Newly DXed and new here

Discussion in 'Fibromyalgia Main Forum' started by bronwyn1972, Oct 18, 2005.

  1. bronwyn1972

    bronwyn1972 New Member

    It is so wonderful to find this board!!!

    I am 33 and was just dxed 2 weeks ago, after suspecting for over a year, but hoping the pain was just the remenants from back fusion l5-s1. I have gone from being very active tobarely able to move, no sleep, flu-y feeling all the time with sharp pains in shoulders, back and legs. I have suffered migraines for 10+ years and have had various menstral issues this year culminating in an endometrial ablation.

    I am currently taking (from ortho surgeon that did fusion, who is trying to wean me off - meaning increased pain and other symptoms):

    Elavil 100 mg at bedtime for sleep (and average 1-2 hours falling asleep and wake up 3-4 times a night)
    diclofenac (NSAID) 2 per day
    propranalol 40 mg a day to prevent migraines
    skelaxin 3 per day
    iron (for anemia)
    darvocet - 2 per day

    I am wanting to transition everything to the rheum that dxed me and changed several of them, including the darvo and elavil, as I am not sleeping and in pain constantly. I will see her the day that my refills are due to be called in from ortho (so I am cutting it close as he takes 3 days to call them in), but I don't feel that this regimine that I have been on for a year is working. Any suggestions? I can't tolerate cymbalta (tried it for migraines and broke out into hives) or neurontin or topamax (took for my back and made me totally batty and had no effect), so I am scared of lyrica, although they are currently running research on it here.

    I feel lucky in that I work and live where Dr. Crofford is, which makes it more open to fms, and I currently go to her clinic (I see a NP), but I am a little fearful of the path ahead of me, especially here in KY where they dislike anything that can be called a recreational drug (like vicoden, etc) given the pain that I am in now. I am fortunate that I can work right now and I have started pilates (can't walk for long yet with the back) and hope to build up exercise capability, but there are so many other things I miss (like being with the husband intimately), shopping, playing sports, etc. that I want to do (fortunately the hubby does all the cooking and any of the pushing and pulling house and yard work, so I do what I feel up to and also the dishes :)

    I would enjoy gardening again (what little I do like) and helping my elderly widowed mother around her house, but I can't, and as an only child...

    Any suggestions would be great on any of these, including talking to the doc about meds and a reasonable treatment plan given where I've been before. THANKS!!!
  2. Bailey-smom

    Bailey-smom New Member

    There is so much information you can get here from the experience of others. I hope you find what you need and the dr gets your meds straightened out. I am on what you can't take but I'm sure others have suggestions.

    Welcome
    Kelly
  3. motomom412

    motomom412 New Member

    My name is Regene and I live in Louisville. I will me 37 next week (oh man, does that sound old!!) LOL

    I go to Healing Options in St. Matthews. Dr. John Baird runs the office, I found him on the news. They did a report on him treating people with the Myers Cocktails, so I called them up and have had 4 treatments to date. They believe in a lot of alternative treatments, like massage therapy, acupuncture and acupressure.

    I know what you mean about the dr's not wanting to give pain medicine. I am also on Elavil, am taking Lexapro as well. My pcp's have me on talwin. I have very painful menastrations with alot of clots and I am going thru a super tampon in about 45 mins. for the first two days. The nurse practioner gave me a prescription for promethium to take on my 15-28 cycle days, she said it would lessen the amount, help with cramps and keep me regular, can't wait to try it, anything is better than what I'm going thru right now.

    Neurontin was given along with my elavil to help me sleep, but I stopped taking it because it made me feel hung over in the morning.

    This is a great board, I get alot of great suggestions from everyone here, glad you found it.

    Regene