New here, need some help

Discussion in 'Fibromyalgia Main Forum' started by timsangel, Nov 30, 2006.

  1. timsangel

    timsangel New Member

    Hi ,

    I am new to this board, I started getting really sick a little over a year ago, no energy (could barely walk form living room to bathroom)had some chest pain, muscle weakness in arms and legs, stinging pains thru out the body,aching off and first of course they checked my heart , which was fine, then they started with the depression and anxiety b/c none of the things they were testing for was coming back positive...I knew it wasn't either of these things but I played along with the first Dr and did a Wellbutrin trial, no improvement so asked him to send me to a neurologist b/c a few years prior to this I had an ER Dr tell me he thuoght I had the beginnings of MS, nothing found at that time to support this...This Dr finally referred me to a neuro who spent maybe 10 minutes with me before he says same thing as the Dr who sent me there, big surprise and tells me he is starting me on cymbalta and to come back in 7 weeks if no improvement he is sending me for a psych eval!!!

    Needless to say I left there feeling defeated and was crying and told my husband I was not seeing any more dr's maybe if I collapsed one day then they would believe me...thank God my husband is as sweet and smart as he is , he calmed me down and then told me I needed to see a female dr b/c he feels that a lot of male dr's use these dx's when they can't see the answers in black and white in front of them, that they just assume as women we are depressed and anxious and that causes all our I did what he suggested , found a female PA actually who was more intelligent than either of the 2 dr's I saw, she did all kinds of testing and sent me to a neuro in Indy(kinda freaked at first--male) but he was amazing, he believed me from the beginning...his first thought was Myasthenia Gravis but tests kept coming back neg, so he sent me for sleep study both night and daytime and found out I have narcolepsy...big shock...I am being treated for that but cont to have the stinging pains and the aching has become worse and if I have any part of my body in the same position for very long I can barely move it and the pain is awful...Even tho I am on meds for the narcolepsy and sleeping better at night sometimes I feel like I am in a daze during the day...he feels it may be fibromyalgia and since I have been doing research on it I think he may be right , he wants to refer me to a rheumatologist but I didn't want to go to Indy for this (3 hr drive one way from home) so I am looking for one around Louisville or Cincinnati , I am located halfway between these cities...I want one who is familiar with fibro b/c I don't want to go thru what I did in the beginning of this with dr's not believing me or thinking it was all in my head...So if anyone knows any dr's in these cities that they could reccommend I would really appreciate...

    Sorry this is so long, this has been the longest journey of my life and I feel I've only started it!!!

    Thanks in advance for any help...Kawanee
  2. timsangel

    timsangel New Member

    Thanks so much for your help, I have been trying to do some research and sometimes it feels as tho my head is spinning. It's hard for me to sit at the computer for very long b/c I start hurting so bad and then again my mind just can't seem to stay focused ... I was hardly ever sick before this hit last year, never went to dr's, it's really tough getting used to needing help from others when I was usually the one helping others. I have been a nurse for 18 yrs and have actually had to quit my job recently b/c the stress was just to much and making me feel worse by the day..I will start the other thread for the dr hunt, thanks again for your advice, it really means a lot to have aplace to come to where people understand...
  3. AnneTheresa

    AnneTheresa Member

    Welcome to the board Kawanee! Your symptoms sound very similar to mine. I also had to leave my job (six years ago) due to the severity of my fibromyalgia symptoms and my adverse reaction to stress. Although it felt like a huge loss at first, leaving the workplace turned out to be one of the best things I could have done for myself.

    This board has been a great help to me. I've learned a lot and have benefited from knowing I'm not alone with this illness. I hope you find the board to be a good thing in your life, as well.

    I wish you the best in finding a good doctor who will work with you to put in place an effective treatment plan. As you said, this is surely a long journey but with the kind support of your family and the support, friendship and information that is available on this site, you need not feel like alone.

    God bless,
    Anne Theresa
  4. Pianowoman

    Pianowoman New Member

    Welcome to the board. I agree that what you are going through is so similar to many of us. It's wonderful that you have a supportive husband.
    You have come to a very good place, here. There is so much great information and support. It's a process though and answers come in time.
    Seeing a Rheumatologist can help if he/she knows about FM. There is a good doctor link at the top of this page. It might be a place to start.
    Good luck in your search.

  5. carebelle

    carebelle New Member

    First let me say I'm sorry you are ill.What you are going threw sounds very much like what most of us have gone threw with Doctors.

    I am glad you have found this board there are lots of wonderful people here with good advice and Knowledge.When you are in need of understanding please feel free to drop in and vent.

    I noticed you are in between Cincinnati and Louisville .I grew up in Cincy but I also lived in Radcliff for several years while my husband was in the Army. So I know the area very well.Or I use to anyhow its been years. I still have several friends in Radcliff Ky.

    Hang in there and yes you are very right We all are on a long Journey trying to find out how to treat these DD's .I have both FM/CFS .If you click on my name to the left, it takes you to our Bio and all of our pass Post so you can read what others have written about.
    Welcome again I hope I have been of some help.
  6. Susan07

    Susan07 New Member

    If no one comes up with a referral there is a place on this board to find doc's in your area.

    Also get a list of all rhuematologists and start calling! Not fun exactly but very necessary. Ask the receptionist if the doc has FM patients.

    Good luck,

    LEFTYGG Member

    Dr Blatman in Cincinnati is a pain management dr and very good with fibro. his nurse has fibro and is sooo nice. hes out of network tho
  8. Nimzovich76

    Nimzovich76 New Member

    Just curious.
  9. timsangel

    timsangel New Member

    I am so appreciative of the support you all have already shown me, I am so thankful I found this place. I know I will be able to find answers here. I was tested for so many things in the beginning and lyme was one that the dr mentioned but I don't have copies of any reports stating any results for it and I got all copies from the first 2 dr's when I decided to switch dr's so if they had done it , it should be in that Once again thank you for making me feel welcome...
  10. timsangel

    timsangel New Member

    Thanks for the info, it's nice to have a place to come and find answers b/c at times I feel as tho I'm drowning while looking for the were close in your guess of Carrollton , I'm on the Indiana side of the Ohio tho...:)
    I have a son who lives in Cincinnati. Thanks again for the information , I really am hoping to find alternative treatments, I hate taking meds, never been good at

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