List of autoimmune diseases
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
- Agammaglobulinemia
- Allergic asthma
- Allergic rhinitis
- Alopecia areata
- Amyloidosis
- 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
- Cardiomyopathy
- 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
- Dermatomyositis
- Devic’s disease (neuromyelitis optica)
- Discoid lupus
- Dressler’s syndrome
- Endometriosis
- Eosinophilic fasciitis
- Erythema nodosum
- Experimental allergic encephalomyelitis
- Evans syndrome
- Fibromyalgia**
- Fibrosing alveolitis
- Giant cell arteritis (temporal arteritis)
- Glomerulonephritis
- Goodpasture’s syndrome
- Graves’ disease
- Guillain-Barre syndrome
- Hashimoto’s encephalitis
- Hashimoto’s thyroiditis
- Hemolytic anemia
- Henoch-Schonlein purpura
- Herpes gestationis
- Hypogammaglobulinemia
- 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
- Myositis
- Narcolepsy
- Neuromyelitis optica (Devic’s)
- Neutropenia
- 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)
- Pemphigus
- Peripheral neuropathy
- Perivenous encephalomyelitis
- Pernicious anemia
- POEMS syndrome
- Polyarteritis nodosa
- Type I, II, & III autoimmune polyglandular syndromes
- Polymyalgia rheumatica
- Polymyositis
- Postmyocardial infarction syndrome
- Postpericardiotomy syndrome
- Progesterone dermatitis
- Primary biliary cirrhosis
- Primary sclerosing cholangitis
- Psoriasis
- 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
- Sarcoidosis
- Schmidt syndrome
- Scleritis
- Scleroderma
- 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)
- Uveitis
- Vasculitis
- Vesiculobullous dermatosis
- Vitiligo
- 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)
Toxic Fatigue
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
Common symptoms 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)
What is Lupus?
This is from the Lupus Foundation of America’s web page. You can read more at www.lfa.org.
What is Lupus
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
- Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
- Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.
- Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
- Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
- Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
- It is believed that 5 million people throughout the world have a form of lupus.
- Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.
- Women of color are 2-3 times more likely to develop lupus.
- People of all races and ethnic groups can develop lupus.
- More than 16,000 new cases of lupus are reported annually across the country.
Things To Avoid if You Have Lupus
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.”
(1) Sunlight
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.
(3) Garlic
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.
(6) Echinacea
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.
http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/
Summer Heat and Lupus
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.
Hiring a Doctor
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.
Medical Terminology 101
This is a repeat of this post. I thought it maight be worthy of reading again.
Lingo or Medspeak
As someone who comes from a medical professional background (nursing), I had to learn how to medspeak, or the language of medicine with its roots of latin and long unpronounceable words in nursing school. Since my diagnosis, I have found this knowledge to be an asset to understanding what is going on and the variances of the disease. I have also found that many others have been forced to learn the lingo or medspeak upon their diagnosis as well.
When you are diagnosed with a chronic, incurable disease, the first thing many do is look it up online. This can be good or bad. There may be a lot of information out there, some good and some bad, some not important, some important. Some of the information will scare you to death if you read it. For example, when I was first diagnosed with lupus, one of the first things I read was that the life expectancy was ten years. I should point out that I passed the ten year mark about 9 years ago. Unfortunately, that information is still out there and some may stumble upon it and freak out.
With medical diagnoses and prognosis changing every day, it is no surprise that many people are confused by what they find. I think I would recommend if you are researching your diagnosis, start with the national organization in your country. Most times, they have the most current, accurate information available. Once you have waded through the goldmine of information you find there, give it time to digest and process in your mind.
Another great source is to join a support group in your area. You can find out if there are any by once again checking your national organization’s website or calling your local hospitals and asking. Many times, your doctor may even know of any support groups as well.
One of the best ways to investigate the medical lingo is to take it word for word. When you happen on a word you do not understand, stop and look that one word up individually and then try to make sense of it as a whole. Put it in perspective with the sentence. If there is a sticking point, write it down and ask your doctor. Better safe than sorry.
On the whole, always remember that unless it is from an “official” website, it may not be as accurate as it could be. Caution is to be exercised above all and always consult your physician as well.
Fibromyalgia Basics Overview
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.
Fibromyalgia Causes
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.
Treatment
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.
Related Conditions
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:
- Allergies
- Migraine disease
- Restless legs syndrome
- ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)
- Irritable bowel syndrome
- Lupus
- Multiple sclerosis
- Hypothyroidism
- 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
- Depression
- Osteoporosis
- Multiple chemical sensitivity
- Osteoarthritis
- Rheumatoid arthritis
- Interstitial Cystitis
- Gulf War Syndrome
Down Time
Ok, the down time from the title of this post that probably sprang to your mind is a vacation, holiday or something along that line. How great would that be? To take a break and have some fun!
Sad to day, this down time I am talking about is not that type. When you have an autoimmune disease like lupus, one of the most frustrating symptoms is the “toxic” fatigue you can suffer at the drop of a hat. I know, fatigue is not bad, it just means you have worked hard and deserve to rest, right?
Wrong. The type of fatigue I am discussing is the all consuming, total shut down of your body where you have no control of when and how long you will be down. That is the fatigue I have had for the last five days.
It started innocently enough, just sleeping in one day. Or so I thought. It soon manifested itself into high gear and as of today, I have only been awake a total of about 20 hours in five days! No kidding! I mean, I sit in my chair for a few minutes and next thing I know, hubs is waking me up after several hours of me sleeping. I mean, I wonder when it happened and how. It is like a light switch has been flipped. I am “on” and suddenly I am “off”. It is utterly strange and scary when you have this happen.
I did call my rheumy and he said he thinks it may be both fibromyalgia and/or lupus acting up. He is hesitant to prescribe prednisone in case it is the fibromyalgia. He wants to see me on friday. Great… now another of my autoimmunes is acting up too? So in the meantime, I am taking ultram for the pain and waiting for friday. Some days I think I have forgotten how to feel “normal”.
So, as I sit here, or should I say “sleep” here, I hope things will work out and I can feel better soon. Have any of you had this toxic fatigue?
Related articles
- Sleep and Lupus Patients (jenlynn401.wordpress.com)
- Help for Fibromyalgia-Related Fatigue? (everydayhealth.com)
- When Painkillers Worsen Fibromyalgia Fatigue (everydayhealth.com)
Walk for Lupus Now 2011
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!
Pleurisy
Ok, so this is the other thing I may have as well. I got this information on webmd. I have had this before. It does seem to have a connection with lupus. Go figure. Anyhoo, in the interest of educationg others, I am posting this information. Thanks!
Understanding Pleurisy — the Basics
What Is Pleurisy?
Pleurisy, also called pleuritis, is an inflammation of the pleura, which is the moist, double-layered membrane that surrounds the lungs and lines the rib cage. The condition can make breathing extremely painful. Sometimes it is associated with another condition called pleural effusion, where excess fluid fills the area between the membrane’s layers.
The double-layered pleura protects and lubricates the surface of the lungs as they inflate and deflate within the rib cage. Normally, a thin, fluid-filled gap — the pleural space — allows the two layers of the pleural membrane to slide gently past each other. But when these layers become inflamed, with every breath, sneeze, or cough their roughened surfaces rub painfully together like two pieces of sandpaper.
In some cases of pleurisy, excess fluid seeps into the pleural space, resulting in pleural effusion. This fluid buildup usually has a lubricating effect, relieving the pain associated with pleurisy as it reduces friction between the membrane’s layers. But at the same time, the added fluid puts pressure on the lungs, reducing their ability to move freely. A large amount of fluid may cause shortness of breath. In some cases of pleural effusion, this excess liquid can become infected.
What Causes Pleurisy?
Viral infection is probably the most common cause of pleurisy. Other causes include the following:
- Lung infections, such as pneumonia and tuberculosis
- Other diseases such as systemic lupus erythematosus (lupus), rheumatoid arthritis, cancer, liver diseases, and pulmonary embolism
- Chest injuries
- Drug reactions
Pleurisy and pleural effusion are generally only as serious as the underlying disease causing it. If you have either of these conditions, you may already be undergoing treatment for the underlying disease; if not, seek medical attention immediately.
A pleural effusion can occur without pleurisy. Kidney disease, heart failure, and liver disease can cause pleural effusion without inflammation or pain.
Related Articles
- What is pleurisy? (zocdoc.com)
- Pleurisy Symptoms and Causes of Pleuritis (Lung Lining) (healthhype.com)
Overdone again, oops!
Today had an auspicious start for me. If you have lupus you will understand this. I could not get out of bed. I made it to the bathroom and barely made it back to bed. Sounds ridiculous? It is my reality some days and this was one of them. I ended up sleeping until noon. I made myself get up and into my chair before my granddaughter got here. I don’t want the grandkids to worry about their meemaw so I pasted on my smiling face and pretended I was fine. After she left, I basically collapsed into my chair and have been here ever since. Yes, I get up to do some things but I tell you, this fatigue is for the birds. Have you ever been walking in sand and find you struggle with energy? Imagine that you are on a beautiful beach and in order to walk, you have to sink in a few inches into the sand and then you can walk. Well, that would be easy compared to how I feel today.
I knew I might have the rebound effect from the busy week I had last week. I know the signs, I had them all, and yet I push it out of my mind thinking that this time it will not happen. WRONG. It has happened and while I can pretend for a short time, the reality is that we did not get to the camper tonight (as planned) and instead we are home and while hubs sleeps, I am awake, in part due to the sleeping earlier in the day and in part due to the pain and other associated issues that come when I over do it.
So, this is my venting for today. I know there are those who think I should not discuss the incidentals of my life and how the disease affects me. However, I find it helps me to pour it out on here and then I can relax more and go about the business of life. If that offends some people, then you do not have to read it. For me, it releases the stress and brings a sort of peace. For that, I am grateful.
Related Articles
- What to Expect From Life With Systemic Lupus (everydayhealth.com)
Why I Do What I Do
There are a lot of people out there who may wonder why I do the things I do in promoting lupus awareness. The answer is as complex at times as the disease is. In answer to those that really want to know, I will try to explain it.
I have lupus. I live with it daily. It hurts. It is unpredictable. It impacts my life every day in some way. Now, to why I seem to obsess over it, as some would think, is simple. I feel better about myself and validated by studying it and sharing with others. It gives me a sense of accomplishment and allows me to vent my anger over the things I cannot control. It helps me, plain and simple.
Another reason why I give time to this cause is because it helps me feel like a viable member of society, because it is something I know about, and can help others with. I have already had to stop working because of it but it has not stopped me from wanting to have that sense of pride in doing a good job. Self esteem it is called and I could use some since not working anymore. To feel that, I promote lupus and help others understand about it. I ask organizations for grants and donations. I call businesses and discuss participating in the walk. It helps me to feel some control over lupus and to feel that I am doing something even if I am laying in bed and in my pj’s.
You see, I was always a go-getter, the first one at work and one of the last to leave. I enjoy working. I cannot hold a “real” job anymore because of the progression of this disease and the unpredictability of it all. I mean, who would want an employee who cannot say which days they can work and for how long?
In a perfect world, I could do a job from my bed if necessary. This world, unfortunately, is not perfect, yet anyway, and so I muddle on trying to keep my brain from rotting and pushing myself to do things that bring me satisfaction.
I have decided to work, as it were, at being an advocate for lupus. If that makes me a bad person, so be it. If people think I amd welling on it too much, so sorry. I live with it every day. They don’t. If what I do is causing them to think less of me, then they do not have to read. Plain and simple, I need to feel like I am doing something about this unpredictable disease and this is how I cope. Deal with it, or not, the choice is yours.
Sorry if this sounds harsh but I have been dealing with this for a long time now and it has been bothering me. I live my life as best I can with each day and how it presents itself to me. I will not be ashamed of my feelings or my experience. Thanks for allowing me to vent.
Angie’s Story of Lupus
This is one of my good friends, Angie and her story of her fight with the wolf, or lupus. Please read and learn more about lupus and the things it does to those who have it. Thanks Angie for sharing your story with us! This is her story, in her own words…
Angie’s Story of Lupus
I was diagnosed with Lupus in 1980 at the age of 8. What started as a rash on my face, which my mom thought was poison ivy, would change my life forever. I had no idea at that point what lupus was or what it could do to my body but through the years I would find out just what an ugly beast it would be…
My first flare happened at the age of 16. I developed sever swelling all over my body. At first the GP my parents took me to said that my pants were too tight (after all that was the style cause it was the 80′s). So the next time I went in I wore a dress and said “Are my pants too tight now??” I know I am a smarty pants, but I wanted the doctor to take me seriously and make the swelling go away. At that point I was placed on maxide and sent to a rheumatologist.
Let the testing begin….he checked me over and decided that I had RA. He took my blood and ran more tests and also decided that I had Mixed Connective Tissue disease. Prednisone would be my next drug that I would be placed on at that point. Prednisone made it hard to sleep and the maxide made me pee a lot. But nothing was taking the swelling away. Next I was off to a Kidney specialist. More tests…I had to give a 24 hour urine sample and more blood. He decided that there was nothing wrong with my kidneys at that point. I was then sent back to the rheumatologist and he placed me on plaquinel. The swelling went down eventually, but we never knew what had actually caused it.
Years past, I married and had two boys even though I was told I wasn’t able to have children. By the time I was 25 the swelling had returned. I went to a new GP (my other GP had passed away at this point). After testing me my GP told me that the symptoms I was having were all in my head. She gave me anti-depressants and sent me home.
AS always the beeper went off, I called and was ready to go. But I waited. You could say I took my time getting things in order this time for fear of the let down. During the wait I called a local company of pilots that donate their time and planes to bring patients to other states. From the airport I took a cab to the hospital. I was in my gown, I had my blood work done and AGAIN the donor liver wasn’t a good one. I had to sit in the hospital and wait on someone to come get me and drive me home.
Or maybe I could say the third time was a charm?? Anyway, after waiting on the list for 3 years I got the call I had been waiting for. It was around midnight on February 17, 2001. My beeper went off and I thought to myself “I am tired..I don’t want to call back and get my hopes up…” I then hesitated. My mind was racing…what to do?? Should I call them? Should I even bother? Then I came to my senses and gave myself a mental slap in the face..what was I thinking?? This could be IT!! I woke my husband and called. I then realized that I didn’t have a ride. My car had broke down. So I called the first person that came to mind. My good friend Ed. He made a beeline to my house and drove me to Nebraska in record time. Pretty sure if he had gotten pulled over he would of had a whopper of a ticket!! Laying in the backseat of his car on the way there I was praying..please God let this be it…
This was IT alright. I was prepped, taken to surgery and 14 hours later it was over. At least the surgical part was. I was told that I was within days of death and that my liver weighed over 12 pounds!! No wonder I looked pregnant!
After he left my nurse decided to get me up and see if I was strong enough to walk. I guess they need to do this within 3 days of surgery due to the risk of blood clots. Anyway, the last thing I remember her saying was “Angela!! Are you ok??” Everything went black.
Jennifer’s Lupus Story
My story is a bit like a good mystery. If you keep searching, you will find the answers. It all started way back in the 1980′s. I was working at a local hospital on the night shift. I found I was napping during my breaks and when I would get home, I would sleep all day and up until going back to work. This is not normal sleep. At first, I thought it was because I was working the night shift (11 pm to 7 am). I thought my body was out of whack. On further review, I actually liked working nights and this was something that had developed after some time period of working nights. When my husband told me I needed to see the doctor I did.
I went to my family practitioner (who was out of town so I saw his partner, a friend of mine from school) and after examining me, he took blood work. I returned to find that nothing was out of order, blood work anyway, but the symptoms were still occurring. At this time I had extreme fatigue, low grade fevers and joint aches in my hands and feet. Since this doctor knew me personally, he knew I was really telling him the truth* and ran more tests. One of the tests he ran was the RA Latex test, which looks for rheumatoid arthritis. All of these tests came back normal except for one, the ANA (antinuclear antibodies). It was positive. He then told me he suspected I had lupus and wanted me to see a rheumatologist.
Ok, in the interest of not writing a book here, I will suffice to say that in the course of this diagnosing roller coaster, I have been told by several different doctors that I either have or do not have lupus. Funny but none of them can form a concensus it seems. For years, at least ten years, I had it, then I didn’t. It was confusing. I was still working so I went on pushing forward and when I felt good, I forgot about lupus. When I was not good and in pain, it would rise to the front again.
I will say that I have been diagnosed with fibromyalgia as well, and also raynauds, colitis, osteoarthritis, osteoporosis, corneal erosion, migraines, and neuropathy among the top contenders. I also have asthma and can on occassion whip into a mean case of pleurisy.
In the intervening years, it has been shown that without a doubt, I do indeed have lupus. The frustration of all the wasted time and energy is very real and sometimes can mean life or death to those of us with lupus. If the docs cannot figure it out in time, some have lost their battles. You can read my opinions of doctors at the bottom of this post.
In the end, I have had to become my own advocate. I have had to “fire” doctors and find the ones who were knowlegable and compassionate. I say, it is the patient who is in control here, not the doctors and if you do not advocate for yourself, you can find yourself in a mess of problems, especially when you have a disease like lupus. You are the team captain in the care of your disease.
So, now that I have been diagnosed for some almost 20 years now, I have found a team of doctors who meet my requirements. I am also needing them more lately so I am glad that I found them when I was not in such a need so I could rely on them now. For that, is the most important part of being a survivor, being in control of your care and getting the most care you can get when you need it. Being prepared is always a good thing, and in your health and care, it can be everything!
Footnote:
* In my personal experience, I have found that women doctors appear to be more compassionate to other women than their male counterparts. Some of the male docs I have seen (not all of them, there are good ones out there) have either said or implied that I am just a needy woman looking for attention. WRONG! I am a sick woman looking for caring doctors who can make me live longer and feel better doing it. If you ever feel like your doctor is condescending to you and belittling you, get up and walk out of there and find another one. Life is too short as it is to deal with incomptetent docs who think the minimum of care is acceptable and do not want to explore options or even discuss them with you. I call them GOD101 docs. They think because they went to school for so long, we are obliged to bow down to them. Sorry, but it is my body that is hurting, and my mind that is being challenged by docs like this. Like I said, stick up for yourself, and if the doc will not believe you do not give up until you find one that really listens! There are many wonderful docs out there, male and female, who will do their best to help you! Remember, it is your pain, your disease, and your money!
Walking in a Winter Wonderland
Ok, so the title is a bit misleading. If you see me walking in the snow, odds are it is an emergency of some kind or not by choice. Winter is brutal this year for me. Most of the time, when the cold hits I feel it at least a little. Some days more than others. This winter is different in that every time I go out, I pay for at least a day or so. How? In pain, that awful joint pain that throbs and makes you wish you could just cut off the offending member. Ok, so that is a bit on the dramatic side, I admit, however it does hurt like the dickens and makes you a bit on the crazy side. One of the saying I use at times like this is, “I am a pain, when I am in pain”. Don’t say I did not warn you!
The reason for this title is that here where I live, we are expecting a major snowstorm beginning tonight and going through Monday. Blowing and drifting snow will make it hard to travel as well as the snowfall amounts. So basically, I am housebound. Oh, I have all the necessities of life here, don’t get me wrong. I just mean that I cannot go out into the snow.
You see, I have osteoporosis in my spine from the steroids usage for the lupus. Yes, pick your poison, do you want to live, albeit with fragile bones, or just wing it and hope for the best? Well, I went with the steroids and they really do help. They also really have serious side effects, like osteoporosis among others. That means when it gets slippery outside, I stay inside. I like my hips and spine just the way they are thank you. One slip and fall and I could be laid up for a long time!
So, when you are out and about in the winter wonderland, remember to enjoy it. There are those of us who would love to be out there and having snowball fights, making snow angels and such but we know our own fragilities and watch from the windows. We do not want pity. We just want understanding and empathy. It is not easy being different and watching others have fun. The alternative though, is the possible fracturing of bones and more pain. We want to survive to see another snowfall, watch another grandchild grow, and feel alive. In the future, please be more respectful of us. We do not want to be different, we just are.
Have You Heard….
Today I want to share something with you all, something that means a lot to me. For quite some time now I have been posting on this blog and hoping to educate others about lupus and other autoimmune diseases. That is the reason for this blog, along with giving me an outlet to express my struggles with this disease and also my triumphs.
The reason I have the title above, is that I want to ask a question, “Have you heard about lupus?” Most will think, “yeah, I have” but can you tell me some points you may have learned from this blog? This is not a test, but look over the questions below and see how much you have learned from reading this blog. If you are unsure of an answer, the answers appear at the bottom of the post.
Thanks to everyone who reads this blog (and there are many of you out there). I hope I can make this blog more informative as I go along. Now, on to the questions…
Have you learned how long it takes to get a diagnosis of lupus (on average)?
Do you know what the life expectancy is for lupus patients?
Can you name the three types of lupus?
Do you know what part of the body lupus affects?
Is there a specific blood test for lupus?
Do you know the different drugs that can be used to treat lupus?
Answers:
10 years average for a diagnosis; life expectancy is the same as normal people on average, although some will not have this result; systemic, discoid and drug induced are the three types of lupus; lupus can affect almost any part of the body; no, there is no one test that can tell you if you have lupus, but an overview of symptomology and tests can prove the diagnosis; there are many and range from over the counter nsaids to steroids and chemotherapy agents.
Kathy’s Story of Lupus
I asked some friends of mine, fellow autoimmune patients, to tell their stories so I could post them. My thought is that our stories are all different, yet similar as well. It can help others to know there are many of us out here, living our lives and helping others.
I will be posting these stories, with each persons permission, to this blog to help others see that this is something that is needing awareness. So many people suffer from these diseases and yet a lot still do not even know what these diseases are!
I hope you will enjoy reading Kathy’s story. She wrote this story for the Lupus Magazine but it is reprinted here by permission of Kathy herself. Enjoy and learn more about it. Be sure to check out Kathy’s website as well. I know I learned a lot by doing so.
Meet someone with lupus -
Kathy Patterson, Founder of the Lupus MCTD Foundation (Lupus Mixed Connective Tissue Disorder Foundation) First Published in The Lupus Magazine
April 1976… I was a teenager growing up in Modesto, CA. My heath had been fine except in the fall & winter when I would come down with pneumonia, which my parents always blamed me for – I would wash my hair and walk to school with it wet!
One day in April, I came home from school, anxious to to play tennis with my friend at the time, Steve. As I walked inside my parent’s home to change out of my school clothes and into shorts, I started walking in circles, looking at the ground… It appeared to be lifting and changing *patterns* like I was falling in slow motion. I recall the sound of my name being called out by my sister Debby, “Kathy! Kathy!” I then fell to the ground and it felt like electricity jolting through my body. It felt like a large knife in my back, the feeling of falling off a mountain and this was a Grand Mal seizure I was having.
The ambulance whisked me away to Memorial Hospital where I would begin my life as I know it now – hospitals, doctors, tests and the whole gambit of not knowing what caused this seizure. “Unknown origin” is what my Medic Alert bracelet said. I had to wear that for years!
Dr Smith the Neurologist, who I’ve been a patient of since 1975, is still my Nuero to this day. The last scan I had of my head shows scarring on the right side of my brain. That was about four years ago. It could be scar tissue from being hit over the head accidentally in high school while practicing golf swings with a 9 iron. All other scans through the years showed nothing. If I have any different or increased symptoms I am to return , repeat the scan and check for advancing of this scarring.
I was put on Phenobarbital and Dilatin which would make me so sleepy along with the fatigue I was already experiencing in school, I would cut class and hang out at Downey Park and sleep in the sun. It felt so warm, so comfy to just sleep!
It was at this time I met my future husband and he would hang out with me. I never told him I had seizures and we married right after I turned 18. Four months into our marriage I had a seizure, a repeat of the first one. I was walking inside my Mom’s front door and down I went. As always, I would clench my jaws , and sleep for 4-5 hours after the seizure. I’d have a headache from hell afterwards and the top of my head would hurt and my jaws would just ache. It was during that seizure, my new husband found out about the seizures – something I was terribly embarrassed by.
I had many seizures during my pregnancy with my first born, my daughter. But the seizures tapered off then female related health problems started after I gave birth. The typical PMS, heavy periods, migraines from hell that caused many trips to the ER for shots of pain meds, relaxers, anti nausea medication, etc…. According to all the doctors, these symptoms were all related to my menstrual cycle. But living EVERY MONTH in hell??? My bones would hurt so bad in the pelvis area, I’d literally put rice socks *down there* to help my bone pain. The pain went to my knees, it was unreal!
At the time my husband didn’t want me working but I promised him I’d work four hours a day and I’d still be able to clean our home, cook dinner and pick the kids up from school. So I started cleaning houses for other people.
(Many Lupus MCTD – Lupus Mixed Connective Tissue Disorders – patients have been house cleaners. And according to the Mayo Clinic website, there is a study showing exposure to cleaning products enhances the symptoms of MCTD. I still was not diagnosed yet. See: Lupus Risk Factors )
I continued cleaning homes and wearing every wrist guard you could imagine after being told I had inflammation and was prescribed anti inflammatory meds. I was in my 20′s when my oldest sister Sheryl came down with a muscle wasting disorder called Polymyositis. She passed away within a few months of being diagnosed. That was the beginning of my quest to find out why she died – what was wrong with her? Why was she sick?
Little did we know, but our other sister Debby had a blood disorder called Aplastic Anaemia. She often seemed to have either platelets or IV infusions. Then she had a wound that would not heal and she would have to stay inside a special room at the hospital where she was fed extra O2 to help heal the wounds.
We each told our doctors about what the other sister had or had been diagnosed with.
During my 30′s, I’d seen every Orthopaedic doctor there was for pain in my arms, knees, ankles and fingers – only to be told, “It’s inflammation… take an anti inflammatory pill and wear your wrist guards.” But then my right hip pain & weakness started. Again nothing was wrong. I mean, I’ve even been to foot doctors because others just passed me back & forth! From my neck, I have bi-lateral herniated disks and spondylolisthesis in S-1 L5 of the lower spine. Also in my spine, I have a Spina Bifida Occulta (meaning a hole on my spine did not close up when I was born and is known to cause pain and leg weakness). Again no biggie, millions of people have that. The pain and weakness would stop if I quit walking.
I was finally sent to a Rheumatologist and and Endocrinologist. I had a positive ANA and along with my symptoms (inflammation, joint pain, hair loss, fevers, etc) I was diagnosed with Lupus, but another doctor said it was more MCTD. It was then that they noticed I had no pulse in my right ankle. I was eager to learn more… now I had a name for my health problems. But why was I sick too? And with different symptoms?
On the internet there was the AOL medical boards. I wanted to ask questions, but I was extremely shy. I read the boards for two years before I ever posted my first question. I was terrified to type a public message, but reading what all those people had been through was like reading my life story. I got to ask the one question that had been bothering me… “Back in the 1970′s I smoked pot, could that make me sick today?” Immediately, I had ladies emailing me saying they were wanting to know too – that if back in the days, when we were young and we partied , could it have affected us? I mean, could it have been all that THC?
Thus, I began forming friendships with some of the most wonderful people that were so much like me! I felt like I was *one of them* – we were normal Moms and Grandmoms that were sick most our life. Some days I’d just lay on the sofa, no energy to get dressed and the pain was unbearable at times. But when I had good days, I’d be sitting at my computer, reading and absorbing all the information I could on autoimmunity.
After a while the AOL boards were taking a turn south and I saw a better need for group discussions, so five years ago I created: http://www.LupusMCTD.com It was a forum accepting questions 24 hours a day and there was always someone online – after all we don’t sleep well! I created the first live Audio/Video chats to make us more real and to see each patient we were talking to.
I took it a step further and created a radio station giving interviews and promoting Lupus MCTD awareness. Now that Facebook and The Lupus Magazine has taken off, and so many are *hanging out there* I no longer spend all day researching and posting current medical news – something I worked hard at and was proud of.
Now the word is out on Lupus and MCTD, I’m not the lone person in search of support and understanding. We are all in this together ’till there is a cure.
As for my current health, my newest major health crisis is Arteriosclerosis. My Fathers Mother and her Mother both died from complications related to it (It helps to gather family members’ death certificates to tell your medical history to your doctor). But there is a new study out on Lupus and advancing of Arteriosclerosis also known as hardening of the arteries. Last month I had a test to locate my blockages and surgery will be scheduled. I will undergo a total reroute surgery to improve blood flow and to save my toes which remain dark plum/black in color.
I am seeking other LupusMCTD patients to communicate with who are also going through this. As long as I am able to, I am available to offer help, hold meetings and offer emotional support – I understand what you are going through!
* Kathy 51, is currently single and is the Mother to Jennifer 32 and Mikie 31, Grandmother to Alex 6 and Emily 4. She is a native from Anderson, Indiana, now residing in Riverbank, CA.
Lupus MCTD Foundation
Check out the Lupus MCTD Flight of Hope Bracelet Project – Raising funds for the ALR – where all funds go directly to lupus research.
My new ally in this lupus fight
I have found a way to feel better, or at least a little better than normal these days. My normal for the past few months has been a flare with no end in sight. Painful and depressing. For the last few days though, I decided to try a new trick against the wolf. What is it?
Each and every day for the last few days I have made myself lay down for an hour or so and take a nap. Yup, a nap. Guess what happened? Well, I have always felt at my best right after waking, before the pain gets going full tilt. By taking a midday nap, it makes my body feel as it does in the mornings, and I get decently lower pain. Will this keep up? I do not know. For now though, I will take the naps and see if wolfie will lay off of me for a bit.
I wanted to share this because it might help someone else out there too. I figure, like most of us with lupus, that it is worth a shot to try it. Believe me, we try all kinds of things in an attempt to get this disease under control. This is an easy one to try though. Happy napping!
Depression and lupus
Once again, I found a great article that discusses depression in lupus patients. This information is from the website:
Lupus Disease Activity May Cause, Worsen Depression
- Joan Arehart-Trechel
Next Section
Both negative life events and lupus disease activity may be capable of contributing to major depression in individuals with lupus.
Fabiano Nery, M.D., a Brazilian psychiatrist who also completed a residency in internal medicine, has long been fascinated by the interface between psychiatric and medical illnesses—and especially by the interface between depression and the autoimmune disease systemic lupus erythematosus.
In 2004, while affiliated with the University of Sao Paulo Medical School, he designed a study to get more insight into possible causes of depression in lupus patients—say, stressful life events or damage to the brain inflicted by lupus. He was particularly interested in the latter possibility since lupus, unlike the autoimmune disease rheumatoid arthritis, is known to be capable of damaging the brain. The brain involvement can be either widespread or focal and may involve inflammation of small blood vessels or interaction of autoantibodies with antigens on neuronal cell membranes.
Seventy-one subjects with lupus were evaluated for the presence of major depressive disorder, the intensity of depression, life events during the previous six months that had had a negative and pronounced impact on their lives, and lupus disease activity. Other health information about the subjects, such as medication use, was also collected.
Sixteen of the 71 subjects (23 percent) met DSM-IV diagnostic criteria for a current major depressive disorder. This finding did not surprise the investigators since other studies have found high rates of major depression in lupus subjects.
Prednisone, a medication used to treat lupus and known sometimes to produce depression, did not seem to explain this high rate of depression because the amount of prednisone used by subjects with and without depression was essentially the same. Yet nine of the 16 subjects with major depression reported having experienced at least one major negative life event during the previous six months, compared with 13 of the 55 subjects without a major depression—a statistically significant difference. This finding suggested that potent negative events might have precipitated the depression. Also, the severity of subjects’ depression was associated with having experienced negative life events, which likewise strengthened the argument that negative events could trigger such depression.
Subjects with major depression, however, had more severe lupus disease activity than did those without a major depression, with a trend toward statistical significance. This finding implied that lupus disease activity might have triggered the depression, and another result bolstered this possibility: Even when stressful life events were taken into consideration, there was still a highly significant link between depression severity and disease activity.
Thus, it looks as if both negative life events and lupus disease activity may lead to major depression in lupus patients, Nery and his group concluded in their study, which is in press with Comprehensive Psychiatry.
Nonetheless, as Nery told Psychiatric News, “if a lupus flare-up can truly trigger depression, then there is still the question of whether the depression is due to brain damage by the disease or whether the patient becomes depressed in reaction to the disease. I would say that both can occur, probably at the same time in the same patient.
“My plan,” he continued, “is to use neuroimaging tools to determine whether specific brain areas associated with mood regulation are damaged during a lupus flare, and try to use these tools to disentangle factors such as psychosocial stress and biological and psychological factors in the development of mood disorders.”
When asked whether these findings have any practical implications for clinical psychiatrists, he replied, “Yes, absolutely. When evaluating depressed patients with systemic lupus erythematosus, consider that the disease activity is an important risk factor for the worsening of the depression.”
The study was funded by Fundacao de Amparo a Pesquisa do Estado de Sao Paulo and Conselho de Desenvolvimento Tecnologico e Cientifico.
An abstract of “Major Depressive Disorder and Disease Activity in Systemic Lupus Erythematosus” can be accessed atwww.sciencedirect.com> by clicking on “Browse A-Z of journals,” then “C,” then “Comprehensive Psychiatry.” ▪
UPDATE ON BENLYSTA
I received this update on benlysta in my email from the lupus foundation of america. Important to read for all of us lupies!
Food and Drug Administration to Hold Hearing on BENLYSTA®
On November 16, 2010, the Food and Drug Administration (FDA) will hold a hearing to discuss the application to approve BENLYSTA® (belimumab) as a treatment to reduce disease activity in adults with active, autoantibody-positive lupus.
If approved, BENLYSTA® will be the first drug to be specifically developed for lupus and the first new treatment for lupus in more than 50 years.
While BENLYSTA® may not be appropriate for all people with lupus, having a new approved treatment for lupus would be a significant step forward and would provide a pathway for future approval of the arsenal of therapies required to manage a disease as diverse and complex as lupus.
Make your voice heard! It is important for the FDA Committee to have a clear understanding of the diversity of the disease and how it impacts people with lupus and their families. You can help by sharing your story about why new treatments are needed and the hope for new treatments in the future.
Email your short statement to Yvette Waples at the FDA, Yvette.waples@fda.hhs.gov by November 1, 2010.
Lupus Nephritis
This information is from the following webpage: http://kidney.niddk.nih.gov and discusses the basics of kidney involvement and lupus. It is informational and just shows the basics. If you have questions, please discuss them with your doctor.
What is lupus nephritis?
Lupus nephritis is an inflammation of the kidney caused by systemic lupus erythematosus (SLE), a disease of the immune system. SLE typically causes harm to the skin, joints, kidneys, and brain.
The causes of SLE are unknown. Many factors may play a role, including
- gender—SLE is more common in women than men
- heredity—a gene passed down by a parent
- infections
- viruses
- environmental causes
What are the symptoms of lupus nephritis?
Lupus nephritis may cause weight gain, high blood pressure, dark urine, or swelling around the eyes, legs, ankles, or fingers. However, some people with SLE have no overt symptoms of kidney disease, which must be diagnosed by blood and urine tests.
How is lupus nephritis diagnosed?
Diagnosis may require urine and blood tests as well as a kidney biopsy.
- Urine test: Blood or protein in the urine is a sign of kidney damage.
- Blood test: The kidneys remove waste materials like creatinine and urea from the blood. If the blood contains high levels of these substances, kidney function is declining. Your doctor should estimate your glomerular filtration rate based on your creatinine score.
- Kidney biopsy: A biopsy is a procedure to obtain a tissue sample for examination with a microscope. To obtain a sample of your kidney tissue, your doctor will insert a long needle through the skin. Examining the tissue with a microscope can confirm the diagnosis of lupus nephritis and help to determine how far the disease has progressed.
How is lupus nephritis treated?
Treatment depends on the symptoms and test results. Medicines called corticosteroids can decrease swelling and inflammation by suppressing the immune system. Additional immunosuppressive drugs related to cancer and drugs used to prevent rejection of organ transplants may also be used. In severe cases, your doctor may prescribe cyclophosphamide (Cytoxan, Neosar) or mycophenolate (CellCept). Newer experimental treatments include a drug called rituximab (Rituxan).
You may need one or more medicines to control your blood pressure.
You may need to limit protein, sodium, and potassium in your diet.
The U.S. Government does not endorse or favor any specific commercial product or company. Trade, proprietary, or company names appearing in this document are used only because they are considered necessary in the context of the information provided. If a product is not mentioned, the omission does not mean or imply that the product is unsatisfactory.
For More Information
Lupus nephritis is also classified as a glomerular disease. For more information, see the National Kidney and Urologic Diseases Information Clearinghouse publication Glomerular Diseases.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases has online publications about Systemic Lupus Erythematosus and The Many Shades of Lupus (easy-to-read).
More information is also available from
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institutes of Health
1 AMS Circle
Bethesda, MD 20892–3675
Phone: 1–877–22–NIAMS (226–4267) or 301–495–4484
Email: niamsinfo@mail.nih.org
Internet: www.niams.nih.gov
Lupus Foundation of America, Inc.
2000 L Street NW, Suite 710
Washington, DC 20036
Phone: 1–800–558–0121 or 202–349–1155
Email: lupusinfo@lupus.org
Internet: www.lupus.org
You may also find additional information about this topic by visiting MedlinePlus at www.medlineplus.gov.
This publication may contain information about medications. When prepared, this publication included the most current information available. For updates or for questions about any medications, contact the U.S. Food and Drug Administration toll-free at 1–888–INFO–FDA (1–888–463–6332) or visit www.fda.gov. Consult your doctor for more information.
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National Kidney and Urologic Diseases Information Clearinghouse
3 Information Way
Bethesda, MD 20892–3580
Phone: 1–800–891–5390
TTY: 1–866–569–1162
Fax: 703–738–4929
Email: nkudic@info.niddk.nih.gov
Internet: www.kidney.niddk.nih.gov
The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services. Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.
Publications produced by the Clearinghouse are carefully reviewed by both NIDDK scientists and outside experts.
This publication is not copyrighted. The Clearinghouse encourages users of this publication to duplicate and distribute as many copies as desired.
