Wednesday, January 18, 2012

Lupus and brain issues

There are many different ways in which lupus can affect the brain.  Most people with lupus have brain fog this is when one cannot think clearly, for example, when you cannot recall someone's name, or the street that you live on.  Many people suffer from headaches, some of the headaches are caused by lupus and others are due to other things such as sinus problems or tension. There can also be serious brain involvement in lupus called CNS (central nervous system) lupus which is treated aggressively.  When one has SLE lupus, they should always be evaluated by a physician when having any brain involvement symptoms which include, headaches, dizziness, depression, confusion, seizures, memory loss, behavior changes,paranoia, movement problems (tremors), or having trouble using arms and or legs.  Always refer to a physician when having any new or troubling symptoms.
Doctors throughout the world are now recognising the importance of subtle forms of brain involvement in lupus as well as the more obvious brain problems. Never underestimate brain involvement. It may vary from mild depression, to memory loss, to much more severe problems such as seizures. In general there are two main causes of brain disease in lupus. The first is lupus disease itself which can cause alterations in the brain activity. The second is the clotting disorder associated with some lupus patients, the antiphospholipid or Hughes syndrome. It is very, very important for the doctor to try to distinguish between these two major causes of neurologic involvement as the treatments are clearly very different.
Depression is an important manifestation of lupus - in some it is the presenting sign of the disease. Many patients and, certainly, many doctors wrongly attribute depression in lupus merely to having a chronic illness and all that goes with it. This is not correct. The disease itself causes depression. Depression is an integral part of lupus in some patients - indeed management of the lupus often itself lifts the depression. The management of depression in lupus rests on a combination of treating the underlying lupus itself as well as possibly adding in antidepressant therapy. One of the medical advances in the last decade has been the introduction of newer milder antidepressants with less of the severe side-effects which so hampered older treatments.
Headaches are common in lupus. In some patients a history of headache going back to their early teens is a feature of the disease. They may be a part of the lupus itself or may be associated with a clotting syndrome. They may or may not have a migrainous element with flashing lights and visual disturbances. In any patient with lupus who suffers from headaches a systematic search for known causes should be carried out including blood pressure checking, examination of the sinuses, examination of the blood for 'sticky blood' and ultimately, if indicated, a brain scan (either an NM scan or a CT scan).
Sometimes lupus first starts in the most dramatic way with a seizure or a series of epileptic fits. This is usually when the patient is untreated and the disease fairly active. It is sometimes associated with high fever. Fits or seizures are one of the non-specific ways the brain reacts to severe illness. Once the lupus is treated further fits are the exception rather than the rule.
Movement disorders
The same applies to movement disorders. Occasionally patients develop chorea (St Vitus Dance) with jerky hand movements or head movements. This is simply a manifestation of abnormal brain function and, once again, is often associated with the 'sticky blood' (Hughes) syndrome.
Spinal chord
Rare, but extremely acute and very dangerous, is spinal cord involvement, which may lead to permanent paralysis. It is now recognised that immediate treatment with both steroids and possibly anticoagulants may reverse this. Fortunately it is a very rare manifestation of neurologic lupus.
Psychiatric disturbance
During severe lupus flares patients can experience a variety of psychiatric disorders varying from mild personality disorders to severe psychotic behaviour. Some lupus patients are wrongly diagnosed as having schizophrenia at the onset of their illness. Interestingly, treatment of the lupus in these patients results in total improvement in the psychiatric features. This is one of the most important observations to come out of lupus research as it provides possible insights into other mental disease. Patients with the antiphospholipid (sticky blood) syndrome suffer memory variants, from subtle ('I couldn't remember what I had gone into the shop for') to severe memory loss. Lupus doctors are now beginning to realise how common and important this aspect of the disease is. Clearly, any patient who feels that this is a major feature of the disease requires full neurologic examination, possibly including MRI, as well as testing for the antiphospholipid syndrome.
Firstly, it is important to realise that brain involvement in lupus is extremely common. Secondly, in the vast majority of patients there is complete resolution of the problem with time and most patients get better. If the brain symptoms start dramatically, for example with fits or severe neuropsychiatric disease, the treatment, as with most active forms of lupus, is with steroids and immunosuppressive drugs. The doses of steroids used are less than in the old days - for example 60mg daily in the majority of the worst cases - rarely is a higher dose than this required. An alternative way of giving steroids is by 'pulse' injections on an intermittent basis. This is becoming more popular as it is a simple and more rapidly effective way of giving steroids, especially in an emergency.
A separate form of brain involvement in lupus is associated with Hughes syndrome (the antiphospholipid syndrome). In this form of the disease the cause is totally different: blood clots or 'sticky blood'. In patients where this is suspected, brain scans are usually required. These may show localised areas where brain blood supply has not been adequate. The treatment in these patients is different and requires thinning of the blood, either with aspirin or, in more severe cases, with anticoagulants such as warfarin (coumadin).
For less dramatic brain involvement the choice of treatment in many ways is more difficult. Many, many patients are not treated who perhaps should be treated. In some patients the depression is a major problem and requires conventional antidepressive treatment. The more modern pills for depression are very superior to older medications and cause far less side-effects. The opinion of a psychiatrist or psychologist may need to be sought as to whether medical treatment is appropriate, especially where there might be dangers of drugs interacting.
In summary, the vast majority of patients who have brain involvement can be treated successfully with a full return to normal daily activities.


    Nervous System

    Cognitive Dysfunction

    At some point during the course of their lupus, up to 50 percent of lupus patients describe feelings of

    • confusion,
    • fatigue,
    • memory impairment, and
    • difficulty expressing their thoughts.
    This collection of symptoms is called cognitive dysfunction and is found in people with mild to moderately active SLE. These symptoms may be clearly documented by neuropsychological testing, and a newer neurodiagnostic test called the single positron emission computed tomography (SPECT) scan shows reproducible blood flow abnormalities.
    The reasons for these symptoms are not known. It may have something to do with changes in how a group of chemicals known as cytokines are handled or may be related to certain parts of the brain not getting enough oxygen.
    Other tests including:
    • Spinal taps,
    • brain wave tests (EEG),
    • magnetic resonance imaging (MRI) or
    • computerized tomography (CT) scans of the brain may all be normal.
    Cognitive dysfunction may come and go on its own, so the management of cognitive dysfunction is often frustrating and currently no optimal therapy is available.
    • Antimalarials and/or steroids may be useful.
    • Counseling, cognitive behavioral therapy and other interventions that assist a person in developing coping skills may be helpful.
    Lupus Headache
    People with lupus experience headaches which are unrelated to their lupus, i.e., sinus headache, tension headache and bone spurs from osteoarthritis. Approximately 20 percent of patients with SLE experience severe headaches which are related to the disease and known as lupus headache.
    • The lupus headache phenomenon is similar to migraine and may be seen more often in people who also have Raynaud's phenomenon.
    • SPECT scans indicate abnormalities in blood vessel tone or the ability of a vessel to dilate or constrict.
    • Lupus headache is treated like tension headaches or migraine, although corticosteroids are occasionally useful.

    Nervous System

    Lupus can affect both the central nervous system (the brain and spinal cord) and the peripheral nervous system. Lupus may attack the nervous system via antibodies that bind to nerve cells or the blood vessels that feed them, or by interrupting the blood flow to nerves.

    Cognitive Dysfunction

    The most common manifestation of neuro-lupus is cognitive dysfunction, which is characterized by clouded thinking, confusion, and impaired memory. Eighty percent of lupus patients who have had lupus for ten years or more will experience this condition. Single positron emission computed tomography (SPECT) scans of SLE patients with cognitive dysfunction show abnormalities in blood flow, indicating that the condition may be the result of decreased oxygen delivery to certain parts of the brain. Unfortunately, there is no real treatment for cognitive dysfunction. Normally, it does not get worse over time. However, some people find that counseling and other forms of cognitive therapy help them to cope with associated symptoms.


    About 20% of patients with lupus have migraine-like headaches. These headaches are different from “lupus headaches,” which are due to active lupus and require a lumbar puncture (spinal tap) or blood vessel study (MRA or CT-angiogram) for diagnosis. A true lupus headache usually requires corticosteroids for treatment. Non-lupus migraine headaches should be treated with a migraine prevention diet. [A copy of this diet can be found in the article “Migraine Prevention Diet” under this heading.] However, when diet alone becomes insufficient, medications such as nortriptyline can be used to reduce headache frequency and severity.


    Fibromyalgia is a chronic pain sensitization disorder characterized by widespread tenderness, general fatigue, and non-restful sleep. Doctors do not currently know the cause of fibromyalgia, but it is believed to result from a rewiring of pain pathways that lead to the spinal cord and brain. As a result, the central nervous system experiences an increased sensitivity to pain signals. Many people with lupus have fibromyalgia; in fact, much of the pain that people with lupus feel is due to this condition. To check for fibromyalgia, your doctor may touch several points on the muscles of your body. People with fibromyalgia often feel pain when light pressure is applied to these areas, whereas people without the condition feel little discomfort.
    Three drugs are currently approved by the FDA for the treatment of fibromyalgia: pregabalin (Lyrica), duloxetine (Cymbalta), and milnacipran HCl (Savella). While these drugs can help to reduce discomfort by about 25%, there are many things that you can do on your own to help ease and manage the symptoms of fibromyalgia. Some people believe that limiting their daily activities helps to reduce pain and fatigue. In fact, doctors recommend that people with fibromyalgia continue to engage in regular daily activities. Scheduling short daily rest times may help you to keep a normal schedule. However, spending too many hours resting may make your symptoms worse.
    In addition, since responses to stress can cause physical symptoms such as headache, increased pain, and muscle tension, try to practice stress management skills. There are some stressors that you can control, and there are some that are simply out of your hands. Focus on what you can control, and direct your energy toward future growth.
    Try to practice a healthy lifestyle. Research has shown that light stretching activities such as Tai Chi and yoga can help to relax muscles and improve some of the pain associated with fibromyalgia. In addition, molecules called endorphins that are released by your brain after exercise—usually about 30 minutes of moderate or intense activity—help you to achieve a ‘natural high,’ and many people report that exercise simply makes them feel better overall. Other lifestyle elements, such as a supportive social network and a healthy diet, can also help to ease feelings of emotional and physical discomfort and promote an overall sense of well-being. If you feel you need more help in managing your fibromyalgia, your doctor can assist you in devising coping strategies.

    Organic Brain Syndrome

    Organic brain syndrome is a general term referring to physical disorders that cause impaired brain function. Other names are cerebritis, encephalopathy, and acute confusional state. This condition is usually diagnosed through lumbar puncture (spinal tap) or EEG (the recording of brain waves), and before the diagnosis is made, the doctor will likely rule out certain causes, such as drug use, infection, cancer, or metabolic problems. If the condition is confirmed to be caused by lupus, high dose steroids will be used to combat its effects.

    CNS Vasculitis

    CNS vasculitis is a very rare SLE complication caused by inflammation of the blood vessels of the brain. It is diagnosed by a blood vessel study (brain MRA or CT-angiogram) and requires treatment with high dose steroids.


    • Wallace, Daniel J. “Heady Connections: The Nervous System and Behavioral Changes.” The Lupus Book: A Guide for Patients and Their Families. 1st ed. New York: Oxford University Press, 1995. 99-115.
    • “How Lupus Affects the Body: Nervous System.” Lupus Foundation of America. 1 July 2009. <>.

    Lupus Headaches

    Symptoms such as fatigue, joint pain, nausea, etc. are being caused by the Lupus, other minor medical conditions (i.e. a virus), or even medicine side effects.  Headaches are certainly no exception.  Many of the medicines used to treat Lupus list headache as a common side effect.  Some of these are NSAIDs, Plaquenil, prednisone, CellCept, and Methotrexate.  People with Lupus, just like the general population, can get sinus headaches, tension headaches, and migraines unrelated to their Lupus.  Evaluation by your doctor is suggested for anyone who has regular headaches or headaches that interfere with your normal daily activities.What is a Lupus Headache?
    A Lupus headache is very similar in characteristics to a migraine.  Those with Antiphospholipid Syndrome or Raynaud's Phenomenon may be more likely to get these headaches.
    Symptoms can vary greatly but some of the more common ones include moderate to severe pain lasting several hours to several days, nausea, vomiting, sensitivity to light, sensitivity to sound, sensitivity to smell, throbbing or pulsing pain, pain on one side of the head at a time, and pain that gets worse with movement.
    Lupus headaches are thought to be caused by an abnormality in the way the blood vessels constrict.  They can also be caused by vasculitis
    These headaches are treated in the same manner as typical migraines with the exception that corticosteroids are sometimes helpful distinguishing it from other migraines.  Typical migraine treatments vary depending on the severity and frequency of the headaches. 
    Abortive therapy is used to get rid of a migraine after it has started.  Medications such as Imitrex, and Axert.  Narcotic pain relievers such as Hydrocodone can also be used but are not as specific and can be habit forming. 
    Preventative treatment is used for patients that get migraines more often.  These are medications taken every day with the hopes of preventing migraines from ever coming on.  Some Antihypertensives such as Inderal and Covera are sometimes used for preventative treatment.  Some Antiseizure medications such as Topamax, Neurontin and Depakote are also used for this purpose.  Some Antidepressants such as Elavil and Pamelor may be used as well.

    How to Treat a Lupus Headache

    How to Treat a Lupus Headachethumbnail
    Treat a Lupus Headache

    Many lupus patients suffer from headaches on a daily basis. These headaches are thought to be caused by abnormalities in the blood vessels that prevent the brain from receiving a continuous flow of blood. The symptoms and severity of a lupus headache can vary from patient to patient, but many people experience pulsing pain that increases with movement, severe pain that can linger for several days, and for some patients nausea and vomiting are a common complaint. Diagnosing and treating a lupus headache requires a visit to the patients doctor or rheumatologist so a plan can be discussed and implemented based on the severity of the patient's disease.

    Things You'll Need

    • Over-the counter anti-inflammatory drugs
    • Antimalarial medications
    • Corticosteroid hormones
    • Regular dental and eye examinations
    • Exercise
    • Diet supplements
    • Mediation
    • Special diet
    • Get plenty of rest
      • 1
        Ask your doctor about taking non-steroidal anti-inflammatory drugs. Many of these drugs, such as Ibuprofen are available over the counter. Although these drugs are readily available without a prescription, lupus patients should only take NSAIDs while under a doctor's care.
      • 2
        Talk to your physician about antimalarial medications like Plaquenil. Originally used to treat malaria, these drugs have been found effective in the treatment of lupus headaches, as well as other lupus symptoms.
      • 3
        Treat your lupus headache by taking corticosteroid hormones like prednisone. These drugs work quickly to suppress inflammation in the body, which is a leading cause of headaches in lupus patients. Corticosteroids are normally taken by mouth, but can also be prescribed as creams that you apply to the skin, or in some cases, by injection.
      • 4
        Practice preventive health care. Lupus patients need to be diligent when it comes to dental care and eye exams. Many patients with lupus are prone to developing mouth infections and ulcers in the mouth, nose and throat which can lead to a lupus headache. Antimalarial and corticosteroids can cause eye problems in lupus patients that if left untreated can lead to headaches.
      • 5
        Try alternatives to staying healthy. Keeping the mind and spirit healthy is as important as keeping the body healthy. Many people with lupus find that alternative therapies such as exercise, diet supplements, meditation, special diets and maintaining a strong support system help to alleviate lupus headaches.
      • 6
        Conserve energy by setting limits on how you spend your time. Fatigue is a common complaint for the majority of lupus patients. Listening to your body's signals by resting or taking short naps during the day can help reduce the occurrence of lupus headaches.

    kim nault - lupus brain fog - the lupus magazine

    Cognitively Lupus
    Understanding the Unseen Realm of Lupus Brain Fog
    by Kim Nault ©

    First published in
    The Lupus Magazine

    An estimated 70-90 % of SLE patients will experience the infamous lupus brain fog. This is the most common form of central nervous system involvement in SLE and can be mild to severe, and vary from person to person. The lupus brain fog is classified as a manifestation of organic brain disease and is of one of the 19 manifestations of NP-SLE/neuropsychiatric SLE that has a broad spectrum of manifestations, including psychiatric disorders and neurological syndromes of the central, peripheral, and autonomic nervous systems. Each manifestation is vast and complicating and far outside the scope of this sole article.

    Sadly, the actual field of NP-SLE is still in its infancy, there is not much research done on this vast topic and not too many doctors fully understand this form of organ involvement. Many assume that the brain fog of lupus is just some quirky annoying problem, that it is not that bad, not that serious of a problem. For more than half the patients with brain fog it will be a quirky, sometimes an annoying and even at other times a comical issue, but for others it will be very disabling. In addition, lupus brain fog notably fluctuates with and without disease activity.

    I have heard many heart-wrenching stories, of patients whose very own doctors have ignored or even minimized their conditions and complaints as mere irritants. Some medical practitioners do not regard the lupus brain fog as a disabling issue that reduces their patient’s quality of life. This is unacceptable. Lastly, if such large amounts of lupus patients are living and battling with the lingering consequences of brain fog, than why isn’t someone in the research field really pounding the scientific pavement for us to pinpoint the exact cause of this and yield our patient population better treatments? We deserve better diagnostic tools and therapies in our lives while we try to climb out of the trenches of the cognitively challenged.

    There are also a high number of lupus patients with the secondary Antiphospholipid Antibody Syndrome/APS/Hughes Syndrome as well as those with concurrent fibromyalgia, both who seem to encounter more obvious signs of the insidious brain fog. There are many running jokes among patients regarding the effects of the brain fog monster in their lives. While we have to admit that some of the brain fog incidents are indeed hilarious and even downright entertaining to our loved ones there yet remains the silent population within the brain fog group who are overwhelmed with the mental and emotional impairments brought on by NP-SLE.

    The lupus brain fog can cause:

    • Cognitive Dysfunction (impaired abstract, concentration & reasoning skills)

    • Short-term Memory Loss
    • Verbal Fluency Dysfunction (difficulty finding words)
    • Confusion
    • Impaired Recall
    • Depression
    • Anxiety

    Patients struggle with the cognitive impairments and the ripple effects that it has on their lives. To some patients it is embarrassing, frustrating and certainly regarded as incapacitating. I recall a forum discussion where Angie Phillips (NP-SLE/APS patient-advocate, founder/ creator of Ardent Cerebrations: Musings of Lupus Survivors!), earnestly explained that for her, the disabling effects of NP-SLE have been far more devastating than that of the pain caused by SLE. That she has incurred more disability from the cognitive issues relating to CNS lupus, that she would gladly take the pain and have her mental faculties restored to the way they used to be. I too, have described to my loved ones that I have teetered on near organ failure and have accumulated physical impairments, but not to have the consistency of my cognitive sharpness and verbal fluency has rendered me more defeated than anything else I have ever faced.

    A few months ago, while at my primary doctor’s office we were discussing organic brain disease and she explained that neurologists had discovered that commencing to treat stroke patients with SSRI (selective serotonin reuptake inhibitors) antidepressants immediately following stroke promoted faster neuron repair and recovery from their strokes. She surmised that if antidepressants use was benefiting recovering stroke victims than people with organic brain diseases will also benefit from using them. Before you scoff at the idea of swallowing yet another pill, you might consider having a frank discussion with your doctor about whether you may or may not benefit from taking an antidepressant.

    If you have a health insurance coverage that will cover neuropsychological testing, you may consider having that done. Once the tests are completed, the psychologist will make recommendations of activities that you can do to exercise areas of your brain that are affected by the brain fog. I know some patients who do brain games to exercise their minds and keep themselves as sharp as possible. There are very good games on the internet developed by neurologists and neuropsychologists, and a small amount of time surfing the Web may provide you with a good site to frequent. Do understand that lupus brain fog will wax and wane, some days will be better than others will. Do not be hard on yourself!

    Coping and Strategizing – Lupie Cognitive Survival Tips:

    • Do not multi-task (it can prove dangerous)

    • Do not overbook your daily schedule
    • Do not over commit yourself
    • Prioritize appointments/events/activities (don’t double book things on the same day)
    • Determine your peak energy time of the day (schedule needs around that time)
    • Reduce background noises when needing to focus
    • Use only one calendar (mark doctor’s appointments in one color)
    • Set timers for reminders (cellular phones and your PC have different applications)
    • Note pads (one for pocketbook, one for computer desk and one for kitchen countertop)
    • Keep things simple
    • Learn to say “no” (we do not have to commit to every event or activity)

    Do not be hard on yourself! Explain to your loved ones about your frustrations and concerns with how lupus is affecting your cognitive abilities. Some of our loved ones may even have simple suggestions to simplify things in our lives, which may foster better memory and peace of mind. Please do not try to tough things out on your own; this will not produce great results. Be willing to ask others for assistance with things. If you are a type-A control freak of a Lupie, try the Zen Lupie practice of not being a control freak! Living with a chronic illness while life whirls about us, can be at times very stressful. How often do I forget that quality of life begins right smack between my very own ears? As in life, some days will be easier than others will and when we lose our way, another veteran patient stands ready to hand feed us morsels that will lead us out of darkness and place us back on the path of inner strength and hope.

    *The best resource in your healthcare is your own doctor. The Lupus Magazine does not endorse or recommend any medication or drug company. This article is informational only and should not replace the medical care of your doctor.

    Dear LCNY,
    Are there any tricks for dealing with "brain fog?"
    LCNY Says:
    The term "brain fog" describes those times when you can't think clearly or don't even know where you are or what you are doing. It's a common problem for people with lupus, but there are tricks called memory aids that can keep you on task. You can probably come up with your own ways in addition to the following examples:

    • Label drawers, cabinets and closets around your house to make it easier to find things once you've put them away.
    • Place post-it-notes with reminders in places you'll be sure to see them, such as by your door and in your car.
    • Organize and simplify your home and workspace and keep a schedule of events and appointments nearby.
    • Set your watch's alarm clock for when you need to take your medications.
    • Leave reminder messages for yourself on your cell phone's voice recorder or home answering machine.
    • Finally, when you feel brain fog coming on, try to take deep breaths and relax—knowing that it has come and gone many times before.

    How Does Lupus Cause Stroke?

    Because lupus affects multiple organs in the body, it has the potential to induce stroke in several important ways:
    • By triggering the 

    • formation of 

    • blood clots: 
    • One of the many abnormal antibodies produced by the immune system of lupus patients is theantiphospholipid antibody. This antibody is known to attack the membranes of cells that line the inside of blood vessels. The attack causes a "biological cascade" which initiates the formation of blood clots. This can happen in different parts of the body, including the deep veins of the legs, the chambers of the heart, and the large veins of the head. In some cases, these blood clots have the potential to travel to the brain and cause embolic strokes.
      Other antibodies seen in lupus which have been associated with the abnormal formation of blood clots include lupus anticoagulant and anticardiolipin antibodies.
    • By inducing the formation of small deposits of immune products inside the heart: A collection of immune deposits can be found inside the hearts of a fraction of lupus patients. These immune deposits can be thought of as small pellets of antibodies, and immune cells mixed with minerals, proteins and other products of the immune system. The immune system is reacting against the body’s own tissues. This condition, referred to as Liebman Sacks endocarditis, can cause strokes when these small pellets travel from the heart to the brain.
    • By causing inflammation inside the walls of blood vessels: This condition, known as vasculitis, can be seen in many patients with lupus. At times, the inflammation in the blood vessels is so severe that blood flow through the inflamed vessel is completely prevented. This is particularly dangerous when it happens to the blood vessels in the brain as it can lead to stroke.
    Y Kitagawa, F Gotoh, A Koto and H Okayasu; Stroke in systemic lupus erythematosus Stroke1990;21;1533-1539
    Katrin L. Conen, Christina Jeanneret, Burkhard Hecker, Gieri Cathomas, Barbara C. Biedermann Acute occlusive large vessel disease leading to fatal stroke in a patient with systemic lupus erythematosus: Arteritis or atherosclerosis? Arthritis & Rheumatism 2006, Volume 54, 908-913
    Kushner M, Simonian N; Lupus anticoagulants, anticardiolipin antibodies, and cerebral ischemia.Stroke1989;20: 225-229


  1. Thank you so much for writing this blog and providing those of us with the information we need so we can stop feeling like everything we feel in all in our heads. I am considering filing for SS Disability because of my cognitive issues. My job requires multi-tasking and the ability to focus even with all of of the noise around us all day. You have given me the means to decide to take that step. Thank you, Thank you, Thank you.
    Patti Pacer

  2. Patti, Thank you for taking the time to read my blog and comment, I am happy that you got some helpful information. Good luck with your SS disability. Keep me posted on how it goes. You can also find my lupus facebook page for up to date lupus research and info at Best wishes and gentle hugs!xo

  3. Thank you so much for this post. with your permission, i would like to print it out to help explain to others that I'm not nuts, just having a bad day/week/month, and it will improve (need that reminder myself since i am a extreme type A personality :)

  4. Please share any of my posts on here that is why I write them! Thank you for taking the time to read and comment on my blog. I am supposed to get an e-mail update every time someone posts on my blog but it hasn't been doing that so I am happy I found this. xo

  5. I am so glad that I have found your blog. I have learned soo much from it in a very short time. I don't have a definitive diagnosis yet, but everyone agrees it sure looks and acts like kidneys are involved as well. I am only 46 but I feel like I am 100..very little energy these days and soooo much pain.

    1. Hello missblondi, I am happy you have learned a lot! I am sorry that you may have lupus and your kidneys are involved. The only positive thing I can say about this disease is that I have met some amazing people that have lupus as well. Best wishes and gentle hugs. xo

  6. Thank you for your informative Blog. I have had Lupus for 5 years now and it is the first time I have been able to read everything in a condensed snapshot of all the different ways Lupus can affect the body. I live in Australia and very little is known about the disease here. For me the worst part is the brain involvement. I have periods of deep depression and then can wake one day and feel completely ok! These coincide with my flare ups so I have learnt not to take myself too seriously when these happen. I strongly believe stress plays a big role in the initial days of when that switch has been flipped and would be interested to hear from other people if this has had an impact on their symptoms as well. Good wishes to you all. Rebecca xxxxoooo

    1. Thank you Rebecca for taking the time to read and comment on my blog. Gentle hugs. xo

  7. I just do not know what to do; I have had Lupus for many years and in the past year had two sinus surgeries, and have been on antibiotics and steroids the past 7 months. My headaches are worse and recently my neck and back have been hurting. Meningitis was ruled out with test, but I continue to have a lot of pain with heavy mucus and blood clots, I can not concentrate so I had to drop out of law school and really want to return in January, my life is being consumed by this horrible dilemma. I pray someone can help me find resolution.

    1. Sabrina, I am so sorry for all the issues you are having. If you go to my Mrs. Lupus facebook page I will post your question for others to help. Here is a link to my page:

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  9. I have SLE, CNS,fibromyalgia, and sjogrens syndrome. My diagnosis was in 1998 and after sixteen years of many unusual and scary symptoms and episodes I am finally growing comfortable with understanding and managing my illnesses. Sadly, most of my family still shrugs it off as easily as if I were suffering from a mild cold. They refuse to understand how important it is to get adequate rest and avoid changing up my daily routine. I recently babysat my niece and nephew (ages 2 and 6) while their parents were out of town for four days. This meant getting up at 6:30 (I usually sleep until at least 10:00 am), dressing and feeding two kids, driving the 6 year old to school, picking up at 2:00, (this includes lifting the 35 lb. two year old in and out of the car seat each time) preparing meals, giving baths, taking the six year old to his ballgames and having to try and be alert and responsible for other humans than just myself. I love both of them dearly and love spending time with them. However, after the four day ordeal I have suddenly come down with a major case of strep throat, walking pneumonia and infection of the lymph nodes. I believe it is a direct result of the schedule change and the added physical and mental responsibility of those four days. To my family that is a joking matter. I am very predisposed to a herpes outbreak (severe canker sore on my lip and lymph node infection) if I over exert myself. Please tell me if I am over reacting by thinking that this was prompted by the added activity of those four days. My family has got me thinking that I am just being dramatic and looking for reasons to not have to do this in the future. I did the same thing last May for my brother. The two year old was just a baby. I did not try to get the kids to school and ballgames and we just hung out at the house while the parents were gone. Afterwards I did fine and did not have any flare ups. I would love your opinion on this.

    Thanks, Dana
    AKA: killing myself with kindness

  10. Nice blog..! I really loved reading through this article. Thanks for sharing such a amazing post with us and keep blogging...
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