How do I explain this to my family and friends? This is very difficult to do since my illness is “invisible”. So let me start by thanking you for taking the time of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and theirs is appreciated.
Fibromyalgia is a chronic condition characterized by widespread pain in the muscles, ligaments and tendons, as well as fatigue and multiple tender points: places in the body where mild pressure causes pain. Myofascial pain syndrome is a chronic form of muscle pain. The pain of myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points in your muscles can be painful when touched. And pain can spread throughout the affected muscle.
I want to talk with you about fibromyalgia (FM) and chronic myofascial pain syndrome (MPS). Many have never heard of these conditions and for those who have done so, many are misinformed. And because of this, judgments are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am and how FM / MPS has attacked not only my life but also those I love.
I can not show you a physically open wound to show how much pain I feel. If I could, you could take a look, tell me to sit down, bring me a pillow, offer me something to eat or drink and have that worried and understanding look on your faces. However, with fibromyalgia, many people will hear that they prefer to have a broken leg at any time instead of suffering the kind of pain that these disorders cause. For me, a broken leg is even a bad example to compare suffering with these disorders and an insult to those of us with those disorders.
You see, I suffer from a disease that you can not see; a disease for which there is no cure and which keeps the medical community confused about how to treat and fight this demon, whose attacks are implacable. My pain works silently, stealing my joy and replacing it with tears. On the outside we look like you and me; You will not see my scars as you would with a person who, for example, suffered a car accident. You will not see my pain in the way I would with a person receiving chemotherapy for cancer; however, my pain is just as real and debilitating. And in many ways, my pain can be more destructive because people can not see it and do not understand it.
You must see with your ears and your heart what your eyes can not see. You must listen carefully to what I say. It is possible that what I describe does not make much sense and it is difficult for you to understand it. Sometimes it may seem like a different universe from the one I speak. Know that it probably is. You do not have to fully understand my universe and you can not. However, listen to my pain, listen to the warning signs whenever there is any sign of danger in which you may need additional help. I like to call it “send troops”. At any moment I do not seem to be in touch with reality.
Please, do not be upset by my apparent lack of interest in doing things; I punish myself enough, I assure you. My tears spill many times when there is no one around. My shame is covered by a joke or a laugh, but inside I want to die. You will hear many things about me that seem easy to solve. You may wonder why I make the same “wrong” decisions over and over again. Why have not I learned at this time? Why can not I see the lack of sense of my behavior? It may seem that I am putting my life together and that they hit bottom again.
Please understand the difference between “happy” and “healthy”. When you have the flu, you probably feel miserable with it, but I’ve been sick for years. I can not be miserable all the time, in fact, I work hard not to be miserable. So if you talk to me and I sound happy, it means that I am happy. That is all. I can be tired. I may have pain. I may be sicker than ever. Please do not say, “Oh, you’re sounding better!” I’m not sounding better, I’m sounding happy.
What is hapening here? Am I lazy, stupid, etc? No My brain and my physical body is very different from yours. I experience life differently from the way you do it. I feel different from you. Most of my “friends” are gone; Even members of my own family have abandoned me. I have been accused of “playing games” because of the sympathy of another. I have been called unreliable because I am forced to cancel the plans I made at the last minute due to burning and pain in my legs or arms and shoulders. The pain can be so intense that I can not put on my clothes and I’m left with tears because I lose another activity that I used to love and once I participated enthusiastically. Do I experience mood swings? If it hurts, I can be angry, sad, depressed or any of the hundred moods of the world. I will never know with what mood I will wake up. I can treat you cruelly and tell you horrible things; I can ignore you completely, or cry on your shoulder without stopping when I’m in Fibro Flair. Maybe you wonder what you said or did that you did to me this way. Well, you did not do anything, it’s Fibromyalgia and all its underlying factors that cause this.
While the most predominant symptoms of fibromyalgia include generalized pain and persistent fatigue, the cognitive deterioration resulting from this condition can be its most maddening. Commonly known as fibro fog, this symptom is a conglomerate of cognitive challenges. It is understood that fibrous fog is a physical symptom of fibromyalgia, not a psychological one. Just as there are not two people who experience fibromyalgia in the same way, foggy fibrous fog also has a variable range of indications, which include: mental confusion, confused thinking, short-term memory loss, inability to concentrate or pay attention and language failures.
That’s why I feel like a child sometimes. Just the other day I put the eggs that I bought in the pantry, on the shelf, instead of in the refrigerator. When I talk to people, I often lose the thread of my thoughts in the middle of a sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have me behind me again at home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the keys, only to find them in the freezer. While I try to maintain my dignity, the Devil assails me at all times. I have a physical illness and it’s not my fault and I did not ask for it. I do not love her and I do not deserve her.
Occurring at the deepest level of the sleep cycle, people with fibromyalgia generally lack sufficient restful sleep. We know that in the deepest levels of sleep, called delta wave sleep, a person’s mind carries out internal domestic tasks. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get enough delta wave sleep affects the ability to remember information and operate at a normal level of mental efficiency.
I sleep, when I get something, is restless and I wake up often because of the pain of the sheets on my legs or because I contracted uncontrollably. I go through many of my days, dazed, with Fibro-fog laughing at me as I stumble and cling to clarity.
Just because I can do something one day, that does not mean I can do the same thing the next day or next week. Maybe I can take that walk after dinner on a warm July night; It is possible that the next day, or even the next hour, I can not walk to the fridge to have a cold drink because my muscles have started to get cramp and block or suffer spasms without control. There are those who say “but that’s what you did yesterday!” “What is your problem today?” The pain I feel for those words scares me so much that I have disappointed my family and friends; and even then they do not understand.
On the positive side, I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love telling that joke to make someone else’s face light up and smile at my wit. I find it fun to be with you if you spend time with me on my own playground; this is a lot to ask? I do not want anything more than being part of your life. I have discovered that I can be a strong friend in many ways. I am your friend, your supporter and many times I will be the one who investigates your last project; Many times I will be your biggest fan and the world will know how proud I am of your achievements and how much I am honored to have you in my life.
All I ask is that you educate yourself about fibromyalgia. I am someone in your life who suffers from fibromyalgia. You may think that you know everything there is to know about it, but there is more information.
mation of the one who believes. It’s more complicated than you think, and it’s more of a life change than you think.
Lend a helping hand. If you want to be helpful to someone with fibromyalgia, just ask what you can do. Be flexible with invitations and plans that you have made. Understand that sometimes the pain of fibromyalgia is overwhelming. Be active. Accompany them to a doctor’s appointment and take an active interest in their treatment. You can take notes at the doctor’s office and then review your notes together at home. Do not take things personally. Some people with fibromyalgia suffer from sudden mood changes. Try not to take these mood swings personally as they are part of the syndrome.
So you see, you and I are not very different. I also have hopes, dreams, goals and this devil. Do you have an invisible demon that assaults you and nobody else can see? Have you had to fight a fight that crushes you and puts you on your knees? I will be by your side, win or lose, I promise; I will be there the way I can. I will give everything I can, I promise. But I have to do this my way. Please understand that I am in such a struggle myself and I know that I have little hope of a cure or effective treatments, at least now.