Lupus - the wolf in sheep's clothing
"The wolf" is sneaky. It's tricky. It hides. It pretends. It's ferocious. It kills.
Lupus, "the wolf", is a disease often resulting in Migraine and other headache disorders.
When living my early years in Oregon, spending time in the wilderness, I happened upon wolves in the wild. I've looked at them in curiosity and excitement, but never fright. For the most part, wolves would prefer not to be around people... not to be observed. I never looked at a wolf as something to be afraid of. Perhaps that's why, when told I had Lupus years ago - a disease aptly named with the Latin word for 'wolf' - it was with curiosity that I asked what that was going to mean for my life.
I was told the disease was named Lupus because it is like the wolf that hides in sheep's clothing, pretending to be many things, confusing the doctor until it strikes a disabling blow to its prey, the patient. When you're young you can't picture yourself chronically sick and weak, so the description was interesting to me, but I had hope that some new discovery would happen at any moment and that would be the end of my dance with the wolf called Lupus.
Decades later, here I am, running again from the wolf at my heels.
Lupus is an autoimmune disease. This means that the body's immune system has lost the ability to tell the difference between invaders such as viruses and bacteria, and mistakenly begins to target and destroy the cells of normal body tissues. There are different kinds of lupus - Discoid Lupus which primarily affects the skin, Drug Induced Lupus in which a medication causes the condition that is reversed when you stop the medicine, and Systemic Lupus Erythemetosis (SLE) in which the entire body is being affected. My form is SLE.
Researchers are not yet sure why autoimmunity happens, but it is considered to be at least partly genetic in origin. You cannot "catch" lupus from someone. There is nothing a person can do or not do, to get SLE.
In Lupus, the cells that act like the generals of the war against harmful invaders are called regulatory T cells. Their job is to give careful instruction to the cells involved in destroying an invader. In autoimmunity, researchers have found a decline and dysfunction in these regulatory cells. The soldiers (immune system) have improper instructions, or no instructions and no one to tell them who is the enemy, so they begin destroying everything in their paths. Countless cells from all over the body become victims of 'friendly fire' resulting in pain, inflammation and damage.
Some people think of it as being allergic to yourself.
Lupus can affect any cell in the body. As a result, symptoms can affect every body system, mimicking other disorders and diseases. This confuses physicians and results in mis-diagnosis in a majority of patients. The average patient waits years while seeing an average of 4 physicians before an accurate diagnosis is given. Some of the symptoms of Lupus include:
* Blood disorders
* Cardiopulmonary disease
* Joint and muscle pain and damage
* Kidney disease
* Vasculitis (inflamed blood vessels)
* Osteoporosis
* Rashes and ulcerations
* Raynaud's phenomenon
* Fatigue
* Arthritis
* Fever
* Pleurisy
* Photo-sensitivity
* Hair loss
* Seizures
* Headache
* Movement disorders
* Depression
Lupus taunts its victim. One day you feel wonderful, the next day you are unable to climb out of bed. This makes it difficult for the friends and family of Lupus sufferers because they can't understand why you can feel good yesterday and be incapacitated the next.
Sometimes Lupus makes a retreat, hiding behind a rock in your path as he watches you go on with your life. This is called remission and it's a wonderful time when your life returns almost to normal. This is what I experienced for a short time , leading to the mistaken "un-diagnosis" of Lupus.
Lupus can jump out at any time, grabbing you by the leg, trying to pull you into the forest. This is called a flare. Flares can be triggered by everyday parts of our lives such as sunlight, the light from a fluorescent bulb, illness or pregnancy. Flares happen without triggers as well however. You never know when the wolf will jump at you.
Sometimes Lupus is not serious. People go on for years without major organ or other damage. The wolf can and does kill however, and it is often a swift and silent predator. It can take mere hours, leaving families stunned in disbelief.
Lupus is most often treated with medicines that suppress the immune system. Anti-malarials, steroids, plasmapheresis, even chemotherapy and stem cell transplantation. Most of these treatments are not specifically approved for use in Lupus patients and are called "off label". Some people do fine with treatment, and others find it is a rat race as they chase therapies that work for a time and then become ineffective. For a few, the medicines don't work at all, and for some the treatment can be more damaging than the disease itself.
Because Lupus can cause damage to all the organs and systems of the body it is listed in the differentials for many diseases, but Central Nervous System (CNS) involvement is usually considered serious and often life-threatening. CNS symptoms range from mild headache and depression, to seizures and paralysis.
Additionally, Lupus and other autoimmune diseases can trigger Migraine in individuals with the capacity for them, often putting the patient in a situation of a chronic type daily headache (often called a Lupus Headache) punctuated by frequent and severe Migraine attacks which may be refractory to treatment and prevention. The addition of Raynaud's phenomenon in many patients makes the use of DHE, Triptans and other medicines and supplements dangerous, resulting in a patient with severe and chronic pain from which he/she cannot get relief.
There are blood tests to help your doctor decide if you may have Lupus. The most widely used tests look for specific auto-antibodies (antibodies to self). The screen for autoimmunity is called an ANA and is positive for most Lupus patients. If a positive ANA is found, the next step is often an ANA profile which looks for specific antibodies. This helps the doctor to know what is happening to you, but not all Lupus patients carry identifiable antibodies, so a few can still be missed. Other tests targeted at your symptoms may help the doctor decide if you have Lupus. He may look for blood vessel abnormalities, anemia, clotting abnormalities, inflammation, liver and kidney function to name a few. A more complete listing of the testing available for Lupus can be found HERE.
Watch as doctors and patients discuss Lupus in our WEGO Health video listing.
More information can be found by visiting these links:
My Lupus blog at Ardent Cerebrations- updated research 1-22-2009!
Blog posts: Hughes Disease
American College of Rheumatology
Lupus Foundation of America
Robbins Headache Clinic
The Journal of Neurology
Annals of the Rheumatic Diseases
The Spoon Theory
Lupus, "the wolf", is a disease often resulting in Migraine and other headache disorders.
When living my early years in Oregon, spending time in the wilderness, I happened upon wolves in the wild. I've looked at them in curiosity and excitement, but never fright. For the most part, wolves would prefer not to be around people... not to be observed. I never looked at a wolf as something to be afraid of. Perhaps that's why, when told I had Lupus years ago - a disease aptly named with the Latin word for 'wolf' - it was with curiosity that I asked what that was going to mean for my life.
I was told the disease was named Lupus because it is like the wolf that hides in sheep's clothing, pretending to be many things, confusing the doctor until it strikes a disabling blow to its prey, the patient. When you're young you can't picture yourself chronically sick and weak, so the description was interesting to me, but I had hope that some new discovery would happen at any moment and that would be the end of my dance with the wolf called Lupus.
Decades later, here I am, running again from the wolf at my heels.
Lupus is an autoimmune disease. This means that the body's immune system has lost the ability to tell the difference between invaders such as viruses and bacteria, and mistakenly begins to target and destroy the cells of normal body tissues. There are different kinds of lupus - Discoid Lupus which primarily affects the skin, Drug Induced Lupus in which a medication causes the condition that is reversed when you stop the medicine, and Systemic Lupus Erythemetosis (SLE) in which the entire body is being affected. My form is SLE.
Researchers are not yet sure why autoimmunity happens, but it is considered to be at least partly genetic in origin. You cannot "catch" lupus from someone. There is nothing a person can do or not do, to get SLE.
In Lupus, the cells that act like the generals of the war against harmful invaders are called regulatory T cells. Their job is to give careful instruction to the cells involved in destroying an invader. In autoimmunity, researchers have found a decline and dysfunction in these regulatory cells. The soldiers (immune system) have improper instructions, or no instructions and no one to tell them who is the enemy, so they begin destroying everything in their paths. Countless cells from all over the body become victims of 'friendly fire' resulting in pain, inflammation and damage.
Some people think of it as being allergic to yourself.
Lupus can affect any cell in the body. As a result, symptoms can affect every body system, mimicking other disorders and diseases. This confuses physicians and results in mis-diagnosis in a majority of patients. The average patient waits years while seeing an average of 4 physicians before an accurate diagnosis is given. Some of the symptoms of Lupus include:
* Blood disorders
* Cardiopulmonary disease
* Joint and muscle pain and damage
* Kidney disease
* Vasculitis (inflamed blood vessels)
* Osteoporosis
* Rashes and ulcerations
* Raynaud's phenomenon
* Fatigue
* Arthritis
* Fever
* Pleurisy
* Photo-sensitivity
* Hair loss
* Seizures
* Headache
* Movement disorders
* Depression
Lupus taunts its victim. One day you feel wonderful, the next day you are unable to climb out of bed. This makes it difficult for the friends and family of Lupus sufferers because they can't understand why you can feel good yesterday and be incapacitated the next.
Sometimes Lupus makes a retreat, hiding behind a rock in your path as he watches you go on with your life. This is called remission and it's a wonderful time when your life returns almost to normal. This is what I experienced for a short time , leading to the mistaken "un-diagnosis" of Lupus.
Lupus can jump out at any time, grabbing you by the leg, trying to pull you into the forest. This is called a flare. Flares can be triggered by everyday parts of our lives such as sunlight, the light from a fluorescent bulb, illness or pregnancy. Flares happen without triggers as well however. You never know when the wolf will jump at you.
Sometimes Lupus is not serious. People go on for years without major organ or other damage. The wolf can and does kill however, and it is often a swift and silent predator. It can take mere hours, leaving families stunned in disbelief.
Lupus is most often treated with medicines that suppress the immune system. Anti-malarials, steroids, plasmapheresis, even chemotherapy and stem cell transplantation. Most of these treatments are not specifically approved for use in Lupus patients and are called "off label". Some people do fine with treatment, and others find it is a rat race as they chase therapies that work for a time and then become ineffective. For a few, the medicines don't work at all, and for some the treatment can be more damaging than the disease itself.
Because Lupus can cause damage to all the organs and systems of the body it is listed in the differentials for many diseases, but Central Nervous System (CNS) involvement is usually considered serious and often life-threatening. CNS symptoms range from mild headache and depression, to seizures and paralysis.
Additionally, Lupus and other autoimmune diseases can trigger Migraine in individuals with the capacity for them, often putting the patient in a situation of a chronic type daily headache (often called a Lupus Headache) punctuated by frequent and severe Migraine attacks which may be refractory to treatment and prevention. The addition of Raynaud's phenomenon in many patients makes the use of DHE, Triptans and other medicines and supplements dangerous, resulting in a patient with severe and chronic pain from which he/she cannot get relief.
There are blood tests to help your doctor decide if you may have Lupus. The most widely used tests look for specific auto-antibodies (antibodies to self). The screen for autoimmunity is called an ANA and is positive for most Lupus patients. If a positive ANA is found, the next step is often an ANA profile which looks for specific antibodies. This helps the doctor to know what is happening to you, but not all Lupus patients carry identifiable antibodies, so a few can still be missed. Other tests targeted at your symptoms may help the doctor decide if you have Lupus. He may look for blood vessel abnormalities, anemia, clotting abnormalities, inflammation, liver and kidney function to name a few. A more complete listing of the testing available for Lupus can be found HERE.
Watch as doctors and patients discuss Lupus in our WEGO Health video listing.
More information can be found by visiting these links:
My Lupus blog at Ardent Cerebrations- updated research 1-22-2009!
Blog posts: Hughes Disease
American College of Rheumatology
Lupus Foundation of America
Robbins Headache Clinic
The Journal of Neurology
Annals of the Rheumatic Diseases
The Spoon Theory
Tags: autoimmune, chronic daily headache, headache, lupus, lupus headache, migraine
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1 Comment
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Comment by Ellen S on September 18, 2008 at 8:44am -
Thanks Paula!
Like wolves, autoimmune diseases tend to run in packs. There are many different autoimmune diseases and disorders which include:
Hashimoto's (low thyroid)
Grave's disease (hypERthyroid)
Sjogren's syndrome (affects body moisture)
Scleroderma (hardening of skin and organs)
Sarcoidosis (granulomas in lungs and other tissues)
Multiple Sclerosis (assault on myelin covering nerves)
Celiac disease (gluten intolerance)
Diabetes mellitus type I (insulin dependant diabetes)
Rheumatoid Arthritis (inflammation of joints and organs)
Temporal Arteritis (vasculitis)
Pernicious Anemia (B12 deficiency)
Vitiligo (loss of pigmentation in skin)
Idiopathic Thrombocytopenic Purpura (attack on blood platelets)
Polymyositis (muscle inflammation)
Myasthenia Gravis (muscle weakness)
Interstitial Cystitis (bladder inflammation)
Guillain-Barré Syndrome (peripheral nervous system)
Believe it or not, this is only a small listing of autoimmune conditions. Wiki actually has a really nice list of the most common conditions, both suspected and accepted as autoimmune.
The tendency to develop an autoimmune condition is thought to be hereditary, but not all that carry the genetic capability will develop the disease, and not all will develop the same condition within a specific family. It might be more helpful to think of autoimmunity as the disease - the missing and malfunctioning regulatory T-cells in many cases. Risk factors are also involved, making the science of autoimmunity both variable and interesting. Interesting that is, so long as no one you know has been diagnosed with an autoimmune disease.
Once diagnosed with one autoimmune condition, the chances that you will develop other autoimmune conditions is extremely high. For example, most everyone I know with autoimmune thyroid disease has developed another autoimmune disorder such as Lupus or Sjogren's.
To answer your question, no, at this time I am the only one in my family with a Lupus diagnosis. This is one reason that most of my first generation relatives did not believe the initial Lupus diagnosis I received so many years ago. They made it very easy for me to accept the later diagnosis of "you do not have Lupus", which was a big mistake on my part. Had I kept my docs on the alert to watch for Lupus symptoms and address them, it's likely I would have gotten treatment much sooner and my life might have been much different. Many members of my family, going back several generations have had other autoimmune disease however, some extremely destructive.
Please give your aunt the link to my post, the videos and The Spoon Theory. Many people find The Spoon Theory a very helpful, hands-on way to describe their day- to- day life with Lupus and other autoimmune and invisible diseases and disorders.
I hope to be writing more about Lupus in the future, as well as an intriguing newsletter article on a common autoimmune cause of Migraine headache that, untreated, can result in stroke and death. Stay tuned!
© 2009 Created by Marie
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