Different letter for normals (FMS)

Discussion in 'Fibromyalgia Main Forum' started by ilovecats94, Feb 18, 2006.

  1. ilovecats94

    ilovecats94 New Member

    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 Balfour, 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 specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

    2. The many 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 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 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. 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.

    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 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.

    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 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.

    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.

  2. juliejo

    juliejo New Member

    Thank's for putting that down above.
    If you don't mind i have printed it out as no matter how i try and make my family understand they just havent a clue.
    Once again i will leave this somewhere for them to read.

    Juliejox
  3. smiffy79

    smiffy79 New Member

    letters, but do you ever have days where you just want to ignore everyone and walk around going ugh! or arrgh!

    what about back off and bug off?
  4. ilovecats94

    ilovecats94 New Member

    Hi Wendy, Juliejox, Smiffy,
    I'm glad you like it. I was sent this by a friend of mine. I thought it was really good. Some of the points were in color, but I can't do that on here.

    I'm glad you all found it helpful and wanted to print it out. This was a bit different than the other Letters to Normals that have been on the board.

    Hope you have a nice day. :)

    Hugs,
    Faye
  5. ilovecats94

    ilovecats94 New Member

    Livnlife and Jenniflower,
    Glad you both could use this. This is something I struggle with all the time--people not really understanding.

    My son is getting married on 4/2. I have out of town company coming (4) and I have a feeling I won't get much sympathy from them on any of my struggles.

    I may have to print my own letter out for them. lol

    Hugs,
    Faye
  6. JLH

    JLH New Member

    Thanks for posting this!!! This is a GREAT letter!

    I also printed it out ..... and, I copied it and emailed it to my older daughter for her to email to a friend of hers who thinks she has fibro.

    Congratulations on your son getting married! Is Matt the one? I, too, would dread having out-of-town company come who don't really understand how you feel. This could really get you down preparing for the wedding, for them, attending to them and entertaining them while they say overnight, and then the cleanup from everything! Phew! It gets me exhausted just thinking about it!!

    Haven't talked with you for a while. Hope everything is going OK.

    Much Love,
    Janet
  7. rbecca47

    rbecca47 New Member

    i just want to say thankyou, i will be printing this out to give to family members that don't understand what i am going through. there still are some members that think it is no big deal. and some that understand completly.
    thanks again
    becca
  8. ilovecats94

    ilovecats94 New Member

    Fibrotart,
    Yes, hon, you can copy all you want. I wish I could take credit for it, but I didn't write this. I don't know who did. It was sent to me via email and I felt it was so good that I had to put it on this site. I hope that is okay with Tech Support.

    Janet,
    It's John (my oldest) getting married on 4/2. Whew, you can't imagine how nervous I am at this because the rehearsal and rehearsal dinner is on 4/1 at 2 PM and pizza follows at Michael's uncle's home. Then the wedding is at 4 PM on Sunday, 4/2.

    I'm happy and excited, but nervous at the same time. I have 4 coming from out of town but they are staying in a motel. But they will be here most of the time from 3/31 through the time they leave on 4/3.

    I wonder if I can hold up and can I make the rehearsal, rehearsal dinner, get up the next day and do the wedding and reception again? I have to do this and I surely hope the weather will be good for those two days.

    I've been on here most every night, Janet. Due to a supplement have had a lot of stomach and esophagus problems, especially after I eat.

    Oh my company is staying in a motel. We don't have the room here with Matt living here too.

    Knowpain,
    I'm sorry you are new to this and will have to go through what I have in the past 11 years. I just hope you learn one thing and that is to pace yourself. :)

    Becca,
    I hope this helps all family members understand what we all go through. I really don't think a "normal" person realizes how bad fibro can be and how exhausted we can get. Sort of reminds me of two days after the flu or the day after the flu.

    Hugs,
    Faye
  9. ilovecats94

    ilovecats94 New Member

    Ek,
    I've got one neighbor who has asked me how my fibromyalgia is. One...
    Really made me feel good to know SOMEONE knows I have FMS and cares about how I'm feeling.

    I really think the average person just doesn't understand near what we all go through.

    Hugs,
    Faye
  10. ckzim

    ckzim New Member

    for sharing that with us. It pin points alot, and that is sooo good.
    So thanks for taking the time to do this.
  11. ilovecats94

    ilovecats94 New Member

    Ckzim,
    I'm glad you liked it and I hope it will help everyone who is going to print it. Gosh knows we need all the help we can get.

    Just because we don't go around complaining or moaning doesn't mean we aren't in pain.

    I'm trying to keep this bumped so more people will get a chance to read it. I've never read anything quite like it before.

    Hugs,
    Faye

  12. backporchrags

    backporchrags New Member

    What a great letter. Thank you for taking the time to post it!
    A
  13. ilovecats94

    ilovecats94 New Member

    I was so happy to see this and I knew I just had to put it on the board. It was just too unique to me.

    Makes me feel good to know that so many like it and I surely hopes it brings others to understand what we all go through.

    You know, I think 'normals' don't really realize we are in pain 24/7. Not to even mention the fatigue that is 24/7 too.

    Love,
    Faye

  14. atowne

    atowne New Member

    is so helpful for me being newly diagnosed is so hard to explain to people how im affected in so many ways i printed this off hope you dont mind ...
  15. ilovecats94

    ilovecats94 New Member

    Atowne,
    I put it on the board hoping it would help FMSers and I'm happy for all that can print it. I hope it helps your family/friends understand this DD more. We surely need all the understanding we can get. :)

    Hugs,
    Faye
  16. JudieV

    JudieV New Member

    In all the years I've been ill ( first RSD< Then the added burden of Fibro) I have never read anything so beautiful and sad. For I often forget that it's me that has the pain (&associated probems) Thank you & God bless! I've lost way too many friends that could not comprehend that last week-end we visited friends in another stae & this week end I can't manage the other side of town!

    I'd put a letter box..........right by the door bell..........with a sign that says, Take one & please read.Then to all the friend that I saw drifting & angry.........I'd mail them.

    Congrats on your sons marriage. My daughter married 2 1/2 years ago. Thank God she understands, she played prison guard! had me resting as much as possible. The day of the wedding........she arranged with the restarunt to have a quiet place for me to hide out in. The one thing we didn't think of was ear plugs! Noise can be a horrible percipitant for me......even the music I love. Comfortable shoes, my vanity won that fight.......I should say I gave the fight away! Even if you take them along & when all the "meet & greet" is over & you can sit........slie into comfortable.

    Thanks again.!

    JudieV
  17. auntyemnga

    auntyemnga New Member

    I really enjoyed reading the letter. I'd love to send it to my disability insurance people. The doctor thinks FM is a disease helped by antidepressants and exercise!!

    Auntyem
  18. MtnDews

    MtnDews New Member

  19. tlynd

    tlynd New Member

    I had a copy of this before but have since misplaced it, nobody here understands that problem.I'm sure.
    I'll be printing it to give to a few new people who have come into my life, maybe it will help them understand a little more.

    God bless allways
    thelma
  20. ilovecats94

    ilovecats94 New Member

    JudieV,
    Hi hon! My son doesn't get married until 4/2. Stress!!!!! lol Now I have GERD to contend with on top of FMS and diabetes, etc. :( At least I could lay down and sleep with FMS, now with GERD, if I lay down I get horrible chest pains and pains around my sides. Well not ALL the time, but half the time.

    My son's wedding is going to be a nightmare because I have 4 out of town relatives of my husband coming on 3/31. They will be staying at a motel, but here 24/7, I think. I'm trying to stay calm about it as there is nothing I can do, but I'm trying to get the stress down as much as I can.

    My shoes are okay but you are right and I am taking another pair of shoes. lol

    Auntyem,
    I'm glad you liked the letter and hope you will feel better. Unfortunately exercise has only made me worse and I used to exercise prior to FMS a lot.

    Thanks for the bump, MtnDews!

    Thelma,
    I'm glad you got a copy of this. I know people are getting tired of it, but I think it is important for all new members and old to print it if they would like to.

    Hugs to all,
    Faye