Anxiety and Depression in Chronic Illness

What is anxiety anyway?

 Anxiety is our bodies way of reacting to stress. You have both physical and psychological reactions to stress.  People who suffer from anxiety disorders experience excessive fear when there is no real danger and then they begin to avoid the situation that causes it. Anxiety causes disruption in a person's everyday life. It can cause an increased risk for cardiovascular morbidity and mortality in the long run. 

But what happens when there are real dangers causing your anxiety? This is what people with chronic illness face every day.

Some examples of these fears are:

•  Fear of physical pain. Fear that it's going to continue to worsen or that it will never stop.  
• Is my condition permanent? Am I going to die? What is this going to mean for the rest of my life?
• Being afraid of the treatments. Needles, surgeries, tests, they can all be painful and frightening. Fear of medication side effects is pretty prevalent too.
• Fear of not being diagnosed. Some conditions are hard to get an accurate diagnosis for.  

Anxiety is believed to start in the amygdala. The amygdala is the area of the brain that controls emotional responses.  But it has not been determined if the amygdala is hyper-responsive before the stressor such as symptoms of social phobia, specific phobia, or PTSD appear or if the stressor causes the hyper-responsiveness. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3055419/ Neurotransmitters carry the response to the sympathetic nervous system. Then the heart rate and respiration rate increases, and your muscles tense up. And blood flow is diverted from the other organs to the brain. Now due to your anxiety, your body is on high alert. The fight or flight response is in full gear. You may experience nausea, diarrhea, the urge to urinate, light-headedness, pain, headaches, and other physical responses. 



According to a Harvard Health article anxiety is associated with many chronic illnesses like heart disease, Chronic Obstructive Pulmonary Disease, and gastrointestinal conditions. If it isn't treated it makes these chronic conditions harder to treat and the patients get worse and their life expectancy is shorter. 

It is estimated that about 30% of people suffering from anxiety disorders go untreated. If you suffer from a chronic illness and think you might have it, it is important to discuss it with your primary doctor who can help you find out what is causing your symptoms whether it be physical or psychological. Psychological symptoms are no less real or important than physical ones are. That's what your doctor is there for. 


There are several specific types of anxiety disorders. 

• Generalized Anxiety Disorder---Patients experience an exaggerated sense of anxiety about health, safety, money, and other aspects of daily life lasting for six months or more. They may also experience headaches, muscle pain, fatigue,  nausea, shortness of breath, and insomnia
• Phobias---Patients experience an irrational fear of particular things or situations, such as spiders, being in crowds, or being in enclosed spaces.
• Social Anxiety Disorder--- Patients experience overwhelming self-consciousness in social situations and a feeling of being watched and judged by others and fear of embarrassment.
• Post Traumatic Stress Disorder(PTSD)---Patients relive things from their past that caused an intense physical or emotional threat or an injury such as: childhood abuse, military combat, or an earthquake. They have vivid dreams, flashbacks, or tormented memories. They also experience problems with sleeping or concentrating. They may display angry outbursts, emotional withdrawal, and have a heightened startle response.
• Obsessive Compulsive Disorder--- OCD manifests in obsessive thoughts, that then causes the person to compulsively act in a certain way. An example is having a fear of contamination with germs and then feeling compelled to repeatedly wash your hands in an attempt to lessen the anxiety. 
• Panic Disorder---Patients experience episodes of feelings of terror or impending doom, accompanied by rapid heartbeat, sweating, dizziness, or weakness with no apparent provocation. 

These problems can cause complications in chronic illness. For instance, studies have shown that patients that have COPD have high rates of anxiety and panic attacks. This, in turn, causes higher incidents of hospitalization and severe respiratory distress. When you can't catch your breath, anxiety, and panic are pretty understandable. And it would obviously adversely affect your quality of life. Managing Panic Attacks When You Have COPD 

The development of heart disease and resultant coronary events have been linked to anxiety disorders. Women with high levels of anxiety were 59% more likely to have a heart attack and 31% more likely to die from it than women with low anxiety in the Nurses Health Study. 

A study done at Harvard Medical School and one done at the Lown Cardiovascular Research Institute showed that people with heart disease who also had an anxiety disorder were 2 times more likely to have a heart attack than other people. Anxiety and heart disease: A complex connection





There are treatments for anxiety disorders and they can help treat chronic illnesses and even help prevent heart disease and treat existing heart disease. But treatments need to be tailored to the individual patient. https://www.anxiety.org/treatments

• Cognitive-behavioral therapy. This works by helping the patient identify and avoid thoughts that cause anxiety, and then helps them learn how to react differently to anxiety-provoking situations. It has to be tailored to the patients particular type of anxiety.  Patients may learn relaxation techniques to lessen their anxiety. 
• 
  
• Psychodynamic psychotherapy. When anxiety is caused by an emotional trauma it the patient can sometimes benefit from therapy. Research at Colombia University showed that patients suffering from a panic disorder who were treated with psychotherapy had fewer symptoms and were able to function socially better than patients who were treated with relaxation therapy. 

There is a tendency for patients and doctors alike to rely mainly on medications to treat anxiety. But on their own, medications don't work as well as when they are combined with psychotherapy.  Many of them come with side effects. But they are useful to get the patients symptoms under control so that therapy can be more effective. 

These medications consist of anti-anxiety drugs like benzodiazepines(Klonipin, Xanax) There is a newer drug called Buspar that is supposed to have fewer side effects. Whereas the others work quickly, Buspar takes about two weeks to kick in. But it can be taken for longer periods of time than the others.

Antidepressants like Zoloft which is a selective serotonin reuptake inhibitor (SSRI) are used to treat panic disorder and generalized anxiety disorder (GAD). They also treat depression. They are considered to have a lower risk of drug dependence or abuse. 

Beta blockers are used to treat anxiety by slowing the heart rate and reducing blood pressure. 

DEPRESSION

Depression can occur independent of or in relation to anxiety and may have overlapping symptoms. It is common for people with chronic illnesses to suffer from depression. It makes their conditions harder to treat and can make it worse. If patients are treated for depression it can lessen their stress and result in an improvement of their symptoms, resulting in increased quality of life. 

The World Health Organization (WHO) says that depression is the leading cause of disability in the world and the 4th leading cause of the global burden of disease. They estimate that by 2020, depression will be the 2nd public health concern next to cardiovascular disease. https://www.who.int/news-room/fact-sheets/detail/depression




The criteria for depression in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV), major depressive disorder (MDD) the most severe form of depression,  is an episode that lasts at least 2 weeks with the patient having at least 5 out of 9 depressive symptoms. One of the symptoms has to be depressed mood or loss of interest or pleasure in anything (anhedonia). Symptoms have to cause significant distress and social, occupational impairment or impairment in other areas of their lives resulting in noticeable disability caused by their illness.

Symptoms of depression are:

• Feeling sad, irritable, or anxious
• Feeling empty, hopeless, guilty, or worthless
• Loss of pleasure in usually-enjoyed hobbies or activities, including sex
• Fatigue and decreased energy, feeling listless
• Trouble concentrating, remembering details, and making decisions
• Not being able to sleep, or sleeping too much. Waking too early
• Eating too much or not wanting to eat at all, possibly with unplanned weight gain or loss
• Thoughts of death, suicide or suicide attempts
• Aches or pains, headaches, cramps, or digestive problems without a clear physical cause and/or that do not ease even with treatment

People with chronic illness have some of the same risk factors for depression as people in the general population. Things like a personal or family history of depression or loss of family members to suicide are risk factors for depression.

There are some conditions that are themselves risk factors for depression due to causing changes within the brain, such as, Parkinson’s Disease and strokes. 



Depression is common among people who have chronic illnesses such as the following:

• Cancer
• Coronary heart disease
• Diabetes
• Epilepsy(Mood, Anxiety and Depression | Advice From Epilepsy Society‎)
• Multiple sclerosis
• Stroke
• Alzheimer’s disease
• HIV/AIDS
• Parkinson’s disease(Parkinson's disease and anxiety: comorbidity with depression)
• Systemic lupus erythematosus(Lupus and depression: Know the signs and how to get help )
• Sjogren's Syndrome (Anxiety and depression in primary Sjögren's syndrome)
• Rheumatoid arthritis(Rheumatoid Arthritis Linked To Serious Mood Disorders)
• Fibromyalgia(Fibromyalgia and Depression: Effects, Treatments, Signs, and More)
• Crohn's Disease(Signs and Symptoms of Depression | Crohn's & Colitis Foundation)

There are many others. 

The rate of anxiety and depression depends on the type and severity of the chronic illness is. But the rates are higher across the board among people with chronic illness in comparison to the general population. It is particularly prevalent in stroke, cardiovascular and diabetic patients. 

This is an interesting article about people with the autoimmune condition Sjogren's Syndrome and how they differ from the general population. Sjögren’s Patients Exhibit Different Personality Traits than Healthy Individuals, Study Suggests

Studies suggest that people who have depression and another medical illness experience more severe symptoms of both their depression and their physical illnesses. They can have difficulty adapting to both and higher medical expenses than patients who do not suffer from depression.

People who have been diagnosed with a chronic illness often feel sadness because of the major changes in their lives due to the disease like fatigue and other physical limitations that make their normal activities harder or impossible. They may also feel frustration. Patients often feel anxiety because of uncertainty about what the future holds and the prognosis of their disease because it may be incurable or unpredictable and precarious. And the fear of death can cause great depression and anxiety. They may experience sleep disturbances as a result. If they are able to regain some of their normal functions and participate in their regular daily life their symptoms were reduced. 

Chronic illness causes people to be isolated socially due to less contact with friends and family because they can't get out as much. Their friends may also avoid them because they don't know how to deal with their friend's conditions and they may feel like they no longer have anything to relate to. 

If you have symptoms like shortness of breath, panic attacks, sensitivity to noise, brain fog, etc. it may cause anxiety and other symptoms that may cause you to remain home further exacerbating your social isolation. 

People with chronic illness often express feelings of guilt which makes their anxiety and depression worse. They feel like they are the blame for getting their conditions. Perhaps they didn't take as good of care of themselves as they feel they should have. They also feel shame because they find it difficult to be grateful for being alive. 

Another aspect of anxiety and depression in chronic illness is that doctors tend to feel like it is just a normal part of the disease and downplay its importance or in contrast, they might chalk of many of the patient's physical symptoms to their depression causing the patient to rightfully feel dismissed. But to be fair to physicians,  the physical symptoms of chronic diseases overlap with depression and anxiety and this makes diagnosis difficult. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3817854/


The condition known as POTS, Postural Orthostatic Tachycardia is complicated when it comes to anxiety and depression. Postural Orthostatic Tachycardia Syndrome (POTS) is a condition in which heart rate increases abnormally when the individual assumes an upright position. In addition to the marked tachycardia, presyncope, and syncope. Considering the marked elevation in heart rate on standing, increased anxiety about this and the feeling of faintness or actual syncope is not surprising.  But many doctors are prone to completely dismissing the condition as just anxiety. This Mysterious Blood-Flow Disorder Is Often Misdiagnosed As Depression

One study in the United Kingdom found that nearly 50 percent of POTS patients had previously been told they had a psychiatric disorder that was responsible for their symptoms. 

Cognitive function, health-related quality of life, and symptoms of depression and anxiety sensitivity are impaired in patients with the postural orthostatic tachycardia syndrome (POTS)


In a Vanderbilt University study, Patients with POTS had a markedly diminished quality of life in both physical health and mental/social health domains compared to the healthy volunteers.  The scores were comparable to previously published scores for patients with kidney failure requiring hemodialysis.  The Vanderbilt data were similar to a prior publication from the Mayo Clinic {PMID: 12059122} that also found diminished quality of life in patients with POTS. https://ww2.mc.vanderbilt.edu/adc/43572

What does anxiety have to do with PoTS? 

Research has shown that PoTS is not the same as anxiety.  However, PoTS is sometimes confused with anxiety because:

• Anxiety is so common that, just by chance, many people with PoTS will also have anxiety.
• Some of the symptoms of anxiety are similar to the symptoms of PoTS. Palpitations, nausea, light-headedness, gut symptoms, fatigue, and headaches are symptoms that can occur both in anxiety and as a result of PoTS.
• Even when we know that PoTS symptoms are not harmful, symptoms can still feel very frightening. Adding scary thoughts to the mix can increase symptoms even more.
• Worrying excessively about a thing that could happen in the future can lead to low moods. It can help to recognize that these problems have not yet happened and may never happen. Deal with problems as they come up, and use your time and energy on more positive thoughts. 
• Anxiety and stress cause our bodies to release a chemical in the blood stream called norepinephrine. People with PoTS seem to be very sensitive to this chemical which can cause symptoms like anxiety.  In addition, the parasympathetic nervous system which calms us, may also not be functioning normally in PoTS.

I have shown that people with chronic illnesses are more likely to have anxiety and depression. But people who are depressed are also more likely to have chronic illnesses like cardiovascular disease, diabetes, stroke, and Alzheimer’s disease. 

Scientists have found  that people who suffer from depression show changes in several different systems in the body:

• Signs of increased inflammation
• Changes in the control of heart rate and blood circulation
• Abnormalities in stress hormones
• Metabolic changes typical of those seen in people at risk for diabetes

Even though you and your doctors may be tempted to dismiss depression and anxiety as a normal part of your illness, DON'T.  Treatment for depression is available and can help even if you have another chronic illness or condition. If you think you or a loved one have depression, it is vitally important to tell your doctor so they can help you find treatment options.

It may take some time to recover from depression but being treated can help improve your quality of life. 

You Can Find More Information With The Following:

https://adaa.org/understanding-anxiety

https://www.verywellmind.com/social-anxiety-disorder-causes-3024749 

https://www.healthline.com/health/anxiety/effects-on-body#1 

https://www.anxietycentre.com/anxiety-symptoms.shtml 

National Institute of Mental Health http://www.nimh.nih.gov/health/topics/depression/index.shtml
En Español http://www.nimh.nih.gov/health/publications/espanol/depresion/index.shtml

For more information on conditions that affect mental health, resources, and research, go to MentalHealth.gov at http://www.mentalhealth.gov, or the NIMH website at http://www.nimh.nih.gov. In addition, the National Library of Medicine’s MedlinePlus service has information on a wide variety of health topics, including conditions that affect mental health.

National Institute of Mental Health
Office of Science Policy, Planning, and Communications
Science Writing, Press, and Dissemination Branch
6001 Executive Boulevard
Room 6200, MSC 9663
Bethesda, MD 20892-9663
Phone: 301-443-4513 or 1-866-615-NIMH (6464) toll-free
TTY: 301-443-8431 or 1-866-415-8051 toll-free
Fax: 301-443-4279
Email: nimhinfo@nih.gov
Website: http://www.nimh.nih.gov

Joint Hypermobility Syndrome and EDS And The Association with POTS

What is Joint Hypermobility?

Hypermobility is when your joints are more flexible than normal and move beyond the normal range of motion. It is often referred to as being double jointed. When this accompanied by muscle or joint pain but without any systemic disease, it is referred to as hypermobility syndrome. But when it has a more widespread effect on the body it usually involves conditions or syndromes like Marfan or Ehlers-Danlos syndrome.

Girls are more hypermobile than boys are. It tends to run in families, but the exact cause isn't known. It is believed that the genes involved in the production of collagen, which is an important protein for joints, tendons, and ligaments, are involved. Syndromes like Ehlers-Danlos and Marfan are inherited disorders. People with Down's Syndrome are frequently hypermobile. Other conditions associated with hypermobility are SLE/Lupus, fibromyalgia, and chronic fatigue syndrome. And I will eventually get to POTS

Some children do not have any symptoms. But others have joint and muscle pain in the afternoon or evening after they have been active. The knees, elbows, calf and thigh muscles are commonly affected. And the pain gets better after rest.

Children with hypermobility are prone to sprains and soft tissue injury, as well as dislocated joints. They also have something called impaired joint position sense and back pain along with flat feet.

This can cause chronic pain. Their skin may also be loose, and they may have an unusual amount of bruising.

The cramping and deep muscle ache commonly referred to as growing pains are more prevalent in children with hypermobility.

This excessive flexibility lessens as the children get older and the symptoms get better. But for some people, this doesn't happen and they remain prone to dislocations for their whole life.

SOME SIGNS OF HYPERMOBILITY

• Can you touch the floor with the palms of your hands flat while the knees are unbent?
• Can your elbows go beyond straight?
• Can you move your thumb to touch your forearm?
• Can your little fingers be moved so that they are perpendicular to the upper arm?

Treatments for hypermobility has to be individualized. And it is dependent upon the severity of the symptoms. Some children do not require treatment.

Exercise is important. Maintaining good posture when standing and sitting is important. Standing with the knees bent slightly and avoiding over-extending joints is very important. Patients need to wear good shoes that have good arch supports do to flat feet. Physical therapy is necessary in some cases to strengthen the muscles and joints and prevent injuries.

Medicine for pain management usually is limited to acetaminophen an NSAIDS. For severe cases, pain management doctors may be necessary. http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Hypermobility-Juvenile

 For more information; http://hypermobility.org/help-advice/

I'm pretty sure I have hypermobility and it seems to run in the family. Because I can do several of these things in the photos. However, mine is probably associated with Lupus, which I will get to later. 

Joint hypermobility - have you heard of it?

EDS/ Ehlers-Danlos Syndrome

In general Ehlers-Danlos Syndrome or EDS differs from other types of hypermobility in that there is skin involvement due to collagen problems.

Ehlers-Danlos Syndrome or EDS is a group of heritable connective tissue disorders. It is believed to alter the way collagen works in the body, and can affect multiple systems in the body. Their are certain physical characteristics to each type. Most of the types have known genes that cause them.

Statistically, 1 in 2,500 to 1 in 5,000 people have Ehlers-Danlos Syndrome. It effects both male and females as well as all races and ethnicities.

Common to all types of EDS are hypermobile joints, skin involvement, like soft, stretchy, saggy or think skin, bruising easily, easy wounding and wounds that heal poorly and leave scars.

But each type still has unique features. Usually people don't have more than one kind of EDS.

People with EDS have hypermobility of joints. Their joints frequently dislocate and sublux. Their joints hurt. And they can hyperextend. They usually have osteoarthritis early in life.

Their skin can be described as velvety soft. It is very stretchy, and it is fragile, meaning that it tears and bruises easily, and the bruising can be severe. Injuries leave severe scars, and wounds heal poorly and slowly.

There are also miscellaneous and less common symptoms, depending on type.

Hypermobility type sometimes has chronic, early onset, musculoskeletal pain. Vascular Type sometimes has arterial/intestinal/uterine fragility or rupture; Kyphoscoliosis Type sometimes has scoliosis at birth and scleral fragility; Arthrochalasia Type sometimes has poor muscle tone; and they all can have mitral valve prolapse; and gum disease.

The different types of Ehlers-Danlos Syndrome is differentiated by whatever problem it causes with making or using collagen. Collagen is the protein that the body used to make tissue strong and to make it elastic. Collagen is the most abundant protein in your body and different types are found in the skin, muscles, tendons and ligaments, as well as the blood vessels, organs, gums, and eyes. In normal collagen tissues do not stretch beyond the limit, and will return to normal. Collagen is all over in the body. EDS is a problem with this basic building material in the body. The structure of the collagen is defective. Because of this tissue can be pulled beyond what is the normal limits and this results in damage.

Because collagen is in so many areas of the body EDS is a systemic problem.

Ehlers-Danlos Syndrome is divided into six different types, and several different mutations that don't fit into those categories. There are different signs and symptoms for each type. And a child who has EDS will always have the same type as their parent has. A parent who has Classical Type Ehlers-Danlos Syndrome will not have a child with Vascular Type Ehlers-Danlos Syndrome. The types are:

• Hypermobility Type
• Classical Type
• Vascular Type
• Kyphoscoliosis Type
• Arthrochalasia Type
• Dermatosparaxis Type
• Other Types

You can read more about the types here: http://ehlers-danlos.com/eds-types/

The diagnosis of Ehlers-Danlos Syndrome is based on specific criteria depending on the type. Diagnosis is made based on the family history and clinical observations. Genetic testing can be done for Ehlers-Danlos Syndrome, except in the most common type, Hypermobility Type.

Different EDS types have different prognosises. Those who have Vascular Type EDS have shortened life expectancy because of the possibility of organ and blood vessel ruptures. The other types of EDS do not have a shorter life expectancy. The severity of the condition varies from person to person even within families. Each case is unique to the patient. There is no cure for Ehlers-Danlos Syndrome, but the symptoms can be treated.

http://ehlers-danlos.com/what-is-eds/

https://www.facebook.com/ehlers.danlos/posts Ehlers-Danlos Society

Other Types of Hypermobility

Marfan Syndrome

OsteogenesisImperfecta

Sticklers Syndrome

Pseudoxanthoma Elasticum

I am not going to cover all of them, but I am going to go over  Marfan Syndrome and the association of Lupus with hypermobility.  And then POTS.

MARFAN SYNDROME

Marfan syndrome is also genetic. It affects the connective tissue by in a different way than EDS. 

There are other proteins that make up connective tissue besides collagen. In Marfan Syndrome the problem is with a protein called Fibrillin. There is not enough of it. And there is a problem with how it interacts with Transforming Growth Factor – Beta. This causes the tissues to be weak and fragile.

Because connective tissue holds all of the bodies cells, organs and tissue together, it is involved in how the body grows and develops. With Marfan Syndrome, the aorta, bones and eyes are involved. 

 With Marfan Syndrome there can be aortic enlargement, which can be life threatening. The lungs, skin and nervous system can also be affected. 

Around 1 in 5,000 people have Marfan syndrome. This includes men and women of all races and ethnic groups. Around 75% of people with Marfan syndrome inherit it, meaning it is a genetic mutation. Some people with Marfan  have no other family members who have it and this is called a spontaneous mutation. People who have Marfan Syndrome have a 50% chance of passing it on to their children.  

Even though people with Marfan Syndrome are born with it, signs and symptoms do not always show up immediately. Sometimes complications like aortic enlargement do not show up until later in life.  Marfan affects heart and blood vessels, as well as bones and joints, and it is usually a progressive condition. 

Early diagnosis is key in MFS. It is important to have good medical care if you have Marfan Syndrome/ MFS. Patients are at risk for life threatening complications. 

People with MFS can have aortic tears as well as bulging aorta called an aortic aneurysm. There is also sometimes mitral valve prolapse and congestive heart failure. 

With the lungs, besides lung collapse, patients can have asthma, emphysema, and sleep apnea. 

Some of the signs of MFS are obvious, although each patient will have different combinations of them:

• Long arms, legs and fingers
• Tall and thin body type
• Curved spine
• Chest sinks in or sticks out
• Flexible joints
• Flat feet
• Crowded teeth
• Stretch marks on the skin that are not related to weight gain or loss

Some of the other signs are sudden lung collapse and eye problems that include severe nearsightedness,  and sometimes farsightedness called hyperopia, detached retina, dislocated lens, early glaucoma and early cataracts. There is also a condition called strabismus, where the eyes don't line up and look the same direction at the same time, similar to lazy eye.

https://www.marfan.org/about/body-systems

The most obvious sign of Marfan Syndrome is how the people are built they are unusually tall, with unusually long arms, legs and fingers. Abraham Lincoln may have had Marfan Syndrome. Abraham Lincoln and Marfan Syndrome He had disproportionately long limbs and fingers. 

Marfan's Syndrome - CRASH! Medical Review Series

Marfan Syndrome Diagnosis and Treatment-Mayo Clinic

Lupus and Hypermobility

"Thirty nine (48%) patients with SLE and 42 (15%) of the control group were hypermobile. A logistic regression model was developed. The odds ratio of the association between laxity and SLE after adjustment for age and sex was 2.31 in the group younger than 49 years, and 17.99 in the group aged 49 years or older. Neither the clinical and analytical profile nor the use of corticosteroids was related to joint laxity.

Conclusion: Patients with SLE showed more hypermobility than controls. Hypermobility was more profound in older patients with SLE (≥49 years). Joint laxity was not associated with any clinical or analytical pattern. Treatment with corticosteroids was not related to joint laxity." Annals of Rheumatic Disease The Eular Journal, Association of systemic lupus erythematosus and hypermobility

Eighty percent of patients with Ehlers-Danlos Syndrome hav POTS. But not all POTS patients have EDS. Those patients who do have EDS usually have Type III EDS, the hypermobility type.

Lupus and EDS and MFS all cause POTS at least in part because  they have connective tissue abnormalities which allow excessive amounts of blood to pool in these patients' lower limbs when they stand up. In the case of Lupus, there can also be all of the neurological autonomic system problems.Autoimmune disorders,such as Guillain-Barre (Singh, Jaiswal, Misra & Srivastava, 1987) and lupus are suspected of causing POTS symptoms in some individuals. 

"Researchers have discovered an antibody to neuronal nicotinic acetylcholine receptors of autonomic ganglia (Vernino, Low, Fealey, Stewart, Farrugia & Lennon, 2000).  Some people with POTS have an antibody titer test that is positive to this antibody. Patients with orthostatic intolerance, anhidrosis, constipation, urinary dysfunction, sicca syndrome and pupillary dysfunction had higher antibody titers than subjects that did not (Gibbons & Freeman, 2009). Patients with the highest levels of these ganglionic-receptor-binding antibodies have the most severe autonomic dysfunction. Physicians have discovered that antibody levels lower as some patients improve, which suggests a cause and effect relationship. Patients interested in being tested for the ganglionic antibody should have their physician contact:"

Mayo Medical Laboratories

1-800-533-1710

mml@mayo.edu

What Causes POTS--Autoimmune Disorders

"One study on patients with "joint hypermobility syndrome", a disorder similar if not identical to EDS III, showed that 78% had signs of dysautonomia, such as orthostatic hypotension, postural orthostatic tachycardia syndrome and uncategorized orthostatic intolerance (Gazit, Nahir, Grahame, & Jacob, 2003). These patients also had evidence of a-adrenergic and B-adrenergic hyperresponsiveness. The authors of this study note that patients with the joint hypermobility syndrome have apparently intact vagal control of heart rate with disturbed sympathetic function. They further state that "the sympathetic dysregulation associated with joint hypermobility syndrome may have several explanations, such as peripheral neuropathy, blood pooling in the lower limbs, impaired central sympathetic control, or deconditioning due to muscle disuse through pain or fear of pain".

Another study of one hundred and seventy women with joint hypermobility syndrome concluded that non-musculoskeletal symptoms are common in patients with joint hypermobility syndrome, and that individuals with these symptoms may express more fatigue, anxiety, migraine, flushing, night sweats, and poor sleep than their peers (Hakim & Grahame, 2004)." http://www.dinet.org/index.php/information-resources/pots-place/pots-causes

Don't forget to check out the POTS videos at the bottom of the blog. You have to scroll down to the bottom to find them.

Connecting the Dots Between EDS and POTS

PoTS and Hypermobility Syndrome - Blair Grubb, MD

Fibromyalgia

Fibromyalgia is a condition in which a patient experiences widespread musculoskeletal pain, fatigue, sleep, memory and mood problems. It is believed that fibromyalgia causes pain sensations to be amplified by the way the brain processes pain signals.

It is believed that repeated nerve over-stimulation during some physical or psychological trauma may cause the brain to change the way it functions. This causes an abnormal increase in neurotransmitters which are chemicals in the brain that communicate with the rest of the body. The brain's pain receptors also develop something like a memory of the pain and become over sensitive and overreact to pain signals coming from the body.

The symptoms can sometimes start after physical trauma, surgery, infection or psychological stress. But in some patients, the symptoms gradually progress over a period of time and  it is not readily apparent what triggered it. TMJ/Temporomandibular joint problems, irritable bowel syndrome, depression and anxiety.

Fibromyalgia runs in some families indicating that there is some genetic component that makes people more susceptible.  Sometimes illness seems to trigger it. And physical and emotional stress and trauma trigger it. There is also a link between fibromyalgia and PTSD, post-traumatic stress disorder. People with  an autoimmune disease are also at a higher risk of having fibromyalgia probably because they are in a lot of pain that sets off the process of overstimulation of the brain.

There isn't a cure for fibromyalgia. But there is symptom control. Stress reduction, relaxation, and exercise can be helpful.

Patients describe the pain of fibromyalgia as a constant dull ache and it usually has lasted for three months or more. It occurs on both sides of the body and above and below the waist.

Patients often wake up tired even after sleeping for a long period of time. Their sleep is interrupted by pain and they usually have other sleep disorders, like RLS/restless leg syndrome and sleep apnea.

Another common complaint in fibromyalgia is “fibro fog”. Patients experience difficulty focusing, and paying attention and are unable to concentrate on simple tasks.

They also suffer from headaches, pain, and cramping in their lower abdomen and depression.

There are 18 pressure points of the body that when pressed on a normal person don't hurt. But on a person with fibromyalgia they hurt. But doctors no longer have to rely on this test Now a diagnosis of fibromyalgia can be made if a person has had widespread pain for more than three months and has no underlying medical condition causing the pain. Your doctor may still run blood tests to rule out other conditions.

Treatments for fibromyalgia include pain relievers like Tylenol, ibuprofen or naproxen sodium. Tramadol is also used. Antidepressants like Cybalta and Savella help with pain and fatigue. Amytriptalene is often prescribed to help patients sleep at night. It has a chemical makeup similar to the muscle relaxer Zanaflex in addition to being an antidepressant. Gabapentin, an antiseizure drug also helps with pain symptoms. Another drug of this type is Lyrica, and it was the first drug approved by the Food and Drug Administration to treat fibromyalgia.


It is important for people with fibromyalgia to get plenty of sleep. This can be helped by going to bed and getting up at the same time every day.

Avoid overexertion and stress. Make time to relax and destress every day. Do something you enjoy. Try to maintain a routine. Deep breathing and meditation can be helpful. Yoga and tai chi are helpful because they include exercise, with meditation and deep breathing to help you relax. The slow movements also help avoid overdoing and causing pain.

Exercise has been found to be helpful. Due to pain. it is best to increase the level of exercise gradually. The exercise can be things like riding a bike, walking or swimming. Physical therapy can be helpful and a physical therapist can teach you how to do exercises at home.

Other forms of therapy that have been found helpful include acupuncture and massage therapy.

Your general activity should be kept on an even level so that you don't overdo. Try to maintain a balance between doing too much and not doing enough.

It can be helpful to find other people who have fibromyalgia and understand what you are experiencing.  National Fibromyalgia Association and the American Chronic Pain Association

After you watch the Fibromyalgia videos, don't forget to watch the POTS videos at the bottom of the blog. You have to scroll down for them.

IS POTS AN AUTOIMMUNE DISEASE? The Connection Between Dysautonomia and Autoimmunity

It is a recognized fact that some autoimmune diseases  also cause POTS, like Sjogren's Syndrome or Systemic Lupus Erythematosus. This is because these diseases cause damage called neuropathy by causing your body to produce autoantibodies that attack nerve cells/fibers.


But is POTS itself an autoimmune disease?

I happen to have both. I found this interesting article on the subject. New evidence of autoimmunity in POTS!  

There are a few other autoimmune diseases known to cause POTS. Guillain-Barre Syndrome and  CIDP, Chronic Inflammatory Demyelinating Polyneuropathy. Guillain-Barre works both like an infection and an autoimmune disorder simultaneously. It causes nerve inflammation and damages the protective myelin sheath covering the nerves. As a result, the nerve signals travel too slowly and can result in the nerve fibers being totally destroyed. It usually comes on suddenly after a GI infection or lung infection. The end result is some degree of motor function loss or damage to the motor nerves. CIDP is a more chronic form of Guillain-Barre.

They did a study to find out whether or not Lupus patients who also had Fibromyalgia were more likely to have Orthostatic Tachycardia, also called Neurally mediated hypotension.

They found that 47.9% of Lupus patients had Neurally mediated hypotension(NMH), Seven of the patients in the study had NMS and POTS. Two patients had borderline results because they didn't show enough of a drop in systolic BP when they stood. 23% of the SLE patients had fibromyalgia.

Eighteen (23.7%) SLE patients had FM and 51 (67.1%) had at least one tender point (TP). The frequency of NMH (first or second stage) in SLE with FM was 58.3% compared with 69.4% in SLE without FM. This indicates that fibromyalgia and NMH being associated with Lupus isn't because NMH causes fibromyalgia.
http://rheumatology.oxfordjournals.org/content/43/5/609.full

This study found in Rheumatology International, July 2006, Volume 26, Issue 9, pp 837–840, showed that 37% of patients in the study who had Lupus also had autonomic symptoms. 18% of them had lab results showing autonomic dysfunction. This dysfunction didn't appear to have anything to do with how long they had had Lupus, lupus activity, disease damage, any particular organ involvement or the presence/absence of peripheral neuropathy. This means they could have autonomic dysfunction without having peripheral neuropathy. http://link.springer.com/article/10.1007%2Fs00296-005-0093-0

Sjogren's Disease effects most notably, the lacrimal glands,(your eyes) and salivary glands(your mouth)  by damaging your ability to produce tears and saliva. It can also damage your lungs, kidneys, bladder, joints, etc.  Sjogren's Disease  sometimes causes autonomic, sensory, and motor neuropathy, as well as CNS lesions/inflammation in the spinal cord and brain. Besides hypotension and tachycardia, these patients often have gastrointestinal problems, difficulty swallowing, headaches, body aches and nerve pain in the arms and legs. They may have hypersensitivity to light, sound, and skin sensation, outside of any migraines.

The thing I find most interesting about POTS and Sjogren's is that dehydration is a symptom of both illnesses. And anhydrosis or the inability to sweat or decreased sweating is a symptom of both diseases. In this case, Sjogren's destroys the sweat glands and in POTS it is caused by nerve damage.  And it would be difficult to tell which one causes which.


Another study  I read at The National Center for Biotechnology Information found the following:

"Patients with POTS have a higher prevalence of autoimmune markers and co-morbid autoimmune disorders than the general population. One in four patients have positive ANA, almost one in three have some type of autoimmune marker, one in five have a co-morbid autoimmune disorder, and one in nine have Hashimoto's thyroiditis." http://www.ncbi.nlm.nih.gov/pubmed/26038344

Other autoimmune conditions that occur with POTS are Multiple Sclerosis (MS),
Ehlers-Danlos Syndrome (EDS) which is more of a connective tissue disease than an autoimmune disease, Celiac Disease, Crohn's Disease, Addison's Disease, Graves Disease, Hashimoto's Thyroiditis, and antiphospholipid syndrome, and Rheumatoid Arthritis.

A severe form of dysautonomia is called Autoimmune Autonomic Ganglionopathy(AAG). Only around 100 people are diagnosed with it each year.