does anyone else feel alone

Discussion in 'Fibromyalgia Main Forum' started by ufuomalinda, Nov 25, 2002.

  1. ufuomalinda

    ufuomalinda New Member

    I was wondering if anyone else feels so alone out here even my doctor has no ideawhats going on I just get worse and there is no one to talk to about thats way iam here to have someone to talk to ...I have been sick for ten years and never had anyone to talk about it with..my family is a whole different story..will be nice to talk to someone like me...
  2. ufuomalinda

    ufuomalinda New Member

    I was wondering if anyone else feels so alone out here even my doctor has no ideawhats going on I just get worse and there is no one to talk to about thats way iam here to have someone to talk to ...I have been sick for ten years and never had anyone to talk about it with..my family is a whole different story..will be nice to talk to someone like me...
  3. mamusia

    mamusia New Member

    I think it is so hard to come to terms with all that goes on for so many years that everyone, including ourselves, doubt and then when we are diagnosed and finally vindicated it is as if no one is left to cheer with us let alone completely understand it.

    I am sorry that you seem not to have family support as that is hard especially around the holidays. But do keep in mind that you have a lot of friends here that you can talk to that really do understand.

    Keep writing and hugs,
    Mamusia
  4. twjen

    twjen New Member

    I have found you are never alone with your problems on this site. Do you have fibro? Or do you know what is wrong, please explain. It is important to know so we can share.
    I will check back with you again. Yes, i do know that feeling though all too well, especialy on bad days when everyone else seems so great. Hope you have a better day.
    Jen
  5. pam_d

    pam_d New Member

    You are in the right place! Everyone here knows exactly how you feel, we've all been there (or are STILL there)---we understand how lonely it can be, how hard it is to find good information, how tough it is to educate our families and friends, how frustrating it is to search for a doctor who is qualified enough (not to mention, empathetic enough) to treat us. But you will find support & a lot of good information here!! I always tell people I learn something new almost every time I come to this site, and it's really true.....come here often, you will find friends who really understand.

    Where in the world are you located? I'm in the center of the US in Kansas, but we have members allover the place--there may be someone in your area who has a good doctor recommendation.

    Take care, welcome. We all understand what you are feeling, & you are not alone!!

    Warm hugs,
    Pam
  6. Shirl

    Shirl New Member

    Hi Linda, welcome to the board. Glad you have found us.

    I think all of us with these illnesses have felt very alone at times. They are such misunderstood illnesses, and most people have not even heard of it.

    As for doctors, most don't have a clue either. You will hear a lot of that around here.

    Well, you won't feel so alone around here, we are all in the same boat, and try to help one another. We do understand where you are coming from, and don't make judgements about one another.

    Hope you make lots of friends here, and again, a big welcome to you.

    Shalom, Shirl
  7. EllenComstock

    EllenComstock New Member

    Hi, Malinda:

    I have found that families are often not a good source of support-at least not in my case. My husband is finally understanding it, but the rest of my family doesn't really understand or care to understand it. But I have found a lot of support on this message board, which has really helped get me through my worst days. Plus, I have also found a support group that meets once a month. I was surprised that my small town had a group. There are usually about 12 to 15 people there each time. There are also people in the group that have arthritis. Maybe you could check to see if there is a support group in your area?

    Ellen
  8. azcrum

    azcrum New Member

    I found this message board. There are wonderful, supportive people on here and we all have one thing in common. I have also met a special friend on here and we email eachother everyday. Please feel free to email me if you want to chat.

    Pam
    azcrum@aol.com
  9. DeeMerrk

    DeeMerrk New Member

    I am a long time member of this board, and the very first thing I asked was "how do any of you cope with the isolation and loneliness one feels with this illness?"

    There is not a one phrase or sentence to give another about coping with this illness. (However you do not say what you illness is, so we are inclined to think it is either FM or CFDS)

    Most of us who have had it for a long time have had to find all different ways and methods to learn to deal with this.

    The first thing is correct diagnosis. Then I think all would agree that the symptoms which causes the most problem need to be addressed first. One needs to arm themselves with all the information that they can find; and a great deal will be found here.

    I don't come here much anymore, mostly to read, but I was struck by your message, and was prompted to write to you. If you wish to write to me, ask Shirl Shalom, one of the moderators to give you my email address.

    It is indeed difficult for others who do not have our illnesses to understand, as from all outward appearances, we seem to look okay. So, I for one have found that I don't expect others out of this loop to understand.

    Good luck to you, and keep coming here and read the messages, and go back over past messages to glean a wealth of information.

    Sincerely: Dee
  10. nana42

    nana42 New Member

    There have been days when I felt like you do. It will get better. Maybe not your physical state, but your perception. I was angry with this new me until August. I used to be a workaholic-perfectionist. NOT ANYMORE!!!!! My mother was the one who figured out what was the matter with me and sent me in the right direction. She's in FL and I in PA. I finally found an excellent Dr. Although I still suffer from both fibro, chronic fatigue, DDD,high BP and depression, I am trying to adapt to the new me. I am blessed with a supportive husband, and adult children who clean for me and motor me around since I gave up driving. Remember - you only get the rainbow after the rain!
    Good luck, and best wishes for a blessed holiday season.
    Linda
  11. JP

    JP New Member

    Hello Malinda,

    Yes, it is very lonely at times. Even though many of us experience similar symptoms, we are still alone with our pain. Pain is a very personal experience.

    I have found this board to be a great source for giving and receiving kind words and for obtaining information. I recently sought out psychotherapeutic support to help me in my efforts to seek balance in my daily living. I am also considering joining a local support group. I have fought myself with this one, as I do not want to identify as someone living with illness. If I join, it somehow makes my conditions so much more real. This is a tough one for me.

    Anyway, we feel alone at times and we are never alone if we reach out. Keep reaching out...it can make a big difference in your life.

    Take care,
    Jan
  12. catgal

    catgal New Member

    I can relate to your feelings of being alone in this illness. My family was non-supportive; I couldn't discuss it at work as employers don't like to hire people with "chronic illnesses"; I didn't want to bore my friends to death with all my aches & pains nor my mate.

    It wasn't until I stumbled onto this Board back a couple of years ago that I found a kind ear and an understanding voice. You won't be alone here....you will be Welcome.

    Best wishes to You and All for a "Feel-Good-Thanksgiving"!
  13. wittykitty

    wittykitty New Member

    JUST TO LET YOU KNOW THAT YOUR NOT ALONE, I'VE BEEN ALONE
    SINCE, MY DIVORCE AND MY CHILDREN DON'T HAVE ANYTHING TO DO WITH ME.. THEIR VERY SELFISH AND THE FATHER IS BUYING THE
    GRANDKIDS OFF.I TOO HATE THE HOLIDAYS, I USE TO BE BIG IN TO XMAS BUT, EVER SINCE, DIVORCE I TRY GOING TO CHURCH AND THE MUSIC DRIVES ME CRAZY AND I JUST CRY, I HAVE NO IDEA WHY I CAN'T STOP THE TEARS. I DON'T KNOW OF ANYONE ELSE THAT HAS EXPERIENCED THIS?
    EVERYONE INVITES ME OUT BUT, I'M NOT THE SAME IN SOMEONE ELSES HOME AND NOT WITH YOUR OWN FAMILY. I'VE HAD TO PUT THE KIDS OUT OF SITE AND MIND, THEY JUST WON'T BUDGE AN INCH, AND FORGIVE AND FORGET. IT MADE ME SICK FOR YEARS
    AND I HAVE TO TAKE CARE OF MY HEALTH,AFTER TWO REAR END WRECKS AND ASSULT AND ROBBERY, I'M LUCKY AND THANKFUL THAT THE MAN UPSTAIRS GAVE ME ANOTHER CHANCE.
    IF YOU WOULD LIKE TO SHARE WITH ME I'D BE HAPPY TO LISTEN.
    LOOK FORWARD TO HEARING FROM YOU.
  14. Shirl

    Shirl New Member

    You flew in under the radar! But I did catch you, here is a big welcome to you too.

    I am sorry that you are so alone, and mostly about your children/grandchildren. That is cruel what has been done to you. No excuses for this as far as I am concerned.

    I have two boys and one girl, two grandchildren. I moved to the country, therefore I don't see them them as often as I did before.

    But my daughter does live close by. After awhile I got used to not having them in and out, who I missed the most was my grandson. I raised him till he was five years old, and he is sixteen now, and even though I don't see him often, we still have a great bond between us. We keep in touch on the computer/phone.

    It is terribly hard to give then their freedom, but if we love them, then we have to let them go. Not an easy task, as I well know.

    But it is so wrong to have strife like you are experincing. That gets into your heart and is hard to deal with. I have been threre a few times too, by other people causing unnecessary problems with my children, but they will come back to you, just have faith. Love is much stronger that a lot of us realize where our children/grandchildren are concerned.

    Will keep all of you in my prayers (if you want me to), God is greater than anything humans can do!

    I am glad you found us, there are some wonderful people here who will be happy to help, support or whatever else your needs are.

    Welcome to the board, and I do hope we hear a lot from you in the future.

    The holidays are hard on more of us, than anyone can imagine.

    I always try to be here during them, as I know that lots of people need at the very least a kind word or too.

    If you have friends to invite you to their home for the holidays, by all means GO! You may help them by their wanting to help you, sometimes we do entertain angels aand are unaware.

    Shalom, Shirl
    [This Message was Edited on 11/26/2002]
    [This Message was Edited on 11/26/2002]
  15. moma

    moma New Member

    My heart really goes out to you. I divorced 23 years ago and remarried 21 years ago. I felt so alone
    and ashamed of the way my ex was I became extremely depressed I really thought there was no future.
    I had two little children 3 & 5. I gave up on god and became even more depressed.(that was my biggest
    mistake.) I met a wonderful man and had some struggles the first few years as most divorcees do. Withthe help of God, a good physcholigist, and a wonderful new husband things turned out great. Don't give up!!!! Sometimes god
    has better plans for us than we realize. Sometimes they just don't happen as fast as the way we want them to.
    I have fibro, IBS, CFS, a plate in my neck from a car accident ( i got rear-ended) and depression from pain. I have severe problems walking and the doctors are still
    trying to figure put what is wrong. They say my leg problem is not a part of my fibromyalgia. I know god is going to help me through these problems also.
    I have a brother that has been in a nursing home with MS, a shunt in his head going down to his stomach
    caused from a cyst on his brain. He also have neurofybromytosis which I believe is worse than my fibromyalgia
    He has been in ther since he was 49. His wife left him when his 2 children were very young. She poisoned their
    minds against himat a very young age. I guess she couldn't handle his heath problems!!! He is such a strong believer in god
    that I think that is what gets him through each days. WHEN I feel really down I think of what a strong person he is
    and how he must feel but never complains(unlike me because I do). It helps me to realize life isn't as bad
    for me as it could be even when I am in severe pain.
    Don't give UP bcause I am sure your life will be brighter again someday!!!!!!! I will pray for you. I hope someday
    you write on here and tells things are brighter!!!! I am sure they will be someday!!!! God will help you through all
    of this. Just keep chatting with all of us and we will be your friends!!!!!
  16. karen2002

    karen2002 New Member

    Welcome ....This is a great place to come for support, and an understanding ear. Everyone is in the same boat, or has been, so we understand what you are experiencing. Have you tried finding a doctor that specializes in fm/cfs. Makes all the difference in the world to find an advocate.
    Best Wishes,
    Karen
  17. fibolady

    fibolady New Member

    when i found this board. it is very hard for "others" to understand but everyone on this board does, it's great.

    i'm glad you found the board and hope to be reading some messages from you. most of mine were pretty depressing when i started coming to the board because i was soo lonely and felt isolated, and this board can help you too!

    you will be amazed at the amount of information you can gather here. it is like a daily support group.

    warm regards, fibolady



  18. 1Writer

    1Writer New Member

    I'm fairly new to this site, too and wish to welcome you. All of us here know how you feel and everyone here is so willing to listen...it's a great site. My family isn't cutting me out of their lives, but sometimes I think they do patronizing me...sometime treat me like I'm crazy...I'm not and I know it...those of us that have been diagnosed (in my case w/CFS) have to just stick together and pray that someday there will be a cure and/or better treatments out there, but until then, we have each other...just remember, here, you are never alone.

    #1Writer
  19. queenbee69

    queenbee69 New Member

    other than the people here are wonderful. When you are feeling down come here and read or offer some advice to someone, it seems to help me. When I think that I'm ready to give up, I come here and realize that there are so many people that are alot worse off than I am in some way or another. Try and be good to yourself, you deserve it! My thoughts are with you! queenbee
  20. dlizard

    dlizard New Member

    Malinda... we are just like you!!! That's what so great about this place!!! You are understood here! and welcome!!! I tell you this,,,,I've never felt more alone than the day the doctor told me I didn't have lupus I had fibro.. I came home and looked it up and knew he was wrong again.... you know the story* anyway, then I found these people here and this place!!! my life has changed so much as a result and I am SO thankful!!!! everyone here has been so helpful and provided intersting antedotes to the daily struggles I've been dealing with since I was a young young child! I now know a place I can call home... use the resources dear.. you'll find help here but the alone part doesn't necesarily go away... I still feel socially outcast since I can't really participate alot of things but the resources here are immense and challenging to your mind.. as well as your body! just know we are all out there "just like you"... sometimes that helps me! we're glad you're here.... stay a while!!!!!!!!