All posts by dsf2779

Fibromyalgia and the trapezius muscle….What did researchers find out in 2020…

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Have you ever had muscle pain in your upper back before?! This pain can run into your shoulders and neck. The trapezius muscle is located in your upper back and is considered one of the largest muscles in your body. Fibromyalgia pain often attacks this particular muscle. I’ve had several doctors tell me this and from personal experience I can confirm it as true. The first time I went to the doctor to get my upper back pain examined, I thought I had a pinched nerve in my neck. This area remains a very problematic area for me for over two years now. The muscle always feels like a pulled muscle and remains tight all the time- leaving major pain in my upper back, neck and shoulders daily. Whenever I go into a fibromyalgia flare, this muscle hurts even more and is an early indicator that a flare-up is on its way (at least for me). The trapezius muscle group can also affect people who do not have fibromyalgia. It is not specific to fibromyalgia.

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Warning signs your trapezius muscles may be causing you pain…

1. Limited range of motion. I often experience this. Turning my head right or left, or even to look up and down causes major pain. It may even hurt to raise your arms. Whenever I get an attack of this muscle, I can’t lift my arms to drive. Even raising my arms to feed myself becomes painful.

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2. Pain between the shoulder blades. This was my number one complaint when I saw the doctor. On a daily basis I have shoulder blade pain that runs up into my neck. It is very painful and makes doing anything near impossible. Motions such as vacuuming or washing the floor cause the pain between my shoulder blades to become worse.

3. Neck and shoulder pain is a common symptom to see. There again, the pain in these areas will contribute to limited range of motion.

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In 2020, fibromyalgia researchers conducted a study that involved the trapezius muscle. People who were diagnosed with fibromyalgia had the pressure in the trapezius muscle measured. A pressure gauge with a needle attached to the end was inserted into their trapezius muscle. They noted that the pressure in their muscles were almost three times as high compared to individuals who did not have fibromyalgia. Dr. Liptan, who has treated many people with fibromyalgia, explains that the pressure in the muscles recorded are just about high enough to the pressure in compartment syndrome. Compartment syndrome is considered a surgical emergency. You can read more about compartment syndrome here. The findings in this study could explain why our muscles are so tender and why we experience high muscle pain. Again, more research needs to be conducted. It does make sense. The higher the pressure, the more angry our muscles get! Here is the link to the study completed in 2020.

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I was researching the trapezius muscle the other day and came across a new term. Trapezius myalgia – “which is the complaint pain, stiffness, of the upper trapezius muscle. The term does not mean there is another disorder involved, but refers to a symptom of an existing underlaying condition. “Read more about it here.

What are the treatment options for trapezius muscle pain?!?

1. Heat or ice. For myself I tend to apply lot of heat. I have the heating pad on my upper back fairly consistently. Some people may find ice helps the area better. You can use whichever you prefer. I often spray a product such as Bio-freeze that is often used by physiotherapists. Its almost like icy hot that soothes sore muscles.

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2. If you google gentle stretches for trapezius muscles, there are a-lot of great Youtube videos out there that will show you how to gently stretch this muscle to find relief. Many physiotherapists have uploaded stretching videos to the web. Just be sure you are using a reliable source so you don’t cause further pain to arise.

3. People may often opt to go directly to a physio therapist. If you rather go to an appointment and have a physiotherapist show you how to relieve the pain do so!

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4. Medications. My pain was so high that I asked my doctor for some muscle relaxants. Over the counter medications were not helping the pain, but the muscle relaxants do. I try to only take the prescription if I cannot tolerate the pain.

5. Other people may turn to treatment options like dry needling or acupuncture if the pain area remains chronic. I have not tried either routes. More so because I am a chicken and hate needles.

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6. Massages are another treatment option. If you can handle a message you may wish to try one. For myself I would find a massage extremely painful. I can barely lightly touch the areas that hurt.

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7. Trigger point injections. The pain clinic I attended thought this would help me find some relief. I never tried it but know others have and found some relief. The only problem is the injections usually wear off before its time to go back again.

8. Rest the area. Try to rest the are to allow irritation of the muscle to ease off.

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There are many other alternative treatments that I could list, but I’ll only mention the above eight in my article. I’ve yet to find the right combination to relieve the pain long term. I’m currently researching and thinking of trying myofascial release treatment – which is similar to a massage, but concentrates on the connective tissue rather than the muscles. It is often used as a treatment option to help fibromyalgia pain. Everyone will have a different response to myofascial release therapy – some people say it helps tremendously, while other people find it causes more pain to form. Not all massage studios offer this treatment. You may have to experiment and attend a few sessions to see how your body responds. I hope the information in this article helps you find some pain relief!

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Myths about fibromyalgia and what makes these assumptions a myth ….

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Today, there can still be many misconceptions about fibromyalgia. I often feel these misconceptions are formed because there is such a negative stigma in regard to fibromyalgia. Fibromyalgia is being acknowledged more as time passes, but it can still be misunderstood by many. More people are getting diagnosed with fibromyalgia syndrome and at present it is considered a disability (at least in some areas in the world). I personally think it should be considered a disability world-wide – being that it is such a debilitating condition.

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Myths include:

1. Fibromyalgia is all in your head and not real. Fibromyalgia is NOT a mental illness. Fibromyalgia pain and symptoms are not just being imagined and made up by the person experiencing it. The pain is real, or so many people wouldn’t have the same experiences. Technically it is in our heads, but not in the way people are referring to.

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2. Fibromyalgia only affects women. Fibromyalgia is more prevalent in women, but men can also be diagnosed with fibromyalgia. It does not just affect women.

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3. There are medications or prescriptions that can make fibromyalgia heal and you will be cured. Currently there is no cure for fibromyalgia. Medications are used to help relief pain and symptoms but does not cure fibromyalgia. One must adjust and learn to manage their fibromyalgia.

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4. Fibromyalgia is caused by arthritis or is an autoimmune disease. Fibromyalgia is actually considered a neurological condition (at this point). In fibromyalgia the brain reads signals incorrectly, resulting in the body misfiring pain signals. A person with fibromyalgia may receive a hug, but the brain perceives this sensation as pain. I have read articles as of recent stating it may be an auto immune disorder. If it is eventually considered an autoimmune disorder, maybe rheumatologists will begin to treat fibromyalgia directly. The rheumatologist I saw stated they don’t treat fibromyalgia and it is best overlooked by a family physician. A rheumatologist is often involved to rule out any rheumatoid conditions that may mimic fibromyalgia. There may be the odd situation where a rheumatologist stay involved depending on circumstances.

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5. People diagnosed with fibromyalgia should eat a special diet. There is actually no specific diet. Eating certain foods can create inflammation to arise in one’s body. Doctors or dieticians may direct you to try eliminating certain foods. However, there are a few diets out there believed to reduce fibromyalgia symptoms, but as far as I know these are just trials to see if they help. Some people might find going gluten free lowers their fibromyalgia symptoms, while someone else may not see a change.

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6. Pain felt in fibromyalgia is minimal. Pain felt is actually very painful. I often compare it to pain that people with bone cancer may feel as my bones in my body actually ache. On the McGill pain index, fibromyalgia pain is just below unprepared childbirth and almost on the same pain level as prepared childbirth. I’m not sure if this pain index is still used today, but it gives one an understanding on how painful fibromyalgia can be. In a 2020 research study, it revealed that the intramuscular pressure found in muscles of people with fibromyalgia is found to be three times higher than people without fibromyalgia. That is a-lot of pressure on our muscles! No wonder our muscles hurt and ache the way they do!

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7. Avoid exercise. While exercise may increase the pain levels, it is still important to move and incorporate some exercise into your day. Obviously, I don’t mean run a marathon, but some movement would benefit. If one doesn’t move the more it hurts when you do need to move. Cleaning, cooking, laundry and walking around the house are all considered exercise in my eyes. You are still using your muscles. If you do not move around your pain threshold may become even lower causing you more issues down the road.

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8. One must have 11/18 tender points to be diagnosed with fibromyalgia. Maybe years ago, this was the case. Today, doctors may not even ask about tender points. They look at other aspects too such as history and symptoms. Tender points can give a good indication if fibromyalgia is present. Often patients are still asked to fill out the tender point form. A study revealed that 20% of those included in the study reported not having any tender points.

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9. Fibromyalgia only affects older people. Fibromyalgia can form at any age. I know some get diagnosed early during childhood or in their teenage years.

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10. Having fibromyalgia makes you a hypochondriac. Did you know fibromyalgia can have over 150 symptoms? Most likely all the symptoms one speaks about they truly do experience them – proving it doesn’t make a person a hypochondriac. I know my symptom list grows by the day! Each symptom needs to be treated.

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11. Fibromyalgia is a “catchall” diagnosis. There are specific criterias that must be met to get a diagnosis of fibromyalgia. People don’t get diagnosed because doctors can’t figure out what is wrong with them. If one does not meet enough of these criterias, one is not diagnosed with fibromyalgia.

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Fibromyalgia Research 2021 – Study concludes that fibromyalgia may be an Autoimmune Disease

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Have you ever stopped and actually thought about treatment options for fibromyalgia? There is no specific treatment route to treat fibromyalgia. It is often a trial-and-error process to see what works for each person. I often wonder why there is no specific treatment for fibromyalgia. You would think in this day and age there would be a solid treatment. It makes me wonder if there are missing pieces and connections in research and discoveries preventing this from happening.

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I watched a video which featured Ginevra Liptan , a doctor in the United States. Liptan founded The Frida Center for Fibromyalgia. She shares that there is very little research being done on fibromyalgia due to lack of funding. She is also an author of The Fibro manual. If you haven’t already, I recommend reading this book. It has become a great source of information. I find myself referring back to it a lot. In this book, she begins by explaining when she was in medical school, she herself was diagnosed with fibromyalgia. She treated many people with fibromyalgia at The Frida Center, but as of current she has focused her attention to fibromyalgia research instead of patient treatments.

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In the video, she spoke of recent research and discoveries made in fibromyalgia studies. Liptan believes there are missing links in fibromyalgia research that are preventing new treatments from being discovered. In 2021, there was a study done on fibromyalgia and mice. They took antibodies from people who were diagnosed with fibromyalgia and injected the mice with these antibodies. The results are very interesting. I won’t go into detail of the study here, but I will include a few links at the bottom for you to read. The mouse study did not receive as much public attention due to the fact it took place during covid, and media releases were all covid related.

Fibromyalgia and the mouse study overview:

Researchers took blood samples from people with fibromyalgia and injected the IgG (antibodies that stay in your system) antibodies into mice. The mice were found to take on fibromyalgia symptoms that people with fibromyalgia often report as problematic. I find the findings very interesting. It sure makes you wonder what other undiscovered information about fibromyalgia is out there. They also took antibodies from people without fibromyalgia and injected these antibodies into mice to show the difference between the two groups of mice.

1. The mice appeared to be more sensitive to pain.

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2. The mice were more sensitive to cold.

3. The mice were observed to have lower grip strength.

4. The mice showed decrease locomotive activity.

5. The mice showed reduced nerve fiber density in their skin.

6. Once the antibodies cleared from the mice after several weeks, fibromyalgia symptoms disappeared, and the mice returned back to normal.

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7. The findings reporting in the study could indicate that fibromyalgia has an immune response and could possibly be an autoimmune condition. More research is needed to make these findings accurate.

Liptan explains in her video that the mice displayed pain-like behaviors. The mice showed that their nerves were hyper-excitable. The mice also had reduced activity meaning they were not walking around as much and appeared tired. Maybe their paws hurt so they didn’t move around as much. Nerve damage was also noted in their feet. Liptan continues to explain that the study also showed that the antibodies started to bind to a specific portion of the mices’ spinal cord – an area of the spinal cord which is important- where pain signals are interpreted by the brain. This study may help build the connection between the belief that in fibromyalgia there is a neurological component and an immune component. The new discoveries could help scientists understand what is going on in the muscles nerves and why our brain is hypersensitive to pain. Discoveries in the mouse study indicate there is an immune response component – making fibromyalgia an autoimmune disease.

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We know fibromyalgia has existed for years, but I found it so hard to accept that there is no one test to diagnose fibromyalgia and to treat fibromyalgia. There has been a criteria list developed over the years that one must meet to be diagnosed with fibromyalgia, but there is also lot of ruling out other conditions before diagnosis as well. I know the brain is powerful, but I find myself confused at the thought that the brain misinterpreting pain signals can cause so many other symptoms to arise. How can the brain cause rashes and skin conditions to form? Why do many people with fibromyalgia develop irritable bowel syndrome or have bloating issues to arise?! Why are those with fibromyalgia more susceptible to developing chronic dry eye? There are so many unanswered questions. There must be missing links.

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Liptan goes on to explain with the new discoveries in the mouse study, she’s positive there will be more research on fibromyalgia taking place in the near future. She hopes this research will help form new treatment routes. Liptan shares, pharmaceutical companies need to see a target – something they can intervene in with a medication. If they see this target, they will put billions of dollars into researching. Liptan has already been contacted by a pharmaceutical company asking her opinion about a new medication being made to treat fibromyalgia. Combining what scientists already know and the new findings through recent studies will help unravel more accurate treatment options for fibromyalgia.

It brings hope of finding a better treatment closer to reality when new discoveries are made. Wouldn’t it be great to be able to say one day, “i used to have fibromyalgia!”

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Mouse Study Links:

  1. https://www.the-scientist.com/news-opinion/mouse-study-suggests-fibromyalgia-has-autoimmune-roots-68944
  2. https://pubmed.ncbi.nlm.nih.gov/34196306/
  3. https://www.sciencealert.com/mouse-study-suggests-fibromyalgia-really-is-an-autoimmune-disorder
  4. Here is Dr. Liptan’s video on research and the mouse study. https://www.youtube.com/watch?v=TFQV6hoGS14

Five of the Hardest “pills” to swallow when diagnosed with a chronic condition

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I saw the above picture floating around facebook this week and realized how true these statements are.

Five of the hardest “pills” to swallow in regards to chronic illnesses:

1. Giving up your career. Most people who get diagnosed with chronic conditions often have to face the dilemma of continuing to work or giving up their career or job they are employed in. No matter what job path you follow, the road can become difficult when you factor in a chronic condition like fibromyalgia. Fibromyalgia is very unpredictable and varies day to day. While battling the intense pain, extreme fatigue and any other symptoms that arise, punctuality at a job dwindles. Did you know the pain chronic pain sufferers feel would send people without pain conditions to the hospital seeking relief?!? If I went to the hospital every time I had pain, I would live there because the pain never really goes away. Most people will continue to work for as long as they can to avoid financial burdens. Let’s face it, cost of living is getting expensive and continues to rise every day. Others may not have the opportunity to even consider limiting work hours or ceasing work completely – so they carry on ignoring the pain and other symptoms the best they can. Everyone’s situation will be different, and each and every one of us will have to make the best choice for our circumstances. There are a lot of aspects to consider before making your choice. Writing a pro and con list may help you make your decision. In a study it showed that working can improve one’s overall health and well-being, along with decreased fatigue and pain levels. I’m not so sure I agree with this study, as I found the complete opposite. Maybe for some people fibromyalgia is milder and not so disabling, but for myself I felt I could not continue to work due to the unpredictability and forever changing symptoms that rear their ugly heads. Working as an educational assistant in schools with children with developmental challenges became too overwhelming and demanding that I remained off of work.

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2. There is no cure for your illness. Before I got my solid diagnosis, I yearned to know what was wrong with me. All the unexplained symptoms were very mentally and physically draining. When I finally got told it was fibromyalgia, I was happy to have a diagnosis, but finding out there is no cure is a slap in the face. It usually takes a long time period before one is diagnosed with fibromyalgia, leaving that person trying to manage the symptoms until then. We learn how quickly fibromyalgia can alter life – then to be told there is no cure is difficult to absorb. You wonder how you will survive the rest of your life in pain and start to wonder if you have the strength to do so- somehow you manage to find the courage to get through each day. It can be overwhelming to think about trying to manage a condition the rest of your life that is forever changing. Day by day! That is my best advice. I find looking too far ahead is overwhelming and the anxiety begins to set in. I learn to wake up each morning and gage what my day may look like. If I wake up feeling not well and in pain my day is low key.

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3. Losing friendships/relationships

Sadly, chronic pain conditions can put a strain on one’s friendships and relationships. When one is diagnosed with a chronic condition their capabilities alter daily. Friends I once had connections with, I know longer do because of the limitations fibromyalgia creates. I find myself scared to make plans, because I never know how I will feel. Family and friends may not understand why you avoid going out with them – I try to be honest and make sure they know it is for this reason and I am not avoiding them personally. Your once shared hobbies/activities may soon not be able to be your hobbies anymore due to your condition. For example, you may have joined a sports team such as pickleball or badminton but had to give it up due to high pain levels. You soon lose connection with the other team members because you no longer have anything in common. Fibromyalgia can also strain marriages. A study conducted by the Mayo Clinic reported the following: 1. One out of four felt that his or her spouse didn’t understand fibromyalgia. 2. One out of ten people reported fibromyalgia helped lead to a breakup. I’m lucky in this aspect. My boyfriend is very understanding and supportive.

Chronic pain sufferers will also isolate themselves socially. I know I have. Going out or to visit people can become exhausting. I’m always hesitant to go too far from home because I’m scared the pain or fatigue will go out of control (which happens often). To those reading this who do not have fibromyalgia, I want you to know we do want to engage but dealing with chronic pain makes it difficult. The friends who still message, stop by for visits and understand why we cancel plans spontaneously – thank you!

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4. Yearning to do things your body no longer allows. After being diagnosed with fibromyalgia, my entire life changed. Pain and fatigue put a major damper on how one used to live their life. I miss being spontaneous and taking random road trips just because I could. Now road trips have to be planned carefully and around how I feel. I’ve had to learn to let hobbies go and learn to love new hobbies. I used to love to walk long trails and hike, now if I push myself to do these activities, I know I will be bed ridden for days to come. I’m slowly learning I have to be ok with driving around to look at the sceneries more than hike through them. I used to read a novel a week. I’ve had to learn to love audiobooks, because I can’t concentrate enough to read the sentences to myself. I even tried other activities such as paint by numbers, diamond painting and began puzzles again. What do you miss?!

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5. Accepting you are chronically ill. This is one of the hardest things to do. If you have not read my blog on the grief cycle, please do! Acceptance is the last step in the cycle – a very difficult step at that. Lots of people never really learn to accept being chronically ill. we just learn to be ok with it as life carries on. It took me almost three years to accept my condition and not be so angry all the time. There is no time frame to accepting your reality – of being chronically ill!

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.

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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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