i borrowed this from a chronic pain group..i hope it helps others without chronic pain to
better understand someone who does..(like me)..comments in parentheses and my initials kkl are my comments not the author of this blog..
1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not 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. (some like me have some degree of pain 24/7 year after year..kkl) 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. (trauma can also play a part..it's really not known what causes it or why it shows up years after the trauma or why it can persist for years...kkl)
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 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.
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 any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.
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, either. My internal thermostat is broken, and nobody knows how to fix it. (i also have spasms and tics..i've almost been thrown from my chair due to a strong muscle spasm...smaller ones can be jerks that startle me and the cat...i also have a permanent shake which can become "stuck" .. example a finger can develop a obvious shake which may not stop for a few minutes to several hours..and yes,these hurt..kkl)
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 of Dr. Kevorkian's patients suffered from FMS 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.
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'm 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 (appetite and/or metabolism..kkl) 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 knot-filled. If I can stand the pain, regular massage can help, at least temporarily. (personally i can't take the pain of being massaged by somebody else..i either rub it out myself or wait till resolves itself..kkl)
11. 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 also have Peripheral Neuropathy..kkl). I can have my good days or weeks or even months. In fact, the good days are what keep me going.
12. My uniqueness - Even 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 which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else. ( my pain is in my whole body..and some parts can be worse than others depending on the weather,stress, or no reason at all..kkl)
I hope that 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 10,000,000 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 a day in their shoes...or their bodies.