Tomorrow is a very special day for me! People around the world are using May 12th as the day to make their voices heard for fibromyalgia and other chronic pain disorders. These disorders need to be made visible so that we can progress in the right direction towards healing and a possible cure. Fibromyalgia is considered an invisible disorder because people around you may not always be able to see that you are sick. (It’s because we are really good at hiding our emotions.—Pat yourself on the back)! There will be a lot of fundraisers and events being held around the nation in order to raise awareness and support the National Fibromyalgia and Chronic Pain Association whose goal is to help people living with chronic pain disorders. Nearly 100 million Americans have chronic pain and about 5 million Americans have fibromyalgia. I’m going to do my part today by allowing my voice to be heard for the millions of fighters around the world!
I’m sure by now, in 2016, we’ve all seen the commercials for prescription medications like Lyrica, Cymbalta, Savella, etc., but most people do not delve any further into finding out exactly what fibromyalgia is. Heck, a lot of doctors don’t even know how to properly diagnose it, but that is a topic for a different day! I believe in commercials for Lyrica it states that fibromyalgia is a disorder caused by overactive nerves…and then it goes into the long list of side effects. *I’m rolling my eyes here.* Anyway, I feel like it is very crucial for you guys to understand what fibromyalgia is so you can respect and love the people in your life that fight with this disorder daily.
[bctt tweet=”Nearly 100 million Americans have chronic pain and about 5 million Americans have fibromyalgia.” username=”@Merci_Brite”]
Chronic Pain Disorders
Fibromyalgia and other chronic pain syndromes/disorders are more than overactive nerves, it affects every single cell in your body. According to the Mayo Clinic, fibromyalgia is, “a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.”¹ Because I also have chronic fatigue syndrome as well as POTS/dysautonomia, I figured I should provide those definitions as well. POTS stands for postural orthostatic tachycardia syndrome which basically means it’s a form of dysautonomia that is “associated with the presence of excessive tachycardia and many other symptoms upon standing.”² Dysautonomia is “an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System.”³ Chronic fatigue syndrome (the definition that I hate because it’s not accurate for the latest research development) is “a complicated disorder characterized by extreme fatigue that can’t be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn’t improve with rest.”4
Let’s delve a little deeper into fibromyalgia, shall we? Doctors have a very challenging time diagnosing fibromyalgia. Part of the reason is because some doctors do not keep up-to-date with the latest fibromyalgia diagnosis tests and symptom qualifications. As you all probably know my mother had fibromyalgia as well as a host of other autoimmune diseases. Well, I’ve been symptomatic for about 8 years, but didn’t get diagnosed until last year. I’ve been to so many specialists that I’ve lost count, if I had to guess, I would say I’ve seen about 25 specialists. About 5 years ago, I visited the doctor that diagnosed my mother with fibromyalgia, and she told me that I didn’t have it because I didn’t meet all of the symptom qualifications. Now mind you we are all individualistic human beings with bodies that do not function exactly the same! She refused to diagnose me because I was missing 4 of the trigger points on the physical exam. -____- Because she was, uhmmm, a stickler for following the rules I had to continue feeling like a hypochondriac that needed to be put on antidepressants indefinitely.
[bctt tweet=”If you feel like you have most of the symptoms of fibromyalgia PLEASE find a competent doctor to diagnose you.” username=”@Merci_Britte”]
If you feel like you have most of the symptoms of fibromyalgia PLEASE find a competent doctor to diagnose you. Don’t be afraid to seek a second or a twenty-second opinion! Fibromyalgia is much more than an invisible disorder; it affects every part of you, and can kill you and your spirits if you do not get the proper diagnosis!
Dysautonomia — I have a very similar story with another doctor like the fibromyalgia doctor. This doctor is world-renowned so I felt very grateful when I was able to get an appointment to meet with him. His bedside manner was great and he promised me he would do his best to give me answers. Several thousands of dollars later I figured out he actually didn’t even perform the tests according to the standards set by the manufacturer…again, I still didn’t have a diagnosis from him after it was all said and done. Defeated and discouraged doesn’t even begin to describe how I felt. I was so convinced that I had dysautonomia because I had the symptoms: neuropathy, lightheadedness, tachycardia, chest pain, gastrointestinal problems, exercise intolerance, etc. But God is good because I was finally diagnosed with that as well!
Chronic fatigue syndrome
Chronic fatigue syndrome is a little bit more difficult for me to discuss because there is a “stigma” surrounding people that have chronic fatigue. Everyone wants to tell you that you should just get more sleep, but it’s not their fault for not understanding what all chronic fatigue syndrome entails. Is there some sort of petition out there that I can sign to get the name changed? Lol, I hate the name! Here are some of the symptoms of chronic fatigue syndrome: loss of memory or concentration, poor short-term memory, difficulty to plan and organize your thoughts, difficulty finding the right words to say, feeling disoriented, sleep problems, muscular pain, joint pain, headaches, tender lymph nodes, etc. Yep, it’s much more than just being tired.
A lot of doctors and research websites are not aware of the causes for chronic fatigue syndrome and a lot of other chronic pain disorders. Thankfully, my latest specialist is the best there is at what she does. She has been able to create tests to diagnose these different disorders more effectively than the standard practices of today. She is also well aware of what causes these disorders. Vitamin and mineral deficiencies play a key role in developing these pain disorders. Let me do my best to explain this at a cellular level. We all remember learning about mitochondria in high school biology class. The mitochondria are the powerhouses of our cells. They tell our cells what they need to do in order to get the job done. Specifically, in chronic fatigue syndrome, the mitochondria are not able to produce the proper amount of ATP energy (it’s the energy that our cells use) needed by our body to operate at optimal levels. The cells will die quicker and do not turnover as quickly compared to a “healthy, normal person.” Everyone’s cells die daily, but most people’s cells are able to regenerate quickly as well; therefore, they do not have to experience a lot of the symptoms that chronic pain sufferers experience. There are medicines we can take in order to support our mitochondria, but it’s important that our diet contains foods that can help us manage our symptoms, and possibly heal us.
[bctt tweet=”…wouldn’t trade the growth that we have gained during this process for anything in the world! ” username=”@Merci_Britte”]
What we want you to understand
Living with chronic pain isn’t a bowl of cherries, but we manage to get through it. We do our best to bring some kind of normalcy to our lives. It’s a part of our story and most of us wouldn’t trade the growth that we have gained during this process for anything in the world! Yes, we may never be cured, but we will definitely keep on fighting till the end and keep on working towards a cure. We need your help in this fight; we need all of you to spread the awareness of chronic pain disorders with every single person you know!
I hope this was able to teach you a little bit more about chronic pain disorders so that you can understand the fighters that you will interact with in your life. We tolerate a lot, from our bodies to dealing with people; we want others to understand our plight and not pity us. We’d give anything to be “normal” again, but in the meantime, we will do our part in educating the masses on what it’s like to be a chronic pain fighter! If you want to talk privately about this subject matter shoot me a message or you can comment below and share your story and/or questions in the comment section.
P.S. Please follow me on Bloglovin’, Facebook, Pinterest, Instagram and Twitter. Join our growing community! Share this post with your friends and family in support of National Fibromyalgia Awareness Day!
P.P.S. I will be holding a Twitter Q&A at 6:30 pm central time on May 12 to answer any questions or concerns about Fibromyalgia or other chronic pain disorders! Follow me @Merci_Britte to join in on the discussion.
1 Mayo Clinic – Fibromyalgia http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243
2 Dysautonomia International – POTS http://www.dysautonomiainternational.org/page.php?ID=30
3 Dysautonomia International – Dysautonomia http://www.dysautonomiainternational.org/page.php?ID=34
4 Mayo Clinic – Chronic Fatigue Syndrome http://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/basics/definition/con-20022009