HI- New from Florida-going to Suffolk County

Discussion in 'Fibromyalgia Main Forum' started by sarners1, May 29, 2003.

  1. sarners1

    sarners1 New Member

    Hi -I have had Fibro and CF for 6 years. I have tried so many med that I do not evevn know for sure what works and what does not. I need help as my husband and I are going to the East End of Long Island for the summer. I think this may be the last summer that I can go away. I feel so lousy.
    I am looking for someone out near Southampton and/or a Support Group-even going West on Rt. 27. (mooriches or any othe towns). I hope that I can get some suport here as I really believe that nobody TRULY understands this disease . Thery may act like thay do,but There for the Grace of G-D go I. They are not walking in our shoes. I am getting older(57) and am a Grandmother and I just cannot do what I would like with my grandchildren or to help my Daughter. I am having a very difficult time with my son and his family ,which makes my emotions worse and I get very depressed-not regular depression-just have not been able to get out of this flare and I cannot SLEEP. I take klonopin Ambien and sometimes Keppra. The Dr tried Neurontin but it was awful for me. I am on so much medication that my mind is terrible. I forget everything(short term) I am on Paxil-wellbutrin-thyroid meds -prilosec- premarin and the Duragesic patch, and that is just in the AM. I am afraid that I am overmedicated but my Dr. says I am doing better so stay on the meds. He is a very well respected Reumatologist and works on many studies in FMS and Chronic Fatigue. I am just curious if anyone takes as much as I do.
    I am also seeing a psychologist to help me accepy my limitations. I think that is the hardest. I used to play tennis-was starting Golf etc. Now I can hardly do anythinG.
    Well-that is my tale of Wo. Hurting like the rest of us.
    I also did the natural route-Vitamins,homeopathic and Accupuncture. So I am stuck. I will gladly love to hear any new ideas or treatments. You all have a Good Night.
    Thanks for listening
    Sue
  2. Princessraye

    Princessraye New Member

    Sorry I don't have any suggestions for you but I bet someone will.
    I am 45 and have had this 16 years so I do understand.

    I have learned to laugh at my forgetfullness, however can't seem to laugh at my other symptoms.

    I believe it never hurts to get a second, or third, opinion.

    My best to you
  3. Shirl

    Shirl New Member

    Hi Sue, welcome to our world. We do understand how you feel here, we are all in the same boat, so to speak. I have FM, have had it now for 20 plus years. But I do know how the fatigue feels with CFS, I get it sometimes, but it does not last as long as yours would.

    I am so sorry you are having such a bad time right now.

    I cannot help with the meds, my system does not handle them well, the only thing I take is Xanax once a day for 'racing brain syndrome', yea, another one of those 'syndromes'!

    I take only supplements, herbs, vitamins and minerals. Which you said you have already tried. I am doing pretty good on them, and hope they continue to work for me, I have no other choice.

    One thing I did do, and that was move to the country, left all the stress of city life behind me.

    You sound like you have a lot of stress between letting go of your former life and accepting your limitations? I had to work through that too, we all do. I mess up sometimes, but mostly I have learned to listen to my body and get in less trouble this way.

    Hopefully someone here can help with where you are vacationing, I am in Louisiana!

    Again, welcome to the board, and hope we hear from you often.

    Shalom, Shirl






    [This Message was Edited on 05/29/2003]