Discussion in 'General Health & Wellness' started by BeckyHurts, Mar 5, 2009.

  1. BeckyHurts

    BeckyHurts New Member

    My name is Julie and I started this for my Aunt Becky who has no support from friends or family members who have come to call it all "in her head".... I know that fibromyalgia is real and I support her however I dont know and am sure that I can't even begin to grasp how she actually feels. People are calling her all the things that I am sure everyone on here has gone through. She is starting to fall into depresion and feels like she's going crazy. She really needs the support and if you guys could show her that shes not the only one and respond telling her your stories, I have set her up with this and Ill send her on so that she starts to feel like there are people out there that just "know".... Thank you!
  2. rockgor

    rockgor Well-Known Member

    Welcome to the board. Aunt Becky may also want to visit the fibromyalgia board and the
    depression board.

    Since these DDs (darned diseases) tend to isolate us, she may also want to visit the chit-
    chat board which is a place to socialize and discuss pets, kids, TV, music, etc.

    You can find the board rules in the upper right hand corner.

    Good luck

  3. nixon

    nixon New Member

    Hi Becky, My name is Andrea and I was diagnosed with Fibro in 2006.
    You also suffer with FMS, or CFS ? First off let me say It's NOT all in your head, and anybody who hasn't lived it has a HARD time understanding it! I've lost alot of my friends because of this, they just do NOT understand. With's hard to ever make any plans because I never know how I will be feeling. It's definetly NO FUN!!
    Try not to let their comments weigh on you TOO much. When 1st being diagnosed my Dr. even thought I was crazy, but he knew I had almost ALL of the tender points that they use to diagnose FMS. He left my town, and I had to go thru many drs. until I could get some help! It can be quite "taxing" on the psyche!! I'm usually over at the Fibro, or ME/CFS board, so please use that's way more informative!!
    Try not to get down on yourself.....Stay Strong....I hope to talk to you on the FMS or ME/CFS boards!!
  4. Janalynn

    Janalynn New Member

    Please have your Aunt visit the Fibro board - you can select the board over on the top right corner. LOTS of people there in the exact same boat. Lots of caring and empathy. It will be so good for your Aunt to know that she is not alone in anything that she is feeling both physically and emotionally.
    People are very welcoming. Just start a post saying she's new to the boards, then maybe a little bit about herself or what she needs most help with.
    She might also get a great boost from posting replies to others once she gets comfortable. We all learn from each other!

    You can tell her you found a group that "know".
    How sweet of you to seek support for her. She's lucky to have you!

  5. TwoCatDoctors

    TwoCatDoctors New Member

    Pardon me but I have to put this out there, but asking people to pour our their stories to a stranger that isn't even on this board, could sound more like someone doing research work or looking to write a book based on those stories and not compensate people for their stories. Those people do come on the boards and unfortunately ask for people's stories.

    Becky, why not just go over to the Fibro board and let your Aunt read the posts there instead of asking people to tell their stories to your Aunt that isn't even on this board. If reading the posts already written on the Fibro board doesn't satisfy your Aunt, nothing will.

    Again, I'm sorry if I have offended, but we cannot convince your Aunt. She needs to read the posts already written on the Fibro board and decide for herself. You can also get her to local Fibro groups that meet (check your senior centers as they provide rooms for meetings for all ages of adults). If your Mom starts attending local Fibro meetings, she can decide for herself what she wants to believe. Hugs.

    [This Message was Edited on 03/06/2009]
  6. lsdob

    lsdob New Member

    sorry about sending out a reply before I finished where was i O yea I lived in an area where familly doctors were almost non existent. If you had a doctor you hung on to it. Well anyhow i had to go to walk in clinics to see doctors. In the 5 times that I went I received 5 different diagnosis. From that I was looking for drugs and nobody can be that sore to that I was looking for attention. Everytime I left one of those clinics I would cry all the way home. Finally I had had enought and searched for a familly doctor. I had to drive about one hour to see her but let me tell you it was well worth it. I got this doctor and she started treating me for depression. She told me that we needed to get me to a state where I can deal with things. Then she sent me to see a Rhematologist and within a matter of minutes he knew what was wrong with, he called it Fibromayalga. Something I had never heard of. But finally I had a name to go with what was wrong with me. I was not crazy and I was looking for attention. I truly was sick. In 2005 when I was diagnost I could not stand my husband to hug me, nobody could hold me or touch me. Its been a long road but now I finally have it under control. Don't get discouraged because there is light at the end of the tunel. and you will be fine. Follow your doctors and work hard with them and soon the flair ups will be further and further apart.
    You need to beleive in you and not worry about what others think because you know as well as I that this decease curse or what ever you want to call it will not beat you. You everyday one at a time and you look out for you
    I was fortunate that I had a new friend that stood by me and ,loved me threw all the hard time. You seem to have a neice that beleives in you and cares deaply for you. When you feel down talk to her. Because she is your rock that you will need to get threw the worse time.
    I wish you all the best and don't give up don't let this control you. You need to control it and in time you will. God Bless and take care. You will be in my prayers

  7. Shear-Joy

    Shear-Joy New Member

    Dear Julie,
    My name is Ian I help people in Gainesville Fl. to minimize their pain using light therapy.
    If you would like more info check my profile. Good luck GOD BLESS
    Sincerely Ian
  8. Rgonza2

    Rgonza2 New Member

    Hi Julie,
    You might try and get the book "Women Living With Fibromyaliga" by Mari Skelly. It was so comforting to me, because I used to constantly worry and get depressed (which of course only made my symptoms worse!) about people judging me and thinking I was faking it. In the book it talks about how you have to let that go and not care what others think (I know, easier said than done) and only focus on getting better and your are worth it!! Sometimes it is hard for women to put themselves first (I know it is for me..I always put my grown kids/grandkids, get the point...EVERYONE except for me first). Sometimes just letting that worry go can help out alot with your stress level. I know everyone has suggested the fibro board and they are is a godsend and your Aunt (and you) will get some wonderful ideas and support for managing this illness.
    Best wishes,
  9. wanna_be_artsy

    wanna_be_artsy New Member

    I know exactly how you feel. I have been dealing with the pain and fatigue for almost 20 yrs. I have been diagnosed with Fibro by one Neurologist and several other has been just recently when my new PCP (who is knowledgeable and supportive re: fibro) told me that I needed to take the Fibro more seriously and try some new meds that are for Fibro.

    Most doctors seem to think that if they can't "fix you" within a reasonable time frame - it must be "all in your head"! I work in a medical office and have witnessed exactly this on two occasions -and I've only worked there 1 yr!!!

    Don't give up hope Becky! You are not alone! You are doing the best thing possible - reaching out. I think everyone one of us that deals with CHRONIC PAIN need supportive people around them. I would advise that you have a Fibromyalgia community give you the name of a doctor in your area that is knowledgeable in this disease. Good luck and hope to hear from you :)

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