Newly Diagnosed after 20 years of pain

Discussion in 'Fibromyalgia Main Forum' started by caffeinenut, Jul 5, 2006.

  1. caffeinenut

    caffeinenut New Member

    Hi Everyone!

    After living with this incredible pain, fatigue, and ever increasing fog I finally found a wonderful rheumatologist who diagnosed me with FM.

    I am considering a Phase III clinical trial for Milnacipran and was wondering if anyone has either been involved in the first two trials or knows anyone who has. I've lived with this for so long that I figure a few more months of the possibility of getting a placebo and no relief could be a risk worth taking. For now I'm just happy to know I'm not totally nuts, ya know?

    I'm finding lots of useful information here and look forward to getting to know you all.

    Susan
  2. pam_d

    pam_d New Member

    Welcome! I'm just bumping this up for others to see, as I'm not familiar with Milnacipran, but I'm hoping there are other folks here who do know about it. It's good that you found a great rheumatologist---finding a compassionate doctor who truly understands FM is half the battle!

    This board has taught me so much over the years, so I'm glad you found it!

    Hugs,
    Pam

  3. NyroFan

    NyroFan New Member

    Susan:

    It is good that you finally got a diagnosis. Many of us take years also, so welcome and jump right in after reading a few.

    I am also in a trial of a program called 'Yes I Can' from the U of NC. It is for people with FM and/or Arthritis.

    nyrofan
  4. sugareoff

    sugareoff New Member

    Susan,

    I haven't had much luck with a good rheumatologist for FM.
    Whose is this wonderful rheumatologist you found? What state is this Dr. located?

    Thanks,
    Cheryl
  5. caffeinenut

    caffeinenut New Member

    Cheryl,

    My doctors name is Mark Fisher and he is in Haddon Heights, NJ. He actually runs trials so he's my trial doctor also. Where are you from?

    Susan
  6. caffeinenut

    caffeinenut New Member

    Nyrofan,

    I came across that yesterday. How long have you been doing it?

    Susan
  7. caffeinenut

    caffeinenut New Member

    Thanks Pam!

    According to my doctor their has been success with it in England and the first two trials were extremely promising.

    I've already found so much useful information here...what a great find this was!

    Hugs,
    Susan
  8. sueliza

    sueliza New Member

    Hi Susan,

    I started this trial a week ago and I also had questions for anyone who has been on it!

    For the first two weeks I have to record pain levels in the electronic diary and then I will start on the medication - hopefully not placebo :).

    I had to go off Ultram because it can react with the medication, but I am allowed hydrocodone. I am trying not to take much of it so we will have an accurate starting pain level.

    The diary is kind of annoying - it beeps at you at random times during the day, but you turn it off all night and tell it what time you want to wake up.

    Let me know when you start the study - we can compare notes!

    Sue
  9. caffeinenut

    caffeinenut New Member

    I am SO glad to meet someone else going through this trial! It will be wonderful to be able to compare notes with you. My initial appointment is Tuesday. I'll let you know once I have actually started the trial. If you don't mind my asking, where do you live?

    Susan
  10. sueliza

    sueliza New Member

    Sorry for the late response, we were out of town. I am in NC.
    I have my next appt on Thursday and that is when I should start the medication!

    Let me know how your appt goes.

    Sue
  11. silly_wabbit

    silly_wabbit New Member

    I am in my third phase on the trials for milnacipran. I had the placebo for the first 2 phases, they do give you vicodin and ambien for rescue medication if needed. It was hell the first 2 phases with the palm pilot and the medication not doing anything. When I started Phase III I got all the common side effects from the milnacipran which most go away, and it's been sooooo worth it!!!

    Not all the pain is gone, I still have bad days but they are the rareity now instead of the other way around. I have done a lot of yard work and house work, and my energy is way up compared to what I used to be like.

    I would recommend it just from my experience and what I hear from the doctor about his other patients on this clinical trial. I figured I had nothing to lose.