Hi Everybody Im new to this site

Discussion in 'Fibromyalgia Main Forum' started by SummerWind38, Aug 20, 2005.

  1. SummerWind38

    SummerWind38 New Member

    Hi Everybody as usual I was up late not sleeping I came across this message board I was so happy to find others like myself who know what it feels like to live with pain...I'm Robyn I live In Ft Myers Beach Florida I have have had fibromyalgia for 25 years. I will be 40 in Sept. I always like feel like im 80.

    .It took years and several Dr's to get diagnosed. I knew what I had from reading & research I worked as a Medical Assistant til I got so bad I couldnt continue to work ..All Dr's didnt want to hear that I knew what I had, I guess it threatned them. Most of told me it was in my head And get on with my life How do you do that? when things people take for granted Like taking a shower,cooking even walking out to get the mail gets you so out of breath.

    After awhile of not getting anyone to believe me I was starting to believe it was in my head. When I lived In Connecticut and the first sympoms were setting in My mom dragged me to every Dr. She thought might be able to help me.. Back then(1980) this disease was unheard of no Dr. knew what is was, especially didnt know how to go about treating it.

    Also Dr's don't like to admit they don't know what is wrong with you .. They will just say its in your head and suck it up and move on with your life easier sad than done.

    So my mom tried every referral went to all kinds of Dr's just hoping to find some kind of relief. After a million tests EMG's, nerve blocks, etc. pain doesnt show up in blood tests or on a Xray its just so frustrating .. I was living In Connecticut at the time and I was so miserable in the bone chilling cold ..The Rheumatologist I finally found told me I had to get out of the cold if I didnt want to end up in a wheelchair.

    So I moved to Ft Myers Florida almost 8 years ago in October The weather is hot and humid which feels good on my aching body. I have my good days and my bad as all of you can agree. I lost my mom and dad less than a year apart both from heart attacks 3 years ago. I sank into a deep depression as they were my best friends and all the family I had left as I am an only child. Grandparents are also gone.

    I really havent been able to find a Dr here that understands fibromyalgia. Rheumalogists have years long waiting list to become patients. I go to pain mamnagement clinics. Where I was receiving shots of magnesium and B12 along with other meds... Then he switched me to Neurontin, Methodone..and Zoloft the only one that helped even a little was Zoloft the other gave me such bad side effects and nightmares .. That I would take the pain over the terrible side effets.

    So im still trying to find a Dr and a program to help just dealing with Fibro IBS and the many other wonderful things that go along with Fibro..on a daily basis

    I cant drive I do have a golf cart that I use to get around in I live near the beach so they are permitted most places It took me 7 years i'm finally getting SSDisability. Its not enough to take care of all the bills and prescriptions.

    The Lady I dealt with at Social security told me I was lucky to get what im getting since this " disease" isnt really real and If i wasnt so lazy I would be able to work instead of just falling back on a fake condtion where you have an occasional bad day where you cant sleep.
    Grrr I wish sometimes we could have someone live in our shoes for 1 day and see what a day living with Fibro is like bet they would change there tune fast...lol

    Sorry If this letter seems so negative as the fibro has been flaring up really bad the last few mos. as my partners family which is now my family have been having alot of health problems so the stress has been building.

    I am so thankful for my partner of 2 years she is my rock understands as best as she can what I go through every day and is such a huge support system for me, as I try to be for her. We have 2 furry kids Friday she was born on Friday the 13 during hurricane Charly she is a year old persian and Kally 3 yr old calico. There both so affectionate, smart

    So thank you so much for letting me get all this off my chest im so glad I have found a site that understands what its like to live with chronic pain if anyone has any suggestions or just to chat I love some new friends can never have too many I hope everyone has a good day.

    Hugs Robyn





  2. Shirl

    Shirl New Member

    Glad to have you join us. We do have a 'Doctor Referral' link at the top of this page, many of the CFS/FM doctors listed are referrals from the members.

    Also someone from your area on the board will be glad to share their doctor with you.

    Again, welcome to the board, and I do hope you find a good doctor soon.


    Shalom, Shirl
  3. tandy

    tandy New Member

    Welcome!! so glad you found us too~
    Its nice to be amoungst others who really know what your talking about and have no doubts as to the reality of this disease~
    I love the name you chose!! thats beautiful~
    Your lucky you have a mate to understand and beleive you.
    I'm so happy for you~
    Its tough to be looked down on by the world where most think Fibro is'nt real or that it is just a name your given when they can't find anything else wrong!

    For me FM has been progressive.
    I worked the first 5 yrs with it but then realized I could'nt keep up with the demands of a job and kids.
    Now i'm on ssi for the last 8 yrs.
    I too had to fight the system. With the help of a legal aid rep. I won my case~
    Its nice to meet you and hope to be of some help~
    Take care :)
    Hugs
    Tandy

  4. Meekah

    Meekah New Member

    Glad to have you aboard!!! It's nice to know that other people TRULY understand.

    Hugs and Prayers
    Meekah
  5. BLUEROSE7

    BLUEROSE7 New Member

    Just wanted to say Welcome to a great Board with lots of caring, supportive and understading people.

    I cannot say enough about this great board!! When you feel like no one may understand...We Do!! Im so sorry you are having to go through all this as well, but im happy you found US!!

    Welcome Aboard!!
    Hugs
    Bluerose
  6. Shannonsparkles

    Shannonsparkles New Member

    Welcome to the site, Robyn! I love your nickname. :) Hope to hear more. Hug! Shannnon
  7. jc2jd

    jc2jd New Member

    Man, do I know what you are going through! The first rheumatologist I went to, whom I was staking my very life on that he would make me well...was such a jerk! He told me that there is no such disease as Fibromyalgia. That in Latin it simply meant unexplained pain and that it was not real. He told me to pull myself up by my bootstraps and get back to work!! And above all...do not lose my job!! I would never find another job if I got fired for not showing up. I sunk straight downhill after that. I had waited so long to see him and was sure he would be the answer to my prayers. These docs do not realize how much we depend on them.
  8. ronter7

    ronter7 New Member

    just wanted to say hi and welcome to this wonderful place with tons of wonderful people!
    ronda
  9. pam_d

    pam_d New Member

    Sorry you are suffering so much from this awful disease, but very glad you found this board! You'll find a world of help here, everything from the most beneficial meds, supplements, diets, treatments, etc. No one thing seems to work for everyone, but sometimes a combination of things helps. There are great weekly bulletins that get e-mailed to members that contain the latest research & studies on FM & CFS.

    The best thing you have going is the support of your partner---my husband is also a great source of strength for me, he's the one who first suggested "maybe you have this thing called fibromyalgia" because he researched constantly; he was the one who located this message board for me. It certainly helps to have a tower of strength to help during your hardest days, so having that puts you ahead of the game; some here aren't as fortunate.

    We also have two wonderful kitties, Wendy & Gracie. Gracie's a calico & not exactly a rocket scientist, if you know what I mean, but she's as affectionate as they come, more like a dog than a cat. Wendy's our smart cat. They definitely brighten those darker days, pets are so amazing that way.

    I'm glad you are here; be sure to read, read, read---I learn new things everyday here---and post often, too. There's a great search feature here, too, of old topics & posts. You can imput "magnesium" for example, and find out what everyone has said about that supplement....I often check that just to see what's been written a about particular drug, supplement or symptom.

    You are right, you can never have too many friends, and the friends here really, truly UNDERSTAND.....

    (((Welcome Hugs)))
    Pam

  10. pam_d

    pam_d New Member

    We do have many Floridians here! You might post a topic titled "Anyone have great FM doc near Ft. Myers, FL?", for example to see if someone has a good recommendation for you...

    Hugs,
    Pam
  11. Mikie

    Mikie Moderator

    There is a good doc in Ft. Myers, Dr. Kenneth Galang. He is a doctor of physical medicine and has made FMS his specialty. He keeps up on the latest treatments and he is a very nice and caring man.

    Welcome aboard.

    Love, Mikie
  12. I hope you enjoy this wonderful board!