A Letter To The World from the Land of Chronic Pain and Fatigue

Discussion in 'Fibromyalgia Main Forum' started by marw, Feb 13, 2006.

  1. marw

    marw New Member

    A letter to the Healthy World From The
    Land ChronicPain and Fatigue

    If you were born with healthy genes, you may know me but you don’t understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia(FMS) after months, years, or even decades of mysterious physical and emotional problems. Because you didn’t know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.

    What You Should Know About Fibromyalgia

    1. FMS is not the newest fad disease. In fact, it isn’t a disease at all, and it isn’t even new.
    In 1815 a surgeon at the University of Edenburgh, William Baldfour, described
    Fibromyalgia. Over the years it has been known as chronic rheumatism, myalgia and
    Fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a
    Set of signs and symptoms which, unfortunately take place together. Rheumatoid
    Arthritis and Lupus are also syndromes.

    2. The main physical and emotional problems associated with FMS are not psychological
    in origin. This is not an “all in your head” disorder. In 1987, the American Medical
    Association recognized FMS as a true physical illness and major cause of disability.

    3. Syndromes strike life long athletes as viciously as they do couch potatoes. They can be
    disabling and depressing, interfering with even the simplest activities of daily life.

    What You Should Know About Me

    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 out my pain 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 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 fibrofog. 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. 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.

    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’s not by choice. My body is not your body. My appestat 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 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.

    11. My Good Days- If you see me smiling and functioning normally, don’t assume I am well. I suffer from chronic pain and fatigue disease 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 Uniqueness- Even those who suffer from FMS are not alike. That means I may not have all the problems mentioned above. I do have pain above and below the waist and on both sides of the body which has lasted 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.

    Note: This letter is based on communications with people throughout the world, males, females who suffer from fibromyalgia. It does not represent any one of the 10,000,000 people with FMS but it can help the healthy people 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.

    Found on ____ fibromyalgia board

    Note: (from Margaret: the Sub titles should be underlined, but I couldn't do transferrring it from my clip board)

    [This Message was Edited on 02/15/2006]
  2. rainbowgc

    rainbowgc New Member

    Thanks for this, I am saving it for those who just don't get it! I have had fibro for over 24 yesars (old fibrositis) and really am just accepting my illness myself. This will be very helpful in explaining it to others who really haven't a clue!
  3. EllenComstock

    EllenComstock New Member

    This is really good and explains FMS very well. Thanks for sharing this with us.

  4. MamaDove

    MamaDove New Member

    I will be printing this and giving it to my so-called friends too...I doubt they will 'get it' but as always, we try to get others to understand just a bit of what we go through...This is so well said!

    Thank you for taking the time to print this~Alicia
  5. lilchisler

    lilchisler New Member

    I did not write it, but I sure could have, word for word. Thanks for posting this. The sad truth about it is that I have been ill for a long while and have managed to work, Praise God, most of the time. Most of my family, like most of yours, has not taken the time to even search out the internet for basic information on the illness./

    Deep down that hurts, because I think that they really do not care.

    I also know that once someone really understands what we are going through, then they are responsible for not doing things to overload us.

    My family will finally admit that I am ill, but now it is that I am mentally ill or just depressed.

    Are they right, yea, they are, but their response to my sickness has been as much a part of that sympton as the Fibro and Lupus have.

    I love them in spite of all of this.
    I just pray for the day that they do understand and I also hope they never have to experience this kind of pain, although I might have once or twice wished it on them for an hour or two ( while in a bad flare) just so they would physically know.

    Again, great post, thanks again. "lilchisler"
  6. marw

    marw New Member

    Hi Everybody,

    Glad I could post something useful for us.

    We really need to to thank this woman "Ginny" whoever she was, who wrote this post....notice at the end of it, it says her name. I didn't get it from her Blog, however, and don't remember where I got it. So I just say "thank you, Ginny" in my heart whenever I use it.

    I gave it to my doctor, also, and he made copies to give to his patients (or he said he was going to try, I think.)

    I often give my doctor things I find that I think might interest him, and he always seems grateful to have them. I don't give him stuff he would already know as a doc, but things from a patient's point of view.

    One of the things I gave him is an article called "Prisoners of Pain" from the AARP Magazine a few issues back. It explains why we can't get adequate pain meds sometimes, and the DEA's role in that, as well. If you are interested in this, I can post it here, too, but it is pretty long. You can find it by typing AARP Magazine in your addresss bar of your computer, and when you get to AARP Magazine, there is a slot for back issues, then you can type in the name of the article.

    Or let me know if you want it reprinted here. I don't know if we have a length on these things or not. (Still a Newbie, that's me. (laugh)

    Hope you all had as good a day as you could!!

  7. marw

    marw New Member

  8. rbecca47

    rbecca47 New Member

    i came across your post and read it , it is great have never read any thing this clear. would love to share it with family and friends that do not understand this DD
    thanks becca
  9. JLH

    JLH New Member

    Thanks for sharing this article.

    It was well said!
  10. marw

    marw New Member

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