How can I explain this to my family and friends? It is very difficult to do because my disease is “invisible”. So let me start by thanking you for taking the time out of your day to spend 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 disease characterized by widespread pain in muscles, ligaments, and tendons, as well as fatigue and multiple tender points: points of the body where light pressure causes pain. Myofascial pain syndrome is a chronic form of muscle pain. The pain of myofascial pain syndrome centers on tender points in your muscles called trigger points. Trigger points in your muscles can be painful to the touch. And the pain can spread through 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 those who have are often misinformed. And because of this, judgments are made which may not be correct. So I ask you to keep an open mind to explain who I am and how FM / MPS has attacked not only my life, but also the ones I love.
I can’t 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, get me something to eat or drink, and have that worried, understanding look on you. face. However, in the case of fibromyalgia, many people will learn that they would rather have a broken leg all the time, instead of going through the kind of pain that these disorders cause. For me, a broken leg is even a bad example to compare the suffering with these disorders and an insult to those of us who have these disorders.
You see, I have a disease that you cannot see; a disease for which there is no cure and which prevents the medical community from knowing how to treat and fight this demon, whose attacks are relentless. My pain works in silence, steals my joy and replaces it with tears. On the outside, we look like you. You won’t see my scars like you would a person who, for example, had a car accident. You won’t see my pain like I would with someone 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’t see and understand it.
You have to see with your ears and your heart what your eyes cannot see. You must listen carefully to what I am saying. It is possible that what I am describing does not make much sense and it is difficult for you to understand it. Sometimes it might seem like a different universe than the one I’m talking about. Be aware that this is probably the case. You don’t have to fully understand my world and you can’t. However, listen to my pain, listen for the warning signs whenever there is a danger that may require additional help. I like to call it “send troops”. At all times, I don’t seem to be in touch with reality.
Please don’t be mad at my apparent lack of interest in doing things; I’m punishing myself enough, I assure you. My tears flow many times when no one is there. My shame is covered by a joke or a laugh, but inside I want to die. You will hear a lot about me that seems easy to resolve. You may wonder why I always make the same “bad” decisions. Why haven’t I learned at this time? Why can’t I see the meaninglessness of my behavior? It may seem like I’m putting my life back together and they’ve hit rock bottom again.
Please understand the difference between “happy” and “healthy”. When you have the flu you probably feel miserable, but I have been sick for years. I can’t be miserable all the time, in fact, I work hard not to be miserable. So if you talk to me and I look happy, it means I’m happy. That’s all. I may be tired I may be in pain. I can be sicker than ever. Please don’t say, “Oh, you speak better!” I don’t sound better, I look happy.
What is happening here? Am I lazy, stupid, etc.? No My brain and physical body are very different from yours. I live 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 others. I was called unreliable because I am forced to cancel plans I made at the last minute due to burns and pain in my legs, arms and shoulders. The pain can be so intense that I cannot put my clothes on and I am in tears because I am losing another activity that I enjoyed very much and once I enthusiastically participated. Am I experiencing mood swings? If it hurts me I can be mad sad, depressed or any of the hundred states of the world. I’ll never know what the mood I’ll wake up with. I can treat you cruelly and tell you terrible things. I can ignore you completely or cry over your shoulder without stopping when I’m at Fibro Flair. You may be wondering what you said or did that you did to me this way. Well, you haven’t done anything, it’s fibromyalgia and all of its underlying factors that are causing it. You may be wondering what you said or did that you did to me this way. Well, you haven’t done anything, it’s fibromyalgia and all of its underlying factors that are causing it. You may be wondering what you said or did that you did to me this way. Well, you haven’t done anything, it’s fibromyalgia and all of its underlying factors that are causing it.
Although the most predominant symptoms of fibromyalgia include generalized pain and persistent fatigue, the cognitive deterioration resulting from this condition can become the most exasperating. Commonly referred to as fibro-fog, this symptom is a conglomeration of cognitive problems. It is understood that fibrous fog is a physical symptom of fibromyalgia and not a psychological symptom. Just as no two people suffer from fibromyalgia the same way, foggy fibrous fog also has a varying range of indications, which include: mental confusion, confused thinking, short-term memory loss, disability. to concentrate or pay attention and language failures. .
That’s why I sometimes feel like a child. The other day I put the eggs I bought in the pantry, on the shelf, instead of the refrigerator. When I speak with people, I often lose my train of thought in the middle of a sentence or forget the simplest word needed to explain or describe something. Please try to figure out what it feels like to be home to make sure the stove is off after preparing an occasional meal. Please try to understand what it is like to “lose” the keys, only to find them in the freezer. While I try to maintain my dignity, the devil is attacking me all the time. I have a physical illness and it is not my fault and I did not ask for it. I don’t like it and I don’t deserve it.
Deep in the sleep cycle, people with fibromyalgia typically lack restful sleep. We know that in the deepest levels of sleep, called delta sleep, a person’s mind performs internal household 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 memorize information and to function at a normal level of mental efficiency.
I sleep, when I get something I get restless and often wake up from the pain from the sheets on my legs or from my uncontrollable contraction. I spend a lot of time, dazed, with Fibro-fog mocking me as I stumble and cling to the clarity.
Just because I can do something one day doesn’t mean I can do the same the next day or next week. Maybe I could take this walk after dinner on a hot July night; The next day, or even the next hour, I may not be able to get to the refrigerator for a cold drink because my muscles have started to cramp and block or go into uncontrolled spasms. There are those who say “but that’s what you did yesterday!” “What is your problem today?” The pain I feel for these words scares me so much that I have disappointed my family and friends; and even then they don’t 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 this. I like to tell this joke to make someone else’s face light up and smile at me. I find it fun to be with you if you spend time with me on my own playground; is that a lot to ask? I want nothing more than to be a part of your life. I discovered that I can be a strong friend in many ways. I am your friend, your supporter and I will often be the one to study your latest project. Often times I will be your biggest fan and the whole world will know how proud I am of your accomplishments and how honored I am 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 might think you know all about the subject, but there’s more information.
mation of one who believes. It’s more complicated than you might think and it’s more of a life changing than you might think.
Lend a hand. If you want to help someone with fibromyalgia, just ask what you can do. Be flexible with the invitations and plans you make. Realize that sometimes the pain of fibromyalgia is overwhelming. To be active. Go with them to a doctor’s appointment and pay special attention to their treatment. You can take notes at the doctor’s office and then review them together at home. Don’t take it personally. Some people with fibromyalgia experience 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 much different. I also have hopes, dreams, goals and what the heck. Do you have an invisible demon attacking you that no one else can see? Did you have to fight to crash and get to your knees? I will be by your side, win or lose, I promise; I’ll be there as best I can. I’ll give it my all, I promise. But I have to do this my way. Please understand that I myself am in such a struggle and know that I have little hope for a cure or effective treatment, at least now.