Profound Debiliating Fatigue Found To Be A Major Issue For Autoimmune Disease Patients In New National Survey
- Date:
- American Autoimmune Related Diseases Association
- Summary:
- Fatigue is a major component of autoimmune disease research team has found. Fatigue described as “profound,” “debilitating,” and “preventing them from doing the simplest everyday tasks,” is a major issue for autoimmune disease patients, impacting nearly every aspect of their lives.
Fatigue described as “profound,” “debilitating,” and “preventing them from doing the simplest everyday tasks,” is a major issue for autoimmune disease patients, impacting nearly every aspect of their lives. It affects their mental and emotional well-being and their ability to work. And while most AD patients have discussed their fatigue with their physicians, many have not been prescribed treatment for their fatigue.
Those are among the major findings of a new online survey of autoimmune disease patients conducted by the American Autoimmune Disease Related Diseases Association , the nation’s only not-for-profit autoimmune disease patient advocacy organization, to examine the connection between autoimmune disease and fatigue. AARDA released the findings of the survey of 7,838 AD patients at a national summit held to commemorate National Autoimmune Disease Awareness Month at the National Press Club in Washington, D.C.
Major findings include:
Almost all AD patients surveyed report they suffer from fatigue.
Nine-in-10 say it is a “major issue” for them and six-in-10 say it is “probably the most debilitating symptom of having an AD.”
What Questions Might A Healthcare Provider Ask To Help Diagnose An Autoimmune Disease
When your healthcare provider interviews you, they might ask you one or more of the following questions:
- What medications are you taking?
- What are your symptoms?
- How severe are your symptoms?
- Have you had to go to the emergency department because of your symptoms?
- How long have you had these symptoms?
- In what ways are your symptoms affecting your quality of life?
- Is there anything that triggers your symptoms? Anything that makes them worse?
- Is there a history of autoimmune diseases in your family?
- Which autoimmune diseases run in your family?
- What over-the-counter or alternative medicines have you tried, if any?
Effects Of Chronic Fatigue In Autoimmune Diseases
Autoimmune diseases and chronic fatigue go hand in hand, as anyone with lupus, scleroderma, multiple sclerosis, fibromyalgia, IBD will testify. Chronic fatigue affects daily life and your ability to go about your business. Its incredibly debilitating and yet, very misunderstood by those who dont suffer from it. Weve put together a list of six of the most common effects of chronic fatigue that people with autoimmune disease experience with help from prevention.com.
Its more than just being tired.
Chronic fatigue is more than just needing an early night or feeling a bit under the weather, everything you do feels like it takes an enormous efforteven the littlest of things. While sleep helps, it doesnt necessarily fix things or instantly give you more energy, in fact, some days all you can do is sleep.
You cant sleep, or get enough sleep.
Even though youre exhausted, you may still be unable to fall asleep or stay asleep at night. Disturbed sleep or poor quality sleep only compounds the problem of chronic fatigue so people feel trapped in a never-ending cycle.
You cant concentrate.
Many people with autoimmune diseases will be familiar with brain fog. Being unable to concentrate or keep your mind on one thing is very common with chronic fatigue. Many find that theyre unable to think of the words they want to say when in conversation, theyre forgetful, or theyre easily distracted and unable to focus.
Physical activity is draining.
Youre dizzy and lack balance.
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Autoimmune Diseases And Fatigue
Fatigue is probably intertwined with the definition of illness, almost any illness, but with some conditions fatigue becomes ingrained into the afflicted persons being and is a feature of their daily life. Such is the case with the highest profile disorders, cancer and cardiovascular disease, but it is just as true with at least some autoimmune diseases. I have a long history of dealing with autoimmunity and the complaint that kept bringing me back to doctors persisting in finding out what was going on was the dogged lack of energy, vitality. I got guess after guess after guess and when I got the answer it was basically that fatigue was part of the deal with the autoimmune disease that I have, Sjogrens, as well as Im sure many others. So what Im asking here is if you experience it, fatigue, how has it impacted your life and how do you deal with it? Have you found anything that you are sure mitigates it?
John, Im so glad you started this discussion specific to fatigue. As you know my mom suffers from fatigue and were still trying to get to the bottom of the cause. Im tagging other members on this discussion in the hopes that theyll share their experiences with autoimmune disease and fatigue.
: John asks, Do you experience fatigue? How has it impacted your life and how do you deal with it? Have you found anything that you are sure mitigates it?
How Are Autoimmune Diseases Diagnosed
Diagnosing an autoimmune disease usually takes healthcare providers longer than it does to diagnose other diseases. This is because many autoimmune diseases have similar symptoms with each other and with other diseases. You can help your healthcare provider with the diagnosing process by bringing the following to your appointment:
- A detailed list of any symptoms and how long youve had them.
- A record of your familys health history. Note if anyone in your family has an autoimmune disease.
In addition to interviewing you about your symptoms, your healthcare provider may do some blood tests to check for autoimmune diseases, including:
- Antinuclear antibody test .
Specific symptoms combined with specific blood markers may prove that you have an autoimmune disease.
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What Are Autoimmune Diseases
Your immune system is made up of organs and cells meant to protect your body from bacteria, parasites, viruses and cancer cells. An autoimmune disease is the result of the immune system accidentally attacking your body instead of protecting it. It’s unclear why your immune system does this.
There are over 100 known autoimmune diseases. Common ones include lupus, rheumatoid arthritis, Crohns disease and ulcerative colitis.
Autoimmune diseases can affect many types of tissues and nearly any organ in your body. They may cause a variety of symptoms including pain, tiredness , rashes, nausea, headaches, dizziness and more. Specific symptoms depend on the exact disease.
How Do Autoimmune Diseases Affect You If You’re Trying To Get Pregnant
Some autoimmune diseases can affect your ability to get pregnant and some have adverse effects on pregnancy. You may need fertility treatments to get pregnant. You might also want to wait until your disease is in the remission stage to try to conceive.
There is a higher risk for stillbirth or preterm birth if you have lupus. If you have myasthenia gravis, you may experience trouble breathing.
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Autoimmune Disease Risk Factors
Researchers dont know what causes autoimmune disease, but several theories point to an overactive immune system attacking the body after an infection or injury. We do know that certain risk factors increase the chances of developing autoimmune disorders, including:
- Genetics: Certain disorders such as lupus and multiple sclerosis tend to run in families. Having a relative with autoimmune disease increases your risk, but it doesnt mean you will develop a disease for certain, says Orbai.
- Weight: Being overweight or obese raises your risk of developing rheumatoid arthritis or psoriatic arthritis. This could be because more weight puts greater stress on the joints or because fat tissue makes substances that encourage inflammation.
- Smoking: Research has linked smoking to a number of autoimmune diseases, including lupus, rheumatoid arthritis, hyperthyroidism and MS.
- Certain medications: Certain blood pressure medications or antibiotics can trigger drug-induced lupus, which is often a more benign form of lupus, Orbai says. Our myositis center also discovered that specific medications used to lower cholesterol, called statins, can trigger statin-induced myopathy. Myopathy is a rare autoimmune disease that causes muscle weakness. Before starting or stopping any medications, however, make sure to talk to your doctor.
Does Fibromyalgia Weaken Your Immune System
As we all know, the immune system is responsible for protecting our bodies against disease-causing organisms. Although research is still ongoing, various reports have proven that fibromyalgia does indeed weaken our immune system.
Firstly, studies have shown that fibromyalgia patients tend to have high counts of white blood cells and cytokines , which is often observed when a patient is suffering from an infection. This in itself shows that this condition affects an individuals immune system.
Similarly, further studies show that this disorder weakens our brains immune system. It does this by reducing the blood flow in the brains pain center, hence affecting the neuron receptors. This eventually leads to increased pain and stress levels and a weak immune system that is incapable of fighting off bacteria.
Experts also insist that various symptoms of this condition, such as lack of sleep, fatigue, and loss of appetite, may weaken your immune systems ability to defend your body and keep you healthy.
In the same token, fibromyalgia usually leads to the decrease of a hormone known as cortisol, which in turn results in the increase of estrogen levels in the body. Consequently, the amount of progestin in the body decreases. According to researchers, this fluctuation of hormone levels in the body tends to weaken our immune system.
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Vagus Nerve And Cns Inflammation
Two mechanisms whereby peripheral inflammation can enhance CNS inflammation are through leaky areas in the blood-brain-barrier and the vagus nerve . The vagus nerve, the tenth cranial nerve, is the longest nerve in the autonomic nervous system. This nerve has parasympathetic control of numerous organs that are involved in respirationincluding the lungs, heart, and diaphragmto mediate oxygen demand , which could contribute to fatigue. The vagal nerve afferents tend to relay pro-inflammatory responses cells from organs in the periphery to the CNS . These vagal efferents tend to induce anti-inflammatory responses in peripheral tissue from CNS signals.
The DMN and NTS are major sources of efferent motor vagal input. Longer preganglionic cholinergic neurons communicate with postganglionic neurons in closer proximity and within tissues of the viscera to induce anti-inflammatory signals . Acetylcholine released from neurons interacts with muscarinic acetylcholine receptors and utilizes the DMN, NTS, nucleus ambiguus , and the vagal efferent nerve to alter heart rate, gluconeogenesis, and bronchial constriction . Consequently, these physiological effects could potentially affect fatigue-like behaviors.
Much Remains To Be Learned
For the most part, we still do not know what causes an autoimmune disease. That is, we do not know the specific factors that initiate the process ultimately leading to an autoimmune disease.
Since the official acceptance in the mid 1950s that the immune system can attack the very own body of an individual , several different theories have been proposed to explain the induction of an autoimmune disease.
Each theory is supported by experimental data and some clinical evidence, but none has the ability to explain the entire clinical picture in a satisfactory manner. Indeed, minimal change in the diagnosis and management of patients with autoimmune diseases has resulted from these theories of causation.
Quite interestingly, it also remains unknown why in autoimmune diseases the autoreactive lymphocytes become specific for a particular antigenic target, as opposed to other possible targets . For example, in patients with type 1 diabetes mellitus, why is the insulin-producing beta cells of the endocrine pancreas targeted by the patient’s immune system rather than the nearby glucagon-producing alpha cells?
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What Are Common Symptoms Of Autoimmune Disease
Between taking care of yourself and family members and trying to manage a social life and career, its common for women to feel tired and achy. But are these symptoms of a stressful life, or could they be tied to an underlying condition like autoimmune disease?
Ana-Maria Orbai, M.D., M.H.S., is a rheumatologist at the Johns Hopkins Arthritis Center. Rheumatologists specialize in diagnosing and treating musculoskeletal diseases and autoimmune conditions . Orbai talks about how to recognize common autoimmune disease symptoms and when you should see a doctor.
Experiment With Complementary Wellness Approaches To Help Fight Fatigue
Aromatherapy is one example of an complementary remedy that may be used in addition to traditional treatment. It uses the essential oils from plants and other sources to lessen the effects of stress and promote well-being. The oil is usually diluted and either rubbed into your skin or inhaled. Some laboratory studies performed on animals suggest that essential oils can be effective in promoting energy. Essential oils, such as those made from geranium, lavender, and cedarwood, may send chemical messages to your brain that improve your mood and help you to feel more relaxed and energized.
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Treatments For Mouth And Throat Symptoms
If you have a dry mouth, you should try to see a dentist every three to six months, so they can monitor and treat your symptoms.
You may find that artificial saliva, lozenges, sugar-free gum or gels help your mouth feel less dry. Sprays are also good, but some are acidic and can increase tooth decay, so make sure you use ones containing fluoride.
Antifungal treatments can also help if your mouth is very dry and this is causing other problems, such as fungal infections and dry coughs. Mouth rinses containing chlorhexidine may help with your dental hygiene, but you should only use them for short periods of time every so often, as they could stain your teeth.
You can also get toothpastes or mousses containing fluoride, which can help reduce decay. Try to use alcohol-free products, as products containing alcohol can dry your mouth out.
You should be able to get most of the products above from a chemist or supermarket.
If your salivary glands are making the sides of your face painful, talk to your doctor, as you may have an infection. If its not an infection, you may be prescribed a short course of a steroid called prednisolone, or given a steroid injection to reduce the inflammation.
Treat Underlying Conditions That May Cause Fatigue
âFatigue with lupus is sometimes caused by an underlying medical problem, such as anemia, fibromyalgia, depression, or a kidney or thyroid problem. And in some cases, it can be a side effect of medication,â says Meenakshi Jolly, MD, MS, director of the Rush Lupus Clinic and assistant professor of medicine and behavioral medicine at Rush University. âIn these cases, we can often treat the fatigue by treating the condition or changing the patientâs medication.â
Ask your doctor to check if your fatigue may be related to another condition or a medication. If it is, find out about treatment.
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Some Of The Areas That Are Being Studied As Possible Causes Of Me/cfs Are:
People with ME/CFS often have their illness begin in a way that reminds them of getting the flu. This has made researchers suspect an infection may trigger ME/CFS. In addition, about one in ten people who become infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti will develop a set of symptoms that meet the criteria for ME/CFS. People with these infections who had severe symptoms are more likely than those with mild symptoms to later develop ME/CFS symptoms. But not all people with ME/CFS have had these infections.
Other infections that have been studied in connection with ME/CFS are human herpesvirus 6, enterovirus, rubella, Candida albicans, bornaviruses, mycoplasma, and human immunodeficiency virus . However, these infections have not been found to cause ME/CFS.
It is possible that ME/CFS is caused by a change in the persons immune system and the way it responds to infection or stress. ME/CFS shares some features of autoimmune illnesses . For example, both ME/CFS and most autoimmune diseases are more common in women and both are characterized by increased inflammation. However, other signs of autoimmune disease, like tissue damage, are not found in patients with ME/CFS.
Scientists think that the immune system might be contributing to ME/CFS in other ways, including:
What Are Some Things I Can Do To Feel Better
If you are living with an autoimmune disease, there are things you can do each day to feel better:
You have some power to lessen your pain! Try using imagery for 15 minutes, two or three times each day.
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Fatigue Sleep And Autoimmune And Related Disorders
- 1Veterans Affairs Boston Healthcare System, Boston, MA, United States
- 2Department of Psychiatry, Harvard Medical School, Boston, MA, United States
- 3Department of Medicine, Harvard Medical School, Boston, MA, United States
- 4Department of Pulmonary and Critical Care Medicine, Brigham and Women’s Hospital, Boston, MA, United States
- 5Department of Pathology, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, United States
How Would You Describe Fatigue Associated With Pots
People with POTS experience fatigue differently. Many describe it as feeling beyond exhausted. Its as if your energy is completely depleted. The fatigue is probably hundreds of times worse than your worst flu. People with POTS may also have trouble concentrating and thinking straight. Doing simple tasks may feel like youve just run a marathon.
This fatigue might come and go, hitting you without warning daily, weekly or less frequently. For some people, extreme fatigue lasts for days. Others may experience periodic attacks. It can come on at any moment even if you just woke up. And there is no amount of sleep or coffee that can make it go away.
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