1. My pain - my pain is not your pain. It is not caused by inflammation. 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 believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real. 2. 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 at the store, or the mall yesterday, but I can’t help you with yard work, housework, or even cooking, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability. 3. My forgetfulness - Those of us who suffer from it, call it “Fibro 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. I do not have a selective memory. On some days, I just don’t have any short-term memory at all! 4. 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. 5. My sensitivities - I just can’t stand it! “It’ could be a number of things; bright sunlight, loud or high-pitched noises, or odors. 6. My intolerance - I can’t stand heat either. Or humidity. If I am a man, I sweat… profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold very well either. My internal thermostat is broken, and nobody knows how to fix it. 7. 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 Dr. Kevorkian’s patients suffered from FMS as well, and 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. 8. 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 am not lazy! Everyday stresses make my symptoms worse, and can incapacitate me completely. 9. 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 appestat (the hormone that functions to adjust appetite) is broken, and nobody can tell me how to fix it. 10. 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 filled with knots. If I can stand the pain, regular massage can help, at least temporarily. FMS has been called the “Aggravating Everything Disorder”. 11. My good days - If you see me smiling and functioning “normally”, do not assume that I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, or weeks, or even months. In fact, the good days are what keep me going. 12. My difficulties - Most things, I cannot do for any extended period of time. Especially repetitive acts. Such as, sitting for more than 15 or 20 minutes at a time, standing or walking for more than a half hour to an hour. Writing on paper, typing on a keyboard, doing house chores, going up and down the stairs, driving. All of these are things I need to pace myself with. I need to be fully aware of my body, and how much it will allow me to do. 13. My “Marbles” - I only have a certain amount of “marbles” to use on any given day. Let’s say a “normal” person would have about 100 marbles to use each day (and if they don‘t use them all, they go into a “reserve“ for later use). For each task they do, a marble is taken away. Getting out of bed, taking a shower, putting on make up, taking the kids to school, going to work, making dinner, cleaning the dishes - each small task would use one marble. A person with FMS has less than half of what a “normal” person has - and every person has a different amount. Sometimes, one task will require more than one marble. When all of my marbles are used up, I don’t get anymore. Period. Sometimes they are used up before the day even begins. Sometimes I run out, but don’t stop - and eventually, my body will need to “catch up” - and I will “crash” - resulting in a day or two of not being able to do anything at all. 14. My uniqueness - All those who suffer from FMS are not alike. That means, I may not have all of the problems mentioned above. I do have pain above and below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, or hip pain, or shoulder pain, or knee pain, or irritable bowels, but I do not have exactly the same pain as anyone else. I hope this helps you understand me, but if you still doubt my pain, your local bookstore, library and the Internet, have many good books and articles on Fibromyalgia. Author’s Note: This letter is based on communications with people throughout the world, males and females, who suffer from Fibromyalgia. It does not represent any one, of the over 10 million people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn’t want to spend even one day in their shoes….or in their bodies. Fibromyalgia is an increasingly recognized, chronic pain illness which is characterized by widespread musculoskeletal aches, pains and stiffness, soft tissue tenderness, general fatigue and sleep disturbances. The most common sites of pain include, the neck, back, shoulders, pelvic girdle and hands, but any body part can be involved. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time. Over 6 million Americans, 90% of them women in the prime of their life, suffer from FMS and sometimes struggle for years before being correctly diagnosed. Symptoms usually appear between 20-55 years of age, but children are also diagnosed with Fibromyalgia Syndrome. Pain and severe fatigue may keep FMS sufferers from their chosen profession and unable to perform common daily tasks. Fibromyalgia has no cure. The pain continues throughout a person’s lifetime. They will live with it forever.
Posted on: Mon, 31 Mar 2014 04:19:34 +0000
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