How the FMS and CFS Patient Feels The Flu Remember the last time you had the flu? Think back about how when lying in bed, you may have thought you could not wait until you were better. FMS/CFS patients always feel general malaise or flu-like. Though we try to get use to it, as you can imagine, it is hard.. Pain Whether patients need aspirin or opiods to function with daily living skills, the fact is, pain is always present and it will never go away. Try and imagine knowing you can�t get rid of pain. It is hard to not get crabby day after day in pain. Especially when we were raised thinking we can always get fixed. It is very important to let the patient know that "you know" they are always in pain, even when they are happy. Making light of what they feel like is emotionally draining and stressful. Other Symptoms That Wax and Wane Besides pain and fatigue which is usually a constant in the life of a FMS/CFIDS patient, several other symptoms wax and wane in their daily life. It is unlikely the patient will discuss these as they go through them, as there are too many to talk about all day everyday. Please review the symptom list and realize that they are having those also. They may not remember things, not be able to drive, not be able to get out of bed, etc�. The best way to handle this is to let the patient know that it is ok for them just to say "they are not feeling well" and you will understand they are unable to do anything at that time. Then, once in awhile remind them that you know they have many things/symptoms going on, even if they don't talk about them. By acknowledging this, you are assuring the patient they do not need to keep explaining their illness. Another huge stress factor with these illnesses is "looking healthy� . The people that don't know what it is like to live with a disease where there is no cure make comments which are harmful,, even though their intention might be good. Comments like �Oh, you must be getting better�, (that�s impossible), or �Try this, I heard it�s a cure� (There is no cure or we would all know about it) and �You need to exercise�, (exercise can cause much damage to CFS patients)...etc. Unless you are a specialist, please try to not make comments or have others make comments like this. Some days FMS/CFIDS patients can feel well and accomplish much, making those that don't understand, think they are not sick anymore. Then, "boom" the crash into a flare and are bed bound again. Working Through Loss Being diagnosed with an illness that is not widely understood places a burden on the patient to educate family and friends. Family members need disease information for them to read about at a time that is convenient to them. Of course I recommend my book, The Fibromyalgia and Chronic Fatigue Resource Book and Life Planner Workbook. It was built for the new patient and their family to understand what life with these illnesses mean and how to learn to live the highest quality of life. Life changes such as illness or loss require �grieving periods�. The patient has permanently lost life, as they previously knew it and has to learn to accept that. They may have lost their jobs, home, finances, friends� everything. Family members have to adjust to not having the family member the way they are use to having them or want them to be. It is important to understand everyone involved will be going through stages of grieving and loss. Learn about these stages of loss, they are normal and healthy and needed for everyone to come to terms with this life changing event. Stages include: Denial, Bargaining, Anger, Depression and finally Acceptance. Illness is one of the most life changing events that can happen in life. Family counseling with someone who specializes in chronic pain should be considered. After all, nothing is more important then your family. The burden of being sick and making sure everyone is working through it ok is just not possible. So, if you don�t get counseling, read and read and read some more. Life is always about changes and adapting to them. Having the tools to help you through them will make your family closer and stronger. That initial "out of control" feeling that comes with the initial diagnosis, slowly fades as everyone gains an understanding of what changes this event means and knowing they have the tools to put it all back in their control. |
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| FMS/CFS Family Fact Sheet |