My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. Read More.
What makes a disease, disorder or illness real? The terms used for any condition have been coined by someone for the first time and added to medical manuals to account for certain diagnostic markers or symptoms.
What makes that condition real? The lack of a specific test to definitively conclude the presence of fibromyalgia does not make it any less real than the many conditions that likewise lack a particular test for diagnosis. Diagnosis of fibromyalgia is challenging and often involves a process of elimination. Nonetheless, there are specific diagnostic criteria to be used in a diagnosis of fibromyalgia.
Fibromyalgia is also an invisible illness. Just because someone may look ‘fine’ does not mean that they are. Many Fibromites and those with chronic pain have become skilled at downplaying just how poorly they’re feeling and how bad their pain and other symptoms really are. “I’m fine” is probably our most common lie.
There are several different version of this all of which are accurate.
Just because a condition cannot be seen from simply looking at a person does not mean the illness does not exist.
According to the World Health Organization, disability has three components:
Impairment in a person’s body structure or function, either physical or mental. Examples include loss of a limb, loss of vision or memory loss.
Activity limitation, such as difficulty seeing, hearing, walking, or problem solving.
Participation restrictions to normal daily activities. Examples include working, and engaging in social & recreational activities,
So as you can see, not all persons with disability have necessarily have a physical component. Additionally, there are medical conditions and disabilities that are not visible including diabetes, lupus & fibromyalgia.
I’m a good example of that in that I have fibromyalgia and other issues but I don’t use a cane at the moment. As a result, I don’t look like I have an impairment . Pain is invisible so they don’t know and cannot tell that my pain level is a 1/10 (I know, very funny) or 8/10 today.
Not all disabilities are visible! In fact, the majority are invisible.. Here is a ist of many of the conditions that are not readily apparent & are ‘invisible’. This list is by no means exhaustive
Chronic Pain
Arthritis, both rheumatoid and osteo.
CFSME or MECFS
Fibromyalgia
Mental Health including but not limited to depression, anxiety, PTSD,, bi-polar, & schizophrenia…
Sleep disorders including sleep apnea RLS and TMJ
Diabetes
Epilepsy
Digestive issues such as Crohn’s, Celiac, Colitis, & IBS,
Endometriosis
HIV or AIDS
Chronic migraines
Lupus
Lyme disease
Multiple sclerosis or MS,
Severe Food & Chemical Allergies including Gluten.
Renal failure & heart failure
Brain injury including concussions, stroke & meningitis
Spinal Injuries
Fetal Alcohol Spectrum Disorder,
Narcolepsy,
Repetitive stress injuries like tendonitis & carpal tunnel syndrome
Fibromyalgiais a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points – places on your body where slight pressure causes pain.
Myofascial Pain Syndromeis 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 the pain can spread throughout the affected muscle.
I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, 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 assaulted not only my life but those whom I love as well.
I cannot show you a physically open wound to show how much pain I’m in. If I could you would take one look at that, tell me to sit right down, get me a pillow, offer me something to eat or drink and have that concerned and understanding look on your faces. However with Fibromyalgia, you will hear from many people that they would rather have a broken leg any day than suffer the kind of pain these disorders inflict. To me, a broken leg is even a poor example to compare suffering to these disorders and an insult to those of us with those disorders. You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You won’t see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand….
You must see with your ears and your heart what your eyes cannot see. You must listen carefully to what I am telling you. What I describe to you may not make much sense to you and may be difficult for you to understand. Sometimes it may seem to you to be a different universe that I discuss. Know that it probably is. You don’t have to fully understand my universe and you cannot possibly. However hear my pain, listen for red flags always of any danger signals where you may need to help with added assistance. I like to call it “sending in the troops.” Anytime I do not seem in touch with reality. Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die. You will hear many things from me that to you seem as easily resolvable. You may wonder why I make the same “wrong” decisions over and over again. Why haven’t I learned by this time? Why can’t I see the senselessness of my behaviour? I may seem to be getting my life together and them bottom out all over again. Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.
What is happening here? Am I lazy, stupid, etc? Nope. My physical brain and body is very different than yours. I experience life different than the way you do. I feel different than you do. Most of my “friends” are gone; even members of my own family have abandoned me. I have been accused of “playing games” for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because of the burning and pain in my legs or arms and shoulders. The pain can be so intense that I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. Do I experience mood swings? If I am hurting I may be angry, sad, depressed, or any of the hundred moods in the world. I’ll never know what mood I will wake up with? I may treat you cruelly and say horrible things to you; I may ignore you completely, or cry on your shoulder unstopping when I’m in Fibro Flare. You may wonder what you said or did that made me this way. Well you did nothing it’s the Fibromyalgia and all its underlining factors causing this.
While the most predominant symptoms of fibromyalgia include widespread pain and persistent fatigue, the resulting cognitive impairment of this condition may be its most maddening. Commonly referred to as fibro fog, this symptom is a conglomeration of cognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia, not a psychological one. Just as no two individuals experience fibromyalgia in the same way, fibro fog also has a varying range of indications, including: Mental confusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or pay attention, and Language lapses.
This is why I feel like a child at times. Just the other day I put the eggs I bought at the store in the pantry, on the shelf, instead of in the refrigerator. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my 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. As I try to maintain my dignity the demon assaults me at every turn. I have a physical illness and it isn’t my fault and I didn’t ask for it I don’t want it and I don’t deserve it.
Occuring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person’s mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency.
Sleep, when it happens or restless and unrestorative
Sleep, when I do get some, it is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.
Just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family and friends down again; and still they don’t understand.
On a brighter side I want you to know that I still have my sense of humour. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
All I ask is that you become educated about Fibromyalgia. I am someone in your life that suffers from Fibromyalgia. You may think you know everything there is to know about it, but there is more information out there than you think. It is more complicated then you think, and it is more life changing then 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. Don’t 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 that much different. I too have hopes, dreams, goals and this demon. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.
Thank you for spending your time with me today. I hope we can work through this thing, you and me. Please understand that I am just like you.
If you suffer from chronic pain of almost any type, you are at risk for developing a physical “disuse” syndrome.
What is disuse syndrome?
Basically, it describes the effects on the body and mind when a person is sedentary.
Disuse syndrome was first characterized around 1984 and, since that time, has received much attention in relation to back pain problems, other chronic pain disorders, and other illnesses. It has been generalized beyond chronic pain problems and some feel it is related to “the base of much human ill-being.”
The disuse syndrome is caused by physical inactivity and is fostered by our sedentary society.
Effects of disuse syndrome
This disuse of our bodies leads to a deterioration of many body functions. This is basically an extension of the old adage “Use it or lose it.”
There are several physical consequences from disuse. These occur in many body systems, most notably those of the muscles and skeleton, cardiovascular, blood components, the gastrointestinal system, the endocrine systems, and the nervous system. For instance, consider the following:
In the musculoskeletal system, disuse of muscles can rapidly lead to atrophy and muscle wasting. If you have ever had an arm or a leg in a cast, you will be familiar with the fact that the diameter of the affected limb may be noticeably smaller after being immobilized for some time.
Cardiovascular effects also occur due to disuse including a decrease in oxygen uptake, a rise in systolic blood pressure, and an overall blood plasma volume decrease of 10 to 15 percent with extended bed rest.
Physical inactivity also leads to nervous system changes, including slower mental processing, problems with memory and concentration, depression, and anxiety.
A key factor in chronic pain
Many other detrimental physiological changes also occur. Disuse has been summarized as follows: “Inactivity plays a pervasive role in our lack of wellness. Disuse is physically, mentally, and spiritually debilitating.” Many experts believe that the disuse syndrome is a key variable in the perpetuation of many chronic pain problems.
The disuse syndrome can result in a myriad of significant medical problems and increase the likelihood of a chronic pain syndrome developing or becoming worse.
Unfortunately, common attitudes and treatments in the medical community often lead to more passive treatment without paying attention to physical activity and exercise (of any type).
The disuse syndrome can also lead to a variety of emotional changes that are associated with an increased perception of pain.
So, what to do?
So, if you are suffering from disuse syndrome, you may be wondering what you can do about it. It can be overwhelming for some people in chronic pain to consider how to get moving. In my next blog post, I will discuss some practical ways you can take some positive steps to get more mobile.
Not All Disabilities Are Visible
By Kate Mitchell, May 3, 2016
Original Post: Huffington Post
Too often recently, friends or online acquaintances of mine have been accused of faking their disability. I personally am also disabled. I have autoimmune arthritis, fibromyalgia, anemia of chronic inflammation, and asthma. I’ve been in pain every day since 2001, and over the past 6 years, it has become moderate to severe every day. I experience pain in 54 joints. I am unable to work full-time or go to school full-time at the moment. I take 40 pills a day and 4 inhalers. I’m at the doctor every single week. I’ve had 5 surgeries. But you would never know any of this by just looking at a picture of me. And I’m not alone, as the vast majority of people who have disabilities have invisible ones. But because the majority of people have the idea that everyone who is disabled looks disabled, too many treat disabled people poorly. They shame them, don’t allow them to park in certain places, don’t allow them to use a wheelchair, and more. This is so beyond not okay, and it stems from the misconception that everyone who is disabled looks disabled.
What makes someone disabled? The definition of disabled is “incapacitated by illness or injury” or “physically or mentally impaired in a way that substantially limits activity especially in relation to employment or education.” As I learned while studying for my degree in secondary education, someone is handicapped if their incapacitation is temporary and disabled if it is permanent. For example, someone who has had ankle surgery is handicapped until they recover. If you’d like to read more about this, Emory University School of Medicine has a great explanation.
Everyone who is disabled looks disabled, right? Nope! As the folks at Invisible Illness Awareness Week figured out based on data from the 2002 US Census Bureau, 96 percent of people who live with an illness live with an invisible one, and 73 percent of people who live with a severe disability do not use devices like a wheelchair. This means that when you look at them, you wouldn’t know that they’re disabled. Think about how many people you see who are clearly disabled during an average week. Statistically, for every person you’ve seen who looks disabled, you’ve seen at least 4 more who are disabled but don’t look it.
So how can you tell if someone is disabled? Often, you can’t, so if someone says that they are, you need to take them at their word. If someone looks fine but parks in disabled parking — and have a placard for it — you can’t accuse them of faking it. If someone looks fine but wants or needs a wheelchair, don’t question it.
At the same time, we do need to make sure that people who don’t have disabled parking don’t park in those spots. They also can’t park there with their blinkers on while they wait for someone. If you believe that you should be able to park there because of a health issue, talk to your doctor. If your doctor disagrees with you, don’t park there. If your doctor agrees with you, you still need to wait until you get your placard in the mail before you park there. Anyone who parks in the disabled parking spots without a placard of plate is breaking the law.
What can you do about that? If you see someone park in the disabled parking spot without a placard, call them out on it or write down their license plate and contact the police. People parking in those spots without a placard are breaking the law pure and simple. The more they get away with it, the more they will do it. Oh, and doing this can prevent someone who needs it from going somewhere and doing something they can’t do without the parking. However, before bringing it up with someone, double check to see if they have a placard and you just can’t see it. Verbally attacking someone because you don’t think they’re disabled makes their life already harder than it needs to be.
Fibromyalgia 
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