What exactly is ME/CFS “Chronic Fatigue Syndrome” Also known as Myalgic Encephalomyelitis & SEID?
Those of us who have a chronic ”Invisible” illness know that our looks can be deceiving. That, often times, we don’t look sick to others, although, we feel deathly ill inside of our bodies. We hear the words, “But you don’t look sick” quite often. At times, this only adds to the frustration and suffering that we are already enduring. Some people have good intentions and are just commenting on how well we look even though we are sick. And others truly mean “Hey, there’s nothing wrong with you, get on with it.” Either way we can’t control what others think or say. As hard as it is, sometimes the only thing we can do is let it roll off our backs and keep pressing on.
What brought me to writing this article was several readers wrote in and asked me to write something that could articulate and capture the true nature of Me/cfs. They wanted something that they could share with their friends, family and doctors to bring more understanding to what they are going through. So today, I’m going to try to tackle it as best as I can.
But before I dive into what I want to talk about today, I want to let you guys know about some upcoming things that are in the making. A blogger, who is very young in age, that also has me/cfs contacted me to see if I could share some tips in an upcoming blog entry of hers. She also asked other chronic illness sufferers if they could also share one tip with family and friends on what to say to someone who is sick/ill. I'm sure the collaboration will definitely be something worth reading. Sarah‘s website is mentalolympian.com. She has great information about me/cfs and chronic illness on her site.
Later on in this article, I'm going to go ahead and give you guys a sneak peek at the tip I submitted. I hope that this will help people whose family, friends or Medical Practitioners may not understand how serious this disease is.
So what exactly is Me/cfs and how does it affect our lives?
The name "Chronic fatigue syndrome" was first given to the illness when no one could medically understand or explain the disease. Therefore, starting the stigma that this disease is just “being tired”. After years of research and false information, they are now seeing the science and reasons for our extreme disability.
This is a very serious neuroimmune disease.
This is not just "tiredness" that we are dealing with. Science and testing are finding that we have profound malfunctions in our autonomic nervous system. Our autonomic nervous system is automatic. It does all the things in our bodies that we don’t think about automatically, like heart rate, breathing, blood pressure, sweating, urinary functions. A malfunction in the autonomic nervous system can cause severe and lethal issues inside the body.
When our nervous system isn't working right, it then causes abnormalities. They are finding abnormalities in our immune, circulatory, cardiovascular and respiratory systems. They are also finding abnormalities in our mitochondria and in the way that our cells work to keep our bodies functioning.
The M.E in me/cfs stands for Myalgic Encephalomyelitis. This is the proper name for this condition.
The meaning of Myalgic Encephalomyelitis is muscle pain and inflammation of the brain and spine.
People with me/cfs have been found to have inflammation in their brain and spine.
Recent studies have shown that People with lung cancer, stroke, diabetes, etc. have a higher quality of life than those with ME/CFS. I will provide a link at the bottom of this page for the documented outcome of that study. However, people can recover from this illness.
Let’s talk about MS (multiple sclerosis) for a minute. There’s a similarity between me/cfs and MS. Let me explain. Many years ago when they didn’t know anything about MS, patient’s would go to see their doctors with very troubling symptoms and were told that they had depression or were hypochondriacs. These MS patients were having severe physical and neurological symptoms inside of their bodies but because doctors didn’t have any tests that could diagnose or confirm that what these patients were saying was true, they just labeled these very sick patients with psychiatric disorders. It wasn’t until much later, during imaging that they found true evidence that these patients had lesions on their brains. Some MS sufferers were still able to work and function at some level but then would have relapses or flares in which time their bodies wouldn’t go. People just thought that they were faking their illness or were depressed.
I actually went to nursing school with a woman who had MS. She was in school everyday and had no problems with walking and no one could ever have guessed, just by looking at her, that she had MS. The thing is, she was having symptoms, just no one could see them on the outside. It was a battle for her daily. If she missed medications she would have flare ups that completely disabled her. But for the most part, during that school year she was able to keep her MS in check and was able to graduate.
Does any of this sound familiar to you? For us Me/cfs sufferers, we also battle with these same exact flares and remissions. We are often times not diagnosed accurately because we don’t look completely ill on the outside. We don’t have a broke bone with a cast or anything visible on the outside that lets anyone see the severe symptoms that we feel on the inside. Me/cfs is often downplayed, and in the past, sufferers were told that they weren’t sick, that they had psychiatric disorders. This is still going on today. It’s like history is repeating itself. We are now finding ourselves fighting the same battle that MS patients fought decades ago. This doesn’t seem morally right. It really “Chaps my bottom“ that people actually get treated this way while being so physically ill. I just can’t wrap my mind around it.
That’s why these illnesses are often times described as invisible illnesses. Others can’t see the struggle but the struggle is very real.
MS and Me/cfs are also similar in that no two people are the same.
Some with MS can function and work while others are bedridden and can’t move or talk.
Same with Me/cfs, some of us have cycles of being able to get out and function and there are times that we have relapses and find ourselves bedbound for weeks or months at a time. Yet, others with me/cfs are bedridden and have to lay in complete darkness for years being tube fed and are unable to talk. Just being in the light can cause them severe pain.
Now that we’ve discussed some of the similarities between Me/cfs and MS we can move along.
Okay, so here’s the tip that I shared with mentalolympian.com for her upcoming article. It went a little something like this......
I was 35 years old when I was diagnosed with Me/cfs, Pots, Fibromyalgia and Hypermobility. I was a nurse at the time and my whole life was what I considered to be healthy. I was a very active and independent woman. So when I lost my ability to function and lost my career due to debilitating symptoms, I was devastated. The mental battle is just as hard as the physical battle when you have a chronic illness.
Here's an example of what coming down with a chronic illness is like. Have you ever had the flu? The worst kind ever, where you can't get up and possibly feel the need to be hospitalized? For those of us who have a chronic illness, it's like catching the flu but it never goes away. It's chronic and it stays with us. Some days are better than others but we fight debilitating symptoms daily. There are times I can make it to church but then there are months that I can't. I usually always try to make it to my daughters ballgames. She is my first priority. In order to participate in her life, I have to lay in bed for days before her game, letting my housecleaning go just so I can preserve the energy to shower, put my makeup on, fix my hair and attend her ballgame for that day. Our looks can definitely be deceiving. We are battling way harder than it seems. We often times fake feeling well because we don't want to draw attention to ourselves or feel like others pity us. When you see us, every now and then, on a good day, it doesn't show an accurate picture of what goes on in our lives behind the scenes.
There's a few tips that I could share with those who have loved ones or friends with chronic illness. Please believe them, it truly is a horrific amount of suffering. Try to educate yourself as much as you can about the illness. I think knowledge brings about wisdom and understanding. If you understand the illness, you will better know how to talk and respond to your loved one who is suffering with this. I promise, we are not lazy and in fact we would give almost anything to go back to work and be able to function. We are not just laying out of church or skipping out on our responsibilities, in fact it's actually an extra form of suffering for us not to be a part of worship and fellowship with God's people. If we feel like we have to defend ourselves because of lack of understanding, this only adds to our suffering. I think if you educate yourself with knowledge about the illness, it will empower and equip you to better understand someone with chronic illness. You will then know the right words to say to your loved one in their suffering. Your understanding could mean more than anything you could physically do for them. I've added a few links to the bottom of this page that will take you to some great information and education on Me/cfs. I also added links to two of my other blog entries where I share 5 tips on how to stay in a remission phase of Me/cfs https://www.unspoken-words-of-the-heart.com/post/as-a-nurse-and-as-someone-who-suffers-from-me-cfs-i-want-to-share-5-ways-to-manage-this-illness. I also share parts of my life before and after the disease and the effects it has had on my life and marriage https://www.unspoken-words-of-the-heart.com/post/a-letter-to-my-husband. Prayers going up for all people and families who suffer with this illness.
The above three paragraphs are the only parts of this blog entry that was submitted to mentalolympian.com.
I'm desperately praying that research continues and that funding for research comes. Out of all the things that I've heard people say about having this horrible disease, the most heartbreaking is that they are deathly ill inside of their body and no one will listen. And once they grow past caring what people think, they find that they are unable to function in their life. Even those of us who have remissions can worsen at any point to a bedridden state or severely ill patients can sometimes get better over time. The illness is unpredictable.
Me/cfs patients are in a battle for their lives every single time they crash or have a relapse. Imagine being afraid to clean your house because you knew if you did it, in three days, you would be confined to your bed deathly ill, short of breath, you maybe couldn't speak or stand light and were unable to get up. You don't know if you will be there for a couple of weeks or a few months or indefinitely. The length of the crashes are never the same. For Me/cfs patients sometimes just washing your hair can make you this sick. Next month you may be able to make it to church four weeks in a row before a debilitating crash comes and you are unable to make it anywhere for two more months. Physical and mental exertion causes extreme sickness in Me/cfs patients. After a while these patients are afraid to move for fear of getting sicker. They, by far, are not lazy people. Actually, they have found that most people who get me/cfs are a type A personality, very active and hardworking individuals. Which is another reason that they struggle so hard with acceptance after getting the disease. To go from being an active part of your work, community and church to not being able to do the basic things in life is truly devastating. We count the cost for everything we do. Things that were once really easy like walking through the grocery store can, at times, be a great task for us.
We don't share our battle with me/cfs to obtain sympathy. The guilt of not being able to be there and do for others can inflict more suffering than the symptoms themselves. Therefore, we feel the need to explain why we are missing from other's lives. We need our loved ones to understand why the house isn't clean, why we can't make it to church and why we can't go out. I have been fortunate enough to find myself surrounded with great support and understanding from my family, friends and church. I have also found a great group of medical practitioners at Vanderbilt Heart and Vascular and my Rheumatologist in Nashville TN. I have a great PCP (Nurse Practitioner) who is local, who is absolutely wonderful. They are all very understanding, compassionate and knowledgeable. However, I know many of you don't have that understanding and support, so this post was created with you in mind. It has taken me years to find great medical help. I know the guilt of having to ask others for help during a relapse. I know the frustration of showing up to a doctor’s appointment looking young and healthy on the outside but your body feels as if it is dying on the inside, only to find that the medical community doesn’t believe the true devastation that has taken place in your life. I know the feeling of needing to know why I could once work a sixteen hour shift without stopping and now, at times, I can’t make it to my own kitchen. I can empathize with the feeling of trying to explain why we look good on the outside but our bodies won't go. I hope this article helps you guys in some way. Let's continue to encourage one another and keep putting education out there about ME/CFS, POTS and Fibromyalgia. Hang in there and don't give up. Below is a link to a free (36 page) downloadable and printable International Consensus Primer for Medical Practitioners. This covers, in great detail, exactly how Me/cfs affects our bodies and all body systems. Because it affects all body systems, we may find ourselves having to see multiple specialists. We may find ourselves having to see a cardiologist for POTS and dysautanomia. We may have to see a rheumatologist for fatigue and pain, a neurologist for neurological symptoms, an allergy/immunologist for allergies, MCAD and an overactive immune system. We may also need to see a pulmonologist for exercise intolerance, internal preload failure to our hearts and breathing issues. Lastly, a urologist for chronic UTI’s or Interstitial Cystitis. This is just to name a few. The print off guide below is an excellent tool to print off and give to your doctors. This way, they can have something to refer back to and can see how everything correlates. I’ve also added some great links below to the CDC (Centers for Disease Control) and NIH (National Institutes of Health). These educational sites inform about the true nature of Me/cfs “Chronic Fatigue Syndrome”.
*Disclaimer: This is in no way medical advice and shouldn’t be treated as such. This post contains my personal opinions and experiences and is for information purposes only.
Information and Education on Me/cfs:
*This blog was created to be an online community for women to find encouragement. Here you will find Bible Study on life, faith through health challenges, marriage, prayer and mental health. You will also find a splash of information on chronic illness, me/cfs, pots, fibromyalgia, EDS, supplements, functional and naturopathic medicine, as well as diet and healthy eating tips.
*If you would like to receive emails and be notified when a new blog entry is posted, please sign up below.
*Please feel free to leave comments or questions, so we can uplift and learn from one another. Leaving a comment will not sign you up for email notifications.
*Disclaimer: Any health information that is given on this blog is for informational purposes only and should not be used as medical advice. You should always consult with your Doctor or Mental Health Provider before making any changes to your diet, medications, supplements or exercise routine.