New to the group.. and sad

Discussion in 'Fibromyalgia Main Forum' started by allie2, Sep 5, 2002.

  1. allie2

    allie2 New Member

    Hi everyone! I have been chronically ill for about six years. I have been poked and prodded by many doctors.I even feel frustrated because every doctor turns their back on me just when I think we are getting somewhere. Well I finally have a diagnosis of Fibromyalgia... What a relief it was to know what was wrong all this time. However, my current physician is not very understanding of my needs. I have also tested high for rheumatoid arthritis. I cannot keep a job and am constantly getting kicked out of college due to illness. I have been doing lots of research on my illnesses, disability, social security, and home education. I feel so alone in this my family, friends, and significant other really are not providing enough help. I really need a friend now more than ever. I used to be the most independent person and now I feel so helpless and frustrated. I am also about to lose my health insurance and have been denied by companies for a new policy. If anyone has information on treatments, disability, physicians, health insurance, or just wants to talk please do. Thanks,
    Allison
  2. allie2

    allie2 New Member

    Hi everyone! I have been chronically ill for about six years. I have been poked and prodded by many doctors.I even feel frustrated because every doctor turns their back on me just when I think we are getting somewhere. Well I finally have a diagnosis of Fibromyalgia... What a relief it was to know what was wrong all this time. However, my current physician is not very understanding of my needs. I have also tested high for rheumatoid arthritis. I cannot keep a job and am constantly getting kicked out of college due to illness. I have been doing lots of research on my illnesses, disability, social security, and home education. I feel so alone in this my family, friends, and significant other really are not providing enough help. I really need a friend now more than ever. I used to be the most independent person and now I feel so helpless and frustrated. I am also about to lose my health insurance and have been denied by companies for a new policy. If anyone has information on treatments, disability, physicians, health insurance, or just wants to talk please do. Thanks,
    Allison
  3. kimo

    kimo New Member

    Allison,

    Sorry you are feeling so overwhelmed. This fibro will do it to you. I know how it feels to go from doc to doc and not get the understanding and compassion needed. I can remember getting sick to my stomach just smelling the hospital's smell. I was so tired of doctors and hospitals that I was about to pull my hair out.
    Just take one day at a time, sometimes one hour at a time, seek out a pain clinic, I have found that they are more compassionate. I have heard that is is difficult to get disability but I would try for it. I also understand about the health insurance problem. I am on a policy of my own and the premiums are outrageous. I had to increase to a $3,000.00 deductible and am still paying 2800.00 a year, just for me. I can't switch to another because no one will except me. My heart goes out to you, many others on the board have better advice than me, just wanted to welcome you and say hang in there....KIMO
  4. ohmyaching

    ohmyaching New Member

    Please post as often as you feel the need. Everyone here understands your need for validation of what you are feeling because we all feel pretty much the same. I was so fustrated not having anyone believe me or even want to believe me. It's nice to have someone who understands.
    You can do a search of the old messages for information from past posts or try looking through the library (see tab at top of page) for some of the things you mentioned.
    Peace
  5. Coping

    Coping New Member

    Welcome to the greatest support group on earth. I can certainly relate.
    I know you must feel extremely overwhelmed. If you are too stressed to deal with the worry of disability, perhaps you could go to an attorney. I didn't use one for my disability case, but I was prepared to.
    Disability attorneys don't charge you any money unless you win your case. It may take some stress off of you to have one handle it.
    As far a treatments here is a link to the "good doctor" list.
    http://www.co-cure.org/Good-Doc.htm

    Copy the above link and paste it in your address bar. When the page loads you will see all the countries and states. Click on your state and see if you can find a doctor near you.

    I wish I could help you with health insurance, but I don't have any and cannot get approved with my pre-existing conditions. If you get approved for disability you will get Medicare 24 months after they determine your disability began.

    Right now I know it is hard for you even see the light at the end of the tunnel. Try to focus on one thing at a time.
    If you ever need to chat, my email is in my profile.
    Sincerely and God Bless you,
    Tricia
  6. herblady

    herblady New Member

    allie, this stupid disease seems to rob us of our lives. you can come here and talk to us, we know where you are coming from. hang in there, kid. also if you have RA, there is an arthritis board here you might want to visit. cindi
  7. TeresaBnGA

    TeresaBnGA New Member

    Everyone of us can relate to how you feel! I am so sorry that it is building up on you like that. But you have come to the right place! We are all here to help you! No question is a dumb question and you can only find answers to questions that you ask! Again welcome! Sometimes life can seem hopeless unless you are with friends!

    Soft hugs!
    Teresa :)
  8. Dara

    Dara New Member

    you have found a great place to share your worries and feelings. Everyone on this board are so nice, I am so thankful I found this site. I don't know what State you live in but I know that in my State (Oregon), there are a lot of agencies who can help you until you receive your disability. In fact, they will help you get it and in the meantime can help with rent assistance, food stamps, utility assistance and also a State funded medical insurance program. Try checking with your state Dept. of Human Resources, also we have a department that provides all kinds of help to the aging and disabled.

    Dara
  9. teknival

    teknival New Member

    Just been saying how weird it is changing from being independent to having to accept-and even ask for help**
    i haven't been on this board very long but i think you've come to the right place. i'm from the UK, so if you're not i can't help you with much, plenty of books i've read you can find information on all of this though, i have got all of them from my library-getting them to get books from other libraries for me.looks like you've started doing that yourself already**)
    i finally got my benefits a while back, some advice-just concentrate on how bad the illness can be when you are telling them about it. i was a bit too positive the first time** tell them all the problems you have.
    how come you are going to lose your health insurance?
    the doctors haven't been able to help me much anyway but i think there are some good ones in america for fibromyalgia such as Dr Selfridge (although america is a big place i know). it's jsut acupuncture that's helped me so far although i need the doctors for my painkillers, and health insurance over here covers for some sessions of acupuncture and also oestopathy which i hope to try soon
    have you told the college about your illness? i have deferred from my course until i am better. trying to concentrate on getting better
    e-mail me anytime about anything- i don't get to use the internet all that often but i'll reply eventually***
    teknival@excite.com
    anyways i wish you all the best and a welcome to the board-the people here are lovely**
  10. Shirl

    Shirl New Member

    Hello Allison, I see you have already met some of our wonderful members here.

    This is a wonderful group of people, and you will find some lasting friends here who understand just how you feel at any given time.

    You are headed in the right direction, you need to educate yourself, as most doctors are just simply in the dark about Fibro. Sometimes you will fine one that will allow you to help them help you.

    Hopefully your family and friends will began to understand how to help and support you, but you will have to educate them also. Those who don't have this pain, cannot understand it!

    I recall my back hurting so bad and no one understood that if I moved a certain way, I would scream with the pain. Well, my huband got a 'charley horse' in the calf of his leg, I told him; 'see how that feels?' he said yes! I told him that is exactly how my back feels, its spasms, and the bad part is I can't reach it to rub it out like you are doing to your leg!

    Believe me, I could see the realization dawning in his eyes!
    That was the beginning of the understanding for him and my children what I lived with everyday.

    Glad you have found our board, and am looking forward to knowing you better.

    Take care, and keep educating yourself and those in your life too.

    Shalom, Shirl

  11. sybil

    sybil New Member

    i live in the U.K.
    FMS can be very overwhelming.i have only recently been
    diagnosed.at first i was thrilled that someone knew what was wrong with me.that soon turned to frustration and anger when i realised that the medical proffesion are not exactly helpful in trying to treat it.i have had a dreadful time with my G.P. and i have had to fight for the little treatment i have received so far.i wil soon be having physio and water therapy,which is supposed to be good for FM.
    i have been off sick from work for over 4 months now and at risk of losing my job and my salary has just dropped,as a government employee i get paid if i am off ill,but it won't last forever.at some point they will ask me when will i be returning to work,which i don't know!
    i am lucky in one respect,i have an understanding partner.but it worries me that he may get fed up that i can't do things we used to do together.he is 11 years younger than i am.
    as hard as it seems,you will learn to be strong and get to know more about your condition than you probably do now.thsi site has given me lots of information and everyone on here knows and understands how you feel.
    also,very important,try to enjoy yourself as much as possible in small ways.if you feel a bit better on some days,go out and do something you like to do.you may suffer for it afterwards,but at least you will have had some fun!
    *hugs*

    sybilxxx
  12. PMangels

    PMangels New Member

    You have come to the right place. There are a lot of caring and supportive people on here. There is a wealth of info on this board and so much to learn from other people who are going through what you are. I know how frustrating it is to find a doctor who will listen to you. Most of us have been there. It will help you to stay connected to the board so you can learn as much as you can about your illness as well as get the support you need. I wish you the best and keep in touch.

    HUGS
    Arlene
  13. kadywill

    kadywill New Member

    Don't despair....I was as upset as you are the other night and when I found this site and began reading and writing, I began to understand that I DID have support and I feel as if I know so many of OUR friends here. It helps so much. Welcome!!
    In health,
    Kady
  14. allie2

    allie2 New Member

    Thank you everyone for helping me get through such trying times. It feels so good to hear others who understand...and thank you for telling me about all the helpful information. I hope to meet many of you on a more personal, friendly level. I can see that there are some very loving and kind people in this board. I am so glad to have joined you all.


    Hugs to all,
    Allison
    [This Message was Edited on 09/06/2002]

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