Thanks to the blog “Purple Thoughts” for this entry. I have read it before and it is well worth printing here. Hope it educates and explains it better than I can.
THE TOXIC FATIGUE OF LUPUS
BY GLORIA ROSENTHAL
Almost all lupus patients have heard the phrase “But you don’t look sick” and we cringe inside, knowing the speaker’s words do not convey the speaker’s true meaning: “You can’t be so sick if you look so well”.
The fatigue that comes with lupus elicits the same reaction. Try to explain the feeling to a friend and the response is often “I get tired, too”. I want to pounce on those words and say “tired? You get tired? I want to screech that the fatigue that comes with lupus is as unrelated to a “tired” feeling as a hang nail is to a broken arm. Calling toxic fatigue a tired feeling is like saying a major flood is a minor trickle of water.
So let’s talk, first about what lupus fatigue is NOT. It is not a tired feeling. It’s not a “want to take a nap” feeling. It’s not a “lazy day, think I’ll take it easy” feeling. It’s not a “wish I didn’t have to do this” feeling. What it is: is a full-body exhaustion that makes you feel as if you have no bones, that if you didn’t have skin wrapped around your body, you would melt down into nothingness like the Wicked Witch of the West. Or that you are a melting candle, except a candle has a wick and there is nothing in your body that feels that solid. On the other hand, your bones can feel so heavy that lifting your arms to wash your hair in the shower is a chore akin to a weightlifter hefting a 200 pound barbell. His task is easier, though, because as soon as he puts the barbell down, he’s through. But after you’ve soaped your hair, you have to rinse it. That means those bone-weary, heavy arms must be raised again and after the shower, these “barbells” must be toted around all day long for they cannot be discarded like the weight-lifters toys.
Eating too, is an exhausting habit, especially restaurant dining. There must be something in the atmosphere and a three course meal that makes the lupus body say. “Hey hold on there, why are you lifting a fork so many times?” or “You broke off one piece of roll and now you want to exert that physical activity again for another piece?”
Am I exaggerating? Of course, but just enough to get a point across, a point that the fatigue that accompanies lupus is not like any other feeling. It is indescribable, but I know that as these words are read by my fellow lupoids, heads will bob up and down in instant recognition, though that frantic activity (head bobbing) will create yet another bout of exhaustion.
How do I handle this extreme exhaustion? If I’m home, I get into bed when it hits though the toxic feeling that accompanies the fatigue makes me think that once I do that, I will never be able to get up again. However, experience tells me I will come out of it and will feel better when I do. I never refer to this melting away as a nap; it’s my afternoon “coma” and my husband tells me it is almost impossible to wake me. If he must do so, it some times takes ten minutes of gentle shaking (and maybe one minute of bulldozing tactics).
If I’m not at home when it hits, and I push through it from sheer will, it will be with me for the rest of the day. Even if I give in to it later, even if I crawl into bed after it has been with me for hours, I will not shake it. Years of dealing with it has taught me why this is so: the fatigue that comes with lupus hits hard and wants to be pampered but it knows, better than I do, just how much coddling it needs. If I bow to it, I’ll revive. If I don’t, the fatigue shakes its finger in my face and says “Okay kid, you asked for it; now it’s the rest of the day for you”. And so for the rest of that day, I am that wicked witch, that melting candle, that weightlifter. I try to work around it. I tell my good friends they have to pick up for lunch out. If I drive to them in the morning, later, with fatigue as my passenger, I will have a foot that’s too weak to depress a brake and arms not strong enough to turn a wheel. Some people understand, some never will. Perhaps this will help the ordinary fatigued person see that there is nothing ordinary about lupus exhaustion. I’m glad I’m finished here, because my body is warning me that a bout is coming and I’d better be going. My bed looks inviting and my fatigue will thank me for “putting it there” by giving me a few good hours later on.
Reprinted from News & Views Number 45 – March 1995 Lupus UK.
European Lupus Erythematosus Federation
For a print friendly version click here THE TOXIC FATIGUE OF LUPUS
This is from the Lupus Foundation of America’s web page. You can read more at www.lfa.org.
What is Lupus
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
- Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
- Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.
- Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
- Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
- Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
- It is believed that 5 million people throughout the world have a form of lupus.
- Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.
- Women of color are 2-3 times more likely to develop lupus.
- People of all races and ethnic groups can develop lupus.
- More than 16,000 new cases of lupus are reported annually across the country.
To start this post, I find it is important to describe what the definition of tremor is. Here is the definition from wikipedia:
A tremor is an involuntary, somewhat rhythmic, muscle contraction and relaxation involving to and fro movements (oscillations or twitching) of one or more body parts. It is the most common of all involuntary movements and can affect the hands, arms, eyes, face, head, vocal folds, trunk, and legs. Most tremors occur in the hands. In some people, tremor is a symptom of another neurological disorder. A very common kind of tremor is the chattering of teeth, usually induced by cold temperatures or by fear.
This would seem to be a complete definition but the things I experience do not necessarily fit into this tight definition. I do experience hands shaking, sometimes lip quivering, and muscle twitches at times. The shaking I get that drives me bonkers is where it feels like the whole inside of my body is shaking and it may or may not show in my hands or other body area. It is quite frustrating and scary. It makes me stop whatever I am doing and have to try to lay down and rest to relax my body. It does not seem to be anxiety related either. It cans trike me at random and is puzzling and frightening. So, as I usually do, I thought I would research this out too.
Amazingly, I found not one shred of medical information regarding this, other than others who have had this experience. I usually find things on medical boards or places like medline or webmd but not in this instance. It made me wonder if any of you have had this happen to you too.
I know I saw quite a few others asking this same question as well. I know I am not alone in this. It just may take some time until more is known in the realm of medical professionals for me to find anything online.
I decided to make this post so you all could share your stories of your journey with these autoimmune diseases. I honestly think that by sharing, it helps us in the day to day, knowing there are others that are dealing with the same issues. So, please share your story by commenting on this post. I think it will help our community bonding and each of us personally. Thanks! ~Jen
This information is from the NINDS website.
NINDS Neurological Sequelae Of Lupus Information Page
Synonym(s): Lupus – Neurological Sequelae, Systemic Lupus Erythematosus
Table of Contents (click to jump to sections)
Is there any treatment?
What is the prognosis?
What research is being done?
Additional resources from MedlinePlus
What are Neurological Sequelae Of Lupus?
Lupus (also called systemic lupus erythematosus) is a disorder of the immune system. Normally, the immune system protects the body against invading infections and cancers. In lupus, the immune system is over-active and produces increased amounts of abnormal antibodies that attack the body’s tissues and organs. Lupus can affect many parts of the body, including the joints, skin, kidneys, lungs, heart, nervous system, and blood vessels. The signs and symptoms of lupus differ from person to person; the disease can range from mild to life threatening.
Initial symptoms of lupus may begin with a fever, vascular headaches, epilepsy, or psychoses. A striking feature of lupus is a butterfly shaped rash over the cheeks. In addition to headache, lupus can cause other neurological disorders, such as mild cognitive dysfunction, organic brain syndrome, peripheral neuropathies, sensory neuropathy, psychological problems (including personality changes, paranoia, mania, and schizophrenia), seizures, transverse myelitis, and paralysis and stroke.
Is there any treatment?
What is the prognosis?
What research is being done?
I know I have written about this subject before but I found another article that I wanted to share. The information is from the link here: http://www.ninds.nih.gov/disorders/lupus/lupus.htm#What_is
I have to say that I have manifested several of these neurological symptoms in my lupus journey. To be specific, I have periphreal neuropathy in my feet, migraines, and parasthesia is my face. I am hoping by learning more about it, it will help me to sort out all these issues that are plaguing me in my journey.
So, enjoy the read if you are interested in this type of information. Hope it gives others some answers like it helped me.
What are Neurological Sequelae Of Lupus?
Lupus (also called systemic lupus erythematosus) is a disorder of the immune system. Normally, the immune system protects the body
against invading infections and cancers. In lupus, the immune system is
over-active and produces increased amounts of abnormal antibodies that attack the body’s tissues and organs. Lupus can affect many parts of the body,
including the joints, skin, kidneys, lungs, heart, nervous system, and blood
vessels. The signs and symptoms of lupus differ from person to person; the
disease can range from mild to life threatening.
Initial symptoms of lupus may begin with a fever, vascular headaches, epilepsy, or psychoses. A striking feature of lupus is a butterfly shaped rash over the cheeks. In addition to headache, lupus can cause other neurological disorders, such as mild cognitive dysfunction, organic brain syndrome, peripheral neuropathies, sensory neuropathy, psychological problems (including personality changes, paranoia, mania, and schizophrenia),
seizures, transverse myelitis, and paralysis and stroke.
Is there any treatment?
What is the prognosis?
What research is being done?
I have had the flu twice so far this season. It got me to thinking, is there a link or a reason why lupus patients get it worse than others? Why are we susceptible? Will I go into a flare (or prolong an existing one)? So, I dug around and found this article talking about lupus and the higher susceptability for the flu.
The reason I looked this up is that I am really struggling to be as “normal” as I can be but I feel so totally like c-rap. I almost went tot he ER the other day because of my swollen lymph nodes, fever, chills, facial blushing, severe head congestion, and swollen sinuses. Let me add to that, my joints and body aches and pains and the inability to sleep from all of the above, and you get the drift. Why didn’t I go you ask? To be quite honest, whenever I go to the ER, I feel like they look at me and think, “Why is she wasting out time?”. I mean, for some reason, the severity of my symptoms alone should raise a red flag, but it doesn’t.
For some reason, they do not think lupus has anything to do with me being sick so instead of going, I try to use home remedies instead. I used honey and lemon tea, my nebulizer, and have been taking benadryl and tylenol and on the off two hours, aspirin. It has helped some, but not a lot. So, I will continue to deal with this on my own. How sad is that?
To make it worse, some of my family (not my husband) have either said or implied that I should get over it because it is JUST A COLD. Wow! Really? I guess they got their medical degrees when I wasn’t looking.
It is for these reasons, I decided to check this out. The information is from a website called HULIQ. It is an interesting read. Enjoy and next time someone thinks you should get over it, I say get over them! Toodles!
Lupus Patients Are At Increased Risk Of Flu Infection
Patients with the autoimmune disease systemic lupus erythematosus (SLE) have an increased risk of infection, due to both disturbances in their immune responses and treatment with immunosuppressive drugs. Because morbidity and mortality related to influenza are increased in immunocompromised patients, it is recommended that patients with SLE get annual flu shots, which are safe and do not increase disease activity.
Both antibody and cell-mediated responses are involved in the immune response to influenza; in SLE, antibody responses to the vaccine are diminished, but it is not known if the same effect is seen in cell-mediated responses. A new study was the first to examine cell-mediated responses in SLE patients prior to and following influenza vaccination. The study was published in the August issue of Arthritis & Rheumatism.
Led by Albert Holvast, of the University of Groningen in The Netherlands, the study involved 54 patients with SLE and 54 healthy controls who received subunit flu vaccine, out of a total of 78 patients in each group. Patients were randomized 2:1 to receive a flu vaccine or serve as a nonvaccinated control. Patients and controls were followed up at 28 days and three to four months following vaccination, at which time blood was drawn.
Vaccination induces an influenza virus-specific immune response which is generally documented as the generation of antibodies specifically reacting with the virus. However, the main defense against the virus is exerted by specific immune cells, in particular CD4+ and CD8+ T-cells which are part of the immune response induced by vaccination. The level of this so-called cellular immune response has until now not been documented in patients with SLE, but is crucial for the effect of vaccination.
The results showed that cell-mediated responses (both CD4+ and CD8+ T-cells) to influenza were lower in SLE patients prior to vaccination. Following vaccination, cell-mediated responses remained lower in SLE patients than controls. CD4+ and CD8+ T-cell responses to staphylococcal enterotoxin B (SEB), which was used as a positive control, were normal in patients with SLE, indicating that their decreased cell-mediated response to the flu vaccine was not attributable to a decreased responsiveness of T cells in general. However, the use of the medications prednisone and/or azathioprine was associated with lower cell-mediated responses following vaccination.
Previous studies have shown that antibody production following flu vaccination is lower in SLE patients than in the general population and the current study confirmed these results. The authors evaluated the relationships between antibody and cell-mediated responses because CD4+ T-cell help is necessary for antibody responses. While they did not find a correlation between CD4+ T-cell and antibody responses using flow cytometry, they did find a modest correlation using ELISpot assay, a more sensitive technique. They also found that flu vaccination did not induce disease activity over three to four months.
Although the sample size in this study was not large, the authors conclude that the diminished cell-mediated immune and antibody responses to flu vaccination in SLE patients are representative of what occurs in daily practice. “Clinicians should be aware that this combined defect might increase the morbidity and mortality due to influenza virus infection, in particular in patients receiving prednisone and/or azathioprine,” they state, adding that evaluating clinical protection against influenza in SLE patients following vaccination may be warranted in order to assess whether more effective influenza vaccines or vaccination strategies are warranted.
Hey everyone! I am taking the easy way out tonight and posting an article I found on medicalnewstoday.com. Hope you enjoy the article and tomorrow I hope to post a new post. Thanks and enjoy!
Lupus Research Investigator Says Breakthrough Holds Potential For New Treatment To Quiet Lupus
Researchers at the Dana-Farber Cancer Institute in Boston have identified a new type of cell in mice that dampens the immune system and protects the animal’s own cells from immune system attack.
This “suppressor” cell reduces the production of harmful antibodies that can drive lupus and other autoimmune diseases in which the immune system mistakenly turns on otherwise healthy organs and tissues.
The discovery, published in a recent issue of Nature (H Kim, et al.; Vol 467 in Letters), resulted from Lupus Research Institute funding to Harvey Cantor, MD, and colleagues on a separate immune system topic.
Now the discovery will be used to explore therapies that might control the hyperactive immune system in lupus. “These CD8+ T suppressor cells represent a potential new lever for lowering the strength of the immune response in autoimmune diseases such as lupus,” Dr. Cantor said.
Staying Open to Discovery
Until now, scientists searching for cells involved in quieting the immune system response had focused their hunt on “regulatory CD4+ T cells” – also known as CD4+ Treg. Some of these cells have been shown to prevent harmful inflammatory diseases and infections.
In the Nature study, Harvey Cantor, MD, and his team reported that not just CD4+T cells but CD8+ T cells as well include a subset that helps dampen the immune response. Instead of reducing inflammation like their CD4 cousins, the CD8+ T regulatory cells ensure that the immune system doesn’t produce antibodies that attack normal cells.
“Our LRI funds allowed us to carry out the early experiments that led to the definition of the CD8 suppressor cells.” – Dr. Cantor.
“We were testing osteopontin’s activity against a population of cells known as follicular T helper cells,” explained Dr. Cantor. “We noted that the cells were responsive to osteopontin but also that they expressed what we knew to be the target of suppressor CD8+ T cells.”
As next steps, Dr. Cantor and his team will investigate whether defective CD8+ T suppressor cells actually could be a cause of lupus and might serve as a powerful drug target for quieting the immune system response in autoimmunity.
Systemic lupus erythematosis is a chronic complex and potentially fatal autoimmune disease that affects more than 1.5-million Americans, mostly young women in their child-bearing years. Lupus causes the immune system to become hyperactive, forming antibodies that attack and damage the body’s own tissues and vital organs including the heart, brain, kidneys and lungs. Lupus is a leading cause of cardiovascular disease, kidney disease and stroke among young women. As yet, there is no known cause or cure but the progress of recent discoveries is highly promising.
This information is from the Lupus Cleveland Website. It shows the types of things used to treat Lupus and all the different manifestations of the disease. It is well written and easy to read. If you would like to understand Lupus better, this is a good article to read. Enjoy!
Currently, there is no cure for lupus; however, early diagnosis and proper medical treatment can significantly help to control the disease. Symptoms often vary from one individual to another and treatment is based on specific indications in each person. Still, a few general guidelines can be listed:
- Regular rest is important when the disease is active. When the disease is in remission, increased physical activity is encouraged to increase joint flexibility and muscle strength.
- For the individual who is photosensitive, the regular use of sunscreens will help prevent rashes and irritations. For those who develop rashes, treatment with cortisone creams is very helpful.
- Achy joints (arthralgia) and arthritis generally respond to aspirin or aspirin-like drugs (non-steroidal anti-inflammatory drugs).
- The anti-malarial drug hydroxcholorquin (Plaquenil) is often prescribed for more severe joint or skin involvement.
- Cortisone drugs (the most commonly prescribed is Prednisone) are often used for more severe organ involvement. Not everyone with SLE needs cortisone. Cortisone, particularly in higher doses, has possible hazardous side effects.
- If you have a fever (over 100 degrees F), call your doctor.
- Go to your doctor for regular checkups. Regular checkups usually include blood and urine tests.
- When in doubt, ask. Call a doctor.
Treatment plans should meet the individual patient’s needs and may change over time. To develop a treatment plan, the doctor tries to:
- Prevent flares
- Treat flares when they do occur
- Minimize complications
The doctor and patient should reevaluate the plan regularly to ensure that it is as effective as possible.
Several types of drugs are used to treat lupus. For people with joint pain, fever, and swelling, drugs that decrease inflammation, referred to as nonsteroidal anti-inflammatory drugs, or NSAIDs, are often used.
While some NSAIDs are available over the counter, a doctor’s prescription is necessary for others.
Common side effects of NSAIDs include stomach upset, heartburn, diarrhea, and fluid retention.
Some lupus patients also develop liver and kidney inflammation while taking NSAIDs. It is especially important to stay in close contact with the doctor while taking NSAIDs.
Antimalarials are another type of drug commonly used to treat lupus. These drugs were originally used to treat malaria, but they are also useful in treating lupus.
Antimalarials may be used alone or in combination with other drugs to treat fatigue, joint pain, skin rashes, and inflammation of the lungs. Continuous treatment with anti-malarials may prevent flares from recurring.
Side effects of antimalarials may include stomach upset and, very rarely, damage to the retina of the eye.
The most common treatment for lupus is corticoid steroid hormones. Corticoid steroids are related to cortisol, a natural anti-inflammatory hormone. They hold back inflammation very quickly.
Corticoid steroids can be given orally, in creams applied to the skin, or by injection. Since they are potent drugs, the doctor will use the lowest dose with the greatest benefit.
Short-term side effects of corticoid steroids include swelling, increased appetite, weight gain, and emotional ups and downs. These side effects usually stop when the drug is stopped.
It can be dangerous to stop taking corticoid steroids suddenly, so it is very important that a doctor recommend changes for the corticoid steroid dose.
Sometimes doctors give very large amounts of corticoid steroid for a short time by vein. With this treatment, typical side effects are less likely and slow withdrawal is not necessary.
Long-term side effects of corticoid steroids can include stretch marks, excessive hair growth, weakened or damaged bones, high blood pressure, damage to the arteries, high blood sugar, infections, and cataracts.
Typically, the higher the dose of corticoid steroids, the more severe the side effects are. The longer corticoid steroids are taken, the greater the risk of side effects becomes.
People with lupus who use corticoid steroids should talk to their doctors about taking supplemental calcium and Vitamin D. These supplements reduce the risk of fragile bones called osteoporosis.
For patients whose kidneys or central nervous systems are affected by lupus, a type of drug called an immunosuppressive may be used. Immunosuppressive hold the immune system back by blocking the production of some immune cells.
Immunosuppressive may be given orally or by IV.
Side effects of immunosuppressive may include nausea, vomiting, hair loss, bladder problems, decreased fertility, and increased risk of cancer and infection. The longer the treatment with immunosuppressive, the higher the risk of side effects becomes.
Since some treatments may cause harmful side effects, it is important to tell the doctor about any side effects right away. It is also important NOT to stop or change treatment without asking the doctor first.
Lupus is hard to diagnose, but in this article, you can find the information that helps doctors to give a definitive diagnosis.
How is Lupus Diagnosed
In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from foreign invaders. When you have lupus, your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues, so autoantibodies (auto means self and anti means against: “against self”) are made that damage and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
What Is My Doctor Looking For?
A doctor who is considering the possibility of lupus will look for signs of inflammation. The signs of inflammation are pain, heat, redness, swelling, and loss of function at a particular place in the body. Inflammation can occur on the inside of your body (your kidneys or heart, for example), on the outside (your skin), or both.
However, there are many challenges in confirming that a person has lupus and not some other disease. Lupus is known as “the great imitator,” because its symptoms mimic many other illnesses. Also, lupus symptoms can be unclear, can come and go, and can change. Therefore, a lupus diagnosis is made by a careful review of:
- your current symptoms
- your laboratory test results
- your medical history
- the medical history of your close family members (grandparents, parents, brothers and sisters, aunts, uncles, cousins)
All of this information may be necessary for a doctor to make a diagnosis of lupus because, for a number of reasons, laboratory tests alone cannot give a definite “yes” or “no” answer.
- No single laboratory test can determine whether a person has lupus.
- Test results that suggest lupus can be due to other illnesses, or can even be seen in healthy people.
- A test result may be positive one time and negative another time.
- Different laboratories may produce different test results.
Frequently Asked Questions
Is there a test for systemic lupus?
There is not a single diagnostic test for systemic lupus. A variety of laboratory tests are used to detect physical changes or conditions in your body that can occur with lupus. Each test result adds more information to the picture your doctor is forming of your illness.
What kind of doctor can diagnose systemic lupus?
If multiple criteria are present simultaneously, the diagnosis may be made by any physician (Family Practitioner, Internist, or Pediatrician). If however, as is often the case, symptoms develop gradually over time, the diagnosis may not be as obvious and consultation with a rheumatologist may be needed.
Where is the BEST place to go for diagnosis and treatment of lupus?
There is no one single recognized center of excellence for the treatment and diagnosis of lupus in the United States today. The Lupus Foundation of America has no mechanism by which it can rate either hospitals or physicians. The general recommendation is to find a physician that is affiliated with a medical school — a university hospital for example. These health care institutions may have faculty on staff who are involved in lupus research, and are generally the most up-to-date on the latest advances in diagnosis and treatment of lupus. These are generally regarded as very good places to go for the diagnosis and treatment of lupus. Certainly the health care institutions with established reputations fit this description.