HI- New from Florida-going to Suffolk County

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

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

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]