plugs and a mask. I often get sensitive to noise, and light. If i try to lay down during the day I may use a sleep mask to cover my eyes. I have also just bought some ear plugs to try during the day if sound bothers me. Sometimes even the vehicles driving down the street is too much noise to handle.

7. Compression gloves. I bought a pair of compression gloves to try. When i flare my hands often ache in every joint possible. Lots of people I have spoken to love their compression gloves. They even have compression socks to help with foot pain. I’m still experimenting with the gloves to see if they make a difference.

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8. Comfy clothing or soft pajamas. Comfy clothing often brings one a feeling of comfort. During a fibromyalgia flare I often have sensitive to clothing. i rather be in pajama bottoms or sweatpants then a pair of jeans.

9. Water. Drink lots of water. As I type that sentence, I realize I should take my own advice. Water is important to drink for everyone but can also help during a flare. I find adding lemons or lime to water makes it more desire able to drink.

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10. Music. I always have found music soothing and relaxing. I often will turn on music while I relax. Research often states music has the power to reduce pain and anxiety. We often hear about music therapy for children with disabilities. Why wouldn’t it help with people with fibromyalgia?!? Give it a try. What do you have to lose?!?

11. I was going to stop at ten, but I’m going to add one more thing to the list. Do you own a pet?! They can greatly help us through hard times – even a fibromyalgia flare. Did you know petting a dog or cat, can reduce levels of cortisol in your bloodstream, thus lowering muscle tension that may be contributing to pain levels?!! Research says spending even ten minutes with a dog can reduce a person’s anxiety levels. Interesting, isn’t it?!! Dogs are often used at therapy pet for these reasons.

What would be in your flare kit? Everyone’s flare kit will look a little different. Maybe your flare kit includes a book instead of music!

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Is Fibromyalgia Progressive?

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We often wonder if fibromyalgia is a progressive condition. In all the articles I have read over the years, they all state that it is not progressive. Ever doctor or specialist I have spoken to also states the same. I on the other hand, believe it can be progressive. Some individuals may be able to successfully control their symptoms and their fibromyalgia almost seems to go into a “remission” and possibly only experience fibromyalgia flares from time to time. Other people may not be able to control their symptoms causing their fibromyalgia to become very debilitating. For myself, I have had very little success on finding the correct treatment routes to help relieve my symptoms and the pain and fatigue seem to get worse as the days pass by. I have also noticed many new symptoms appear over the years – symptoms that have no other reason to be present.

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I’m a member in many fibromyalgia support groups online and I’ve posed this question to many of these groups. These groups are worldwide with thousands of members. There are a lot of people who agree when I asked this question stating they too feel like their fibromyalgia has progressed and gotten worse over time. I know for a fact in my case my fibromyalgia symptoms are worse after three years then I was when I first got diagnosed. Sometimes I think covid restrictions played against me. I got diagnosed shortly before the pandemic began. Lots of assessments got cancelled and they never were rescheduled due to the restrictions being put into action. I feel like I missed out on the early interventions that could have been put into place to help me control my symptoms- swimming pools and gyms closed and in person courses on fibromyalgia were cancelled. We are often told swimming is an excellent activity for those with fibromyalgia as it is a low impact activity. How does one swim when there is no access to the facility?? I kept being told to go swimming by doctors. It became frustrating when they knew it was closed due to restrictions. I often wonder if I had been given the proper guidance if I would have been back on me feet a little easier. Instead my body desensitized itself and my fibromyalgia symptoms worsened over time.

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When I first got diagnosed the pain and fatigue interrupted life to a certain extent, but now I find fibromyalgia has interrupted every aspect of my life. At the beginning the pain only affected a few areas of my body, today it is very much widespread pain. Whenever I explained to doctors or any health care provider that I hurt and have pain head to toe they would always tell me this was not possible. I always responded with, “It sure is possible, because I feel it!!” I always have disliked when I get told my symptoms aren’t possible – for the fact they are not in my body to experience it and it always makes me feel like my pain levels are being downplayed by whoever makes these comments to me.

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As I stated, some symptoms have gotten worse over the years, but I still question why. I had a recent appointment with my neurologist and and I was explaining this to him. He stopped me at one point and stated that my prescription medications could also be contributing to some of the worsening symptoms. For example , irritable bowel syndrome is often common with people diagnosed with fibromyalgia. I’ve noticed an increase in stomach issues over the last six months. Now is it IBS or just a side effect from my medications being used. A-lot of my medications state they can cause diareeah as a result. Another example in my case is increased levels of fatigue. Now is this fatigue from fibromyalgia or a side effect from my medications?!? I do know a few of my medications can cause further fatigue to result, but to distinguish and pinpoint the cause is extremely difficult. One would have to wein off their medication to see if the fatigue improved. At this point I am not willing to take this action to find out.

Has anyone ever stopped to think about what happens to our bodies as we age? I often wonder if it is the aging process causing aches and pains to form instead of the fibromyalgia. Doctors often state younger people have a better chance to bounce back and get their fibromyalgia under control then people who are older. It proves to be true with injuries. For example, someone in their twenties will most likely recover from a broken bone faster than someone older. Can this same concept to applied to controlling fibromyalgia symptoms? I don’t have the answer, but it makes a person stop and think. When I had my MRI done on my cervical neck to rule out multiple sclerosis, the MRI reviled I have arthritis in my neck forming. The arthritis is forming at the location that I have constant neck pain- which I always thought was caused by my fibromyalgia. I often stop and wonder if my hand, foot and knee pain is arthritis forming too and fibromyalgia is not the cause of this pain. What is your thought on this? Being I’m only 38, I feel that fibromyalgia is more the culprit in my case. I used to be very active physically – always on the go and now it’s difficult to find the courage to go for a fifteen-minute walk.

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What I do know is everyday tasks have become very difficult and daunting to complete. Folding laundry creates a burning sensation to form in my arms and then results in my limb feeling like I’ve been holding a ten-pound weight in the air. Brushing my hair or my teeth often leave me with the same feeling. Walking upstairs can leave me feeling short of breath, cause my legs to burn and I feel like collapsing to the ground. Cooking can leave my hands with deep down to the bone aching and numbness to the point I drop everything. Anyways… you get my point. Everyday tasks can become difficult to complete. Many of these issues I face today were never present during early diagnosis or at least to this extent. Doctors often say fibromyalgia will get worse from being sedentary and letting the pain run your life. When I attended one pain clinic, I had the kinesiologist tell me, “I can’t have you sitting on the couch all day long.” He continued to tell me I was not trying to improve. Little did he know, I don’t just sit on the couch everyday doing nothing! He got frustrated that everything he tried was not helping improve my fibromyalgia. Just because a strategy is unsuccessful doesn’t mean a person is not trying!!

Conclusion: Is fibromyalgia progressive? i guess according to research and the medical field it is not, but I believe it can be! After living with fibromyalgia for myself I feel confident saying in my case it had been progressive. Enduring chronic pain, and other fibromyalgia symptoms continuously must have some effects on one’s body. The strain from fibromyalgia flares over and over decreases a persons quality of life drastically. What about you?!? What is your opinion?! Maybe you have never taken the time to assess your situation in this depth yet.

PREVIOUS POSTS…

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Do People Grieve when Diagnosed with Chronic Conditions?

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When anyone is diagnosed with fibromyalgia, I feel as if that person grieves who they once were and have to come to accept who they have become. Fibromyalgia alters a person’s life so drastically. Every area of your life is usually impacted to some degree. It took me awhile to realize this. Whether it is a minor change or enormous change, people with fibromyalgia have to learn to live with chronic pain being present in their everyday lives. One of the hardest things to do is to accept and be okay with your diagnosis. At least for me, I felt I was in denial for the longest time. On my good days I often thought to myself, “Awesome I’m better and I can return back to my life before fibromyalgia took a front seat.” When the good day starts to fade into the background and the pain begins to slowly creep back in, emotions can run high and spiral all over the place.

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Have you ever heard of the grief cycle? I first learned about the stages of grief when I was enrolled in a psychology course – training to become a mental health rehabilitation worker. When people close to us, pass away and we are grieving the loss, our emotions tend to be all over the place – one minute you are happy, the next sad, or anger sets in. It got thinking, this grief cycle can also be applied to those who live with a chronic condition such as fibromyalgia. No matter what a person is grieving, there can be five different stages of grief that you may go through. I know some grief models discuss seven stages, but in my blog, I will be referring to the 5 stages of grief model. Not everyone will follow these stages in the same order, nor go through each stage. One can also be in a stage and revert back to the previous stage. We all are equipped with different coping mechanisms and grief will affect each and every one of us differently!!

In my own fibromyalgia journey in the last three years, I know I have been in stages of grief and returned several times to different stages. Just like the above picture, my road looked like the image on the right side. I still find myself having mixed emotions – and I dont think that will ever stop. Having fibromyalgia is like being on a rollercoaster- ups and downs. I go back and forth between the different stages, even though I have accepted that my life will look differently then before diagnosis.

Denial – When I first got diagnosed I was shocked with the diagnosis of fibromyalgia. I had a doctor tell me years ago (2014 ish) that he suspected I had fibromyalgia then. I shrugged it off and never thought about it again. Back to 2019…I initially went to the doctor because I was always tired – which soon became apparent that it was fatigue not just tiredness. My hands and elbows were always in constant pain too. The initial action of any doctor is to probably run blood work. Mine kept coming back normal. As the pain got worse over a short period of time, my doctor diagnose me with fibromyalgia as there was no other explanation. I took some time off of work to try to get the symptoms under control. I convinced myself that the migrating pain and the deep down to the bone wrenching aches would just go away and I’d be back to work the following week. I even found myself thinking to myself, “I’m just over thinking things, the pain isn’t really there.” I even tried to convince myself that it was just a bad flu bug, even after diagnosis. I took longer off work, thinking I could heal my fibromyalgia – what I didn’t realize at the time was there no cure to fibromyalgia, only learning how to manage symptoms and learn to accept a new way of living. My medical leave from work, turned into months, a year and so on. It took me close to three years to accept my diagnosis. There are still days where I wonder if something is still undiagnosed and it really isnt fibromyalgia. For now, I carry on with life as if it is fibromyalgia and do the best, I can do every day. Some days I make it from the bed to the couch and that’s ok!!

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I often find myself back to this stage. Fibromyalgia takes so much away from a person. I have learned we often take things for granted. A task such as brushing your teeth, walking up a set of stairs or even getting out of bed every morning can become so daunting – especially when you have chronic pain involved. If I do push myself to go out and do something it results in a full-blown fibro flare. Then I find myself angry with myself for pushing too hard. I know my limits, but some days, in order to enjoy life, one has to endure the pain. I find myself being angry because I don’t have the energy to go for a coffee with a friend, a birthday celebration or even a vacation away. Fibromyalgia has taken away from me being able to take part in all my favorite hobbies such as hiking or playing golf. I’ve had to learn to enjoy new hobbies – which some days means binge watching a favorite tv show on Netflix to pass the day in pain. I used to read a book a week, now I can’t get through a book at all. My new hobby is to listen to an audiobook instead.

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Research often reports that depression is high for those who get diagnosed with a chronic condition. How can one not become depressed when they have lost so much independence and enjoyment? For the most part, humans are very sociable, but for those who are dealing with chronic pain and fatigue, your social life soon takes a backseat. I have had to cancel plans so many times, due to the fact that I just don’t feel good enough to leave the house. It becomes very frustrating, and one can start to feel depressed from having to isolate themselves due to high pain levels. I’ve become horrible at keeping in touch with friends and family since I have been diagnosed. As of late, I try to at least text people to say hi. I never hit a full depression stage, but I would definitely say I was “down in the dumps.” I did seem to develop major anxiety which can also contribute to depressive states. I don’t have any words of wisdom for this stage, because I’m still struggling with this stage myself. I’m currently trying to live in the now and not worry about what I can’t control in regard to my fibromyalgia. I’ve learned my fibromyalgia symptoms do what they want when they want, and I can’t prevent them. I have to deal with it when it happens. I often feel overwhelmed by the endless symptoms that appear everyday with no warning. I’ve learned its ok to be angry!! Just like the saying says, “It’s okay to have bad days, just don’t unpack there!!”

At this stage, one often thinks if I take specific steps the chronic pain will disappear. I had it in my mind that if I increased my exercise and went swimming, I would get better, or if I go for more walks the pain will disappear. Boy was I wrong. Not only did it increase my pain levels, i created false hope of fixing myself. Don’t get me wrong, exercise is important, but in my specific case, adding exercise was not the simple answer. I attended a pain clinic with high hopes they could fix me. Even though I knew there was no cure for fibromyalgia, I thought specific actions would make it go away and my life return back to normal! I often would think to myself, if only I had listened to the doctor back in 2014 maybe I could have avoided being in so much pain today. Stop beating yourself up!! We are often too hard on ourselves.

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Acceptance. This is the last stage. This is where one learns to be okay with the diagnosis of fibromyalgia. We have to learn how to live with a chronic condition and make changes to our lives to be able to function. It is not an easy task to learn to accept – that your life that once was, will never exist again. You have to learn to live and navigate a whole new world – the life living with chronic pain, fatigue and other symptoms that may rear their ugliness. Acceptance can be easier for some, while others may need longer to accept the reality of the situation. It took me almost three years to accept mine. Remember, there is no time frame to acceptance.

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Chest Pain in Fibromyalgia…What is it called?

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Did you know that fibromyalgia can cause chest pain? I sure didn’t!!!! The first time I had experienced this type of chest pain was the scariest moment of my life – thinking something was wrong with my heart. Chest pain that is felt with fibromyalgia can mimic what may present as a heart attack. It is actually a condition called Costochondritis – which causes inflammation of your rib cartilage. This cartilage connects your ribs to your breastbone. With the symptoms mimicking a heart attack, I would definitely not just assume its costochondritis and get it checked by a doctor to be sure it’s not anything serious or heart related.

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Since I hadn’t heard of this condition before, I decided it was a good time to do some personal research and find out as much information as I could about it as at the time. I was dealing with this chest pain daily for a while. On several sites I used to research, it stated that costochondritis pain is usually only felt in a small area of one’s chest while a heart-attack involves a more widespread area and often causes pain in the neck and into the arms. My chest pain I experience is always on my left side of my chest – hence why at first I thought it was my heart. The pain is a sharp aching pain, which can have a gradual onset or appear immediately. For myself, the chest pain would start minimal and then increase to the point it hurts to breathe or move. I would also feel like there was an air bubble stuck in my chest- it really isn’t an air bubble, but cartilage inflammation. Costochondritis is not a life-threatening, but can be very painful. The attack can usually be relieved by resting and waiting for the condition to improve. Everyone will experience costochondritis differently. Your pain may be less severe than mine, similar or even more severe than I have experienced. I found the duration of the attacks different each time. Sometimes the pain would ease after several hours, while other times it would last until the following day.

To help treat costochondritis I have found lying flat on the bed or couch helps ease my pain. I remain as still as I possibly can as movement aggravates the pain further. I also apply heat with a heating pad to the area. One could also try to ice the area, but I prefer heat. My body responds poorly to icing. My body has become intolerant to icing areas causing pain to arise. Some people may not get any relieve by laying down but may get some relief by standing or sitting in a particular position. You may find yourself experimenting to see which works best for pain relief for you. I often take over the counter pain killers such as Advil or Motrin to help relieve the pain. A few times I have had to rely on prescription anti-inflammatory medication to help.

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There has been no solid evidence towards what could cause an attack of costochondritis to form, but possible causes could be anything that may cause tension to the chest area. The stress can therefore cause inflammation to take place. Even a simple action such as coughing, could cause an attack to happen or reaching for an object off a high shelf above your head. In most cases, it remains unknown to what causes each episode of costochondritis to take place. If you can pinpoint the cause, you may be able to prevent future attacks from taking place. However, without being able to know what the direct cause for the cartilage is to become irritated and inflamed, it remains very difficult to prevent.

I have come across a few articles over the years, that states there are exercises and stretching one can use to help relieve the pain felt from costochondritis. However, I have never explored these stretches and exercises as it states it is best to be directed by a trained physiotherapist. If anyone attends physio for other reasons, you may have the opportunity to ask your physiotherapist about these exercises. Usually at physio, they will teach you the proper stretch or exercise, so you do not hurt yourself further. There are many videos on YouTube about these specific exercises if you wish to explore further.

You can find more information on Costochondritis here. You will be redirected to the mayo clinic website for more information.

I’m sure costochondritis can be present without being diagnosed with fibromyalgia. So don’t assume that if you have fibromyalgia, you will have costochondritis or vice versa. Individuals who are diagnosed with fibromyalgia just seem to have higher chances of having the cartilage in their ribs inflame.

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Fibromyalgia and Insomnia

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Fibromyalgia and insomnia seem to have a high correlation. In all the research I have done on fibromyalgia in the last three years, I have never found a solid explanation as to why people who have fibromyalgia suffer from insomnia. In the book, “What Your Doctor May Not Tell You About Fibromyalgia“, a study states out of 665 males – 80% suffered from insomnia, while out of 4, 075 women 88% reported problems of insomnia. As we know, getting a good night sleep is important for anyone. The less sleep a person gets the less energy reserve one has, causing various negative effects such as cognitive changes. For people with fibromyalgia, insomnia can become a nightly issue. Decreased sleep can cause a person’s pain threshold to become lower. People who have fibromyalgia already have a lower pain threshold to begin with. This is due to desensitization – which will decrease one’s pain threshold even lower as time goes on. With a lower pain threshold, higher levels of chronic pain are formed, and the pain is felt at even higher rates. In all my research, before improving any other fibromyalgia symptoms, the number one advice listed in many sources is – one must first fix their sleep or at least improve their sleep. Sounds easy right? But that is not the case. It is not just an easy fix. I’ve had bouts of insomnia on and off for years, but after so long my body just crashed and I would sleep. These days no matter what I do to try to improve my sleep, it does not happen and results in insomnia. For the last week I have been sleeping poorly. In turn my pain levels have been hitting levels of ten and I’ve been exhausted.

Some of the remedies to help lesson insomnia sound very straight forward, but reality is they are much more difficult than one thinks when factoring in chronic pain/fatigue. Here is what I have struggled with trying to improve sleep quality and quantity.

  1. Stay active and don’t become sedentary. Not so easy when you live with chronic pain and chronic fatigue. Just getting out of bed some days is difficult enough. If you have read my pacing blog – remember the spoon theory? Some days I don’t have a spoon to use to exercise.
  2. Stick to a sleep schedule. I tend to go to bed early and at the same time every night – due to the fact that if I go to bed even an hour later then I usually do, I can’t function at all the next day. Getting up at the same time every morning is a different story. Who wants to drag themselves out of bed if they have not slept at all or very little? Just to keep a scheduled sleep schedule? I rather get sleep when I can.
  3. Lots of times people overlook their medication list as a cause of insomnia. Many medications can have a side effect of insomnia. After researching and speaking to a pharmacist I have come to learn that many of the medications I take to manage my pain, have a possible side effect of insomnia. For example, my one medication I use to manage my migraines, can possibly cause a reduction in melatonin levels being secreted. Melatonin is naturally released in our bodies, and it is an important hormone to trigger optimal sleep. Many doctors may make a suggestion to try melatonin supplements to help with sleep. You can buy these in the vitamin section in any pharmacy (at least in Canada). Before adding in melatonin, I would suggest speaking to your doctor or pharmacist. For myself, I found these melatonin supplements caused me to have very intense and weird dreams, so I stopped using them.
  4. Avoid or limit naps during the day. For myself I need to rest when tired, otherwise the fatigue levels get worse, pain levels increase, and my ability to function over all decreases drastically.
  5. Pain during the night? There are medications out there that can limit pain, but people who have fibromyalgia are often on medications already to help with pain levels. At night pain often wakes me up, and then I cannot get back to sleep. I end up tossing and turning the rest of the night and getting out of bed in the morning feeling like I am a zombie. I’ve yet to find a solution to this issue.
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You can find more information about insomnia by clicking here, which will redirect you to the Mayo Clinic website.

It is always a good idea to have a sleep study completed to make sure it isn’t sleep apnea. After my appointment with my neurologist, it was suggested I get a sleep test done to rule out apnea. The take home apnea test is simple to hook up. The only issue I had was getting tangled in the cords at night. My test came back negative, but I know a few others with fibromyalgia who tested positive on their test. Once they got a C-pap machine to use at night, their sleep improved immensely.

The use of sleeping pills to help get the necessary sleep needed, can be a touchy subject. I have found that many doctors do not like to recommend sleeping pills and are very hesitant to prescribe them. Many sleeping pills can become habit forming and an individual can become reliant on the use of these pills. In my case, I decided using sleeping pills – the benefits outweighed the risks. I used to use Zopiclone – which did help me sleep, but this drug is not meant to be used long term or nightly. I would use it one night- get a wonderful sleep and then not use it for nights to come. I would go 2-3 nights without sleep and then breakdown and take one. When I did take it, the medication was not out of my system by morning, and I was often left groggy half the day. My doctor and I had a very in-depth discussion about sleeping pills and he switched me over to another one, which is safe to use nightly and the groggy feeling wears off by morning. Even with the use of a nightly sleeping pill I often wake up anywhere from five to ten times a night – experiencing choppy sleep patterns and feel very fatigued during the day. Even on the nights I do manage to get a solid night’s sleep, I wake up feeling extremely fatigued. However, I am a firm believer I also have chronic fatigue syndrome (CFS), alongside my fibromyalgia. The two conditions usually go hand in hand, but I have never been given a solid diagnosis of CFS by a doctor. If you have done any research on chronic fatigue syndrome, you have probably learned that fatigue experienced with this condition will not go away with sleep. I will be writing a blog on chronic fatigue syndrome soon!

Failing to get enough sleep can have many negative effects on one’s body. I won’t list these effects here because the list is way too long to begin to discuss. The pictures at the end of this blog, show many side effects lack of sleep and insomnia can have on one’s body. I will pick a few effects lack of sleep can have and discuss further in future blog posts. Stay tuned.

The best advice I can give to anyone who is experiencing insomnia alongside with their fibromyalgia, is to have a conversation with your doctor, and come up with a plan to help you with sleep. Everyone’s situation will be different. It may be a trial-and-error situation, to see what works best for you! As you can see even after three years, I still struggle with improving my sleep quantity and quality. Every night is different.

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Pacing Yourself….

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Every health care provider I have seen, has always discussed how important pacing oneself is when dealing with chronic pain, such as the pain we experience with fibromyalgia. Pacing is a technique we can implement when trying to complete tasks in our day to day lives. It requires one to break up a bigger task into smaller tasks to help us complete them. If you are like me, tasks such as cleaning can become very strenuous on us, resulting in, higher pain levels, extreme fatigue, frustration, fibro flare, etc. I often forget to pace myself because I was always the type of person to work at a task until it was completed. As of recent, I have been working on learning to pace myself to avoid a “fibro flare”. Pacing can be a very difficult strategy to follow, as most times on our good days we push ourselves over our limit just to get things done – instead of things sitting unfinished. I’ve personally made this mistake over and over again – then several hours later or the next day think to myself, “Why did I push myself so hard, instead of stopping at my limit?!” or ” If I had only slowed down while cleaning, I could have attended my friend’s birthday party.” Sound familiar? When doctors first mentioned pacing to me, I thought to myself that it would never help me. Now after 3 years of having to live with fibromyalgia and the forever unpredictable symptoms and flares, I have learned how important it really is to pace. Some days pacing works, some days its ineffective – and that is okay.

At the bottom of this blog, there are two PDF files that I found online on other sites that I personally found useful. Please note I did not write or create these documents, but I am sharing them to pass the knowledge along. I hope you too will find these helpful.

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I recently saw an article that explains “the spoon theory” and how it relates to pacing. The spoon theory was written and developed by Christine Miserando. She uses this theory to help people understand how to ration their energy reserve and pace themselves to complete tasks or daily activities. I found this theory rather interesting, and it makes complete sense. It is a great way to have a visual perspective right in front of you. Say we each start our day with 12 spoons sitting on the counter. Each task a person completes will decrease our spoon reserve. For example, getting out of bed might decrease by one spoon some days, while other days finding the courage to get out of bed may use two or three spoons up. Miserando’s theory states that if one did not sleep well the night before, a spoon should automatically be eliminated from the reserve before getting out of bed. I personally find getting out of bed extremely difficult when pain levels are high, and fatigue is at an all-time high. A shower may be considered two spoons, cooking a meal and eating may be three spoons, and going to work can be considered four spoons. Once again this is just an example of her theory. Obviously, everyone’s reserve of spoons (in our case energy) will deplete at different rates. Some days for myself just getting out of bed and eating breakfast requires all my energy, while other days my energy reserve lasts until noon and I can accomplish more. As the day goes on, our collection of “spoons decreases” – just like our energy levels. This is where pacing yourself through-out the day can possibly help you extend your energy to complete more tasks. Even though the tasks may seem to take longer to complete, you may be able to complete more in one day with pacing. Remember, pacing takes practice and patience. It may be difficult at the start, but the more you pace, the more efficiently you may be able to get things done without setting yourself into intense pain levels and possibly causing a fibromyalgia flare to take place. How will you use your spoons?

Pacing Yourself to Increase Valued ActivitiesDownload
Pacing And Goal SettingDownload
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Stand up and advocate for youself….

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Advocate, Advocate, Advocate!!

I wish I had found the courage to advocate for myself sooner than I did. After all, we know our bodies best. Not knowing very much about fibromyalgia when I was diagnosed, I put my trust in health care providers. If I could go back to early diagnosis, I would not be so scared to let my voice be heard. When I finally found the courage to advocate for myself – I got labelled as being difficult, uncooperative and told I was not trying to improve my condition, I held my head high and stood my ground.

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By Advocate I mean you should take the time to explain your condition from your viewpoint, not from a medical stance. I’m not a textbook or a website – nor does my body conform to reflect as such. Just because something is listed about fibromyalgia does not mean it will apply to your specific case. Everyones fibromyalgia journey is unique and different – symptoms we experience will be felt at different intensities and treatment plans and options will vary person to person. Don’t be afraid to ask questions. I would encourage you to ask as many questions as you need to clarify with doctors. After all – It is YOUR health involved. If you don’t take the time to ask the necessary questions in regard to your health, who will? By advocating, you will help others involved understand your condition and how they can best support you. If you have a difficult time advocating for yourself there are usually organizations that one can contact who will help you advocate. Often times an advocate can be arranged to attend medical appointments with you.

Here are some following tips in advocating for your health. They have been taken from the Alberta Health Services website to share with you. Please note: if you visit this site from another country other than the province of Alberta in Canada, the information on this site may not apply to you directly. I only linked the page in reference to what is listed below.

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Here are some tips that may help:

  1. Learn how to explain your health condition clearly. Practice speaking about your health condition with a parent, friend, or someone else you trust.
  2. Write down your concerns or questions before you go to your healthcare provider. It reminds you to talk about them at your appointment.
  3. Ask whatever questions you need answers to. It is your body and you need all the information to make informed decisions about your health.
  4. Keep track of all your doctors, nurses, and other healthcare providers including who you see, when you see them, and what you talked about.
  5. Stay calm and polite, but assert yourself to get the support or information you need.
  6. Speak up if you don’t agree with your healthcare provider. You are the boss of your own healthcare; no one knows your body better than you do.

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