Clearing Up the Confusion

What is an Invisible Disease?

Chronic Fatigue Syndrome, also called M.E. (Myalgic Encephalomyelitis), along with Fibromyalgia, are often not referred to as actual ‘diseases.” They are often listed as syndromes. But to the people who live with CFS/ME, Fibro and Lyme, they experience the impact of serious disease everyday. The reason that they are ‘invisible’ is because the suffering that is caused goes unseen; the suffering is completely internal, and varies dramatically from day to day. Just because a person is able to get dressed and leave the house one day, does not mean that everyday is that way. People who do not live with those suffering with Invisible Diseases only ‘see’ the best days. Also, there are no consistent medical tests and treatment for these illnesses. Therefore, they are referred to as “invisible”. Though, in actuality, these diseases are very real and serious. People who live with them need loving validation and support.

How many people have Invisible Diseases?

It is difficult to give an exact number of people who have these Invisible Diseases because there are so many doctors giving misdiagnoses, along with the fact that we do not know enough about them. However, it is estimated that over 20 million people worldwide suffer from these Invisible Diseases, and the numbers are growing, very quickly!

Why focus on CFS, Fibro and Lyme Diseases and clump them together?

The symptoms of Chronic Fatigue Syndrome, Fibromyalgia and Lyme disease are staggeringly similar. All of these illnesses are vastly misunderstood and underfunded for research and treatment. The majority of people who suffer from them are forced to alter their lives dramatically and end up hurting physically, socially and financially. Most insurance companies do not fully cover treatment either, which makes this even more devastating in people’s lives.

Awareness must be raised and the confusing facts must be discussed in order to start helping the people who have Invisible Diseases. This is where we can start! There are other diseases that are referred to as invisible, but due to the similar major controversies and misunderstandings of CFS/ME, Fibro and Lyme, we are focusing mainly on these three. Often, these diseases are a form of Dysautonomia.

What is Chronic Fatigue Syndrome / M.E. (CFS or CFIDS)?

Several names have been debated over for Chronic Fatigue Syndrome, mainly because the first name, Chronic Fatigue Syndrome, is the most understated. Chronic fatigue is only one symptom of this life-crippling illness. Other names include C-FIDS (Chronic Fatigue Immune Dysfunction Syndrome), M.E. (Myalgic Encephalomyelitis) and simply CFS. Because the general public is most aware of the phrase Chronic fatigue Syndrome we will use that name, or the acronym CFS, due to the fact that we need a common point of interest in order to most efficiently educate people about it.

CFS is a serious neuroimmune disease that has been found to be as disabling as multiple sclerosis, lupus, rheumatoid arthritis and congestive heart failure. It is similar to end-stage AIDS, where it breaks down every major system of the body. The big difference is that it often brings you close to the feeling of death, though it does not actually kill you. It is diagnosed after a process of exclusion, making sure that there is not a more common disease that is causing the person’s ailments. CFS is generally defined by extreme fatigue, not relieved by any amount of rest or sleep, lasting at least six months and is accompanied by a number of the following symptoms: muscle, bone and joint pain; reactive hypoglycemia; irritable bowel syndrome; loss of brain functioning; insomnia; memory loss; brain fog; chemical intolerance; rapid sensory overload; sore throat; tender lymph nodes; migraine headaches; convolutions; uncontrolled weight fluctuation, chest pain, palpitations and more. Depression and anxiety are of course a common occurrence for people once they suffer from CFS as well, but are NOT causes of the disease itself. CFS is NOT a psychological disorder. Symptom severity varies from person to person and may fluctuate over time. There are several theories pertaining to what causes CFS. Some are: a virus, such as mononucleosis, long-term infections, Lyme disease mutation, mitochondria damage or dysfunction, atmospheric reactions, adrenal fatigue, Dysautonomia, among others. That is why we need to have further research, on all of these Invisible Diseases.

What is Fibromyalgia (Fibro, FMS or FM)?

Fibromyalgia is very similar to CFS because they both have extreme constant pain and fatigue. Though, the easiest way to explain their differences would be that Fibromyalgia generally tends to be more pain, and CFS tends to be more fatigue.

Fibromyalgia means muscle and connective tissue pain. It is described as chronic widespread pain and a heightened pain response to touch (tactile allodynia). Some other symptoms are a range of debilitations like difficulty swallowing, irritable bowel syndrome, difficulty breathing, numbness and tingling, brain fog, sleep disturbances, fatigue, and overall abnormal motor activity. There is also a specific 18-point guide that doctors often use to diagnose Fibro. To get a formal diagnosis from the guide, your doctor must find at least 11 of the 18 tender points.

What Is Lyme Disease?

Lyme Disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans by the bite of infected blacklegged ticks. Lyme Disease is famous for the skin rash called erythema migrans. The rash is at the site of the tick bite and often looks like a bull’s eyes. Though many people who contract Lyme do not have any rash at all. If left untreated, infection can spread to the joints, heart, brain and the nervous system. People will have a mixed combination of symptoms such as severe pain and fatigue, vertigo, reactive Hypoglycemia, chemical intolerance, mood swings, convulsions, memory loss and brain fog among others. Most cases of Lyme Disease can be treated with long-term and intensive antibiotics. Early diagnoses typically means much shorter course of treatment and lower severity of symptoms.

Another reason why invisible diseases are ‘invisible’: Testing for Lyme is very controversial because of false negatives and false positives; meaning, the blood tests are often unreliable, though they can help lead you in the right direction toward treatment. This is why many people with Lyme may actually have CFS or Fibro; in the same light, many people with CFS and Fibro can very well be suffering from Lyme Disease and not even know it. Extensive testing and consulting with trained specialists are crucial for figuring out proper diagnoses and treatment. Just as a note for your internet searching, a common phrase is “Lyme Literate”, so look for a Lyme Literate doctor, or, LLMD (Lyme Literate Medical Doctor.)

Could I actually have Dysautonomia, such as P.O.T.S.?

This is a very important thing to explore because many people with Invisible Diseases develop a Dysautonomia. In fact, it can be the other way around, where many people actually develop their Invisible Disease BECAUSE of a Dysautonomia.

Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is what regulates the organs and other automatic functions in the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, pupil dilation, digestion and other vital body functions. When the autonomic nervous system is upset, a person can feel incredibly ill and “brain-foggy”. Dysautonomia often causes numerous, seemingly unrelated symptoms.

One very commonly misdiagnosed form of Dysautonomia is P.O.T.S. (Postural Orthostatic Tachycardia Syndrome.) Also just called Postural Tachycardia Syndrome, (there are so many names, we know.) POTS, also referred to as an Invisible Disease, is characterized by the body’s inability to easily adjust and counteract gravity when standing up or moving quickly. POTS creates an excessive heart rate upon standing (and sometimes a dangerous drop in blood pressure) and can cause major heart palpitations, dizziness, weakness, nausea and many other symptoms. Due to the multitude of symptoms that this syndrome presents, POTS can be difficult to diagnose and understand. In some people, it can also mean a misdiagnoses of another Invisible Disease!

What are some things that I can do to ease my suffering?

Because symptoms vary among these Invisible Diseases, and each person reacts differently, it is impossible to have one straight answer for everyone. However, there are some general adjustments that many people have found to help them. Of course, check with your doctor before making any changes to your daily habits and health regulations.

1. Many people have found that a low carbohydrate (not NO carb) diet has helped tremendously. The regulation of blood sugar is important for the body in general. An easy rule of thumb is to stay away from simple and refined flours and sugars. In other words, avoid most of the white powdery substances in food. More complex carbs like whole grain and whole wheat tend to help people digest slower and gentler than processed carbs.
2. Probiotics can help to balance digestion and infection regulation. You can find probiotics (such as Acidophilus) at health food stores and online.
3. Temperature regulation seems to be very important for most people with these Invisible Diseases. The body is so very sensitive to changes when a person has an Invisible Disease. So, try to avoid extreme hot or extreme cold.
4. Drink tons of water! Two to four liters per day is generally recommended due to the common problem of low blood volume and blood pressure issues that so often occur among people with Invisible Diseases. This can make a much bigger impact than you realize. It can also help with dizziness and nausea in many cases, due to the constant dehydration in the body.
5. Listen to beautiful music and uplifting entertainment. Believe it or not, music has shown to effect our bodies and overall health. Think about it, when you hear loud screaming banging music, it causes a different internal reaction than if you listened to calm soothing classical sounds. The mood can be lifted with the right music and entertainment. Avoid harsh chaotic sounds and scary or depressing movies. Because Invisible Diseases cause brain fog, the effects of a simple scary movie can be quite impacting and lasting. This causes unnecessary stress on the body.
6. Laugh! Even if you have to force a little laugh out here and there just to get it going, just find some way to have a little laughter. Even watching a funny movie can help. Anything to brighten the mood is very helpful when you have such a sensitive body. Laughter causes physical movement as well, which ignites the lymphatic system. This benefits the immune system, so laughter really IS healing, on many levels.
7. Most importantly, do anything that you can to surround yourself with a supportive and loving group of people, including your doctors and nurses. This can be very difficult for some people, but please try any way that you can to find doctors who understand your Invisible Disease, or who are at least willing to learn about it. Of course, loving relationships in your daily life are essential as well. Reach out to others like you online, create friendships that way and share information. Always remember that there is hope! Keep hoping and knowing that people are working hard to help you, even if you cannot see it directly. Know that you are not alone and that people really care about you! Trust in God, pray, and keep fighting!

How can I help someone with one of these Invisible Diseases?

Raise awareness! These illnesses are incredibly underfunded for research and treatment. However, in order for us to get proper funding, we need people to know about the crisis that these Invisible Diseases cause. So, call your doctors, write your congress, send out mass emails, contact the media. Be an SOS and call for help! And don’t be shy about it. Do your research and help to educate everyone you know about Chronic Fatigue Syndrome (M.E.), Fibromyalgia and Lyme Disease; as well as Dysautonomia, like POTS.

Secondly, believe them! Validate their suffering and be an advocate for them. Help them to research proper treatment options and start talking to your communities about how debilitating it is to have an invisible disease.

Many invisible disease sufferers experience cruelty from medical professionals and loved ones who do not believe that a person can be suffering with so many ailments at once; with limited blood tests to ‘prove’ anything. The truth however, is that people who suffer with CFS/ME, Fibro and Lyme are heroically strong and brave. Before Multiple Sclerosis (MS) was discovered, it was called the ‘hysteria disease’ because nobody believed that the disease was actually happening inside these people’s bodies, being that there were no specific blood tests to determine it. We now know that M.S. is a very serious disease. CFS and Fibromyalgia are very similar, and just do not have a common blood test yet. And Lyme disease does not have reliable results for the testing that is actually offered. Half of the suffering for so many people with any invisible disease is from the lack of support and understanding from those around them.

Just because you cannot see another person’s suffering does not mean that it does not exist. It is incorrect and even cruel to say that any of these Invisible Diseases are psychosomatic or hypochondria manifestations, or “all in the head”. These are serious physical ailments that cause a reaction of depression and anxiety. There is very little treatment that works for everyone. All people who live with invisible diseases are to be respected and even admired for their pioneering endurance and strength.

One last thing that you can do to help someone who suffers from an invisible disease is to go out of your way to brighten their day. Make them laugh, write them a letter filled with your love for them, surprise them with a loving gift. Just make sure that they know how important they are in your life. …So, validate their suffering first! Then, help them to find some happiness through all of their suffering. 🙂

TOGETHER, WE CAN MAKE A DIFFERENCE!

IN HONOR OF DAY OF VISIBILITY, June 6th, 2010.

FAQ’s taken from http://invisiblediseases.com