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

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

  1. deepcanyon1

    deepcanyon1 New Member

    I have been told I have epstein barr syndrome along with CFS I an new and accidently found this website and I am so glad that I did. I have been sick for almost 25 yrs now I turned 50 In January.I am always tired so tired I wake up feeling like I haven;t slept but now that I have read so many post on here I don't feel so all alone. The reason I said i was frustrated is after being referred out to a Infectious Disease specialist and my hubby went with me to see her she says I am well. That most people have CFS and they are just fine. I will not die from it and just stop worrying so much about it get into physical theraphy and get stronger cause you are not sick. I left there feeling so let down and now my husband feels like I just need to go to theaphy and get back some strength and I will be well and wants me to stop using being tired as an excuse not to do things...like i wake up most mornings at 3 a.m. and can't sleep by the time it is time to cook dinner i am just to tired sometimes and weak to do it and now i think he thinks i am just lazy and dont want to do the things i need to do. Please any posts that anyone could post that I could let him read and maybe understand that I am sick and have a Chronic disease that there is no cure for he will understand it better. The doctor told him he was a smart man by saying that i needed to get out more and walk farther and exercise.
    I am at a lose for what to do..
    Thanks for listening
    Pam
  2. MnekoM

    MnekoM New Member

    FM is a silent and slow killer. It starts to work inside slowly to take away all your hopes and dreams. This debilitating condition challenges our will to survive. I don't know if I want to live like this anymore. I don't see any point in suffering so much for so many years and not knowing if I will ever get better...
  3. bbkp123

    bbkp123 New Member

    I haven't been diagnosed but feel so like I am defective because all these other moms run around and work and I don't work I used to part time but that was just too much and then even running around with my kids just fatigues me so much that I have to say just go away and I feel really bad but feel so tired and ill. I'll sit on my bed and do things with the kids on bad days with my heating pad or cold pack just to interact with them but they want the run around the yard play football baseball and I used to be able to do that. The medications wellbutrin and clonapin help because it seems everything stresses me out. I let my kids go over other kids houses because its overwhelming its just a terrible feeling. and yes people in your family not my husband or kids but inlaws or brothers feel its your lazy lack of motivation. I have alot of enthusiasm but it feels it gets zapped..just like that. What can I tell my Obgyn to have her test me or help treat me? I am 38 and my body feels like 60....
  4. kjfe

    kjfe New Member

    I've wondered sometimes if it's worth it to try to explain CFS to people. I feel like I've been misunderstood whether I try to explain it or not. So, why use up precious energy trying to explain?

    Nevertheless, there are people who are truly interested and they are willing to listen. What a great gift of compassion?!

    I think it's important to try to help people understand and educate them to the illness if at all possible. It may help the next person they meet with a concealed illness. We have to speak up when the opportunity arises so that people understand there's more than one or two of us with "this stuff".

    Sometimes I tell people that just like every one has a thumb most people with CFS share 3 or 4 main symptoms (fatigue, body ache, cognitive disturbances, and usually frequent headaches), then like each us has a thumbprint that is unique we each have symptoms that come in unique combinations (chronic sore throats, low-grade fever, gastrointestinal problems, sensitivity to extreme heat or cold, etc.). The main thing is trying to explain what chronic fatigue FEELS like, and trying to help people understand that they may feel tired, too, but ours is CHRONIC and it affects our lives everyday.

    If people want to understand they will, if they don't have compassion in their hearts they will simply turn away. The only thing we can do is work together to help people understand this is real. There are hundreds of thousands of us in the world living with this. It's highly unlikely that we are ALL faking a devastating illness.

  5. babe001

    babe001 New Member

    You might want to view the Centers for Disease Control website to see the criteria required for a diagnosis of CFS/ME or fibromyalgia. Most ordinary bloodwork will come back normal.

    I had no luck getting a diagnosis from my family doctor or a rheumatologist. I found a D.O. (Doctor of Osteopathy) through a now-defunct CFIDS support group and finally got a diagnosis after more than 2 years of ME/CFS, FMS etc.

    I have been ill since '99 and have had some remissions in symptoms with the nutritional and other treatments offered by my D.O.

    Best wishes to you in your search for answers.
  6. tialisa

    tialisa New Member

    I'm sending a major shout out of appreciation to all those who wrote in with definitions of this dd. I made copies to give to several friends and family members. It has actually made a slight difference in the way a few people treat me now. Thank you forever, Lisa
  7. jam02

    jam02 New Member

    Have you seen the spoon theory online? Look it up and read the story. I printed and emailed it to everyone in family who needed it. "But you don't look sick....."
  8. sno_white1234

    sno_white1234 New Member

    the sad thing is I think I have had this for many years before diagnoses,Id get symptoms that didnt see to go together.My husband and family didnt understand,since I did not look sick,I was lazy or depression,of coursee I"m sure you know that.My lower back and hips are hurting and my right knee hardly lets me walk.Then my hubbies sister and her two daughters got it,now he believes,wspecially since I think he has it too.forgive my typing.I hope you get all the help you need.Sno
  9. cagrice@cox.net

    cagrice@cox.net New Member

    Hi my name is carole, I have had fibro since 1997, and suffered pain and too many other symptoms to go into here. I never gave up on finding an answer for me, because I just could not get get through my head that I would spend the rest of my life this way. I ordered the supplements, read all the books, took all the meds, did what the doctors said to do, and you all know how much good that all has done. On one of my health news letters I found a link to a site that went into some ideas about CFS/FM that I had not understood before. It was simple and no constant ordering of supplements or complicated things that never work anyway. It's called TheME/CFS&FMS Advanced Recovery Programme. Maybe not for every one but after six months I can now say I have control of my symptoms. Having the tools to help myself is such a great thing because I am an independent person and at 68 years old I am still going strong and want to keep it that way.
  10. jaadaz

    jaadaz New Member

    I have had many of these symptoms for many years.
    I know most of my family think I am lazy .And now being distant because I don't spend the time with them like I used to. They don't understand I am not the same person I used to be...
    Even writing this is hard I am forever hitting the wrong keys on this keyboard, I know which ones I want to hit but my fingers hit the one next to it, so I have to take extra time to backspace and redo. Even this is exhausting and frustrating.
    Anyway I hope reading some of your blogs will explain what I'm going through .

    Thank you,
    Jean
  11. Tara_Lee

    Tara_Lee New Member

    My rheumatologist thinks I have Fibro and sent me back to my general doc.. He wants to be safe and send me to a Neurologist to make sure it's not MS or something similar.

    This is so scary!
  12. AdirondackScarlet

    AdirondackScarlet New Member

    Helped me years ago, edited to suit my needs .
    IF I could get close ones to read it.
  13. blueseas251

    blueseas251 New Member

    Hi,
    If you go to the NFA website, www.fmaware.org, click on Community and get professional information. This website is chock-full of info regarding explanations for FM. Also, WebMD and Mayo Clinic are also excellent resources.
    Good luck and Good Health,
    Sharon
  14. kennysmauhmee

    kennysmauhmee New Member

    Hi.. I'm new around here. I was standing outside on the porch looking for comfort in my Bible because I couldn't sit or lay down the pains so bad.. I came into the computer to sit for a minute because I couldn't stand any longer and I found this site. I'm glad I signed up. For the last month and a half the fibro has been at it's worst. I look at my 13 month old son and wonder how I'm going to keep up with him... I'm so tired of asking my husband for help with seemingly small tasks and trying to explain to people, and even myself... I just want to be normal. Heck, I'd take semi-normal.. I just need the pain to stop for a while... or at least tone down. Anyway.. I don't mean to ramble. Your post made me cry and I wanted to thank someone.. just for understanding.
  15. Jacquelina

    Jacquelina New Member

    WOW!! I am new here also and suffering from fibro. These posts are amazing........I will definately be printing these and giving them because it is so difficult to explain about this terrible fibro and ALL of it's symptoms, there are so many issues to this evilness. Thank you so much again and God Bless you all. Love, Jacquelina
  16. Hotlittledopey

    Hotlittledopey New Member

    I was recently diagnosed with FM, and from the minute I read this, I couldn't help but cry. I try so hard not to complain about the pain, some days are easier than others. My husband says he understands (God bless him, he is patient), but you never know what it is like until it is you that is going through it. I find myself everyday becoming more and more depressed. I can't work because it hurts to badly, and I hate laying around the house all day watching the dishes not being done, not being able to play with my dogs, or even give my wonderful husband who is in the Air Force a massage after he's had a long hard day. I haven't found anyone who understands, and apparently I'm moody???? I sometimes don't even realize I'm doing this... OH the wonderful FM symtoms!!! Trying to find ways to deal :(
  17. daynakb

    daynakb New Member

    Even though I've explained FM several times, it's always good to find new ways. Especially when you have to explain it to the same person several times over. My mother always says she understands, then follows it up with "but everyone feels like that when they're starting menopause." So, I guess I've been "starting" menopause for the 15 years (I'm 44 now). On the other hand, when I started the fight for disability, my husband gave the explanation his best shot (he's not very good at it) when his grandmother asked what was going on. That was probably a good thing. She thought I didn't like their family and wasn't coming to the family events all the time because of that.
  18. hottxxxtopp

    hottxxxtopp New Member

    Terri,
    Thank you so much for the perfect explanation to what we have. I hope you don't mind, but I copied and pasted your letter and emailed it to all my family and close friends. I also printed a copy and gave it to my b/f. Hopefully after they read it they will understand a little better.
    Thanks again,
    Patti
  19. hannahfaid

    hannahfaid New Member

    wonderful if anyone cares for you or honestly takes you seriously

    can ya tell Im a little bitter??
  20. 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