***WAYS TO EXPLAIN FM & CFS***

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Sharon, Apr 17, 2008.

  1. msteph82

    msteph82 New Member

    What a well written article! Thank you so much for sharing that. I sent that to all of my friends and family.
  2. beadgirl54

    beadgirl54 New Member

    Everything I read in this thread just blew me away! I found this site as I was waiting on dinner to finish and all I could do was cry. I know no one else who has FMS/CFS and most of the time feel very alone. While my family is aware of the conditions, I often feel that there is not much real understanding. I especially liked the statement "I give a piece of myself in every sense of the word when I do anything." That is so true! Everything we do does cost us something. thanks so much! I'm looking forward to browsing around.
  3. 0323

    0323 New Member

    Sherry,
    Tears come to my eyes and linger on the edge for I have cried too many tears for my son who has CfS.I read your letter oh how perfectly written on this disease no one really seems to understand.Unless you have CFS no one can really relate how tiring it is to awake if your even able to have some sleep to an nother day of what next.My son who is going on 38 yet has suffered for years He gets so tired and angry that doctors ask the same questions over and over.
    Their clueless to this illness yet it is hard to help when its just plan and simple your sick and they don't know how to fix the immune system.The health care don't really understand the anguish one suffers.Mercy,no this disease
    has no mercy.Thank you very much for this heart felt and plain truth of how your rob of life.I shall share this letter with my son.Yet he will say so what is going to be done?Am hoping he will not feel so isolated.
    God Bless,
    A mom who understands yet feels sorrow for anyone with CFS.
  4. tamsyn

    tamsyn Member

    For years, I've told peole I had Chronic Fatigue Syndrome only to have them look at me blankly (they'd never heard of it) or for them to say something like" oh, I feel tired often too." So, I now no longer use this name. I use the name that is used in the rest of the world: myalgic encephalomyelitus or ME. I now say something like : " I have a chronic illnes called ME; it affects all my body systems and has many symptoms similar to MS. Like MS, it causes brain lesions in many people. It also affects my cardiac function and my central nervous system so that, like MS patients, I get pain, numbness, and tingling."

    I am finding that this type of explanation makes peole much more undertsandng of the fact that I have something serious. MS is an illness that most people have heard of; by comparing it to ME (accurately using the same symptoms) I help people realize that ME is also serious.
  5. CockatooMom

    CockatooMom New Member

    This will be VERY helpful for my boyfriend. He wants to learn more about FM/CFS/ME! Thank you!
  6. MissSally

    MissSally New Member

    I found a book by Starlanyl (1999) helpful. It's called "The Fibromyalgia Advocate". There are letters designed for just about anyone you can think of by someone that understands what we experience because she has FMS and MPS. I hope this helps!!

    I like what you wrote from the FM point of view. Good writing!!
  7. Debcares

    Debcares New Member

    My name is Debbie and I am a caregiver and I am going to have to quit my job my boss does not understand how some days I can do everything great and then I have to call off. I have been there almost 8years and I love the lady I care for but I do everythingshower, hair, housework, meals,insulin shots,playing cards, helping with puzzles and there is not another caregiver to take my place,I am getting scared I hurt so much all the time... I also lost my son a year ago he was 19 and my very best friend, he would even bring me coffee in bed when I couldnt get up . I take pain pills and sleeping pills. My husband and my other son are great.I have had this FM since 1999 after being rearended while sitting in my car. I keep trying to keep my faith,The pain is getting the best of me.
  8. cinnveet

    cinnveet New Member

    To my darling husband,

    Please understand that I am going through a horrible ordeal. I feel terrible about inflicting my illness on you. I know that you're affected by my changes, and I wish it were otherwise. I don't want to be ill.

    I fell guilt about my inability to shoulder former responsibilities at work and home, dumping more on you. I wish I could do more or know in advance what I will be capable of each day. I worry that you think I'm lazy or trying to dodge responsibilities I dislike, but that's not it. Sometimes I just can't and other times I know it would be a mistake to use up all my energy on a minor thing and then have to give up something more important.

    I want to know that I can trust you and that you will be available to listen and try to understand. And I'll try to understand that you can't always be available.

    At times my feelings are irrational. My moods are erratic, and I get angry for no apparent reason, or way out of proportion to the trigger. This is part of my illness, and I'll try to keep it under control. I don't mean to direct the anger and frustration at you but I will sometimes fail. If my mood swings become too hard to take and you feel ready to explode, please tell me so, gently. Maybe one of us can leave the scene, and we can talk about it later when we're both calmer.

    Sometimes I need to talk about these irrational feelings. Just listen, okay? Please don't tell me how to feel or how not to feel. You can't fix my feelings. Please don't judge them: just accept and acknowledge them. When you say such things as, "Your illness must be terribly frustrating for you," I feel understood and comforted. But don't tell me you know how I feel.

    You don't and you can't no one can know exactly what this is like for me. And when I cry, don’t try to make me stop. Please let me cry I'll feel better later .I know I complain a lot. It helps to relieve tension. If my complaining strains your tolerance, please tell me so. I won't like hearing it and may not handle it well, but I really do understand that you need to distance yourself from my complaints.

    I need to work at making clear requests so that you'll know what I need. It's not you job to mind read it's my responsibility to ask for what I want. This is difficult for me; it's easier for me to meet others' needs than to admit my own and ask for that they be met.

    Don't try to talk me out of my symptoms ore remind me that they're not as bad as they could be or not as bad as they were. I know I need to stay hopeful, but if you take an optimistic role when I fell pessimistic, I fell as if you don't understand me and won't validate my feelings.

    Don't give up your whole life for me. Please continue to do the things that are important

    I gave this letter to him 2 yrs ago, and posted here on the message boards. I just printed it out again and will give it to him again, as he is getting frustraded with me since my car accident on 02/12/08. Since then I have been in so much pain, In a horribly flare, with Lupus flare, and multiple infections.

    Thanks,
    Cin
  9. katiebug61

    katiebug61 New Member

    Those are such awesome ways to explain fibro. I have printed them off and will give to family. So many people think you are just being lazy. I hear... "well you just need to make up your mind to get over it." Believe me, I don't want to feel this way. I have good days and when I have bad days, they are really bad. I was finally able to convince my dr to give me something to help on the bad days. Lyrica helps some, but on those days when you have "extra" pain and aches....I just need something. No one understands the fatigue and fibrofog. I just try to hang in there and come to this board and read encouraging messages from others. Thanks for the wonderful articles! Keep up the GREAT work.
  10. lilaclover30

    lilaclover30 New Member

    I just received an E-mail from my son from a state business newspaper. It states that Lilly has justy come out stating that Cymbalta has been OK'd for FM treatment. He know I would be interested in it.

    The letter to you husband, (already I have forgotten you name) hit home with me. I read parts to him just now. Never achknowledged any part of it except the portion ion anger, etc. he said maybe both of us should remember that. I said "NO, this is ab out FM. Remember that."

    Why can't we win sometimes in trying to explain this awful condition?? My son and daughter do - other son doesn't take the time. Hubby just thinks of himself and his problems and granted, they are many. I am the caregiver for him and I begrudge gthe times when he gets angry over some stupid thing and I cry.

    Thanks so much for letting me vent - you learned nothing from me but I learned a lot from you.

    oh, the info my son sent does agree what many believe - a connection between brain and spine and feeling pain worse than other people do.

    Gentle HUGS TO ALL.

    Lilac
  11. CapeCupcake

    CapeCupcake New Member

    Thank you so much Sharon! I just had a discussion with my Mom and tried to explain what having these illnesses is like. I told her that the only people that could truly understand is others that have them.
    These letters you posted made me cry. I wish I could hand them out to everyone I ever see.
  12. carolineangel

    carolineangel New Member

    this is kevin carolineangel is my wife she has fibro. i just read some of the stories in the message board and it help me alot.thanks alot fron kevin
    [This Message was Edited on 06/28/2008]
  13. kim1amy

    kim1amy New Member

    This is so well written. My partner was diagnosed with FM 3 months ago and is on 125 amyltriptolene, 1900 Gabapentin and 6 percs and still cries in pain. We couldnt get in to see another specialist for 2 months and she is at wits end. Do you have any medicine advise as we are going to see her current doctor in 1 week and something needs to change

  14. sheilalewallen1970

    sheilalewallen1970 New Member

    I am new here, and that was put in a way just loved.
    Sheila
  15. perceypor

    perceypor New Member

    it is cortisol/too much of it. I have had CRPS/FIBRO for 21 years and now I am cured. I don't have thay anymore, now they have "CONCEDED" to Addison's/Cushing's. This was only after I diagnosed myself and insisted it be changed. They fought me everystep of the way - now I have pituitary tumors. They intentionally misdiagnosed me and deceived me. Please, help yourself. If you mention "Cortisol", they will immediately dismiss you. Try it. There is a cure for Fibro/CRPS, I am living proof and I have all 21 years of my "nightmare" documented/photos/recordings/original medical records
  16. chartier1946

    chartier1946 New Member

    Thank you, Thank you, Thank you Sharon!

    The letters explaining Fibromyalgia are exactly how I feel!
    You really hit the nail on the head.
    I have been trying to explain this to my husband for years,
    but he still doesn't understand. Maybe by reading some of
    these letters, he will now understand.
    My boss thinks it's a made up disease, but I know he will never read this. He thinks I'm just a complainer.
    Right now I'm struggling with depression. I just went off
    Cymbalta and Celexa, and I'm about to start Effexor. I hope it works. Nothing else has so far.

    Thanks again.
    Keep up the good work.

    Sue C.
  17. lurkernomore

    lurkernomore New Member

    I just had my husband highlight and print out the four, most informative explanations of what havoc fibro wreaks on our lives. Now, I need to try and figure out a way to get my husband and my own mother to sit down and read at least one of them!

    The writing is perfect and it covers everything, from the guilt, the self blame, the pain to the isolation and loss we experience.

    I have no doubt that it would be nearly impossible for anyone who did not have this DD to truly understand it. But for once in my life since this has taken over, I would give anything if just one person would at least try.

    Thanks so much for this, to all who contributed. It says everything I needed said, only so much more eloquently. I notice on the second page here there is someone who posted that we CAN get better, we just have to want to. I wonder if they bothered to read what was posted here or not? Heck, it may have been one of my relatives who posted that! LOL!
  18. KristaC

    KristaC New Member

    I am just learning to cope with this illness..helped me a lot.
  19. Craftygmaof8

    Craftygmaof8 New Member

    Dear Sharon,

    My internist just told me I probably have fibro and then sent me to a rheumatologist.

    She said that I probably have fibro, and then an autoimmune disease or more, and that the 25 vials of blood they proceeded to take would tell her which one(s) I have.

    Your description(s) of fibro and lupus helped me to understand what I have been feeling. There were times when I thought that maybe I was losing my mind.

    It was only after more than a year of constantly telling my internist how I felt that he proceeded to check my tender points. This is when he lowered the boom with one word, Fibromyalgia!

    From doing research online I am finding out that I am not alone.

    It would be wonderful if I could get my family to read the info posted on this message board. Maybe then they will truly be able to understand who I have become in the recent years. Many times I have had to push myself almost beyond the breaking point to do something that I had told them I would do.

    Even my husband can't understand that I don't have "tomorrow" to do something, because tomorrow I may not feel as good as I do today.

    I thank God that I found this website, and then the message board. Otherwise, I still would be trying to figure it out all on my own. And sometimes that just isn't possible because I can't think straight for many minutes at a time.
  20. lauralori1226

    lauralori1226 New Member

    Great!! I sent it to a friend with FM.
    [This Message was Edited on 08/01/2008]