I was researching autoimmune disease and found this list of many of them. It is eye opening to say the least. I was amazed how many there are. I actually have several on the list. So, in my attempt to educate others on autoimmune diseases, here is the list I found from the webpage “American Autoimmune Related Diseases Association”:
List of Autoimmune and Autoimmune-Related Diseases
- Acute Disseminated Encephalomyelitis (ADEM)
- Acute necrotizing hemorrhagic leukoencephalitis
- Addison’s disease
- Allergic asthma
- Allergic rhinitis
- Alopecia areata
- Ankylosing spondylitis
- Anti-GBM/Anti-TBM nephritis
- Antiphospholipid syndrome (APS)
- Autoimmune aplastic anemia
- Autoimmune dysautonomia
- Autoimmune hepatitis
- Autoimmune hyperlipidemia
- Autoimmune immunodeficiency
- Autoimmune inner ear disease (AIED)
- Autoimmune myocarditis
- Autoimmune pancreatitis
- Autoimmune retinopathy
- Autoimmune thrombocytopenic purpura (ATP)
- Autoimmune thyroid disease
- Axonal & neuronal neuropathies
- Balo disease
- Behcet’s disease
- Bullous pemphigoid
- Castleman disease
- Celiac sprue
- Chagas disease
- Chronic fatigue syndrome
- Chronic inflammatory demyelinating polyneuropathy (CIDP)
- Chronic recurrent multifocal ostomyelitis (CRMO)
- Churg-Strauss syndrome
- Cicatricial pemphigoid/benign mucosal pemphigoid
- Crohn’s disease
- Cogans syndrome
- Cold agglutinin disease
- Congenital heart block
- Coxsackie myocarditis
- CREST disease
- Essential mixed cryoglobulinemia
- Demyelinating neuropathies
- Dermatitis herpetiformis
- Devic’s disease (neuromyelitis optica)
- Discoid lupus
- Dressler’s syndrome
- Eosinophilic fasciitis
- Erythema nodosum
- Experimental allergic encephalomyelitis
- Evans syndrome
- Fibrosing alveolitis
- Giant cell arteritis (temporal arteritis)
- Goodpasture’s syndrome
- Graves’ disease
- Guillain-Barre syndrome
- Hashimoto’s encephalitis
- Hashimoto’s thyroiditis
- Hemolytic anemia
- Henoch-Schonlein purpura
- Herpes gestationis
- Idiopathic thrombocytopenic purpura (ITP)
- IgA nephropathy
- IgG4-related sclerosing disease
- Immunoregulatory lipoproteins
- Inclusion body myositis
- Insulin-dependent diabetes (type1)
- Interstitial cystitis
- Juvenile arthritis
- Juvenile diabetes
- Kawasaki syndrome
- Lambert-Eaton syndrome
- Leukocytoclastic vasculitis
- Lichen planus
- Lichen sclerosus
- Ligneous conjunctivitis
- Linear IgA disease (LAD)
- Lupus (SLE)
- Lyme disease, chronic
- Meniere’s disease
- Microscopic polyangiitis
- Mixed connective tissue disease (MCTD)
- Mooren’s ulcer
- Mucha-Habermann disease
- Multiple sclerosis
- Myasthenia gravis
- Neuromyelitis optica (Devic’s)
- Ocular cicatricial pemphigoid
- Optic neuritis
- Palindromic rheumatism
- PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus)
- Paraneoplastic cerebellar degeneration
- Paroxysmal nocturnal hemoglobinuria (PNH)
- Parry Romberg syndrome
- Parsonnage-Turner syndrome
- Pars planitis (peripheral uveitis)
- Peripheral neuropathy
- Perivenous encephalomyelitis
- Pernicious anemia
- POEMS syndrome
- Polyarteritis nodosa
- Type I, II, & III autoimmune polyglandular syndromes
- Polymyalgia rheumatica
- Postmyocardial infarction syndrome
- Postpericardiotomy syndrome
- Progesterone dermatitis
- Primary biliary cirrhosis
- Primary sclerosing cholangitis
- Psoriatic arthritis
- Idiopathic pulmonary fibrosis
- Pyoderma gangrenosum
- Pure red cell aplasia
- Raynauds phenomenon
- Reflex sympathetic dystrophy
- Reiter’s syndrome
- Relapsing polychondritis
- Restless legs syndrome
- Retroperitoneal Fibrosis
- Rheumatic fever
- Rheumatoid arthritis
- Schmidt syndrome
- Sjogren’s syndrome
- Sperm & testicular autoimmunity
- Stiff person syndrome
- Subacute bacterial endocarditis (SBE)
- Susac’s syndrome
- Sympathetic ophthalmia
- Takayasu’s arteritis
- Temporal arteritis/Giant cell arteritis
- Thrombocytopenic purpura (TTP)
- Tolosa-Hunt syndrome
- Transverse myelitis
- Ulcerative colitis
- Undifferentiated connective tissue disease (UCTD)
- Vesiculobullous dermatosis
- Wegener’s granulomatosis
**NOTE Fibromyalgia and Chronic Fatigue are listed, not because they are autoimmune, but because many persons who suffer from them have associated autoimmune disease(s)
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
I got this list from the lfa webite. It is important to note that this is the tool doctors use to decide if lupus may be the answer. Please read and learn. Thanks! j
Common Symptoms of Lupus
To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.
- Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
- Discoid rash – a rash that appears as red, raised, disk-shaped patches
- Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
- Oral ulcers – sores appearing in the mouth
- Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
- Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
- Kidney disorder – persistent protein or cellular casts in the urine
- Neurological disorder – seizures or psychosis
- Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
- Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
- Abnormal antinuclear antibody (ANA)
People with lupus also may experience symptoms that do not appear among the ACR criteria:
- fever (over 100° F)
- extreme fatigue
- hair loss
- fingers turning white and/or blue when cold (Raynaud’s phenomenon)
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.
Yup, it’s me again. I loved all your responses to the last post about sleeping! It truly does help knowing we are not alone in this battle we are in!
As I am writing this post, I have the overwhelming urge to go back to sleep! Again. Considering all the sleep I have had lately, it still surprises me that I am so fatigued. Yet, I made myself get out today and get a few things. By the time I got back home, I was totally wiped!
Now I am sitting here with my puddy tat in my lap, in the recliner, and will probably fall asleep once I sign off. At some point I truly would like a day with no fatigue or pain. Just one! Yeah, I know, pity party for one here. I just wish I could do the things I want or need to do!!! That being said, I am thankful to have another day of life and I really do appreciate it! Even on these bad days, I am thankful to know that at least I am here! There are others who would trade me the chance if they could.
I hope you are all well and happy today! I am up and down. I will survive this day (hopefully) and think about a better day tomorrow! Keep the comments coming! I love to read your comments. Please do not feel neglected if I do not respond to each of them. Some days it is hard enough just to post and if I missed replying to your comments, please know that I read each of them and when the energy is there, I respond. Just have had a bit of bad flaring so not all that “chatty” online. It really means a lot to me when you share because I know that I am not alone too! Thanks to you all for your comments, encouragement and personal stories! ~Jen
It is that time of the year again, the time when the weather cools at night and the air is filled with the scents of fall. It is a beautiful time of the year! I love this time of the year! Unfortunately, my body doesn’t like it. The cooler weather triggers flares in many lupus patients. I am one of those patients.
As most of you know by now, I am in a major flare. Fully. I have joint pain, fatigue, blisters in mouth and nose, malar rash, and feel like poo. I called my rheumy and he called me in the poison I hate. Prednisone. Yes, it can work miracles, especially for us lupies. I just hate how my body responds to it. For the first two days, I was still miserable. Days three and four led to a flurry of activity as the prednisone kicked in and the adrenaline kicked in too. Of course, with the increase in activity, it also brings setbacks in other ways.
My body reacts to prednisone in a variety of ways. I almost always get the malar rash breakout when I first start it. Next comes the MAJOR hot flashes! I mean MAJOR! No sleep is another one. I get back spasms too, dunno why for those. Now add in intense itching, extreme hunger and insomnia, and well, you get the picture. Sure, it helps me fight lupus! It gives me energy and shows me how I can feel good sometimes. The minuses are many though and I hate this medication!
Alright, I know, it is a miracle drug that keeps many of us lupies alive. I understand that. I just wish science could find some other medication that does not have so many side effects and yet can stop a flare in its tracks! Until then, we have to get the different poisons, aka medications, and pray for the best.
I am thankful for the meds because seriously, they do help stop the major effects of this disease. The drawbacks come in the form of osteoporosis and others. I know this personally.
So, I have been MIA for a bit because I am either tearing into a project with this energy from the prednisone, or I am sleeping for 24 hours catching up. Such is life in the life of a lupus patient.
I got this information from the website http://members.shaw.ca/tiderington/cnslupus.html
FYI *Re: Lupus Cerebritis and Cerebral Vasculitis*
In addition to headache, NP-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.
The diagnosis is not always straightforward.
Although there are no “definitive” tests for CNS-lupus, there is a type of brain scan called a “SPECT brain scan” that may be positive even when an MRI brain scan is normal.
NP-SLE is extremely variable.
Further confounding the ability to diagnose NP-SLE is the fact that a patient may develop a psychiatric illness as a consequence of having lupus without having NP-SLE.
Also, certain therapies may produce psychiatric disturbances.
As the therapy used to treat patients with SLE can cause psychiatric problems, it makes it very difficult for the rheumatologist to decide if the patient is suffering from primarily NP-SLE, reactive depression or the side effects of steroid therapy.
It is usually necessary to rule out other conditions that may mimic central nervous system manifestations of systemic lupus erythematosus, including infection and toxic metabolic states.
The rheumatologist has a battery of diagnostic tests and procedures which can aid him in making the diagnosis of NP-SLE.
To put this in the proper perspective, a patient who has multi-organ involvement and signs of severe NP-SLE, such as seizures, strokes, etc., can easily be given the diagnosis of NP-SLE.
For such a patient, the rheumatologist is confronted with the difficult decision of determining if the headaches or anxiety are truly caused by NP-SLE.
TREATMENT of CNS-SLE
Since the indications of NP-SLE can vary from very severe to mild symptoms, should all patients with NP-SLE be treated with steroids, irrespective of the intensity of the disease activity?
Patients with central nervous system manifestations of lupus erythematosus who present with organic brain syndrome or coma can be treated with intravenous methylprednisolone pulse therapy.
Conclusively, individuals with major manifestations of NP-SLE require aggressive therapy with high dose steroids and perhaps immunosuppressive drugs, plus other appropriate treatment such as anti-seizure medication.
But what should be done for patients with minor manifestations of neurologic and psychiatric NP-SLE?
The study of NP-SLE is still in its infancy, but certain strides are being made.
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 have neurological manifestations of lupus. Mine is in the form of forgetfulness and peripheral neuropathy. Since I am seeing my neurologist soon, I thought it wise to bone up on the information about it again. I found this information, that I previously had not read, to be interesting as a starting point.
I found this information at http://www.dana.org/news/brainhealth/detail.aspx?id=9888. I hope it is as informative to you as it is to me.
Systemic lupus erythematosus (SLE, or “lupus” for short) is a chronic autoimmune disease that can inflame any and all organs of the body—hence the term systemic. Lupus can produce a wide range of symptoms, the most common of which include arthritis, rashes (particularly on the cheeks), fever, a low number of white blood cells, or platelets, and kidney and brain disease. Few people with lupus have all the possible symptoms, but up to half have neurological symptoms or complications, which this section will concentrate on. Please refer to Appendix C, “Resource Groups,” at the back of this book for contacts that can provide you with information on the disease in its full range of manifestations.
We do not know why, but lupus and related diseases spontaneously wax and wane (“flare” and “remit”), so their symptoms vary considerably over time. Lupus can be very mild, or it can be lethal. Because its symptoms are so varied, we are really not sure how many people suffer from it. Its onset is difficult to pin down, and we do not know its cause. We do know that lupus mostly affects young women, particularly those who are non-Caucasian. It has been estimated that up to 1 in 250 black women between 15 and 45 develop the disease, compared with 1 in 800 white women of the same age. The fact that lupus tends to run in families suggests that there is a genetic component to the disease, but no specific gene has been identified.
Lupus is an autoimmune disorder, which means that the immune system, which normally controls a person’s defenses against infection, turns against the body and produces antibodies against its own cells. This leads to direct damage and to inflammation, which often blocks small blood vessels (a condition called vasculitis). Because many lupus symptoms reflect loss of blood flow to a specific part of the body, those symptoms can be as varied as our organs and tissues are.
It is common for people with lupus to develop some neurological symptoms, but rare for these to be the first symptoms to show up. Most often people are diagnosed with the disease because of symptoms affecting other parts of the body. Neurological symptoms can be caused by lupus antibodies, which directly inflame the brain; by blocked blood vessels; and by such lupus complications as high blood pressure, spontaneous hemorrhage, and kidney failure. Furthermore, many of the drugs used to combat the disease can also cause brain symptoms.
Symptoms Due to Lupus Antibodies
Some individuals with lupus make antibodies to various brain, spine, and nerve cells. We do not know precisely how these antibodies injure the brain, but when they do the injury is widespread. Often people with lupus antibodies to their brain cells complain that it is difficult to focus their thoughts or to remember things. Some show bizarre behavior (lupus psychosis). Sometimes a magnetic resonance imaging (MRI) or computed tomography (CT) scan will show that parts of the brain have atrophied, but usually they show nothing. In rare cases, people with severe brain disease will develop seizures or coma.
When antibodies attack the spinal cord, the result is either a disease like multiple sclerosis or meningitis or a localized inflammation of the cord, called transverse myelitis, that causes paralysis from the site of the injury downward. A few individuals will develop antibodies against their peripheral nerves, which can cause numbness and weakness in the feet and hands (polyneuropathy).
Lupus antibodies can also block the chemical message passed between a nerve and a muscle, causing quick fatigue and weakness. This is similar to the disease process found in myasthenia gravis. Still other people develop muscle inflammation (myositis), usually in the muscles nearest the torso, which weakens their shoulders and thighs but leaves their hands and feet strong. Lupus can also produce depression and hallucinations, usually paranoia; these episodes almost always remit completely.
Fortunately, in most cases brain cells recover from the injury they suffer from lupus antibodies, so the neurological impairment is not permanent. Most people return to their usual lives.
Symptoms Due to Blood Vessel Blockage
About one third of people with lupus have an unusual antibody, called antiphospholipid antibody, that can cause clotting and blockage in blood vessels. Lupus can also inflame those blood vessels (vasculitis). Both blockage and inflammation can cause brain, spinal cord, or peripheral nerve symptoms. When the affected vessels are large, a person can suffer strokes in any part of the brain. Generalized obstruction of the small blood vessels results in thinking disorders and dementia.
If only the small blood vessels in the parts of the brain that control motion are affected, a person may suffer from involuntary flailing or twisting motions (chorea) and sometimes loss of balance (ataxia). In people with these symptoms, MRIs and CT scans often show evidence of injury to the related part of the brain.
When lupus causes blood flow to the spinal cord to be cut off, a person becomes paralyzed (transverse myelitis). Loss of blood flow to a peripheral nerve can result in a sudden loss of power or sensation in the corresponding part of the body (mononeuritis multiplex). Unfortunately, brain or nerve injury due to blood vessel blockage is usually permanent.
Symptoms Due to Lupus Complications
Lupus can damage parts of the body that, in turn, produce problems for the brain. The most common of these complications include kidney damage, which results in uncontrolled blood pressure and causes seizures or stroke; kidney failure, which causes twitching, seizures, and coma; and low blood platelets, which can cause spontaneous hemorrhage into the brain. Some people with lupus develop premature hardening of the arteries and heart disease, which can lead to cholesterol blockage of their blood vessels and eventually to ischemic stroke.
Symptoms Due to Treatment and Its Complications
Many of the medications used to treat lupus can cause neurological symptoms as side effects. The drug most commonly used for lupus is prednisone, a corticosteroid, which can cause psychosis. The psychosis is dose-related and disappears when the person stops taking the medication. The same class of drugs (steroids) can cause muscle weakness that closely resembles the weakness we see in lupus-induced muscle inflammation, so identifying the effect of the dosage can be tricky. Steroids can also bring on diabetes, which can lead to diabetic coma, and they markedly suppress our immune systems, making a person vulnerable to brain abscess and other infections. Immunosuppressants, which are used in severe cases of lupus, can also make the person vulnerable to infection.
In addition, lupus sufferers are very sensitive to other drugs. Even low doses of the simple medications used to control nausea can cause people with lupus to suffer uncontrolled facial movements. Because of all these possible complications, people with lupus and their doctors become very mindful of drugs’ potential side effects.
Most people with lupus develop only a few of the total number of possible symptoms. This diversity of clinical symptoms and possible mechanisms of brain injury makes it difficult for doctors to evaluate people with new neurological symptoms and immediately diagnose lupus as the cause. Furthermore, other autoimmune and rheumatic diseases may affect the nervous system in a similar way: dermatomyositis, scleroderma, vasculitis, rheumatoid arthritis, and others.
No single test can determine whether a person has lupus. Doctors faced with neurological symptoms commonly run blood tests, brain wave and other electrical tests, MRI and X-ray tests, and cerebrospinal fluid analysis, but these tests do not provide any specific indication of lupus. They may show evidence of a hemorrhage, vessel blockage, inflammation, or infection that led to an individual’s disorder, but not what caused that problem. Often these tests are normal, even though a person may be suffering from lupus.
Due to the absence of a single diagnostic test, doctors must identify lupus by recognizing its constellation of symptoms, and then attempt to confirm the diagnosis by testing for the specific antibodies that the body makes against its own tissues (called autoantibodies). We use the antinuclear antibody to screen people for lupus, and the antibody to DNA to diagnose the disease. Unfortunately, some drugs, infections, and other diseases can also produce positive results on these tests, and some people who have lupus might nonetheless test negative.
To further complicate the diagnosis of lupus-related neurological disease, only a few of the many lupus autoantibodies can affect the brain, and even the little information we have on those autoantibodies is controversial. Antineuronal antibodies are more common in people with brain disease than in those without, but we do not know whether they actually cause the brain disease. Antibodies to the microsomal P antigen may sometimes identify people whose mood disorders are due to lupus. Antiphospholipid antibody and lupus anticoagulant are clues to spontaneous clot formation. The only way to make the final diagnosis is careful clinical assessment using all available diagnostic tools. The autoantibodies can only serve as clues.
Treating lupus is often a team effort involving the affected person, the family, and several types of health care providers. Each person’s treatment depends on the specific symptoms. Once lupus has been diagnosed, a treatment plan is tailored to the individual’s needs, and it often changes over time. Neurologists are most likely to work with individuals suffering from symptoms involving the brain or nervous system.
People with lupus and their doctors must be extremely vigilant for any possible neurological symptoms. The initial signs may be quite subtle. Early and aggressive treatment of these complications can prevent severe brain injury. Our current treatment cannot repair damaged brain tissue, but it can reduce inflammation, thus improving a confused person’s thinking or awakening someone in a coma. Treatment can also prevent problems from recurring.
Several types of drugs are used to treat lupus. When the disease is active, blood vessels are inflamed, or a person is suffering from acute brain symptoms (seizures, coma, confusion), doctors prescribe high doses of corticosteroid hormones (such as prednisone) and immunosuppressive drugs (such as cyclophosphamide). If the problem is blood clots, the treatment is anticoagulant drugs (aspirin, warfarin/Coumadin, heparin/Calciparene). People may also take antihypertensives and anticonvulsants for the relevant conditions. Many of these drugs can cause severe side effects, and doctors aim to use the lowest possible dose for the shortest possible time to achieve the highest possible benefit. Some people seek alternative approaches, including special diets and homeopathy, but no research has proven these methods to be successful.
Even with the symptoms of lupus and the potential side effects of treatment, many people with the condition maintain a high quality of life. Perhaps as many as half of those affected have only mild illness, and others develop strategies to prevent or minimize their flares. Around 76 percent of people diagnosed with lupus survive for at least ten years, and around 69 percent for at least twenty. Symptoms involving the central nervous system make a person’s prognosis worse, but lupus is most deadly when it affects the kidneys. Much research is under way to determine what causes lupus, what new drugs can treat it, and what someday may cure it.
I am posting this link here because it concerns those of us with lupus. However, I would like to add that while this list is good advice for most people with lupus, some of these things may not impact all lupus patients. The disease is known for manifesting itself in a multitude of ways in each person. In other words, what harms one person may not harm another or cause a flare. So, please read this article from Johns Hopkins and discuss it with your doctor. Enjoy!
Things to Avoid
If you have lupus or a condition that predisposes you to lupus, such as undifferentiated connective tissue disease (UCTD), there are certain foods and medications that you should avoid. The substances listed below have shown to induce lupus signs and flares and should be avoided by people with lupus or autoimmune diseases suggesting “pre-lupus.”
People with lupus should avoid the sun, since sunlight can cause rashes and flares. Some people are more sensitive to sunlight than others, but all people with lupus are advised to be cautious when they are outside. Of course, it would be impractical to completely avoid going outdoors, but try to be prepared. Carry a sunscreen with an SPF of at least 70 and be sure that your sunscreen contains Helioplex, an ingredient that blocks UV-A and UV-B rays, both of which are harmful to people with lupus. Apply sunscreen to all areas of the body, even those covered by your clothes, since most normal clothing items only protect your skin to the level of SPF 5. In addition, carry a hat with you when you know you will be outside. Certain sportswear manufacturers now make hats with SPF built into the material, which may be helpful for people with greater photosensitivity.
(2) Bactrim and Septra (sulfamethoxazole and trimethoprim)
Bactrim and Septra are antibiotics that contain sulfamethoxazole and trimethoprim. They are grouped as “sulfa” antibiotics because they contain a substance called sulfonamide. Bactrim and Septra are often prescribed for bacterial infections, especially urinary tract infections. They are also sometimes given prophylactically (i.e., to prevent infection), especially in people taking immunosuppressive medications. However, it is very important that you avoid Bactrim and Septra, because these antibiotics are known to cause an increase in sun sensitivity and lower blood counts in people with lupus, resulting in lupus flares. Several medications can be used instead of Bactim or Septra for the prevention and treatment of infection; perhaps the most frequently used substitute is Dapsone (diaminodiphenyl sulfone) to prevent Pneumocystis pneumonia.
Scientists believe that three substancs in garlic—allicin, ajoene, and thiosulfinates—rev-up your immune system by enhancing the activity of white blood cells, particularly macrophages and lymphocytes. Scientists also believe that the sulfur components of garlic help to prevent and suppress cancer in the body. For this reason, garlic is often used as a supplement to combat colds and infections. Unfortunately, the enhancement of immune response is counterproductive in people with autoimmune disease such as lupus, because their immune system is already overactive. As a result, people with lupus and lupus-like signs should avoid cooking with garlic and adding it to food. Of course, a tiny amount of the herb will not harm you, but try to consciously avoid purchasing and preparing foods with garlic.
(4) Alfalfa Sprouts
Alfalfa sprouts contain an amino acid called L-canavanine that can increase inflammation in people with lupus by stimulating the immune system. As a result, people with lupus and similar autoimmune conditions should avoid alfalfa sprouts completely.
(5) Melatonin and Rozerem (ramelteon)
Melatonin is a hormone secreted by the pineal gland in your brain that regulates other hormones in the body that control how your body reacts to daily patterns of light and dark. Melatonin release is suppressed during the light hours of the day and stimulated by dark, helping you stick to patterns of nighttime sleep and daytime wakefulness. As a result, melatonin is often used as a sleep aid over other medications. Melatonin and melatonin-containing supplements should be avoided in people with lupus and other autoimmune disorders because they may stimulate the immune system. In addition, people with these conditions should also avoid the prescription sleep aid Rozerem (ramelteon), because it mimics melatonin in the body. It is important that you understand the necessity of avoiding both melatonin and Rozerem, since sleep aids are often used to help people with fibromylagia and other conditions to attain normal sleep patterns. In general, be sure that you speak with your physician before taking any new medications or supplements.
Echinacea is often used as a dietary supplement to boost the immune system against colds and other illnesses. However, because Echinacea boosts your immune system, it may cause flares in people with autoimmune diseases such as lupus. In fact, Echinacea supplements sold in Europe bear warning labels that advise against use by people with autoimmune diseases. As a result, people with lupus and other autoimmune diseases should avoid these supplements. In general, it is important that you speak with your physician before taking any new medications or supplements.
I am repeating this post because it is worth repeating this time of year.
This article I found online discusses the issues the summer season can provoke and offers some great tips on getting through summer overall. I know I have discussed how cold affects my lupus, but unless you have lupus, you may not be aware that summer heat and sun can also wreak havoc on bodies that are already off kilter. This information comes from the web :associated content on yahoo. I hope you will read it and use the suggestions it presents for dealing with your lupus or your friend with lupus. It helps to educate others on the very real dangers the lupus patient can experience. Enjoy! I found it enlightening for myself and learned several new things.
Lupus and Heat
SLE or lupus and other autoimmune disorders often have higher incidences of flare ups during certain seasons, and for different reasons. Because of this, summer carries a high risk of danger to lupus and mixed connective tissue disorder patients in particular. Both extreme temperatures and sun exposure itself cause an already unstable body system to really go off kilter.
Because these disorders can impact the heart, kidneys and lungs, it is extemely important to try and prevent further damage to our bodies. Dehydration poses a much greater threat to us, so it’s important to remember to drink 6-8 glasses of water a day, and add other beverages such as fresh juice or refreshing iced teas.
Never go outdoors during the peak heat hours between 12 and 4 PM. Wear a big hat to shade your face, and an SPF sunscreen of at least 40. Learn to heed the signs of impending high blood pressure or kidney problems. If you begin feeling a tightness in your head, accompanied by a pounding pulse and often spots before your eyes, lie down immediately and call your physician.
If you stop urinating, or only are producing scanty amounts of urine, accompanied by intense headache, have someone drive you to the ER immediately. Do NOT try driving yourself, you may black out. As an example, I’ve been having periods of feeling as if I am going to pass out, something I’ve never had before. My husband drove me to the doctor who discovered yesterday my blood pressure is at a very dangerous 170/150. Needless to say it frightened us all out of our wits. When we asked why, she explained the combination of high heat, dehydration and constant pain from the still unhealed ankle breaks had cause my lupus to go into “crisis’ flare.
She, when asked for tips I could share with others, pointed out a few less obvious contributing factors. One is the light/heat from windows unless covered and draped. The damage from sun coming in an uncovered window is nearly twice as bad as being outoors itself. The same applies to flourescent lights. For some patients the UV light causes tremendous irritation for patients with SLE and Sjogrens.
Eyeglasses should be heavily tinted against UV rays. In Sjogren patients, who often suffer from dry aching eyes, the glasses afford them some relief and protection against the sun. Use eye moisture drops regularly to
stop the aching, stickiness and burning.
Swimming is an excellent way to ease fatigue and joint pains. During summers peak heat, try going very early in the morning, before 10 AM is perfect, or after 6 PM at night. Walking at a leisurely pace at those times is also a great way to get outdoors for a half hour or so. You might be surprised at how either of these things done two to three times a week, will improve your mood and your sense of fatigue.
Watch out for insect bites or other minor cuts or scrapes. Our systems are hyperreactive, making a small injury something to pay attention to. Especially if you are experiencing a flare up of your disease and being treated with Prednisone, Cyclosporin or other immunosuppressive treatment. Clean the area with soap and water, then lightly cover it with a bandaid treated with neosporin or other antibacterial agent.
Your appetite may be way off. So tempt yourself with small meals made up of fresh organic fruits or veggies, crackers and cheese or toasted english muffins with butter and fresh jam. If abdominal pain and diarrhea develop due to heat stressing, shower, wear something light and soft, and lie down in a darkened room. Take your meds on time, and notify your doctor if they are failing to control your pain or other symptoms.
Living with lupus or MCD doesn’t have to mean you have to avoid having summer fun. Like everything else involved with these disorders, it’s a matter of adjusting your schedule to adapt to the season, and to maintain a positive attitude. Relax, be aware of your body and don’t apologize to anyone for not being able to join in every single activity. And that means not doing things to harm yourself, just because you feel people may see you as lazy or somehow faking it. They don’t walk in your shoes, nor experience what you do. As I learned, much to my regret, is when you hurt yourself because of neglect or someones attitude towards you, you end up paying much too high a price. Enjoy life on whatever terms are safe and comfortable for you.
Say What? Hiring a doctor? Yup, that’s what I said. Did you know that many doctors seem to forget that we in effect “hire” them for their services? They fit the definition of an employee, or sub contractor even because we pay them for their time and services rendered. So, why bring this up? Let me explain…
When you have a chronic disease, like lupus, you become well versed in medical terminology, procedures, testing, and of course medications. It is par for the course due, in part, to the fact that depending on your disease course you will be under the care of different doctors for different things that can arise.
For example, I see my family practitioner for everyday things like colds and flu. I see my rheumatologist for my joint pain and other “lupus” related things. I see my neurologist for the brain associated effects, like periphreal neuropathy and migraines. I have also seen orthopedic surgeons, general surgeons and a host of ER doctors. I also see a therapist, because I am depressed. Go figure.
In the course of this disease, it is important for all the doctors that you see to share their information with each other so they can all stay on the same page as it were. Otherwise, you may find that medications and or treatments may be harmful because one does not know what the other has prescribed.
Here is where the hiring comes in. You need to see a family doctor. If the one you currently see feels the need to belittle you or act as if your disease is not real, then fire them and find one who listens and is proactive. Same goes for all the other doctors you may see. I personally have fired a few doctors in my time. Right now I am awaiting an appointment with a new neurologist for example, because my last one did a slew of tests and whenever I tried to get in to see him to discuss the results, there was always some excuse for having to reschedule my appointments. So, I got a new one and I hope he is a good one. Time will tell.
If you learn as much as possible about your condition, then you are a well informed consumer and are able to discern whether or not your particular doctor is right for you. If your doctor does not like the fact that you are well informed, then find another one who does. This is YOUR body, YOUR disease, and YOUR treatment. Not the doctor’s. Knowledge is power. A good clinician will not only encourage you to become informed but will welcome any questions you may have about a certain treatment or procedure or medication without making you feel stupid. Yes, some doctors seem to like the POWER, but YOU are the one paying them so if you are not comfortable, find another one.
When dealing with a chronic disease it is important to remember that YOU are the most important player in this game. Your team consists of your doctors, nurses, support groups, therapists, friends and family. Making sure they all share their information is one of the most important things you need to do in your managed care of your disease. It is vital to stay on top of it, even if it means the occassional phone call or appointment to discuss the finer points of your treatment.
Ultimately you are in control of your care. Being a well informed patient has never been more important than now, when you are dealing with a chronic, non-curable disease. Stand up and be assertive for your own health and well being. No one knows how you feel more that YOU. So if that doctor acts like it is all in your head (and yes, I had a few who mentioned it must be because I was a woman looking for attention) then RUN out of that office and find one who listens and respects your symptoms and who wants to find out why! I did and now I have a pretty good team assembled. It is up to you to take care of this.
I started this information with what I gathered from the LFA’s website. Now let’s see that another website says about this subject. I got this information from www.hopkinslupus.org. It is another interesting article on this subject.
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.
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 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..
Since the beast of fibromyalgia has reared its ugly head in my body recently, I decided to review the basic facts of fibromyalgia (fm). I always feel that knowledge is more powerful than ignorance so in my quest for the information, I found this website which has a great description of the basic information of fm. I got this from the website www.prohealth.com. You can find more information there. Here is their article:
What is Fibromyalgia?
Fibromyalgia (FM) is a chronic pain disorder characterized by widespread pain, fatigue and sleep disturbances. It was originally thought to be a musculoskeletal disorder since most of the pain was felt in the muscles and other soft tissues. However, recent research and the advancement of brain-imaging technology is revealing that fibromyalgia is actually a disorder of the central nervous system, which causes abnormal pain processing and results in pain amplification.
The three primary symptoms that are common to almost everyone with fibromyalgia are pain, fatigue and sleep disorders.
Pain: Pain is usually the most prominent symptom of fibromyalgia. FM pain is chronic and widespread, affecting all four quadrants of the body, although not necessarily at the same time. Its intensity may range from mild to profound. FM pain tends to migrate, sometimes affecting one part of the body and sometimes another. Patients also report that their bodies ache all over, much like having the flu. In addition to the aching, FM pain has been described by different people as burning, throbbing, sharp, stabbing or shooting pain. Most people with FM also complain of feeling stiff and achy when they wake up.
Fatigue: While everyone knows what it feels like to be tired, the fatigue experienced by fibromyalgia patients is so much more. It’s a pervasive, all-encompassing exhaustion that can interfere with even the most basic and simple daily activities. Another feature of FM fatigue is that it is not relieved by rest.
Sleep Disorders: Most people with fibromyalgia have problems with sleep. They report having difficulty getting to sleep, waking up frequently throughout the night, and not feeling refreshed when they get up in the morning. Studies have shown that FM patients spend little to no time in deep, stage four sleep because their sleep is repeatedly interrupted by bursts of awake-like brain activity. Since deep sleep is the time during which the body replenishes itself, fibromyalgia patients are not able to get the restorative sleep their bodies need. In turn, this lack of deep sleep can result in making their pain and fatigue worse.
Other Symptoms: Most fibromyalgia patients also report a number of other symptoms and overlapping conditions, which may include allergies, irritable bowel, irritable bladder, headaches, migraines, dizziness, numbness and tingling, sensitivity to cold or heat, depression, restless legs syndrome, chemical or environmental sensitivities, impaired balance or coordination, dry eyes and mouth, vision problems, or problems with memory, concentration and cognitive functioning.
(For more information about specific symptoms, see “Common Symptoms“)
Who is at Risk for Developing Fibromyalgia?
Adult women appear to be at greater risk for developing fibromyalgia than men or children, however, it can affect all ages and both sexes. Historically, 75 to 90 percent of people diagnosed with FM have been women, but new information may eventually change those figures.
FM experts are finding that men often have fewer than the traditional 11 tender points required for diagnosis, yet meet all the other criteria for fibromyalgia. And what was once thought to be “growing pains” in children may turn out to be a previously unrecognized form of FM.
Although fibromyalgia will probably still occur most frequently in adult women, we may soon discover it affects significantly more men and children than once thought.
Another risk factor may be family history, as there is growing evidence of a genetic component in fibromyalgia. If someone in your family has FM, you may be at greater risk of developing it yourself.
How is Fibromyalgia Diagnosed?
Fibromyalgia (FM) should be diagnosed by a qualified physician who is familiar with the illness and has experience diagnosing and treating it. In 1990, the American College of Rheumatology established the research criteria for fibromyalgia, which are now the criteria most commonly used to diagnose it.
For a diagnosis of fibromyalgia, both of the following must be present:
- A history of widespread pain in all four quadrants of the body for a minimum duration of three months, and
- Pain in at least 11 of 18 designated tender points when four kilograms (about 10 pounds) of pressure are applied.
According to the American College of Rheumatology fibromyalgia is not a diagnosis of exclusion. However, there are several other illnesses that have similar symptoms, so it is important that the doctor test for certain comorbid conditions as well. Which particular tests may be necessary will depend upon the individual patient’s symptoms and medical history.
In the past few years scientists have made tremendous progress unraveling the mysteries of fibromyalgia. Although there is still some disagreement as to the cause of FM, there is little disagreement that its onset is usually triggered by some form of trauma. The trauma may be physical, in the form of an injury or illness, or it could be an emotional trauma that produces severe, prolonged stress.
Current research seems to indicate that some people have a genetic predisposition to fibromyalgia, although the symptoms usually do not show up until triggered by one of these traumas.
One popular theory as to the cause of fibromyalgia is that a trauma or significant stressor turns on an individual’s “fight-or-flight” response. This response, designed to help us function in an emergency situation, usually only lasts a short time, then turns itself off.
But when the stress becomes prolonged, the fight-or-flight response gets stuck in the “on” position and the person’s body remains in a state of high alert. Being in a constant state of high alert puts even more stress on the body. This results in, among other things, a loss of deep, restorative sleep, which in turn causes pain amplification throughout the body.
Regardless of what initially triggers the illness, research has shown that fibromyalgia patients have very real physical abnormalities, including:
- Decreased blood flow to specific areas of the brain, particularly the thalamus region, which may help explain the pain sensitivity and cognitive functioning problems fibromyalgia patients experience.
- High levels of “substance P,” a central nervous system neurotransmitter involved in pain processing.
- Low levels of nerve growth factor.
- Low levels of somatomedin C, a hormone that promotes bone and muscle growth.
- Low levels of several neurochemicals: serotonin, norepinephrine, dopamine and cortisol.
- Low levels of phosphocreatine and adenosine, muscle-cell chemicals.
Since the cause of fibromyalgia remains a mystery, most treatment is aimed at relieving symptoms and improving quality of life. Most patients find that a multi-disciplined approach using a combination of prescription medications, alternative/complementary therapies, gentle exercise and lifestyle adaptations seems to work best.
Unfortunately, finding which medications, therapies, etc. work best for a particular patient is generally a matter of trial and error. What helps one patient may not help another. It’s important that the patient, doctor and other healthcare professionals work together as a team to develop an individualized treatment plan.
(For more information about different treatment options, see”Treatment Modalities.” )
Choosing a Doctor
If you have a primary care physician with whom you’ve established a good rapport, discuss your concerns regarding fibromyalgia. Chances are she has other patients with the same illness, but if not, provide her with information you’ve found helpful. She may or may not remain the gatekeeper in your care, but she should be able to help you find a physician who is familiar with fibromyalgia and able to help you.
In the past, rheumatologists were the specialists who diagnosed and treated fibromyalgia. However, since research is indicating that FM is most likely a central nervous system problem, some rheumatologists are no longer taking FM patients. Check with the rheumatologists in your area to see if they will treat fibromyalgia. Logically, if FM is a central nervous system issue, neurologists would be the specialists that should treat it. Unfortunately, most neurologists are reluctant to add fibromyalgia to their practices. A few, however, have jumped on board. Again, check with the neurologists in your area to see if they will treat FM.
If your doctor is not knowledgeable about FM and is not able to recommend someone, your best resource for finding a doctor who is knowledgeable about fibromyalgia in your area is probably a local support group. (Check ProHealth’s Support Group Listing to find a group near you. ) FM message boards are also a good place to ask if anyone knows of a good doctor in your area. (Visit ProHealth’s FM message board.)
Talking with family and friends may shed some light on your search as well. Hearing of a physician with compassion, one who spends time with patients and listens, goes far when making a decision. Overall, you want to find a physician who is committed to learning as much as she can about the condition so she can provide you with the best possible care.
Do a little research on the doctors you are considering. First, check with your insurance carrier to find out which health care providers are covered by your plan. If there aren’t any suitable doctors in your plan, inquire about out-of-network coverage and charges. Next, check out the doctor’s medical credentials and whether there have been any malpractice suits or disciplinary actions against her. Below are just a few resources to help you begin your research:
- American Medical Association’s Doctor Finder includes physician profiling information such as medical school, training and specialty.
- The American Board of Medical Specialties will tell you if your doctor is board certified and in what specialties. “Board certified” means the doctor has completed two additional years of training and passed a national examination. “Board eligible” means the training, but not the test, has been completed.
- Contact your state’s Board of Medical Examiners to find out about any history of malpractice suits.
- Find out how other patients feel about a doctor you are considering. There are several Web sites, like RateMDs.com where patients rate their doctors. This particular site covers doctors and dentists in the US, Canada, the UK, Australia, New Zealand and India.
As with any chronic illness, navigating your way within the medical world will require you to be your own advocate. This means being proactive about your care, staying informed, and being organized about your needs during each appointment. This is not an easy road, and balancing the medical, insurance and care aspects of your health is going to require clarity and work on your part.
Seldom is fibromyalgia a solitary illness. Most FM patients have one or more comorbid (related) conditions. Which came first is one of those chicken and egg questions.
Why do people with FM usually have so many other disorders? The answer to that may be found in a new paradigm proposed several years ago by Dr. Muhammad Yunus. He suggests that many of these related illnesses could be classified as Central Sensitivity Syndromes. Basically, this means that the central nervous system becomes hypersensitive, which stresses the rest of the body and can eventually lead to any number of different disorders. (See “Are Fibromyalgia and Other Chronic Conditions Associated?” for more information on Central Sensitivity Syndrome.)
Some of the related conditions that fibromyalgia patients may have include:
- Migraine disease
- Restless legs syndrome
- ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)
- Irritable bowel syndrome
- Multiple sclerosis
- Temporomandibular joint disorder (TMJ)
- Chiari malformation
- Intermittent cervical cord compression
- Cervical stenosis
- Polymyalgia rheumatica
- Sleep apnea
- Raynaud’s syndrome
- Sjogren’s disease
- Myofascial pain syndrome
- Multiple chemical sensitivity
- Rheumatoid arthritis
- Interstitial Cystitis
- Gulf War Syndrome
I must say that I have done this subject in a previous post but I found new information on a different website and thought I would share it here. It makes for interesting reading. The article cites Daniel Wallace, MD, who is one of the most widely read doctors when it comes to lupus. I hope you learn more by reading this article. It comes from www.hopkinslupus.org.
Signs, Symptoms, and Co-occuring Conditions
Lupus affects everyone differently, but certain signs and symptoms are common. [A sign is medical evidence your doctor finds during a physical exam, such as a specific rash; a symptom is a subjective indication of disease, such as joint stiffness or a headache.] In addition, other conditions, such as fibromyalgia, occur commonly in people with lupus but are not directly due to disease activity. These co-occuring conditions are known to doctors as “comorbidities.” Several signs, symptoms, and comorbidites of lupus are detailed below.
The average human body temperature is around 98.5°F, but many people run just above or below that mark. A temperature of 101°F is generally accepted as a fever. Many people with lupus experience reoccurring, low-grade temperatures that do not reach 101°. Such low-grade temperatures may signal oncoming illness or an approaching lupus flare. Fever can also signal inflammation or infection, so it is important to be aware of the patterns of your body and notify your physician of anything unusual.
Many lupus patients experience joint stiffness, especially in the morning. People often find that taking warm showers helps to relieve this problem. If this habit does not offer comfort and joint stiffness prevents you from daily activity, be sure to speak with your doctor. He/she will examine you for any signs of joint swelling and can speak with you about medications that may ease some of this pain and inflammation, such as over-the-counter pain treatments and NSAIDs. Tenderness of a joint in known as arthralgia, and it is important that your doctor distinguish this from the arthritis (true swelling) that may accompany lupus.
If you experience a fever lasting a few days or fevers that come and go over the course of a few days, you should take your temperature twice daily and keep a record. Certain trends may alert your doctor to specific processes occurring in your body. In addition, a fever of 101°F or more should be given medical attention. If you are taking steroid medications such as prednisone, be alert for any sign of infection, since steroids can suppress your immune system while also masking symptoms of infection. Immunosuppressive medications such as azathioprine, methotrexate, cyclophosphamide, and mycophenolate also suppress the immune system, so if you begin to feel ill when taking one of these medications, notify your doctor immediately.
Increased lupus activity can sometimes cause weight loss, and certain medications can cause loss of appetite. No matter what the cause of your weight loss, you should speak to your doctor to ensure that the loss does not indicate a more serious condition. If you experience a loss of appetite due to your medications, your doctor may suggest alternative medications or solutions to ease stomach discomfort.
Other medications, such as corticosteroids, can cause weight gain. Therefore, it is very important that you speak to your doctor about maintaining a balanced diet while taking these medications. You may need to reduce your calorie consumption; your physician can refer you to a nutrition counselor if needed. Light to moderate exercise can also help you to maintain a healthy weight and cardiovascular system, while also boosting your mood.
Please remember that it is very easy to gain weight, especially when taking steroids, but it is much more difficult to lose it. It is very important that you try to achieve a healthy weight, because women with lupus between the ages of 35 and 44 are fifty times more likely to experience a heart attack than the average woman. In addition, maintaining a healthy weight helps to alleviate stress on your joints and keeps your organs working productively and efficiently.
Fatigue and Malaise
Ninety percent of people with lupus will experience general fatigue and malaise at some point during the course of the disease. Some people find a short 1 ½ hour afternoon nap to be effective in reducing fatigue. However, exceeding this time frame might lead to problems sleeping at night. If you feel that you are tired throughout most of the day and that fatigue prevents you from engaging in daily activities, speak to your doctor. Fatigue accompanied by pain at certain parts of your body may be a sign of a treatable condition called fibromyalgia. Other fatigue-inducing conditions, such as anemia, low thyroid, and depression, can also be treated. If you and your doctor decide that your malaise is due solely to lupus, try to stay as active and mobile as possible during your daily routine. Often this can be difficult, but many people find that slightly pushing themselves to engage in light to moderate exercise actually increases their energy levels. However, you should never push yourself beyond reasonable discomfort.
As many as 10% of people with lupus may experience a condition called Sjogren’s syndrome, a chronic autoimmune disorder in which the glands that produce tears and saliva do not function correctly. Sjogren’s can also affect people who do not have lupus. People with Sjogren’s often experience dryness of the eyes, mouth, and vagina. They may also feel a gritty or sandy sensation in their eyes, especially in the morning. This dryness occurs because the immune system has begun to attack the moisture-producing glands of the eyes and mouth (the lacrimal and parotid glands, respectively), resulting in decreased tears and saliva.
It is important that you speak to your doctor if you experience dryness of the eyes and mouth, since the medications for these conditions must be taken on a regular basis to prevent discomfort and permanent scarring (especially of the tear glands). The Schirmer’s test is usually performed to check for Sjogren’s and involves placing a small piece of litmus paper under the eyelid. Eye symptoms can be relieved by frequent use of Artificial Tears, and an eyedrop medication called Restasis is often used to prevent worsening of Sjogren’s. Evoxac (or pilocarpine) can be used to increase both tear and saliva production, and certain lozenges (Numoisyn) can also be helpful for dry mouth.
Depression and anxiety are present in almost one third of all people with lupus. Clinical depression is different than the passing pangs of sadness that can haunt all of us from time to time. Rather, clinical depression is a prolonged, unpleasant, and disabling condition. The hallmark characteristics of depression are feelings of helplessness, hopelessness, general sadness, and a loss of interest in daily activities. Depression also often involves crying spells, changes in appetite, nonrestful sleep, loss of self-esteem, inability to concentrate, decreased interest in the outside world, memory problems, and indecision. In addition, people who are depressed may suffer from certain physiologic signs, such as headache, palpitations, loss of sexual drive, indigestion, and cramping. Patients are considered to be clinically depressed when they experience symptoms that last for several weeks and are enough to disrupt their daily lives. Patients suffering from depression also often experience a general slowing and clouding of mental functions, such as memory, concentration, and problem-solving abilities. This phenomenon is sometimes described as a “fog.” The cause of depression is not known; sometimes a genetic component predisposes an individual to the condition. Depression is almost never due to active lupus in the brain.
While clinical depression can be caused by the emotional drain of coping with a chronic medical condition and the sacrifices and adjustments that are required of the disease, it can also be induced by steroid medications (e.g., prednisone) and other physiological factors. It is important that you speak with your doctor if you feel you are experiencing clinical depression, because many people who are physically ill respond well to anti-depressant medications. In addition, your doctor may treat your depression in different ways depending on the cause.
Many people with lupus suffer from gastrointestinal problems, especially heartburn caused by gastroesophageal reflux disease (GERD). Peptic ulcers can also occur, often due to certain medications used in lupus treatment, including NSAIDs and steroids. Occasional heartburn or acid indigestion can be treated with an over-the-counter antacid, such as Rolaids, Maalox, Mylanta, or Tums. Your doctor may also include an antacid or another form of GI medication (a proton-pump inhibitor, histamine2 blocker, or promotility agent) in your treatment regimen. Antacids are effective when used to treat occasional symptoms, but you should try to avoid heartburn and acid indigestion altogether by eating smaller meals, remaining upright after eating, and cutting down on caffeine. If heartburn and acid reflux persist (e.g., for more than two weeks), you should speak with your doctor, because your heartburn symptoms could indicate a larger problem.
The thyroid is the gland in your neck associated with your metabolism—the processes by which your body makes use of energy. Autoimmune thyroid disease is common in lupus. It is believed that about 6% of people with lupus have hypothyroidism (underactive thyroid) and about 1% have hyperthyroidism (overactive thyroid). A thyroid gland that is functioning improperly can affect the function of organs such as the brain, heart, kidneys, liver, and skin. Hypothyroidism can cause weight gain, fatigue, depression, moodiness, and dry hair and skin. Hyperthyroidism can cause weight loss, heart palpitations, tremors, heat intolerance, and eventually lead to osteoporosis. Treatment for both underactive and overactive thyroid involves getting your body’s metabolism back to the normal rate. Hypothyroidism is usually treated with thyroid hormone replacement therapy. Hyperthyroidism is treated with anti-thyroid medications or radioactive iodine.
Osteoporosis (bone thinning) occurs when the bones lose calcium and other minerals that help keep them strong and compact. This condition can lead to fractures, bone pain, and shorter stature. Everyone is at risk for osteoporosis as they age, but women experience a greater risk of the condition after menopause. Studies have shown that people with lupus are at an increased risk for osteoporosis due to both the inflammation they experience with the disease and the use of prednisone.
Your bones are constantly being remodeled in a process that removes old bone cells and deposits new ones. In people with osteoporosis, the bones lose minerals faster than they can be regenerated. Medications called bisphosphonates (e.g., Actonel, Fosamax, Boniva, and Reclast) can be taken to help prevent your bones from losing calcium and other minerals by slowing or stopping the natural processes that dissolve bone tissue. In doing this, bisphosphonates help your bones remain strong and intact. If you have already developed osteoporosis, these medications may slow the thinning of your bones and help prevent bone fractures. In fact, studies have shown that bisphosphonates can lower your risk of fractured vertebrae—bone segments that make up your spine—by 50%. Similar studies demonstrate that these medications can lower the chance of breaking other bones by 30-49%. However, when bisphosphonates are not successful, patients may need a daily injection of parathyroid hormone (Forteo) to build bone.
- Wallace, Daniel J. The Lupus Book: A Guide for Patients and Their Families. 1st ed. New York: Oxford University Press, 1995.
I am studying up on this segment of lupus and the nervous system involvement. I have found several interesting sources of information and thought it would be nice to share them with you.
The first one is is from the LFA’s website. Here is the information they have:
The Nervous System
Lupus is an autoimmune disease that can affect almost any part
of your body, including your joints, skin, kidneys, heart, lungs, or blood.
Lupus can also affect the nervous system and brain. There are several terms
doctors use to describe this: neuropsychiatric lupus (NP-SLE), neurocognitive
dysfunction, or central nervous system lupus (CNS lupus). Your nervous system
has three parts, any of which may be affected by lupus.
- The central nervous system (CNS) consists of the brain and the
- The peripheral nervous system (PNS) is a network of nerves that connects the
brain and spinal cord to the rest of the body, and gives skin and muscles the
signals needed for sensation and movement.
- The autonomic nervous system (ANS) allows communication between spinal and
peripheral nerves and the brain and internal organs, and controls functions like
breathing, blood flow, and heart rate.
People with lupus can experience a number of complications when
their nervous system is affected. The symptoms may come on suddenly or may come
and go, but they will vary depending upon the location and extent of the tissue
injury. These symptoms also can be present in other diseases, so diagnosing
lupus-related nervous system disorders is often difficult.
Neurologists are the physicians who specialize in the nervous
system. They may rely on a number of diagnostic tools to determine whether lupus
is involved in your cognitive problems:
- brain scans (magnetic resonance imaging (MRI) and computed tomography (CT)
- electroencephalograms (to capture the electrical pattern of brain activity)
- spinal tap (to examine fluid in the spinal column)
Behavioral and cognitive tests may also be done to find out if
your memory or other mental abilities have been affected.
Depending on the symptoms, a variety of medications are
available to treat lupus-related nervous system disorders, including
non-steroidal anti-inflammatory drugs, antimalarials, and steroids. Your
response to treatment may be rapid or gradual over several months. For many
people with lupus, nervous system involvement is completely
Central Nervous System (CNS)
When lupus affects your central nervous system, many symptoms
may occur, including:
- vision problems
- mood swings
- difficulty concentrating
Drugs used to treat lupus can cause side effects that are
similar to the symptoms of CNS lupus. If you have symptoms of CNS lupus you
should consult a neurologist who can determine which symptoms are side effects
of medication and which are due to lupus. The drugs most known for causing
symptoms like those of CNS lupus are:
- Non-steroidal anti-inflammatory drugs (NSAIDs) – may cause
headache, dizziness, confusion, and in rare instances, meningitis-like
- Antimalarials – in very high doses (not usually given for
lupus) may cause manic behavior, seizures, psychosis
- Corticosteroids – may cause agitation, confusion, mood swings,
- Anti-hypertensive medications – may cause depression or loss of
A serious form of lupus called CNS vasculitis may occur when
there is inflammation of the blood vessels of the brain. Characterized by high
fevers, seizures, psychosis, and meningitis-like stiffness of the neck, CNS
vasculitis is the most dangerous form of lupus involving the nervous system and
usually requires hospitalization and high doses of corticosteroids to suppress
Peripheral Nervous System (PNS)
The nerves of your peripheral nervous system control your motor
responses and sensation, so symptoms of numbness or tingling, or inability to
move a part of your body, may be the result of lupus affecting these nerves.
Known as peripheral neuropathies, symptoms of PNS nerve damage are caused by
inflammation of the nerves or by compression of the nerves due to swelling in
the tissue around them. The types of symptoms you might experience
- vision problems
- facial pain
- ringing in the ears
- drooping of an eyelid
- carpel tunnel syndrome
Autonomic Nervous System (ANS)
The autonomic nervous system regulates many of your body’s
functions that happen almost automatically: heart rate, blood pressure, feeling
hot or cold, bladder and bowel functions, release of adrenalin, breathing,
sweating, and muscle movement. Lupus can cause these nerve signals to be
overactive, which can lead to a wide range of symptoms:
- mental confusion
- gastrointestinal problems such as nausea, vomiting, constipation, or
Raynaud’s phenomenon is a condition of ANS involvement caused by
inflammation of nerves or blood vessels. Blood vessels in your hands and feet go
into spasm and restrict blood flow, usually as a reaction to cold temperatures,
with the tips of the fingers or toes turning red, white, or blue. Raynaud’s can
also cause pain, numbness, or tingling in fingers and/or toes. People who have
Raynaud’s phenomenon are advised to avoid cold conditions when possible, and may
have to wear gloves or mittens when in air-conditioned surroundings.
Livedo reticularis and palmar erythema are two other skin
disorders that may affect you if you have autonomic nerve damage. Both of these
conditions can cause a bluish, lacelike mottling under your skin, especially on
your legs, giving your skin a “fishnet” look.
As many as half of all people with lupus describe feelings of
confusion, fatigue, memory loss, and difficulty expressing their thoughts. This
collection of symptoms is termed cognitive dysfunction, although many people
call it “lupus fog.”
Cognitive dysfunction most often affects people with mild to
moderately active lupus. The causes of these symptoms, and the reasons that the
symptoms tend to come and go, are not known. Living with cognitive dysfunction
can be very frustrating. However, you can learn to improve your concentration
and lessen confusion and memory loss with a variety of coping skills, including
puzzles, games, biofeedback, using a daily appointment calendar, and balancing
daily activities to reduce stress.
Compared with the general population, people with lupus may be
twice as likely to experience migraine-like lupus headaches, commonly known as
lupus headaches. The features of lupus headaches are similar to migraines and
may be seen more often in people who also have Raynaud’s phenomenon. However,
headaches can also be caused by vasculitis, a symptom of active lupus due to
inflammation of the blood vessels. If you are experiencing headaches that are
not improved by an over-the-counter headache medication, be sure to tell your
Test Yourself for Lupus
1. Have you ever had stiff, tender and swollen joints that feel worse in the morning?
2. Have you ever had an unexplained fever higher than 100 degrees F for more than a few days that was not due to an infection?
3. Have you ever had extreme fatigue and weakness for days or weeks at a time, even after plenty of sleep?
4. Has your skin broken out after being in the sun, but its not sunburn?
6.Have you ever developed irritation or dryness in your eyes or mouth for more than a few weeks?
7. Have you ever been told that you have protein in your urine?
8. Have you ever felt chest pain while taking deep breaths?
9. Have your fingers and/or toes ever become pale or red or blue or felt numb or painful?
10. Have you ever had a stroke or heart attack?
11. Have you ever had blood clotting problems or a miscarriage?
12. Have you ever had redness or a rash across your nose or cheeks in the shape of a butterfly?
13. Have you ever had a seizure or convusion?
14. Have you ever had an unexplained confusion that lasted for more than an hour?
15. Have you had sores in your mouth and/or nose that lasted for more than five days?
16. Have you ever had swelling in your legs and/or ankles on both sides at the same time?
17. Have you had sudden, unexplained hair loss?
18. Have you had unexplained weight loss or abdominal pain that is worse when you breathe?
If your answer was “yes” to at least three of these questions, the Lupus Foundation of America suggests that you consult with your doctor and discuss any questions that you may have about lupus.
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?
Today I discovered something about other people. To begin with, let me say that those of us here who have lupus have met this type of person many times over. It truly does not matter how many times we hear this from people, it still rankles when, either deliberately or unknowingly, people say things that hurt us. To illustrate,
I have lupus, am in a flare, and also have had the flu for over a week now as well.You know, fever, chills, coughing, sneezing, aching, that type of flu. Yeah, it sucks to be me right now. Now for the comment that galls me… another person I know is getting the flu now, same one I have been fighting, and says this to me, “I am not going to obsess or worry about it but I will go on with my day to day regardless of it”.
Yep, that was said to me yet again today. The implication of such a statement is that, if I would quit thinking about lupus, the flu, or whatever may be afflicting me, anad just move forward in the day to day realm of my life, I would be able to overcome it. Oh yeah? Well, here is my rant about this topic… the day that you have walked in my shoes is the day you can tell me how to feel or act or do things.
I really get steamed when this happens. It happens when I least expect it and really makes my blood boil. Especially when this statement is made by those closest to me, in my family. While most “normal” people can push through the flu or other ailments, those of us with lupus will actually make ourselves sicker if we try that approach. You see, our bodies are under attack most days as it is, and to be able to accomplish anything, we need to rest, frequently, and listen to our body when it says for us to do no more. It is hard to justify that you need to rest or the flu is making you feel worse, or anything along that line. For those of us who do indeed listen to our bodies and rest, we tend to not be as sick later. It is a type of trade off, we have to rob from Peter to pay Paul.
I will make this a little easier for those who still may not understand. I would LOVE to just push through and have a real life in spite of having the flu or something like it. I do NOT like having to cop out of chores and the like because I am unwell and need to rest. I DO wish more people would realize the pain they inflict by just saying something as simple as “You can push through it and you will feel better”.
In a way, by saying that and not really hearing what we are telling you about rest, and NOT being able to push through, you are making us feel like we are useless human beings. Yes, that is how I feel whenever someone says that to me. I feel like they either do not care that is hurts me, or they still have not learned that lupus can take me down and out with little or no warning in a variety of ways. I hope they are not being mean spirited, but ignorance can still cause pain and hurt me emotionally.
In this scenario, please feel free to learn more so you are educated and understand the daily struggles involved. Ignorance causes pain but education causes empathy which we as patients need from those around us.
If you would liek to truly be of assistance to us, try a few of these suggestions:
Call us and just listen, it really does mean a lot and helps us to vent the negatives out and be more positive.
Drop by and check on us. Believe it or not, a little company can make the whole day brighter.
Ask if you can help with something. There are days when I cannot do the dishes, and it sure is nice if someone else does them. It does not have to be something like that, but just seeing if youc an help in some way means the world to us.
Send a card letting us know you are thinking of us. Yes, it really helps.
Maybe run an errand for us, like pick up a few groceries while you are out. Call first and ask us if we need anything. Amazing how this can change a day. Maybe go pick up our prescriptions even.
Most of all though, just letting us know you are there if we need you can make a bad day better! You would be surprised how little acts of kindness can make the world of difference!
Thanks for listening and I hope you all have pain free days and blessings surround you.
Well, I guess it is time for me to add a personal post. Times are getting better, then worse. Each day has been a challenge in one way or another lately. I have not disclosed the reasons why to date but feel I need to do so now, if only to allow me to shake the negatives by putting them out there and dealing with them more fully.
I have been dealing with a series of tests from several doctors and the results are finally coming in. I had one test come back good. Yay me! However, two other tests came back with issues. As a result, I have had two more tests done to further review the initial results. I still have not heard from three other tests yet.
I still do not think I want to disclose the exact things that are being checked, as it could be a bunch of nothing to worry about. That being said, it is worrying just to have abnormal results and have to take more tests. I have been tied up in this drama of not knowing now for a few weeks and it can wear on the already sick body. It has done exactly that for me.
To illustrate, last night I was in bed and woke up to pain. Yes, the pain woke me up and forced me to sit up and try to get it to stop. I only had over the counter NSAIDS to take, and believe me, they did not help much. I found myself crying and in pain and wishing I could just go back to sleep.
I am going to see about being more proactive in my care again as this pain is crazy to endure when I should not have to. I could be a druggie ont he streets and get the relief I need but no, I am an honest person who cannot seem to get the pain relief I need. Oh well, you can read my tirade on that in the post from some time ago called “Police Mentality and Pain Control“.
I will share what is going on when I know more about it myself. Until then, I apologize for not posting and being a bit on the selfish side. I am just overwhelmed and hope these things get resolved sooner than later. Thanks for letting me spout off and get it out there! It really helps me to be able to vent on this blog and then feel better.
This was an interesting read I found from Johns Hopkins website. I had never heard of an increased risk of this before. Please read and discuss with your own doctors your chances of this.
Lupus and Cancer
Systemic lupus erythematosus (“lupus” or “SLE”) and other autoimmune diseases are linked to an increased risk of certain types of cancer. Specifically, lupus patients may experience an elevated risk of lymphoma and other cancers, such as cancer of the cervix. Researchers have elucidated certain connections between lupus and cancer. For example, it is widely accepted that immunosuppressive medications, such as azathioprine (Imuran) and mycophenolate mofetil (Cellcept) contribute to elevated cancer risk. However, one of the largest studies to investigate this connection suggests that the risk of cancer is actually greatest during the earlier stages of lupus, indicating that exposure to immunosuppressive therapy is not the only link between lupus and cancer. Physicians do not yet understand the precise relationship between lupus and cancer.
Lupus and lymphoma
Studies show an increased risk of both Hodgkin’s and non-Hodgkin lymphoma in lupus patients. It is believed that the elevated risk of lymphoma results from the disease process of lupus—specifically the overstimulation of B-cells coupled with defects in the immune system’s surveillance system—and not just from medications or other associated risk factors. Some suggest that immunosuppressive medications also increase the risk of lymphoma and other blood cancers, especially 5 or more years after taking the drug. In addition, people with Sjogren’s syndrome, which is relatively common in lupus, experience an even greater elevation of lymphoma risk, suggesting that lymphoma in lupus patients may also be linked to this condition.
Lupus and breast cancer
Some data indicate that women with lupus experience an increased risk of breast cancer. Increased estrogen levels might contribute to a higher risk of breast cancer in women with lupus.
Lupus and lung cancer
Lung cancer is about 1.4 times more common in people with lupus than in the general population. Interestingly, people with lupus and lung cancer are more likely to experience rare types of lung cancer. However, like the general population, many of the people with lupus who develop lung cancer are smokers. In fact, 85% of lung cancer is caused by tobacco. It is very important that people with lupus do not smoke. Smoking not only increases the chance of developing lung cancer, it also ups the risk for cardiovascular disease (which is also markedly increased in people with lupus), and prevents lupus drugs like Plaquenil from working properly. If you need help quitting, talk to your doctor. S/he can help you find the most effective strategy to curb your smoking habit.
Lupus and cervical cancer
Certain studies have shown an elevated risk of cervical cancer and abnormal PAP tests in women with lupus. One study linked the increased incidence of abnormal PAP tests with histories of sexually transmitted disease, contraceptive use, and immunosuppressive medications. Some physicians suggest that either the use of immunosuppressives or flawed inherent immunity lead to a decrease in the ability of lupus patients to fight off human papilloma virus (HPV), a virus associated with cervical cancer. [Gardasil (the HPV vaccine) is recommended for young women with lupus to reduce the risk of later cervical cancer.] However, like much of our knowledge of cancer in lupus, these connections are not fully known or understood.
Lupus and endometrial cancer
New evidence suggests that lupus patients also experience an elevated incidence of endometrial cancer, although the cause for this risk is unknown.
NSAIDs and cancer
It has been found that people with Rheumatoid Arthritis, another autoimmune disease, experience a lower incidence of colorectal cancer than the general population. Although the precise cause of this phenomenon is unknown, it has been attributed to the long-term (10 years or more) use of non-steroidal anti-inflammatory drugs (NSAIDS) and aspirin. Evidence has also been found that long-term aspirin and NSAID use may also reduce the risk of colorectal, breast, and prostate cancer in the general population. It is likely that this benefit also holds for people with lupus, but that does not mean that one should begin taking aspirin and NSAIDs for this reason. In fact, long term NSAID use can increase cardiovascular disease. Therefore, you should only take medications as directed by your physician.
The importance of regular cancer screenings
Despite the increased risk of cancer in people with lupus, studies show that lupus patients are actually equally or even less likely than the general population to undergo cancer screenings. Thus, it is very important that you speak with your doctor about lupus and cancer to ensure that you see the appropriate physicians for cancer screenings as often as recommended.
Certain risk factors, such as smoking, obesity, hormone replacement therapy, and exposure to immunosuppressive medications, increase the chance that an individual will develop cancer. Therefore, it is also important that you practice healthy lifestyle habits. Obesity also increases the risk of certain cancers, so try to eat foods that help you maintain a healthy weight.
Sunlight causes lupus flares and also increases the risk of skin cancer. People with lupus should avoid the sun whenever possible. If you need to be outdoors, wear sunscreen with an SPF of 85 or greater and be sure that your sunscreen contains Helioplex to protect you from both UV-A and UV-B rays.
- Gayed M, Bernatsky S, Ramsey-Goldman R, Clarke A, Gordon C. Lupus and cancer. Lupus. 209; 18(6); 479-85.
- Research Update: Cancer in Lupus. (Based on presentation by Dr. Sasha Bernatsky at BC Lupus Society Symposium.) 22 Oct. 2005. Available at <http://www.bclupus.org/resources.html>.
To be honest, last year I did not walk but still attended the event. This year is not looking too good for me walking either, but I will still tell you why I attend the walk. When I say I walk, I mean attending the event, since walking is not an option due to the disease activity right now. Please read…
I walk for my family, my children and grandchildren. They are at risk of developing Lupus because of me. I walk so they will not have to suffer and feel the pain of joints hurting and rashes appearing and organs inflamed. I walk for their future being pain free and healthy. I do not want this disease to impact them as it has me.
I walk for those who are unable to walk the walk anymore. They are fighting the best they can to survive each day with a smile on their face and joy in their heart. They do not take each day for granted but enjoy each day to the fullest because they have learned to appreciate each day they are given to survive. They are the warriors in this disease.
I walk for those who have passed on. This year alone, I have known of at least ten people who this disease has overtaken. There are many more that I do not know, but the sad fact is that this disease will consume many more loving people before their time. Those who have passed on are the inspiration to me to keep going, and not let the disease win if I can help it.
I walk for those not yet diagnosed. So many times it takes YEARS before a diagnosis can be made. With more awareness and assistance, we hope to cut this time down so patients can get the life saving treatment they need sooner rather than later. In some, this difference can mean life or death. It is vital to shorten this time!
I walk for those in such pain that they find daily living a challenge. Why must we feel bad when asking medical professionals for help in pain management? I truly believe that if more men had this disease, pain management would not be an issue. More women have this disease and as such, pain management can de a daunting challenge. We deserve to live as pain free as we can. We are not asking for something to get high. We are asking for medications that can help us to function on a daily basis as normally as possible. Why do we feel like drug addicts when we ask for help? Medical professionals need to understand that this is a chronic, incurable disease that can come and go and when we are in need of help, please give us the help we need. It is a small thing to ask for yet it is often a challenge because of the laws and the feelings of each doctor.
Finally, I walk so that others can be educated on this disease. Awareness is a key to funding, earlier diagnosis, treatment, and research. The more people realize that lupus is out here and more prolific that many diseases that have a higher profile, the more help we will get. Please take a few moments of your time and read about lupus. Talk about lupus. Join the LFA. Become proactive. For those of us with lupus, we need your help to get the word out. The normal people out there are the ones who can take the ball and run with it. They have the energy and time to be able to help those of us who can’t. Please go to
www.lfa.org and learn more about it.
If we can help just one person, will that not make everyone feel better? Join our cause and see what one person can do. The walk is just the tip of the iceberg.
On a personal note, I am proud of my granddaughter, Audrey, who has walked the walk since she was 3 years old. She WALKS and has raised money each year to help her meemaw. That, my friends, is love.
Wow! It has been a busy week so far for me and it will end with the Walk for Lupus Now event on Saturday. Our team has raised $150 but as it stands right now, we will not meet our goal of $500. I am sad about that because we have met our goal the last two years. I am a goal oriented person and it does bother me. However, we have raised some and since our cause needs all the help it can get, anything is better than nothing! I have just been too sick to get out and beat the bushes as in the years past.
We have had some wonderful sponsors chip in to give us a good base to go with. Subway is an awesome sponsor with two different locations giving us freebies to give out! Kudos to them for their community spirit and giving!
Premier Innovisions is another local company that stepped up to the plate. The owner, Keith Turner, is my former brother in law and he generously gave so my granddaughter would have raised some money! His company is located in Franklin and does corporate IT management. More community spirit!
Chappy’s Tap Room and Grill in West Carrollton gave us a gift card good for $25 to give away as a raffle gift. I have eaten there, and the food is delicious and the atmosphere is great. Whomever wins this gift card will be getting a treat for sure!
Sonic in Middletown gave us ten peelie cards worth over $20 each! They did not hesitate when asked and gave freely! If you have ever been to Sonic, you know their food is pretty awesome and their milkshakes and drinks are amazing!
I have also talked with other local businesses that are willing to get their corporate offices involved and for that, we are grateful! This is only our third year and we are still building our corporate base so to find the willing businesses is a blessing! We are working on this now so we can get rolling on next years event!
We also found that JD Legends, the local bowling facility and concert/sand volleyball place has generously allowed us to book an event to raise even more money! We are booked for June and will be having a silent auction and a 50/50 drawing plus a fun night of bowling! I tell you, this community really does step up when asked to assist in something like this!
This Dayton/Cincinnati corrider can be proud of all the willing businesses who not only WANT to give but do so without any pressure. When asked, they do not hesitate but try to formulate ways to give us the assistance we need to make the event a success!
We are working on establishing new business relationships with corporations in the Dayton area and the Cincinnati area. Each year we will get better at this so please be patient with us. We have many ideas we are working on and hope to get this walk noticed on the national scale as well!
Our walk has more lupus patients in it than many others. This area of Ohio has many lupus patients who are suffering and living each day as best they can. I am one of those patients myself. Our walk is special because so many lupus patients come out and walk the walk! If others knew how hard this is, they would be helping out and not just ignoring us.
I guess that is it for me. I am proud to be a part of something that indeed does touch my family and many others. We are on our way and we will keep walking until a cure is found!