Discussion in 'Fibromyalgia Main Forum' started by Sharon, Apr 17, 2008.

  1. debburdsall

    debburdsall New Member

    Hi cockatoomom, i really envy you,,i wish i had someone in mylife who loved me enough to find out about FMS and try to help and support me. guess i'm feeling really depressed and alone right now. Debbie
  2. Thee Ox

    Thee Ox New Member

    for the fibro introduction letters.

  3. brs

    brs New Member

    Please check out the following video site: ABC News Network interviewed a doctor in regards to CFS:

  4. kermworm

    kermworm New Member

    Microwave Sickness may eventually explain FM and CFS. You might want to check this thread out - lots of information on the possible connection and mechanisms of connection...


  5. hagardreams

    hagardreams New Member

    Thank you so much for this! It really helps me to explain. I have printed it off and I am going to have all of my family read it and sign the bottom showing that they read it.

  6. ladonna123

    ladonna123 New Member


    google the spoon theory

    and so you dont look sick

    God Bless
  7. cfs106

    cfs106 New Member

    I'm a physician that came down with cfs in 2006. I've done extensive research on this. Unfortunately, as a medical community, we still don't know the exact cause and treatment of this devastated syndrome.

    The main factor with this syndrome is hypersensitivity of the brain (feeling wired and subsequent fatigue). The brain needs to be "calmed" down. Therefore, the treatment needs to base on this concept. Dr. Paul Chaney, a well-known physician to all cfs sufferers, was the first to recognize this. The medicine that is best to accomplish this is benzodiazepine. Dr. Chaney recommends Klonopin. I take sustained released alprazolam (Zanax). The dosage varies depending on the severity of the illness.

    I realize that benzodiazepines are considered as potentially addictive and therefore portray as a "stay away" medicine, especially by physicians. This is very unfortunate - Do we consider anticonvulsant medicine as addictive for patients with seizures or insulin as addictive for diabetics. Based on my own experience, this class of medicince, saved me. It doesn't cure the illness. But it helps me to be functional. I'm actually able to taper the dose through the years. Hopefully, some day I don't need it at all. But for now, until there's a cure, this is most effective.

    I hope that you can find a physician in your area that's willing to do this. You may have to print the article from Dr. Paul Cheney to help convince your doctor (http://www.dfwcfids.org/medical/klonopin.html).

    I will share more with my experience periodically.

  8. danilynn71

    danilynn71 New Member

    I just read through all of the descriptions everyone posted here, and I'm crying. What great explanations!

    I'm wondering though if anyone has any advice for talking to children. The letters here all seem a little too much for me to use to explain my condition to my children (age 9, 11, and 14). I was just diagnosed a few days ago, and I haven't been able to talk to my kids about this yet. For a while now I've been using the explanation that I'm "not feeling well" or "not feeling up to it", and I know that they've had a hard time with it because they can't "see" what's wrong with mom, and I haven't been able to do so much that I was before. I'm divorced, so I don't have another adult in the house to pick up the slack, and my condition has effected everyone. Now that I have a diagnosis, I'd like to try to explain to them, but I keep coming up empty for an explanation.
  9. brs

    brs New Member

    The best description I have ever heard is found through a ABC new cast. The link: http://abcnews.go.com/video/playerIndex?id=8664151
  10. lilaclover30

    lilaclover30 New Member

    The very first letter on here I copied off. I made 2 copies, one for each of my 2 coffee friends, hoping that I could explain it. The next day after the one had read it, she wouldn't speak to me and that has been 5-6 yrs. ago. She still won't speak - I guess she thinks that my illness is all in my head. I use a cane most of the time and a walker with a seat sometimes at home.

    My sweetheart of 59 1/2 yrs. passed away in May and my crying is mostly from lonliness and longing for him. i know he is in a better place but i still miss him. I'm alone now with my cat, Maggie.

    My lady pastor also goes along with this friend and h ardly speaks. I have been going to a daily coffee for about 30-some yrs. The gal and pastor are both in it. I have days when no one will listen to me or talk to me ---why? because they have been informed thtat is is all in may head. my kids don't say that awful word----"fibro".

    My hands tingle now, my skin hurt so much before i went to bed last evening, my back hurts so much, I can't remember names like I used to which is embarassing when trhying to tell someone something. Sometimes my scalp hurts, my toes go to sleep and tingle,----all those things that all of you above have written about.

    But today rather set me to thinking. One of our dear friends has children that mine grew up with. the youngest, 47, got severaly ill last Sat., was transferred to Chicago with bile duct cancer, a rare one with only 2 in 100,000 cancer cases occuring. He had surgery today, and it was found that it consumed the liver. Prognosis~~~~~~3 mon. to 1 yr.
    Things can always be worse that mine.

    Gentle Hugs,

  11. kivlanmaron

    kivlanmaron New Member

    The following letter is from the website fibromyalgiaexperiment.com

    I really like it and I'm hoping Sarakastic will join our community at fibrofreelife.com. Hope you like it.

    "If I hesitate when you ask me to perform a simple task like going shopping with you, there is a reason. If you ask me to go do something social and I say no there is probably a reason. It’s not that I don’t like you, it just costs too much. I’m not even talking about monetary amounts. It just upsets the careful balance of my life in a very real way.

    First off, spending times in large crowds is rarely fun for me. I have to wear shoes, that hurts. Then I have to stand up for a long time, that hurts. This means that the next day I’ll probably be really sick, maybe even too sick to work. Then I’ll have to spend the rest of the weekend trying to catch up on work which will just make the fiber flare angrier. So thank you for asking, but please understand if I say no.


  12. AdirondackScarlet

    AdirondackScarlet New Member

    look up "letter to normals", do editing as you need, it's a good starter.
  13. AdirondackScarlet

    AdirondackScarlet New Member

    some mite resist reading this kind of stuff....
  14. Pookieprissyone

    Pookieprissyone New Member

    Hi Sharon,

    One way I use to explain FM & CFS (I have both) is this: a flu that never goes away and add in migraine headaches to the mix. If the weather is cold and rainy ratchet up all those symptoms and toss in a good dose of my osteoarthritis. And NO, we never get used to the pain, we just have to deal as best we can each day.

    I hope this was helpful!

  15. sesigirl

    sesigirl New Member

    Hi I have had fibro since I was 40 (and they say life begins at 40) HA. I am now 60 and after many many trips to various doctors and clinics I was finally diagnosed right but not until after I had been told that I was basically wacko!! That really really hurt and made me very depressed. My mother, who is 90 and has seen me go through all of this, still does not think that I have any problems other than that I just need to get to work and quit thinking about my "problems". My daughter who is 40 also has FM/CFS. She is 100 percent military disabled. Doesn't help much with family because they like to think that she just wanted the benefits and she is fine. You would think with both of us having this our family would be much more excepting of this but they aren't. My husband tries to understand but still looses patience with me. (Did I spell that right?) I use to be able to spell anything. Not any more!! I was always the proof reader for our company but am no longer working. I would not be able to handle that job any more. So that is why I am replying. It is so wonderful to be validated even if it never will change my families minds. Thank you so much. Theresa
  16. dkettle

    dkettle New Member

    TOOCHAY Sharon.... My exact words to my therapist, everyone is kind and say they understand, but the truth is they will never know the pain of fybromyalgia, and the guilt of letting my family down.
  17. HeavenlyRN

    HeavenlyRN New Member

    I haven't even finished reading all of it yet, but I sent the link to my family. I've had a hard time describing the intensity of it. Seems like everyone in my family "knows" someone with fibromyalgia, "and they're just fine.....I don't know why you're so sick."

    Thank you everyone! When I am feeling better, I shall also post something here about my history with this disease.

  18. dkettle

    dkettle New Member

    Heres the deal... They need to change the name to CANCER,,,,,,maybe then the people who live a painfree, wonderful life. will have some compassion. Since Fibromyaligia, is the a disease thats only in our heads. It angers me so...

    God Bless
  19. novictimhere

    novictimhere New Member

    I began reading and the tears just fell, I didnt wipe them away. I let them burn my eyes and dry my skin. Feeling empowered, opened up for all to see and I didnt write it.
    Sharon asking for this you brought out some incredible amazing descriptions of this horrible
    God Bless You Sharon and I personally have always found you to be someone that always made me feel completely comfortable. You are a Gaurdian Angel and the woman who took the time to express herself so spot on, with such truth She is a walking talking spokesperson!
    Thank you for these..
    Novi 2010
  20. novictimhere

    novictimhere New Member

    Reading these will forever change my life. I have lately been fighting for these very same truths with my family. I actually almost lost my husband, and at the time I felt panicked.
    (Oh Lord No who will want me, Im nothing) those were my thoughts. NO THOSE WERE FIBRO & LUPUS TALKING. The woman I am has never depended on anyone for anything. If he is tired of coming home and not having a cup of hot coffee for him at the door, and dinner on the table. Go find a healthy woman who has the spoons to carry out all those tasks.
    MY BACK IS KILLING ME, BUT MY SHOULDERS ARE BACK & MY HEAD IS HELD HIGH. I might be sick, I have limits but until there is a cold day in HE**. I;m quite the catch with every ache, pain, tears, procedures.
    Bless you all
    You All gave me ME back!