I have read this many times before but found it again and thought I would share it. It is written so well and expresses how lupies feel in general… I did not write this although it fits me well…
A letter to be shared with friends and family
by Theresa Stoops in Florida
WHAT YOU SHOULD KNOW ABOUT ME
My pain – My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.
My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My forgetfulness – Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.
My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.
My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.
My uniqueness – Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me,
I have shared these thoughts with many “Lupies”, as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine — Do not judge them as you may Not know their Inner pain.
==== And always remember I LOVE YOU! ====
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.
Hello everyone! I hope you are all pain free and doing good.
The title of this post says it all about the last few days. I am still sick with the flu. Fevers, chills, dry cough, runny nose, headaches and blah. Please do be extra vigilant to keep from getting this flu!! It is a misery and since those of us with autoimmune diseases are usually on immunosuppressants of some sort, hyper vigilance is called for. I thought I was being vigilant yet here I sit, three weeks into it and no relief in sight.
So I have been a bit grumpy, to say the least. I have several reasons. First, I am sick. No explanation needed there. Second, I have been sick for three weeks now. That will make you grumpy too. Third, after waiting over a week to see the PA at my GP’s office, I was not looked at for the flu, but instead they went by what I made the appointment for ONLY. That was acid reflux. Yep, I sat at the doctors and was told I would only be seen for what I had made the appt. for, nothing more. If I needed to be seen for the flu, I needed to make another appt. Same thing for my foot. Ok, the foot I can understand but the flu??? Oh, and since two immediate family members recently had cancer in the uterus and ovaries, I actually asked for an order to get ct scan done just to be safe. I mean, she was writing an order for a chest X-ray so why not? I told her why I wanted it. I was told that would be a entirely new appt and she would not write those orders for me! So, if I needed all these things looked into, then three more appts. would be needed. Seriously!!!
Now having worked in the medical field (nursing), I was flabbergasted!! I understand not addressing my foot issue, but to tell me no orders would be written for tests that I could get done at the same trip to the hospital was absolutely beyond my comprehension. Click, click print and done. Nope. When I said how much easier it would be to do them all at the same trip I was told ” people have to get them done at different times all the time”. Not exactly those words but actually ruder.
So, I have been toying with the idea of changing my doctor (gp) for a bit lately and today tipped the scale. I waited to see them even though I was sick, and have lupus, and yet I could not be treated for anything other than acid reflux!!!!
See ya family practice I have gone to for some thirty years!!! I will find one that actually treats their patients with compassion and caring!!! I have had enough!!!
First, I am on a VERY fixed income. Second, the hospital is in Dayton Ohio so I ration my gas and would like to make it all in one day. Third, I am a human being that typically will NOT go to the doctor UNLESS I am quite ill. You could even say slightly non compliant. If I make an appt. it is not a little thing to me. If I could afford all those visits in the first place, I would not wait until I have to be seen.
So, I got a handout about gerd, an order for a chest X-ray, and $83.00 poorer for wasting my time. This has upset me so much I came home and cried.
Now on to find a new doctor. My daughter told me of the one they see and I am thinking next month I can set up an appointment and see how it goes. I cannot afford another doctor appt this month. Sucks to be me right now but I will survive!
In the meantime, I can always go to the ER where they treat me with more respect and dignity then my family doctors “professionals”.
Well I am still alive and kicking here in Ohio. I must say though, this flu sucks. I have gone from vomiting and diarrhea onto fevers, chills, aches and coughing with sinus pressure. Yeah, it sucks to be me right now.
No matter that though. I want to ask that all my readers do me a favor please. Actually two. First, please pray for my friend Brian and his wife. They live in Tennessee. Their new baby developed an issue and while at the hospital, it was discovered there is a heart issue. The baby was airlifted to children’s hospital in cincinnati and is scheduled to have surgery. This sweet couple need all the help and prayers they can get! On Facebook, you can read their story at the page, “Lucas Strong”. Please keep this family in your prayers!
Second, I have another friend whose grandson has a rare form of cancer. He had a none marrow transplant and has declined steadily ever since. He is soon now to have no more pain but his family, including my friend who is his grandmother, are experiencing emotionally devastating pain as they let him go. Ironically both children are at cincinnati children’s hospital.
So I ask for prayers for these two families who are dealing with so many different issues right now. You don’t need their names, since I know God knows who they are. I thank you.
As I write this I am watching the snow plow clearing our road. We got seven inches of snow a few days ago and have received around three inches so far tonight. I think our mild winter last year is resulting in the snow of this year.
I will be seeing two doctors in the next week and a half. Hopefully I can get this flu over with and move forward again. I just have not been well and that’s why I have not been on here.
Stay safe and warm out there!! ~Jen
Thanks to another blogger for this post. I reposted it because it is so very true and if this helps one person out there, it will be worth it. http://betweenyesterdayandtoday.wordpress.com/2012/05/07/emotionally-and-verbally-abusive-passive-aggressive-men/
Do you find your partner losing his cool over things that are out of your control?
Does your partner blame and punish you for things that happen to him even though you had no role in it?
Does your partner bring up past issues to deflect you from the issue at hand?
Does your partner make accusations about you that have no truth to them?
Does your partner resort to humiliation, cursing and threatening you? Does your partner mock you, parrot you and twist your words?
Do you find your partner getting sullen suddenly and seem depressed or angry about small insignificant events?
Does he ignore the real issues that need attention and ignore them completely?
Does your partner complain constantly of you not appreciating him? Is he or never satisfied no matter how much you try to please them?
Does he or she often curse life or others as being responsible for all their problems?
Do you find that he never takes up the responsibility of anything that happens to them?
Do you find your partner creating a world of his own and even if you show him a positive side of any matter, they tend to believe only what they perceive as ‘truth’?
Does he bring up past problems, difficulties and circumstances that he claimed to be over or had forgiven, only to throw them in your face when there is an arguement or he is in a rage?
Does he try to belittle you by bringing up things that you told him in confidence, and then use them against you to make you feel shame and guilt?
Does he show his pride in you for something you have accomplished, only to find fault in the same thing when his mood switches or you are in a disagreement
Does your partner use vulgar, demeaning language towards you?
Superiority—He is always right, has to win or be in charge. He always justifies his actions so he can be “right” by blaming you or others. A verbally abusive man will talk down to you or call you names in order to make himself feel better. The goal of an abusive man is to make you feel weak so they can feel powerful. Abusers are frequently insecure and this power makes them feel better about themselves.
Manipulates—Tells you you’re crazy or stupid so the blame is turned on you. Tries to make you think that it’s your fault he is abusive. Says he can’t help being abusive so you feel sorry for him and you keep trying to “help” him. Tells others you are unstable
Mood Swings—His mood switches from aggressive and abusive to apologetic and loving after the abuse has occurred.
Actions don’t match words—He breaks promises, says he loves you, and then abuses you
Punishes you—An emotionally abusive man may withhold sex, emotional intimacy, or plays the “silent game” as punishment when he doesn’t get his way. He verbally abuses you by frequently criticizing you.
Disrespect – Shows absolutely no respect for you, and women in general. He will put on a mask for the outside world, his friends and family to make himself look like the good guy, the all around nice guy, the helper, the boy-scout. But in reality, he is none of those things. He is a women hater and treats you like you are worthless.
Verbal abuse takes on many forms including criticizing, insulting, degrading, harsh scolding, name-calling, nagging, threatening, ridiculing, belittling, trivializing, screaming, ranting, racial slurring and using crude or foul language. Disparaging comments disguised as jokes and withholding communication are also examples of verbal abuse.
The passive aggressive never looks internally and examines their role in a relationship problem. They have to externalize it and blame others for having shortcomings. To accept that he has flaws would be tantamount to emotional self-destruction. They live in denial of their self-destructive behaviors, the consequences of those behaviors and the choices they make that cause others so much pain.
You will find, that even if you become sick, even with a chronic illness or god forbid terminal, the passive aggressive man seems to show fake compassion, no empathy, and will talk to you superfically and never be a comfort. He will not be your rock in your time of need. He will not inform himself about your disease like most normal husbands would do. He will not know what to tell other people if he is asked about you, becaus he wil not bother to find out for himeself. It is as though he puts on an act, tries to be the concerned husband, but in reality, he is resentful of you for becoming ill, and he will still expect you to carry the burden of the relationship even as you are suffering from your disease.
There can be a number of causes behind the development of passive aggressive traits in individuals. The most probable one is the growing up in a family or social atmosphere, where not much importance is given to an individual’s needs and wants, where expressing personal desires is not accepted and is taken as a selfish and self-centered nature. He would have parents that were overbearing and treat him like a child way into his adulthood. They have made decisions for him such as employment, relationships, education and so on. He is usually a mamas boy and is more comfortable being around women then he is around men. He is comfortable coffee clutching and gossiping. Being around his peers, other men, he feels inferior, insecure, that everyone is doing better then him. This is usually his own guilt, although he will never ever admit it. He knows he is a an inept husband and provider for his family.
Such an upbringing, plants a subconscious feeling in the individuals, like desiring something which they want is unfair and unacceptable. In such situations, children contrive to protect the relationship with their family members and friends which they cannot afford to jeopardize. As the child grows to be a man, out of a deep rooted fear, he will stay loyal to his parental family while putting his wife/partner down just to make them happy. He will likely be disloyal to his own wife and hurt her just to please the people that raised him, regardless of the devastating circumstances this will have on his wife. He will allow their disproval to come before the women he loves, their opinions become more important to him then the opinions of his wife, the women he loves. This is a disturbing picture, this is not a man by any means.
People in relationships have conflicts. But there is a right way and a wrong way to resolve them, and no matter what the other person does, no matter what a person’s “issues” are, abuse is the wrong way. Emotional cruelty and abuse are choices. A man can choose to be abusive or choose to be non-abusive; he can choose to be honest and straightforward, or passive-aggressive and covert, and no matter how hard a man tries to blame his partner, there is no justification for abuse.
If you are a victim of emotional abuse, you have to wake up to the fact that this person *does not love you* and probably hasn’t loved you for a very long time, if ever. Because the truth of the matter is, someone who can be emotionally cruel, malicious, and compassionless with people who have given him their love and their trust, is so absorbed in self-hate that he is incapable of loving himself, much less anyone else. What the abuser feels is obsession, not love.
If you find that you are having to explain the basics of respect and courtesy to a partner – if you are finding that he just DOESN’T SEEM TO GET IT, when you try to explain why his behavior or actions were disrespectful – run far and run fast. People who are capable of maintaining and contributing to a loving, supportive, healthy relationship, DON’T need to constantly have the concepts of respect, compassion, and consideration explained to them.
Just because he admits his behavior (and WATCH – some abusers are VERY good at acknowledging they did something without apologizing, or admitting there was anything WRONG with the behavior.), does NOT mean he is willing to change it, that he will not repeat the behavior, nor that he even believes he did anything unacceptable, hurtful or wrong. DO NOT take admission of an act as a sign of integrity, acceptance of responsibility, a show of remorse, or an indication of genuine caring, unless you see EXPLICIT behavior that demonstrates it.
It is NOT wrong, or unhealthy to want someone to love and care about you and care for you, and to want to reciprocate. It is only through this kind of openness that we can acheive true intimacy with another individual. And two emotionally healthy people, CAN do this without becoming co-dependent. Unfortunately, abusers violate the trust that this kind of relationship requires, and are incapable of true intimacy. They want you to be dependent. People who ARE capable of genuinely loving you in a healthy and safe way, DON’T WANT TO HURT YOU, and do not DELIBERATELY DO THINGS TO HURT YOU. They don’t play on your insecurities and they don’t wage psychological warfare on you. They don’t blame YOU for all the relationship problems, and they don’t fabricate problems just so you can be the scapegoat.
People who love you will treat you with respect, consideration, courtesty, honesty and compassion. If you are with someone who matches the abusive behavior that you just read, get help. The sooner you wake up to the fact that the relationship is unhealthy, and move on, the sooner your life will improve.
I just posted this as my facebook status because, well, I heard there are those who are questioning my doctors in the care they are giving me. So, in the spirit of letting them know how I feel, here is my retort:
Ok, this is for the people who think I should not take so many medications and that the medications are the reason I am so sick, well, think again! When you get a medical degree and can tell others what they should take, then I will listen to you. Until then, I prefer my specialists like a neurologist, an opthalmologist, a rheumatologist, and others who form what I call my “team of doctors”. Yes, they all share what is going on with my disease. Yes, they all know what meds I am on. And guess what? They all agree to the care I am receiving. So, if you want to discuss my disease and care, please have the decency to call me and get the facts first before judging me! Thanks!
Seriously, that is what I said. What do you think? Too hard on them or too easy?
Part 5 of the series on neuropathy from the Mayo Clinic website.
By Mayo Clinic staff
Complications of peripheral neuropathy may include:
- Reduced feeling. Because parts of your body may be numb, you may be less likely to feel temperature changes or pain. This can make you more susceptible to burns or skin trauma.
- Infection. Make sure to check your feet, as well as any other areas lacking usual sensation, regularly so that you can treat minor injuries before they become infected. This is especially important for people with diabetes, who tend to heal more slowly.
Part 4 of this series from the Mayo Clinic website.
By Mayo Clinic staff
Peripheral neuropathy risk factors include:
- Diabetes, especially if your sugar levels are poorly controlled
- Alcohol abuse
- Vitamin deficiencies, particularly B vitamins
- Infections, such as Lyme disease, shingles (varicella-zoster), Epstein-Barr, hepatitis C and HIV/AIDS
- Autoimmune diseases, such as rheumatoid arthritis and lupus, in which your immune system attacks your own tissues
- Kidney, liver or thyroid disorders
- Exposure to toxins
- Repetitive physical stress, possibly from occupational activities
English: A photo of a cup of coffee. Esperanto: Taso de kafo. Français : Photo d’une tasse de caffé Español: Taza de café (Photo credit: Wikipedia)
Coffee is a unique thing to each person. When I was younger, it would wind me up and send me out to face the world with a bundle of energy. It was my energy! As time has progressed along with my age, I have found that my reactions to coffee have changed as well.
Coffee now is not the energy maker it was in my youth. I have found it to be the opposite now. I can drink a pot of coffee and go to bed and sleep. I mean, sleep really well. It seems that as my body changed with age, I have developed to the point that stimulants are no longer stimulants to me, they act as opposites now. Crazy, huh?
Conversely, when I take a narcotic pain medication, it reacts like a stimulant to me. I become energetic once the pain subsides. I am not sure how or when it happened, or even why, but I accept it as just being my unique self with strange body reactions. To think it all started with that first cup of coffee…
Since I first posted “This Infernal Eternal Itching” I have been amazed at how many people out there, with and without lupus, who experience the same thing. From what I gather, their doctors are at a loss as to why it happens. Mine are.
My itching comes and goes. There are times when I feel like I could scream because of the itching and then there are weeks or even months go by and I do not have it at all. It would be nice if some doctor somewhere could figure it out. For those of us who suffer, we find new ways to deal with it. Please consult your doctor if it persists. They may not have the answer, but they could help you to get relief.
I will say that it is nice NOT to be alone with this. I used to think it was all in my head, and that I was crazy. I now know that itching seems to be consistent among some of those with autoimmunes. I hope that you each can find relief! I am trying to myself. I do have a question for those who experience this: Do you find it gets worse at certain times of the year? Personally, I don’t see a correlation in mine but it does raise the question.
I found this fascinating article that discusses tactics to use when confronted with the passive agressive person/mate. Amazing information! I got this from http://www.ezinearticles.com. Enjoy the read!
Fight Back Passive Aggressive Actions With 5 Guerrilla Tactics!
It is very easy to discover the inherent pain that a relationship based on passive aggression brings. It is important that you identify exactly the behaviors that trigger your confusion, isolation or anger, and ascribe them to his peculiar way of doing life in general. You are not responsible for his attitude, learned in his childhood.
A passive aggressive intimate connection is a sad paradox. It is as if, in the middle of our constant search for love, companionship and support, we humans encountered a huge blockage that says: “I will pervert and block all your steps towards reaching love, in such a way that it will be impossible to discover who did it and how it was done…all the way I’m professing my love and devotion for you.”
This is the challenge presented by the passive aggressive person’s constant sabotage, which has the objective of deliver a permanent resistance to any deep intimacy, trust and union. You would say, “This is contradicting any search for love…! How can it be that in the middle of this warm relationship building we encounter such a strong resistance that the same love gets destroyed?”
It’s difficult to accept, but some people are so scared of being deeply loved, that they will unconsciously frustrate all steps towards intimacy with passive aggressive behaviors. So, you are warned. And probably you know already the multiple ways in which this passive aggression will rear its ugly face. Perhaps if we review some of them, we can begin to offer an strategy to understand how it happens and so reduce the damage. Let me count the ways…
1.- Behavior always focused on negative aspects of life: The basic attitude here is that life is a miserable experience and there is no joy to be expected, so we are victims of a cruel destiny. In this view, others including you are responsible for the circumstances he is in, and little can be done to change. In order to continue piling up misery and rejection, positive aspects are thoroughly ignored or rejected.
TACTIC NUMBER 1: To counteract the effects of PA behaviors you need to be sure of your own accomplishments, and be proud of them. To keep the mindset of victim hood, your partner will diminish or ignore them, Remind yourself constantly about your good qualities, before it’s too late and you begin to accept your partner’s misery framing as the mirror with which you perceive yourself. Catch yourself diminishing your merits and tell yourself to Stop! Do some breathing exercises and tell yourself how good you are at what you do.
Keep your good friends around, so they can also remind you of your good qualities.
2) Behavior that induces a constant confusion in your brain The main problem with passive aggressive behavior is how to identify the unhealthy interaction. This is difficult because your mind needs to observe and evaluate the situation while it is simultaneously being confused by a barrage of contradictory messages. He’ll say his actions stem from good intentions and the want to provide support, while at the same time he abandons any commitment at the least opportunity. Moreover, he is always going to rationalize his hurtful behavior, producing more confusion in your brain.
TACTIC NUMBER 2: Accept confusion and emotional pain as indicators of being in a relationship with a passive aggressive (PA) person. Another kind of person would make you feel totally different; the truth now is that another person is confusing and manipulating you! DO take your confusion seriously: go for a walk; do something alone; write in your diary; learn breathing exercises to calm your brain and heart; watch a positive romantic movie in TV; anything that fills you with mind clarity and peace is welcome!
3) Sabotaging your best projects: If you show enthusiasm and excitement for some personal project, it is sure that you will receive negative opinion, criticism and put down comments. Because your partner will perceive your projects as threatening the amount of attention now allocated to him, she/he will sabotage them.
TACTIC NUMBER 3: Don’t expect or want anything important, fundamental, or vital from a PA partner, at least at the beginning. The more detached you can be from the final outcome of any shared intimacy, the more protected you become from manipulations that will eventually disappoint you. So, you need to present your heart’s desires in a way that is detached from the emotions they produce in you. If you show enthusiasm and high expectations, any project will be nipped in the bud. If you can present the most fabulous ideas with a blank face, then you’ll likely to get what you want. Learn to control any visible emotional connection or desire, while you move ahead with your projects simultaneously.
4) Giving you the “Silent Treatment” Maintenance of aloof silence toward another as an expression of one’s anger or disapproval: a deliberate discourteous act. Are you getting the cold shoulder, but you don’t know why? Is someone who’s normally eager to speak to you now keeping your conversations to the bare minimum? This can be hurtful, frustrating, and confusing.
TACTIC NUMBER 4: Asserting Yourself in light of the silent treatment. If you remember that he uses this way of controlling you, without a clear reason that would justify his detachment, then you can be safer. Think again that this reaction is his choice, that he could behave in a different way, and that this behavior is not revealing or confirming anything about your value as a person. You are not responsible for his behavior, he is deciding to be cold and distant and controlling. Again, detaching yourself, having your own projects and friends, can help you protect your core from the isolation forced unjustly on you. When you feel stronger, perhaps you would try to confront him explaining the impact that this behavior has on you, and on the future of the relationship.
5) Always “not being completely there” In a time of need, the PA person will always be, as the saying goes: “an hour late, a dollar short, or a block away.” He backs off at the right moment, doing nothing when something is expected from him. He hides behind a curtain of good intentions…”I tried to, but…” He “was meaning to go with you to the doctors…but something else came up.” He can give you a dozen reasons why he could not do what he promised. The first excuse is that he forgot about the deal. This leaves you confused between believing him, and listening to your hurt feelings.
TACTIC NUMBER 5: Every time you receive this excuse; each time he says that he “forgot”, substitute the words: “didn’t want to” instead of “forgot.” You then can properly realize what is going on, and can move on with your decisions. You put an end to the confusion and paralysis provoked by his mix of good intentions and omissions.
Living with a person who relates in this way can induce pain, confusion and loneliness. Regardless of that, you might be very well looking at his good aspects and trying to make a good effort to develop a stable and long term relationship.
To help navigate this difficult path, you can use the ebook: “Recovering from Passive Aggression.”
Nora Femenia is a well known coach, conflict solver and trainer, and CEO of Creative Conflict Resolutions. Her best selling ebook: “Recovering from Passive Aggression,” together with other ebooks about developing and keeping healthy relationships can be found at her blog.
Even more: for wise articles on how to clarify conflict issues in your life, survive emotional abuse, manage anger attacks and receive life-changing coaching sessions, visit her blog at: http://www.creativeconflicts.com
Subscribe and receive a free ebook: “How healthy is your marriage?”
Article Source: http://EzineArticles.com/?expert=Nora_Femenia
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I am doing some research on a topic that I have been involved in for some time. Rather, I was the one who dealt with the person who is addicted. Here is some useful information regarding selfishness and alcoholism.
This first article came from the website freedomfromalcohol.com. It discusses the selfishness that alcoholics have and why.
Alcoholics are renowned for being stubborn people who could use a healthy dose of modesty. Being humble is not on their radar. There is no standard template that defines ALL alcoholics, but they do share many qualities, most of which they’d be advised not to brag about. The most compelling character trait of most alcoholics is their selfishness. I’m speaking of selfish behavior that occurs before they do something about their drinking.
Selfishness and alcoholism go hand in hand since being alcoholic means you have total disregard for others around you. Alcoholics are beholden to no one or no thing except their next drink. They will sacrifice everything to see to their dependency and continued intoxication is their only goal. The longer this behavior is out of control, the worse it gets. This means leaving collateral damage in their wake such as broken relationships and families, financial ruin, poor and damaged health, lost careers and a future that is bleak with no prospects.
Someone once say that alcoholics tend to mature much slower than regular people while they are drinking. In fact they tend to stay fixed at the age they were when they experienced their first drunk. What other explanation for the bizarre behavior exhibited by heavy drinkers besides the chemical reaction facts?
Being selfish in recovery can actually be helpful when its purpose is to keep one focused on the mission of sobriety. However an alcoholic, particularly in early stage recovery, must make an effort to avoid the common defects of character they exhibited during their active drinking days – specifically about selfishness, the kind of behavior that makes you angry when things aren’t going your way. If being deprived of alcohol makes you bitter, (and it will) your tendency will be to take your frustrations out on those around you.
A recovering alcoholic has only one thing to be focused on and that’s their sobriety. Having said that, you have to think of those around you. Don’t be so focused on remaining sober that you let your emotions get the better of you. Yes you are going to feel physically lousy and jittery, and bitter with a short fuse. This is a good time to start displaying some remorse for your previous behavior. Instead of carrying a chip on your shoulder the size of Rhode Island, try presenting that side of you that has been absent for some time.
Be the person you want others to believe you can be – the person your spouse married and your children were proud of. If you hurt certain relationships, try and repair them. Don’t be afraid of asking for forgiveness if you wronged someone. This process of redemption will help you more than them. You will know who is deserving of an apology and the process of making it is what will benefit you. You may have much to make up for, as your life was out of control and you were selfish. Little else can have such a devastating effect on relationships as constant selfish behavior. You had an excuse, not a good one but grounds for your bad conduct. Those that need assuaging should receive it and this will help the process of regaining lost trust.
Self pity is for wimps. Period. You put yourself in the position you now find yourself in. No one held a gun to your head and said start drinking and don’t stop. Self-pity in recovery is natural, but is quite destructive and serves absolutely no useful purpose. It simply shows more perceived weakness by the perpetrator and a severe lack of confidence and inability to deal with adversity. It also represents a person’s idea that they are somehow a victim of their circumstances (in this case alcoholism), and they are somehow justified in feeling sorry for themselves and deserving of sympathy from others.
It does not set well when other alcoholics are heard making excuses for their abusive drinking, and in recovery accept no responsibility for their conduct. They behave the same way sober as they did when they were drinking excessively. How can they expect to improve emotionally and admit their actions were misguided in order to achieve healing? They can’t.
Enabling by others can have a disastrous effect on the individual in recovery. By offering sympathy to these self pitying, character deficient weaklings you are only setting them up to fail. A person in recovery is not only healing their physical body, but also their emotional state of mind. They will need to stiffen their spine for their future life free from alcohol when they will need those skills that may have been dormant for years in order to begin rebuilding relationships, careers and maturity. They need to start acting like emotionally stable adults they are.
Ok, I admit, I knew virtually nothing about this fitness program. My interest was piqued when I read an article in the magazine “Arthritis Today” discussing the benefits for those with various forms of arthritis. I have done a little research and found that Joseph Pilates had an interesting life. He started out as a sickly child who, as he studied human anatomy, developed this type of exercise that most people can do.
I have also found that even if you are in bed and in pain, you can still do some of these exercises and feel like you have accomplished something. I know that, even though I have not lost any weight, I have strengthened my core muscles by doing a few simple exercises. The beauty of these exercises is that you do not need a lot of specialized equipment. Yes, you can invest in them if you absolutely must have them, but Joseph Pilates actually developed them using common items he found around himself.
So, in the interest of examining some form of exercise that is not painful (Pilates did not want to cause pain, but to strengthen) I am posting this blog with information from a variety of sources, such as wikipedia and .
I have included a biography of Joseph Pilates as well. I hope that this will help some to be able to become stronger even if on bed rest.
*As with any other program of diet, exercise, or medical regimen, please consult your doctor before beginning any program. I do not endorse this program in any way, however, I am providing this information in the interest of knowledge and helping those of us with chronic diseases to find a possible program we can use realistically, not to enodrse this program over any other program out there. Each patient is a unique individual and must talk this over iwth their personal physician before beginning any program. I am also not providing the exercises themselves on this blog. Just information about the creator of the program and some of his quotes.*
Jospeh Pilates Biography (wikipedia)
Joseph H. Pilates was born in 1883 in Mönchengladbach, Germany. His father was a prize-winning gymnast of Greek ancestry, and his mother worked as a naturopath. The family originally spelled their surname in the Greek manner as “Pilatu”, but changed to using “Pilates.” This caused Joseph Pilates much grief as a child, because older boys taunted him calling him “Pontius Pilate, killer of Christ.”
Pilates was a sickly child and suffered from asthma, rickets, and rheumatic fever, and he dedicated his entire life to improving his physical strength. Besides skiing frequently, he began studying body-building, yoga, “cong fu” (probably what we now call qigong), and gymnastics. By the age of 14, he was fit enough to pose for anatomical charts. Pilates came to believe that the “modern” life-style, bad posture, and inefficient breathing lay at the roots of poor health. He ultimately devised a series of exercises and training-techniques and engineered all the equipment, specifications, and tuning required to teach his methods properly.
Pilates was originally a gymnast, diver, and bodybuilder, but when he moved to England in 1912, he earned a living as a professional boxer, circus-performer, and self-defense trainer at police schools and Scotland Yard. Nevertheless, the British authorities interned him during World War I along with other German citizens in a concentration camp on the Isle of Man. During this involuntary break, he began to intensively develop his concept of an integrated, comprehensive system of physical exercise, which he himself called “Contrology.” He studied yoga and the movements of animals and trained his fellow inmates in fitness and exercises. It is told that these inmates survived the great pandemic of 1918 due to their good physical shape.
After the war (WWI), he returned to Germany and collaborated with important experts in dance and physical exercise such as Rudolf Laban. In Hamburg, he also trained police officers. When he was pressured to train members of the German army, he left his native country, disappointed with its political and social conditions, and emigrated to the United States.
The year 1925 is the approximate time when Pilates migrated to the United States. On the ship to America, he met his future wife Clara. The couple founded a studio in New York City and directly taught and supervised their students well into the 1960s. His method, which he and Clara originally called “Contrology,” related to encouraging the use of the mind to control muscles. It focuses attention on core postural muscles that help keep the human body balanced and provide support for the spine. In particular, Pilates exercises teach awareness of breath and of alignment of the spine, and strengthen the deep torso and abdominal muscles.
Joseph and Clara Pilates soon established a devout following in the local dance and the performing-arts community of New York. Well-known dancers such as George Balanchine, who arrived in the United States in 1933, and Martha Graham, who had come to New York in 1923, became devotees and regularly sent their students to the Pilates for training and rehabilitation.
Joseph Pilates wrote several books, including Return to Life through Contrology and Your Health, and he was also a prolific inventor, with over 26 patents cited. Joe and Clara had a number of disciples who continued to teach variations of his method or, in some cases, focused exclusively on preserving the method, and the instructor-training techniques, they had learned during their studies with Joe and Clara.
Joseph Pilates died in 1967 at the age of 84 in New York.
_____________ Famous Pilates Quotes: (from about.com)
Joseph Pilates wrote two books, Return to Life Through Contrology and Your Health: A Corrective System of Exercising that Revolutionizes the Entire Field of Physical Education.
Below you will find inspiring quotes from Joseph Pilates’ book, Return to Life Through Contrology.
Physical fitness is the first requisite of happiness.
Physical fitness is the first requisite of happiness. Our interpretation of physical fitness is the attainment and maintenance of a uniformly developed body with a sound mind fully capable of naturally, easily, and satisfactorily performing our many and varied daily tasks with spontaneous zest and pleasure.
Contrology is complete coordination of body, mind, and spirit.
Contrology is complete coordination of body, mind, and spirit. Through Contrology you first purposefully acquire complete control of your own body and then through proper repetition of its exercises you gradually and progressively acquire that natural rhythm and coordination associated with all your subconscious activities.
A few well-designed movements….
A few well-designed movements, properly performed in a balanced sequence, are worth hours of doing sloppy calisthenics or forced contortion.
Contrology is not a system of haphazard exercises…
Contrology is not a system of haphazard exercises designed to produce only bulging muscles. … Nor does Contrology err either by over-developed a few muscles at the expense of all others with resulting loss of grace and suppleness, or a a sacrifice of the heart or lungs. Rather, it was conceived to limber and stretch muscles and ligaments so that your body will be as supple as that of a cat and not muscular like that of the body of a brewery-truck horse, or the muscle-bound body of the professional weight lifter you so much admire at the circus.
Contrology develops the body uniformly…
Contrology develops the body uniformly, corrects wrong postures, restores physical vitality, invigorates the mind, and elevates the spirit.
Contrology is not a fatiguing system…
Contrology is not a fatiguing system of dull, boring, abhorred exercises repeated daily “ad-nausem”.
[T]he only real guide to your true age…
The art of contrology proves that the only real guide to your true age lies not in years or how you THINK you feel but as you ACTUALLY are as infallibly indicated by the degree of natural and normal flexibility enjoyed by your spine throughout life.
This is the equivalent of an “internal shower”.
This is the equivalent of an “internal shower”. As the spring freshness born of the heavy rains and vast masses of melting snows on mountains in the hinterlands cause rivers to swell and rush turbulently onward to the sea, so too will your blood flow with renewed vigor as the direct result of your faithfully performing the Contrology exercises.
[A] body freed from nervous tension and over-fatigue…
Moreover, such a body freed from nervous tension and over-fatigue is the ideal shelter provided by nature for housing a well-balanced mind that is always fully capable of successfully meeting all of the complex problems of modern living.
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.
RE: Sleep Patterns
Dear Mr. Sandman,
Look, I understand that you cannot be there for me all the time, but some of the time would be super! I mean, you go away for a few days then Wham! you come back for a few days. This can make our relationship very rocky in my opinion.
I just wish you could come on a regular schedule, like every night, so I can get a routine going. I mean, I think our relationship is going along well and then you surprise me by not coming back one night. Then, because I am sooo tired, I cannot sleep. These surprises are not good for us.
After your absence, you then proceed to overstay your welcome and basically I cannot get out of bed. I get up and try but you pull me back. This is not a healthy relationship at all.
Please do me and you a favor. Could you please just get more regular? I know the wolf throws you out at times, but you can fight him if you want to. Please consider changing, for us, our relationship and the family. I appreciate your consideration of this matter.
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.
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.
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.
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.