Desparately searhching for FMS info and help!

Discussion in 'Fibromyalgia Main Forum' started by liora, Sep 10, 2002.

  1. liora

    liora New Member

    My grandmother suffers from FMS as well as CF. I have just come back from a visit (she lives in NJ, I'm in TX)and the situation is very bad. I am trying to learn and understand everything I can primarily about FMS as this seems to be her main diagnosis. She has no support from her very large family except myself and my mother, but we are very far away and having difficulty helping her in such a limited capacity. I have been trying to convince her to try a temp to perm move here if I can find anyone to help her, as it seems she is not getting any help there. She has been working on finding a team of doctors for years (originally diagnosed CF about 10 years ago).
    She has had no relief from her pain and her condition seems to be getting much worse at a very quick and alarming rate. Currently she is experiencing cellulitis in her leg. There is a pronounced spot on her right leg however both legs and especially feet are extremely swollen. There seems to be no open sore or point of entry that the infection started at. She has been taking oral penicillin for several days, but the swelling and pain are increasing. I also noticed on one site it said corticosteroid medications could be a cause and she is taking hydrocortisone but I am not sure for what. Some of her ongoing problems are major sleep disorder, RLS, PLMS, possibly cushings disease, major ulcers in her throat and in her stomach, and of course severe chronic pain (I'm sure there is more). Oh and to top everything off she has a fractured vertebrate in her back from taking a fall. She is falling for no apparent reason these days, and at first I thought it was because she was tripping or losing her balance, however after witnessing it several times it's almost as if someone has given her a hard push. I almost think it is somehow related to the RLS/PLMS, but she is doing it while she's awake. She describes it as the same feeling you get when you are falling asleep and you feel like you are falling so you experience a violent jerking that wakes you up. But this is happening when she is wide awake. I realize this is alot of info and apologize for the length. She has some alternative docs helping and some traditional. Some seem to be okay and others just treat her like a crazy old lady. She has seen a doc for her cellutitis, but is stubborn about going to the hosp again becuase they don't acknowledge her FMS, but I fear what could happen. Looking for referrals in the Houston, TX area. Input and suggestions from personal experience on the rest. Thank you in advance is not nearly enough, but Thank you.
    Liora
  2. liora

    liora New Member

    My grandmother suffers from FMS as well as CF. I have just come back from a visit (she lives in NJ, I'm in TX)and the situation is very bad. I am trying to learn and understand everything I can primarily about FMS as this seems to be her main diagnosis. She has no support from her very large family except myself and my mother, but we are very far away and having difficulty helping her in such a limited capacity. I have been trying to convince her to try a temp to perm move here if I can find anyone to help her, as it seems she is not getting any help there. She has been working on finding a team of doctors for years (originally diagnosed CF about 10 years ago).
    She has had no relief from her pain and her condition seems to be getting much worse at a very quick and alarming rate. Currently she is experiencing cellulitis in her leg. There is a pronounced spot on her right leg however both legs and especially feet are extremely swollen. There seems to be no open sore or point of entry that the infection started at. She has been taking oral penicillin for several days, but the swelling and pain are increasing. I also noticed on one site it said corticosteroid medications could be a cause and she is taking hydrocortisone but I am not sure for what. Some of her ongoing problems are major sleep disorder, RLS, PLMS, possibly cushings disease, major ulcers in her throat and in her stomach, and of course severe chronic pain (I'm sure there is more). Oh and to top everything off she has a fractured vertebrate in her back from taking a fall. She is falling for no apparent reason these days, and at first I thought it was because she was tripping or losing her balance, however after witnessing it several times it's almost as if someone has given her a hard push. I almost think it is somehow related to the RLS/PLMS, but she is doing it while she's awake. She describes it as the same feeling you get when you are falling asleep and you feel like you are falling so you experience a violent jerking that wakes you up. But this is happening when she is wide awake. I realize this is alot of info and apologize for the length. She has some alternative docs helping and some traditional. Some seem to be okay and others just treat her like a crazy old lady. She has seen a doc for her cellutitis, but is stubborn about going to the hosp again becuase they don't acknowledge her FMS, but I fear what could happen. Looking for referrals in the Houston, TX area. Input and suggestions from personal experience on the rest. Thank you in advance is not nearly enough, but Thank you.
    Liora
  3. Jillian40

    Jillian40 New Member

    Liora -

    Your grandmama sure is blessed to have you in her life.
    I feel that God will honor your efforts.

    Though I may not have specific answers for you, I will
    try to direct you to some resources. First of all,
    when you go to the top of the message board page,
    you will find tabs. Click on the one marked Library.
    Here you will find research and coping articles written
    by doctors and other professionals. Also, look at the others, such as E-Mail Bulletin and Store.

    This site is owned by a Nutritional Company and many
    of the members are on their supplements, and speak
    highly of them.

    Secondly, go up to the top, and where it says "Search
    Messages" type in a topic, medicine, illness, or any
    thing else you can think of, and you'll get a list of
    previous postings on your topic. It will go back several
    months worth of postings.

    Thirdly, introduce yourself as a new member on a
    separate post and allow folks to welcome you. There is
    a really warm loving group of people who past here
    regularly.

    God Bless You, . . . . . . . Jillian
    Never Give Up, You're Doing The Right Thing By
    Coming Here!!!
  4. MicheleF

    MicheleF New Member

    Your grandmother is very lucky to have you. Jillian gave you some great advice; I'll just add that when you post, mention that you are new from TX; hopefully you'll get responses from fellow Texans. I know there's members from Texas here.

    If you're getting frustrated trying to find a specific answer, just ask...I'm sure someone here will be able to help you.

    Take care & best wishes (& a hello to your grandmother) to both of you. Michele
  5. Magnolia

    Magnolia New Member

    Everything you said about your grandmother is "old hat" to me. I mean that I have personal experience with it all. I have FMS/CFIDS and many other things which contribute to my understanding of all the symptoms you describe. In addition, I have some medical training which gives me another means of insight.

    There are many people on this board who can say the same thing about themselves so I'm sure you will eventually get all the answers and advice that you.

    The first thing you should do is investigate the Library on this site. You will find a lot of valuable info there.

    Another thing you can do is access previous discussions about certain symptoms and treatments by entering a key word or phrase in the Search feature at the top of the page. All previous references to the word or phrase will be there for you to study.

    When you want to discuss a particular symptom or treatment, just post a question or observation and you will have responses from others on this board who can help. Sometimes, we don't have any real advice to give, but you'll always find someone who understands and can commiserate with you and your grandmother.

    Your grandmother is fortunate to have you as her advocate. Everyone with these conditions needs such an advocate, but very few have one.

    Sincerely,
    Magnolia
    [This Message was Edited on 09/11/2002]
  6. liora

    liora New Member

    I'm not sure how to use these boards as this is the first time for me. I will read the notes to make sure I am doing it right. Thank you for your kind words and show of support. I will send a new from TX as you have suggested as well as search through the sight for all the info I can find. I think I am so overwhelmed by where to start I am just trying to start the ball rolling so to speak in any way that I can. Good news, I have recieved a call from my Gammy today that she is giving serious thought and consideration to making a temporary move for an indefinite period to Houston so that we can help her and give her love and support. Ultimately this is my first concern (as well as proper care from experienced professionals) becuase she is in a very unloving, negative environment. I feel certain this is part of the cause in her quickly diminishing health. how can a person get better if they do not feel loved? I sense her feeling hopeful after a long time of hopelessness.thank you thank you thank you. Just knowing the support is out there even for someone who doesn't personally experience the daily horror of this terrible condition is inspiring to me.
    Liora
  7. Shirl

    Shirl New Member

    Liora, I sure hope you get your Grandmother to move where you are! She will not only need the medical help, but just plain help to survive, along with a lot of love which you seem to already have for her!

    Here is a good doctors list you can check into; http://www.co-cure.org/Good-Doc.htm

    Also, as for navigating the board; At the top of this page, where it says; 'Home', 'Library', 'Store' and 'Community' is a wealth of information. Just click on anyone of them and when the page comes up, type in the information you are looking for, such as; Fibromyalgia, CFS, Cushings, etc. Articles and loads of information will come up for you.

    I hope you find some serious help for your grandmother, and please keep us updated on her condition.

    Shalom, Shirl