View Full Version : I am new at this:
03-04-2007, 10:31 AM
I am new with this website. I am 19 years old and have had lupus for four years now. I am currently going to school, but I am finding it really stressful.
I find my everyday life in extreme fatigue. No matter what I do, I am always fatigued. Its so bad to the point where I can't do anything. Is it true that people with lupus are always fatigue. because in this case, it seems I have no energy whatsoever.
I am researching my illness even deeper and it seems a flare up is starting. Lupus has taken a toll on me in so many ways. Is anyone else going through this? [/i]
03-04-2007, 11:50 AM
Hello Missamber :lol: Welcome to our family!
Fatigue is one of the most misunderstood aspects of Lupus. It affects each of us differently. However, the one constant is the fact that it is an almost debilitating fatigue. When you try to explain your fatigue to others, they assume that you are saying that you are tired. Our fatigue is not at all similar to being "tired". Here is a very good article that I found that discusses the fatigue in Lupus:
"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 similar 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 because they cannot be discarded like the weight-lifters barabells.
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?"
The toxic fatigue of lupus also forces you to make major decisions. Will you make yourself a cup of tea, which means dunking that heavy teabag, or settle for a glass of water - and how many ice cubes can you use without making the glass too heavy?
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."
The best advice that we are given is to make ourselves take rest periods where we can get true, recuperative rest. To change our schedules and/or arrange our tasks so that we do not have to do so many things in one day. Of course, we are told to change our diets to eat healthier foods that increase our energy and to do some form of exercise on a daily basis (believe it or not, this truly does help with the fatigue). It is important to ensure a balance between exercise and rest - exercise and rest intermittently as your body allows. Listen to your body, it will tell you when it is time to rest. Increasing your stamina will allow you to gain more strength and muscle tone. Remember that rest is also needed to restore energy. Activities that strengthen your stamina and donít cause
stress to the joints and muscles are advised. These include swimming to provide an all over fitness, walking and cycling. Jogging should be avoided as this may prove too strenuous.
There have been a lot of discussions, on these forums, about fatigue and how to handle it. So, you are not alone!! Between 80 and 90% of lupus patients suffer from this abnormal fatigue. Studies have shown that the fatigue is found to be more chronic in those patients who suffer from a lot of anxiety and stress and who have a poor quality of life. Also, that fatigue worsens when the disease is active.
You will definately have to make some adjustment to your lifestyle. How you learn to cope with these changes will be an important part of the process of adjustment. Take time to think of the activities you did before you had lupus. You may have to make changes, but that is not necessarily a bad thing. Learning to cope with your lupus and taking control of it and not letting it control you will enable you to make changes with a positive attitude.
It may be that you cannot manage be active as many hours as you once were. You may be able to spread your activities over more days or may need to take a rest break during the day. It is now more than ever
crucial to look after your body. It is no good pushing yourself to the limit. Learn to pamper yourself a little, learn to accept help when offered and donít push yourself to do anything that may be unnecessary - many things can wait until tomorrow. Remember the body also needs time to rest and rejuvenate and start again.
Please join us often for advice, support, comfort, information or just to share your feelings. There is always someone here to help!!
Peace and Blessings
03-04-2007, 12:28 PM
Thank you for that information.
I will do my best to follow what you have said.
So, Ill always be somewhat fatigue?
But if I watch some of the things, I wont be as fatigue. right?
03-05-2007, 01:30 PM
Welcome to the Forum! :D I'm so glad that you found us! :D
Please just remember that anytime you need advice, support, information or just to vent or chat, we're all here for you! :D
I am currently sixteen years old and will turn seventeen in September. I can honestly say that I find this fatigue absolutely debilitating. :( I find it really difficult to get up for school in the mornings, especially when I haven't slept so well the night before. :( Saysusie has given you some wonderful information! :) I think that the hardest part is getting other people to understand your fatigue, including medical professionals! :x
Do you have Fibromyalgia as well?
Keep well! :)
03-05-2007, 01:53 PM
Hey thanks for messaging me. how long have u had lupus for? I am not sure if I have that or not. what is it exactly? I am still finding new symptoms as we speak....
03-05-2007, 02:22 PM
Well, to be perfectly honest, my doctors cannot decide whether I have Systemic Lupus, or whether my Lupus is just Cutaneous (skin Lupus). :x However, I have been extremely ill since I contracted Dysentery in Austria on a Music Tour with my school in March/April last year and I think this is where this all started. My doctors know that I definitely have some kind of systemic auto-immune disease; the only problem is, they haven't really decided which one it is yet! :x I definitely have Sjogren's Syndrome, however (which my mother also has). Basically, out of the eleven diagnostic criteria for S.L.E., I fulfil the following:
*Ulcers in the mouth and nose
*Seizures and other central nervous system problems
Fibromyalgia is a type of rheumatism, which affects the muscles and ligaments, but not the joints. It is not progressive (i.e. it does not worsen over time) and it does not cause permanent damage, but it usually lasts for a very long time. Fibromyalgia is quite common and sometimes it is so severe that it can prevent you from doing day to day activities, etc. In Fibromyalgia, the fibrous tissues (fibro-) and muscles (-my) are affected by terrible pain (-algia) and tenderness. The pain usually feels as though it is affecting the whole body.
Some of the symptoms of Fibromyalgia, excluding the pain factor, include:
*tingling, numbness and poor circulation or swelling of the hands and feet
*headache, irritability, feeling depressed
*forgetfulness and poor concentration
*frequent urination/urgent need to urinate
*Irritable Bowel Syndrome (I.B.S.)
*waking up feeling unrefreshed
Do you have a Rheumatologist? If so, he/she will be able to diagnose Fibromyalgia from a medical history and a physical examination.
Have you had your blood tested for Anaemia recently? Anaemia can also cause the most terrible fatigue and weakness.
Does this help at all?
Keep well! :)