08-15-2007, 09:10 AM
:changes: Hi to all, I am new and never done anything like this before, but I need someone(or a few) people to talk to about this pain, how to control it, how to deal with it all and still try to be a mother and wife. I feel so out of control. I am depressed and i hurt all the time-all over- the depression is over wheleming me,not to mention the vast array of stomach issues i have. I am arguing with my husband a lot because i need to learn how to live healthy and after 28 yrs of not being healthy, i don't know HOW to change. Anyone out there feel as helpless and neglectful as I do? anyone have any idea's on a diet and a take it easy exercise plan? I want to change. I want to feel better. I'M SICK OF SICK!!!!!!!!!!!! :!: :cry:
08-15-2007, 10:23 AM
We all can identify with the feeling of "Sick and tired of being sick and tired". Also, almost all of us know what it is like to live with constant pain. I have Lupus and Fibromyalgia, both diseases cause pain (muscle pain, joint pain, all over aches etc.) and both disease cause fatigue..debilitating fatigue. Our fatigue is an extreme bone-numbing fatigue that's much more than the exhaustion we might have after a bad night's sleep. Our fatigue is a day in, day out exhaustion -- a tiredness that affects our quality of life. This is the hardest part of our disease for friends and loved-ones to understand. We have all been where you are in this area!
You did not mention what types of medications you were taking or how long you had been on medications. Some medications for Lupus will also help to deal with the pain and some will help to deal with the fatigue and depression. It depends upon what you are taking and how long you've been taking it.
Depression is part of the disease also, so the fact that you are suffering from depression does not mean that there is something wrong with you. It is another symptom of Lupus.
One of the things that I always recommend is that the patient and the patient's family learn all that they can about Lupus, its symptoms, its medications and side-effects, its treatments and how it affects you emotionally. Here are some books that might be helpful to you and your husband in the area of educating yourselves about Lupus:
* The Lupus Book: A Guide for Patients and Their Families by Daniel J. Wallace
* Lupus Handbook for Women: Up-to-Date Information on Understanding and Managing the Disease Which Affects by Robin Dibner
* Living with Lupus by Marietta Abrams Brill
* Taking Charge of Lupus:: How to Manage the Disease and Make the Most of Your LIfe by Maureen Pratt
Also, read and print "THE SPOON THEORY" and share it with your husband. It is a beautiful and on-point explanation of what it feels like to live with lupus. It can be located at: www.butyoudontlooksick.com
With reference to exercise, it is advisable that you try to do some form of exercise on a regular basis. Avoid any jarring exercises (like jogging or aerobics). Many of us do yoga, pilates, walking, swimming, bicycle riding and other forms of non-jarring exercises. Once you begin a regular exercise routine, you will find that it actually helps to relieve some of the pain and it helps to relieve some of the fatigue. There are several discussions, on this site, about different types of exercises that we participate in. Remember, if your joints are swollen or if you also have fibromyalgia, avoid doing weight lifting, rowing, high impact aerobics, or engaging in tennis, bowling or golf.
With reference to being able to live will with Lupus: although there is no "cure" for lupus, we all have had to make lifestyle adjustments to help us to manage the disease and to give us a sense of well being. Many of these adjustments don't require that we spend any money. One of the most important adjustments we've had to make is eliminating stress! It is a well known fact that stress and difficulty in coping are associated more with disease flares. Here are some of the other important lifestyle adjustments that you should make:
*Stay out of the sun. If you must be in the sun, wear protective clothing AND sunscreen with a minimum SPF of 30
* Eat a healthy diet (many follow the American Heart Association's Diet). Avoid alfalfa sprouts (An amino acid, L-canavanine, is found in alfalfa sprouts and can activate the immune system and increase inflammation in lupus patients. Other foods in the legume family have only a fraction of the L-canavanine that sprouts do and are safe to eat.) If you are taking corticosteroids, you should limit their sugar and salt intake.
* Don't smoke and if you do smoke...Quit!
* Manage your fatigue - Pace yourself with periods of activity alternating with periods of rest. Remember, if you stay in bed all day, you will only become weaker. On the other hand, trying to be a supermom or superdad and attempt to put in a 20-hour day without a break will assuredly cause your disease to flare. Fatigue is a symptom of the disease. It is caused by inflammation, anemia (deficiency in the oxygen-carrying materials in the blood), and chemicals known as cytokines, among other reasons.
* Develop A Good Doctor-Patient Relationship and be PRO-ACTIVE in your health care. Keep track of what things cause you to flare, listen to your body and heed its signals, take your medications as prescribed and prepare for your appointments with questions and/or a log of your symptoms. ALso, be honest with your physician. Do not be afraid to ask about any and all symptoms that you may have!
* Come here to us whenever you need an answer, some advice, some support, some comfort & understanding or just need to vent. We are here to help you as much as we can!
Peace and Blessings
08-15-2007, 10:39 AM
I've sent you a Private Message (PM)...I thought my post would be too lengthy. Trying to outline a plan for you...
I hope you feel better knowing someone is here and wants to help you to feel better emotional, mentally and physically. All of us do.
08-15-2007, 10:42 AM
:? thank you so much for the advice, my husband said it would be good to talk to others with the same afflictions. i am taking plaquinl and voltran, lexapro, valium, percocet, perscription strength zantac. I am going to get an endoscopy and emg next month along with many blood tests for my many doctors. and looks like we are goin from there.
08-22-2007, 10:30 AM
Welcome to the Forum! :D I'm really glad that you found us! :D
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
Keep well, feel better soon and God bless!