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

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

  1. nunya33uno

    nunya33uno New Member

    I found a great book that explains it well. It is called "Parting the Fog". It does an amazing job of explaining a lot of fibromyalgia. It also has places where you can insert your own story at the end of each chapter. You can find this book on Amazon or in some bookstores. It is excellent!
  2. Svette_Palme

    Svette_Palme New Member

    Sharon, I absolutely GET your question - it is one of the biggest things in my life to be able to explain my illness to family and friends ["normals"].

    This site had an article by Dr. Pelligrino called "Fibromyalgia - Ultimately a Disease of Amplified Pain"

    Here is the link:
    http://www.prohealth.com//library/showArticle.cfm?libid=13702

    If your family/friends have just a slight bit of medical knowledge, they can understand this article.

    For more depth, there is a Mayo Clinic article that Dr Pelligrino is referancing in his write up called something like "Sensory Processing Disorder"

    Maybe that will help - one thing is just to get people thinking in different ways about pain, since "PAIN IS ALLWAYS AND ONLY IN THE BRAIN" - so it is both real and not really real... and requires some thought to wrap one's head around.
  3. fmcfsme

    fmcfsme New Member

    There are many spouses, friends, and family members of FM and/or CFS/ME patients who think the pain and suffering we endure is an attempt for their attention. Often times they don't realize that we suffer from a disease that is invisible; a disease that there is no cure for, and one that many in medical community are still unaware of. The pain is relentless, stealing our joy and replacing it with tears of sorrow, pain and frustration. On the outside we look like everyone else, but on the inside are the scars no one sees.

    Yes, It's Real

    Researchers have found evidence of distinct neurological abnormalities within the brain of CFS/ME patients. Other researchers have found elevated levels of spinal fluid substance P, a pain amplifier; along with lower levels of serotonin (a chemical messenger that transmits nerve signals between nerve cells), and low production of cortisol in FM patients. The American Medical Association (AMA), the World Health Organization (WHO), and the National Institutes of Health (NIH) are among those who have accepted FM and CFS/ME as legitimate physical conditions and as major causes of disability. This should prove without a shadow of a doubt that FM and CFS/ME are real, physical medical conditions, not a figment of our imaginations.

    Background

    FM and CFS/ME effect the person physically, emotionally, psychologically, spiritually and socially. The once energetic person is now replaced by a person dragging themselves through the day in agony. The once fun-loving person is now living in the depths of despair and depression. The person who once felt valued now feels as if life has passed them by. Even the most devout begin to question why they must endure such pain, fatigue and misery. But the worst part of all is the misunderstanding, mistrust, and general ambivalence towards our pain and suffering. Our lives as we knew them are over. We are no longer able to have fruitful careers, manage our homes, or even take care of our children properly. Now the simplest activities are fraught with pain and agony.

    Currently

    Before we became ill we were organized perfectionists who were incredibly productive. Everything in our lives had its place; it kills us that it's not that way now. People with FM and CFS/ME live their days moment to moment, not able to plan for tomorrow let alone next week. We never know when a sudden flare will send us into a world of pain and agony. Many times we can't even think of the words we need to finish a sentence, making us seem demented or deranged in the eyes of others.

    When was the last time you were in agony, yet unable to find a comfortable position? Or when was the last time the medicine you took made you so sick you couldn't leave the bathroom? People who live day to day with a chronic illness such as FM or CFS/ME need your help and support in order to cope with their condition. We need to know you care about us, and that you support us emotionally and physically. Deep inside every person with FM and CFS/ME is someone screaming to be loved, helped, supported and understood. Your loved one with FM and/or CFS/ME needs you now more than ever. Please don't let them down!

    I've lived with FM and CFS/ME for 30 years. I wrote this letter for the visitors to my website (one devoted to information and resources for people with FM and CFS/ME), to give them a voice. I hope it helps you.

    Best Wishes,

    Misty Roberts
  4. Idahojo

    Idahojo New Member

    This is my first day on the message boards. I can't begin to tell you how much this site is helping me. I was recently diagnosed with FM. At first I thought maybe my doc had made a mistake because I had so many different symptoms. But after reading many of these posts I am certain he was correct. I am almost in tears because I felt so many times I was in this alone. I have never known anyone with this disease or knew much about it. I am getting a crash course now. I have printed off your description of FM and am making copies for my friends and family. None of them have any idea what I am experiencing. My daughter was so uninformed she said she thought it was one of those disease that was "all in your head". Now I know I am not crazy. My doc had already told me that but you understand. Can anyone tell me how to print just 1 message or send the link for 1 message to a family member? I am so glad I found this site. I will definitely be back.
    [This Message was Edited on 10/13/2008]
  5. daisysmonkey

    daisysmonkey New Member

    First of all - a big thank you for describing what I could not. I have printed this out to give to my family, friends and co-workers - I think it gives some insite to what is happening with me. Just was diagnosed Oct 29, 08. I guess I am still trying to deal with the whole overwhelming process.

    Thanks again.
    Daisy
  6. neldwn2me

    neldwn2me New Member

    But jealouse to.
  7. Nevaehs_Abby

    Nevaehs_Abby New Member

    Hi my name is Abby I'm a 18 year old girl. And I have FM & CFS & SLE

    It had been 3 years of wondering why I felt so bad all the time after test after test hospital after hospital doctor after doctor. I finally knew what was wrong my doctor came into the room and Said, "I'm going to tell you something I'm sure you have waited a long time to hear, We know whats wrong and know how to teat it but it's going to be hard at times, but there is no worry we are going to keep trying." I was told that I had Fibromyalgia, Chronic fatguie syndrom and Systemic Lupus. I cried if front of the doctor and my mom just held me and cried. We knew it was going to be hard. even know it's hard what kills me the most is I can't go to school full time due to this. I am losing hope on my dream of becoming a Orchestra Director and Composer. It's really good to know I'm not alone. Thanks everyone my deepest blessings.
    Abby
  8. GranEtta

    GranEtta New Member

    Sharon -

    I have been reading your information and am appreciative that you share so much of yourself.

    I am new to the boards but was diagnosed seven years ago and have been very active in reasearching every possible way to help myself.

    I am fortunate that I had a doctor who knew immediately what was wrong and I also have a very understanding family.

    I will post more about my experiences as we go along and will share information that I have found that helps me.
  9. hannahfaid

    hannahfaid New Member

    i have moved no one understands or tries to..... feel very alone
    [This Message was Edited on 10/27/2008]
  10. GranEtta

    GranEtta New Member

    If you just want to send one of the messages, I would copy and paste into an email for your recipient.

    To print, just copy and paste the message into word, save the document and send to your printer.
  11. Rach87

    Rach87 New Member

    Hello everyone,

    I posted this on a few groups on Facebook, and a few people found it helpful!

    I wrote this a month before my 4 year anniversary as I felt like I needed to...I just wanted to share it with you.
    N.B. the comparison I make here to abusive relationships is not to belittle anyone going through that experience. It's just my feelings and my perceptions to do with my illness.


    For four years I’ve been suffering with Myalgic encephalomyelitis (M.E.) and for four years I’ve been trying to describe it to non-sufferers. I’ve compared it to a permanent flu, to a never-ending marathon, to insomnia with eventual pointless sleep.
    Now that it’s been part of me for so long, I realised how I could get the point across. I’ve not only been living with it, I’ve been battling with it.
    The only thing I can think to compare to, is living with an abusive and unpredictable partner.

    He tells me what I spend my day doing.
    He makes me cancel on friends, and cancel appointments.
    He decides whether I can read a book, or listen to music.
    He gives me false hope; lets me think that I can achieve an unprecedented step forward, then pulls me back down to his level.
    He tells me what I can eat and drink.
    He’s indecisive, sometimes he lets me do something then changes his mind midway.
    He plays tricks on me, and punishes me when I read his mood incorrectly.
    He makes me feel sick in the same day that he let me be happy.
    He controls how long I sleep, or if I’m allowed to sleep at all.
    He makes me feel weak, when inside I know I'm strong.
    He makes me feel pain for no reason.
    He makes me afraid of what will happen if I defy him.
    He knows I dream of leaving him, and reminds me that I’m foolish for doing so.

    But what I don’t let him know, is that I will one day be free of him, and that his power over me will slowly diminish.

    M.E. is a hugely complicated illness, and like abusive people, each form has it’s own tricks and tortures. It lets you appear capable and healthy but inside you’re constantly physically and mentally exhausted. Remember, next time you see a sufferer, that in energy terms, he or she may have just climbed a mountain. But all they’ve done is sat and smiled at you. That’s what M.E. does.
    It fools the body into thinking that it’s just run a marathon, climbed a mountain, built a house, gone a week without sleep, but all it’s actually done is made lunch.
    When a sufferer tells you he or she is a little tired, they sometimes mean is they are so exhausted they could weep. It’s a trickster, that sleep won’t stop. Whether it’s got you in a weak or strong hold, it’s still powerful.
    So please, when you see your sufferer friend, remember that they are fighting a constant battle with their oppressor. If you can’t imagine it yourself, don’t try. Just support them. They’ll need it.
  12. 1lookingforanswers

    1lookingforanswers New Member

    Hello,

    Well, heres what happened with me. I spent about 20 years dealing with CFS, Add, Ibs, Anxiousness and at times Acid reflux. It came and went for many years but as time passed I reached a point where I had to deal with it all daily. During all those years I was searching for answers as to what the ROOT of the problem might be to all this suffering. I spent mega bucks on tests medications and natural remedies all to come up empty handed but eventually found what I needed to get me out of this horrible situation. I had heard about a condition called Leaky Gut and started researching it. I found out that by having a compromised Gut you could end up with food intolerance which lead to inflammation in the entire body, gut and throat....creating acid reflux. I found ThinkRite system that believed in Leaky Gut and offered blood testing for food intolerance and I took their blood test. It came out positive finding I had several foods of which I was intolerant to. I removed the offending foods and after about 6 months all of my aliments left including my CFS (of which was my worst aliment). I found that the intolerant foods were causing inflammation in my system because with a Leaky Gut whole food particles escape through your gut lining and weather it is a healthy food or not the immune system notify the brain that a foreign invader has entered the blood stream undigested. Even healthy foods undigested entering the bloodstream are deemed as a poison because it has not been properly prepared and broken down for the body to use it for nutrition. There is much more to be said about this condition and the info can be found with this company but in a nutshell....after all of these years of suffering....the pain is gone...not sort of gone but ALL gone....and to prove that the testing was for real all I have to do is go back and eat the foods that came up positive and the symptoms come right back within a few days. I now feel great!...Hope this helps.

  13. drbygrl

    drbygrl New Member

    FM/CFS Network has a very helpful newsletter and e-letters that give good suggestions. There is a membership fee, but I just treat it as a medical expense. I'd give you the tips, but...I can't remember them!
  14. dannybex

    dannybex Member

    Hello to all,

    Some of these letters are great, but the majority of them appear to address mainly dealing with fibromyalgia.

    Does anyone have tips/advice for explaining what it's like to live with ME/CFS? I'm trying to put it in a letter as concisely as possible.

    Thanks,

    Dan
  15. dannybex

    dannybex Member

    ...for more suggestions on letters explaining what it's like to have ME/CFS...

    ???
  16. krdavis

    krdavis New Member

    This is really excellent, Sharon. Thank you!
  17. BarbaraBlu

    BarbaraBlu New Member

    and this is a great one.
    I will send this explaination to my family. It hits it right on the head.
    Oh, sorry, who needs more pain LOL.

    Barbara
  18. gracebeliever

    gracebeliever New Member

    This is a wonderful topic, Sharon..thank you! My husband has always told me he understands, but I know he really doesn't. These letters will help tremendously..I am going to give them to all my family members and my friends.

    Sandy
  19. kpknight

    kpknight New Member

    I have just been diagnosed with this disease!!! THIS WAS SO PERFECT! It made it so easy for me to explain it to my family!!! Thank you so much. I was in a car accident in December 2007 while I was 10 weeks pregnant. There was a chance i might have miscarried. Thankfully he is here and 7 months old and healthy. With this message its like you read my mind THANK YOU THANK YOU THANK YOU!!

    Kristen Knight!!
  20. kfoley

    kfoley New Member

    Hello,
    This is what I tell people who ask about what FMS is:
    I tell them it's like having the bad case of the flu without the vomiting and bowel problems. You just fill achy and/or in pain. But it's a daily thing. With the Cronic Fatigue I explain that it's like having a chargable battery inside but no matter what you do it never seems to fully charge. Once you've used that energy, that's it. It takes a long while to build just a little bit of the juice back up again, and it never gets full.

    Most people get the idea. When they don't, like some of my old co-workers I just tell them that I have a disorder that you may not understand so don't tease me and put me down, just respect me for the work I do, and I am only human.