Posts Tagged ‘How do you treat Dysautonomia?’

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

What is Dysautonomia?

I’m going to try my best to explain this disorder in a very easy-to-understand way.

For a more medical definition, Wikipedia does a good job at http://www.en.wikipedia.org/wiki/Dysautonomia

Dysautonomia is the term used to explain a range of disorders that are characterized by the malfunction of your Autonomic Nervous System. (ANS) There are many types – ranging from mild to severe. And every person is different. And every cause is different. And every prognosis is different. Some of the more common ones are Neurocardiogenic Syncope (NCS), Postural Orthostatic Tachycardia Syndrome (POTS), Chronic Fatigue Syndrome (CFS), Fibromyalgia, and Orthostatic Intolerance (OI). I’ll be focusing primarily on these types of Dysautonomia that are chronic, but not life-threatening and have the potential to improve over time. (Some other types of Dysautonomia cause a slow degenerating of the nervous system and eventually lead to death; but they are more rare and seen at birth, after major injury or trauma, and in the elderly.)

Okay, what is your Autonomic Nervous System? (ANS)

Well, your nervous system has many “branches” and your ANS is the branch that controls everything you do subconsciously – your heart rate, your blood pressure, your breathing patterns, sleep patterns, sensory perception, visual reflexes, body temperature, etc. There are two more branches that come from the ANS – the Sympathetic Nervous System (SNS) and the Parasympathetic Nervous System (PSNS). Your SNS is the “flight or fight” response – basically, it speeds things up if your body needs to fight or to flee. (Increases heart rate, breathing, stops digestion, dilates the pupils, etc.)

Example: If you were to walk into your house and find a robber with a gun pointed at your face – your brain would naturally send a signal that “starts up” your SNS – because it’s time to “fight or flee”. So, imagine what sort of things you would feel in that situation…….

For Dysautonomia patients, that “signal” can be set off inappropriately or for no apparent reason at all. We can feel these symptoms of terror and anxiety just simply sitting down and doing nothing. Seriously. And after they subside, they cause us to feel exhausted and fatigued because your body just worked extra hard for nothing.

The PSNS is more of the “slow” branch of the ANS. It controls “rest and digest” – it speeds up digestion, and slows down breathing and heart rate. (Things that happen while you’re resting.) This system is dominated most of the time in a normal person. But, with Dysautonomia, the SNS and PSNS are “going off” at different times, and not usually the RIGHT times – which is why symptoms such as palpitations, trouble breathing, constipation or insomnia makes sense, right?

What are the symptoms of Dysautonomia?

Symptoms of Dysautonomia (and related conditions) vary widely from patient to patient, can be mild to severe, and can change without notice. You might experience one set of symptoms one day, and another the next. Or different symptoms within the same day, hour, or even minutes. It’s very unpredictable. Usually they include:

  • Rapid heart rate (tachycardia)
  • Too slow of a heart rate (brachycardia)
  • All sorts of chest pain, all over the chest area
  • Dangerously low blood pressure (especially upon being upright or standing for too long)
  • Major swings in blood pressure
  • Dizziness, light-headedness, vertigo
  • Feeling faint, and sometimes actually fainting (syncopy)
  • Hot flashes, cold sweats, chills, and irregularities in body temperature
  • Anxiety attacks and panic attacks (panic attacks)
  • Trouble breathing, shortness of breath, hyperventilation
  • Headaches, migraines, neck pain and tightness
  • Other odd body aches and pains
  • Nerve pain, tingling sensations, burning sensations, numbness
  • Extreme fatigue and weakness
  • Trembling and shaking – inside and out
  • Inability to tolerate exercise (or sometimes even regular activity)
  • Hypersensitivity to adrenaline
  • Insomnia, sleep disturbances, or sleeping too much
  • Constipation, diarrhea, acid-reflux, and other digestive problems
  • Visual disturbances, changes in vision, blurry vision, fuzzy vision
  • “Brain fog”, spacing-out, losing words, inability to focus or concentrate
  • Frequent urination, urgency to urinate (polyuria)
  • Frequent thirst (polydipsia)
  • Super-sensitivity to lights, sounds, smells, etc.
  • And just other weird stuff…

There are a whole variety of symptoms that patients with Dysautonomia can experience and are not all listed here. Since Dysautonomia is a full-body condition, it can obviously exhibit itself in many different ways.

So what’s the big deal with standing up?

When people stand up, gravity naturally pulls blood down into the feet and legs. In a normal person, the brain senses this change and sends a “neuro-signal” to the veins to constrict (tighten-up) in order to send blood back up to the heart and lungs so that blood pressure, heart rate, and oxygen levels can stabilize, and the person can function. For those of us with certain types of Dysautonomia, this whole process doesn’t work right. (Or at all.) When we stand up, the blood pools in our legs and feet but there is no signal telling our veins to constrict. In order to compensate, the heart beats faster and faster (in NCS it’s sometimes slower) to get blood pumping back up to the brain… BUT this actually makes things worse! Because when the heart rate is high, the brain senses this and in order to combat blood pressure going too high (naturally, in a normal person) it sends an opposite signal to the blood vessels – telling them to dilate (or loosen-up), causing blood pressure to get even lower and not enough blood gets to the brain or to the heart. (which is much needed!!!) As you can see, this can be quite frustrating. And this is why some people actually faint, while others of us just pretty much feel like crap.

What causes Dysautonomia?

Unfortunately causes of Dysautonomia are not very well understood, and they can be different for each person. It’s also really hard to determine the cause for each individual as it could be related to numerous things and there aren’t a lot of tests to determine it. Some generally assumed causes are viral illnesses, auto-immune disorders, brain, head, or chest injury and/or trauma, degenerative disorders of the nervous system, genetic factors, growth spurts in adolescents, exposure to toxins and chemicals, some people are just born with it, and others may never know.

How do you treat Dysautonomia?

Well, since there is no single cause, and it is difficult to diagnosis, it is understandable that treating Dysautonomia varies from person to person and can be hard to do. Like I mentioned before, the condition is chronic (long-lasting) and there is no cure. Therefore, treatment right now is aimed at controlling the symptoms. Most people need to increase their fluids and salt intake to help raise their blood pressure. Others can wear something called compression stockings that help blood that is pooling in the legs to be brought back up to the heart and brain. (Not very fashionable or comfortable though.) Usually, a slow increase in activity and moderate exercise is encouraged to build up endurance and can really improve symptoms over time. (This takes a lot of patience – make sure to take breaks in between and listen to your body!) An overall healthy lifestyle is a necessity for controlling symptoms of Dysautonomia.

There are different supplements that can help, and taking a daily vitamin is encouraged. There are also many medications that can be taken (only from the advice of your doctor) – some raise blood pressure and others control heart rate. Some can help a person retain water and salt, and others can help the brain produce more of the chemicals it needs to sort of “balance out” the nervous system. Anti-anxiety medications are sometimes used, especially in the beginning, to help control the symptoms of anxiety and regulate sleep patterns. Most of all, treating Dysautonomia requires major lifestyle changes and a lot of patience since most treatment methods are found through a trial-and-error process. Some can help one person, while make another person worse. And like I mentioned before, those of us with Dysautonomia are usually very sensitive to medications so that makes everything more difficult. (ugh!) Talk with your doctor, or a specialist, to find out what may be right with you. And just because one thing doesn’t work, or things don’t get better right away – DON’T give up trying! You’ll figure it out over time.

*On a better note, here are two Positive Points to remind yourself:

  1. Most cases of Dysautonomia tend to clear up and improve significantly within 2 to 5 years.
  2. Since these disorders have finally begun to be recognized by the medical community as real, physiological disorders (and opposed t0 psychological), there is a TON of amount of research being conducted to better understand Dysautonomia and get more effective treatment methods. So, the outlook for improvement is hopeful.

I hope this helps. Remember: take things at your own pace. Don’t compare your life to others – set your own expectations. You don’t need to meet theirs. Just know that things WILL get better. Stay hopeful and keep fighting!

There’s a lot of good information out there on the web about the disorder that you can read more about if you check out my Links.

Also, for a good YouTube video all about POTS, check out http://www.youtube.com/watch?v=o5D9T04OVZg

DISCLAIMER: I am NOT a doctor. I am just a patient, with a lot of experience and studying of the health sciences. Remember, all patients are different. Just because one person seems to function okay, doesn’t mean another one won’t be bed-ridden. And just because someone gets better soon, doesn’t mean it won’t take a long time for someone else. Keeping yourself educated and talking to your doctor is the best way to understand your own Dysautonomia and get the best treatment.