Letter to our Families from FMS patients

Discussion in 'Fibromyalgia Main Forum' started by cinnveet, Mar 6, 2006.

  1. cinnveet

    cinnveet New Member

    Hello Family, Friends, and Anyone Wishing to Know Me,

    Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.

    I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.

    You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand....

    Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....

    Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.

    I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand….

    Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

    And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….

    On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

    So you see, you and I are not that much different. I too have hopes, dreams, goals… and this demon…. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand….

    Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like you… Please understand….

    Ps. When I read this on a website I thought, Hey THATS ME!,
    I printed it out to give to my family, and wanted to share it here as all of you that post here have made a very big diffrence in my life. and I thank all of you.
    Hugs,
    Cindy

  2. jeduanboneis

    jeduanboneis New Member

    I wish to thank you so much for taking the time to reprint the letter.

    It came at a crucial time and it was very comforting. Yesterday a friend asked me to take some pictures and I told her that I couldn't because I was just wiped out when the truth was that I was shaking so,so much that I wouldn't be able to hold the camera still. Her reply was "It requires minimal effort!". I have had this same response from my dearest friends. It does make me want to just isolate and rest and then work at my own ability.

    Sorry as I know I am venting, but it is with much gratitude that I know that I am not suffering through this alone.

    I have had CFS for about 25 yrs. and only recently (in the past year) have I developed the pain of FM.

    I am printing this letter to give to my husband.

    Once again, Thanks !!!

    Jeanne
  3. rosemarie

    rosemarie Member

    I too have this chronic condition called Fibromyaligia. We share the same body but we don't like each other at all. That may sound strange but it is like having some one take over your life and all that you do in it.

    I once was someone different. I loved spending time with my husband and my daughters . I looked to forward to each spring as I know that on Memorial Weekend we would spend the weekend at the Mountian Man Rondevous. What fun it was to live in a tipi for the weekend and walk all around the shops that were set up. All the traders were there just waiting to sell you what ever you needed. And the food was good and so were the friends. I loved to walk around after the evening meal and go to different camps and visit with all the friends I knew. It was so much fun, singing and talking . And on Sunday mornings nothing was so sweet and so spritual as when I would climp up a hill and look over the valley and see Tipis everywhere the eye could see. And off in the distance there were bag pipes softly playing, I never felt so alive.

    But as time passed on it became harder for me to walk around the traders row and I would get so tired that the thought of walking back to where I was camped would bring tears to my eyes. I hurt so much and the walking only made it worse. It was not so fun to sleep in the tipi as it gets really cold in the mountians and my body does not like the cold and it only made my pain worse. All the things that once I had looked so forward to do were now some thing I dreaded doing. I still am so sad that I am not able to walk around the camps and talk to the many friends that I have there . I can't do this because I can't walk. It hurt my joints, knee's back hips and my thighs and it is so deep of a pain that my body does not work like it should. Where once I could climp a hill and walk on a road that was filled with ruts from the many trucks that had driven there when the road was wet were now a hazard to me as I lose my balance and fall.

    How embarassed I was at one rondevous as I was walking with a friend to see some friends. They all had been drinking and I don't drink but as we were walking from there camp I suddenly lost my balance and tripped over a rut in the road and fell face first in to the hard dirt. I was the sober one yet I was the only one who fell and skinned both knees and had cuts and burises on my legs and knees.

    My dear friends tried to help me but I did't want them to see me cry . I had been able to do it before so why not now? Because I have fibromyaligia. It has taken so much from my life. It takes and takes all the things I enjoy doing. And I am no longer able to walk for more than a few feet with out having to sit and rest or I will get so tired that my legs will just stop working and give out on me. and I will trip and fall again.

    Having this thing has changed me. I don't enjoy walking anymore as I get so tired and the apin that has come along with this is so bad that the only way I can discribe it is to say that I feel like I have been run over by a mack truck and pulled through a knothole backwards. Think of it this way you have the flu, and your body aches and moving makes it worse, your so tired and if you were to sit down you would fall alseep. Now times that feeling of pain and exhustion by 10 and it is about the feeling I live with each day of my life.

    I once supported my self and daughter as a Dental Assistant . A job that requires skill and dexterity and the ablility to cope with people who don't want to be there. I loved this job and I loved doing the surgery that we did. It was very hard to know just what the Dentist wanted and to hand him the instrument before he asked for it. I knew how to do this and I loved it. I felt like I was really good at it to.

    It was a chalenging job that took skill to do and I had that skill. But then things started to change, I would not be able to stand up after sitting for a hour working a patient. I would try to stand but my legs and back were so stiff that it hurt me and I would have to move so slowly to be able to just stand up. I had problmes with my fingers they went numb at times and that is not a good thing to have happen when your doing surgery and handing the Dentist a scaalpel blade and not stab him or worse drop it on or in the patient.

    Then after a while I could not work anymore at this proffesion that I really loved , I could not sit as long and my body didn't work right as it had once done. I was so tired all the time and the pain was so bad but I would try not to let my boss know that I was hurting.

    I quit working as a dental assistant because I could not do the job right. And then to add more misery to my life I tripped over a curb and fell and shattered my left wrist and it was so badly broken that it took a plate and screws to put me back to gether again and I don't have the useage of my hand as well as I need it to work . It does not work right and I a sharp pain in it and it shocks me too.

    So here I am not working anymore. All the jobs that once were a breeze for me to do were now a challenge and I could not do them or meet that challenge anymore. The life I once had was gone. And I still have the desire to work and do all the things I enjoyed. But I have to stop and pace my self in all that I do.

    I some times think of that person that was good at her job and feel so feel so sad like I have lost a part of me that I will never get back.

    Having fibromyaligia is not fun and the life that you have after it enters your life is not any were near your life before. this syndrome makes you feel so tired and exhusted all the time. I now have pain and stiffness when I stand up and walk. When I get up in the morning my feet feel like I am walking on shards of broken glass the pain is so sharp . I am so stiff and sore that your would think I had done the toughest work out ever , yet all I had done was sleep or try too.

    The things that I had taken for granted like taking a long walk or riding a bike are gone, I used to be able to do so many things and now they are not possiable for me to do.
    The thing with fibromayligia is that no two people havethe same symptoms. We are all different in the things that bother us and causes us pain. And we all react to pain in a different manner than we once did. It has been said that aif you took two people and touched their skin with just a small amount of pressure. The person with out fibro will not have any pain it is just like being touched but for me it cause me pain.

    I am not doing such a great job of telling you how this affects me. I am not the same anymore. I no longer work, I have found that I have other pain problems too. My knees have arthritis in them, my back has degenerative disck disease, spinal stenosis, and I have 2 discs that are buldging L4-L5, L5 -S1 and a broken tail bone that never healed. My left wrist the one I shattered causes me pain if I try to lift things like my grandson it will send me shocks that zap with so hard that my hand will move.It causes me pain everyday and it is not the same and will never be as it too has arthritis in it .

    Well I wish that I could explain this better to you, even though all of us here know how it affects us but I would so like my family to understand why it is that one day I can walk around the mall , and suddenly I can't walk at all with out pain and becomming so tired. I live with pain each and every day of my life and I have reached the point in this that I need to take pain pills for me to do the "Normal things in life" I am only able to do my house work in small dose's as It makes me so fatiqued, and it causes me pain bending over and lifting.

    I want them to understand how and why I feel like I do but I can't as it is do different for everyone. And how do I explain that some time I can walk around and do things and with in a hour I can't even walk. And watching a TV show I will start to dose off after a few minutes why? Who knows. I want the old me back. And so does my family. But it will not happen.

    I wish that I could put how I feel in to words that all could understand but when I go to write how I feel the words don't come out right. I am sorry that I can't explain this better. I wish I could. But I do understand how others feel because I feel that way too.

    Thanks for everything,
    Rosemarie

  4. jaltair

    jaltair New Member

    It just about says it all .. thank you for sharing with us.
  5. sues1

    sues1 New Member

    I really think both are great. Thanks ever so much.....

    I did laugh (better than crying) over : I too have this chronic condition called Fibromyaligia. We share the same body but we don't like each other at all.

    I have three, me, Fibro and CFIDS.....all fighting for control, but I also have my warriors on this
    site helping me find my way.....to victory.......

    Together we are more powerful..........Blessings
  6. cinnveet

    cinnveet New Member

    I wanted to thank everyone for the great replies.
    Cindy