New Here , First Post

Discussion in 'Fibromyalgia Main Forum' started by Delie, Nov 22, 2005.

  1. Delie

    Delie New Member

    This afternoon, my doctor told me he thought I have fibromyalgia, I guess FM? I had never heard of it before, and before I came here, read a little of it on the web.
    I do have RA, and osterporsis (msp) and am taking pain pills for that. He wants to put me on a clinic study using the drug "Pregabalin." The risks are like any other study, some okay, others may be life-threatening. I don't know anyone that has FM, that I could ask questions.
    Do any of you take this drug? Is there another pain pill that works the same? I just don't feel right about saying yes to this. It may be because I have had my share of heart problems, and don't want to say "rock the boat"
    Basic all my pain is just on my left hip and leg, which is where the osterporsis was dx at. As said I have had chest pain, very low immune system, unbearable pain in my hip/leg when weather changes, when I walk, etc. I thought it was all from my RA/Ostie. So when he told me today he thought I had FM, threw me for a loop. Are they all connected?
    I know this may be long, and I'm sorry,

    Delie
  2. XKathiX

    XKathiX New Member

    I can't help you with the medication - I have not been on it.

    But I wanted to welcome you to the site. I'm sure someone will share their experience with you as I believe some here have been or are on that medication.


    Welcome!
    Kathi
  3. Delie

    Delie New Member

    Thanks for the welcome.

    I have been living with my osterporsis since 1999, and in 2003 was told I also had RA, and now this. That's why I was wondering if all is connected. I guess if I hadn't been told a few months back, that sometime in the past I had had a small heart attack, I would had said yes right away to the study. I do hope there is someone here that can answer.

    Do you have FM? Did you lose friends? Do they believe you when you try to explain why they can't depend on you. My friends have dwindle to one. She helps me alot, driving me places, but most of all keeping me company, even its a phone call a day. My best friend hasn't talked to me over a year, she got mad because I didn't go to her son's wedding. It had rained all that day and I barely could walk. She said I was faking the pain. Oh well.


    Delie
  4. grandmasheri

    grandmasheri New Member


    You have come to the right place Delie. If anyone can relate to you troubles everyone here can. I'm so sorry your "best Friend" is treating you this way. Its very hard for people to understand this thing called FM. I have done everything and some of my family are still not excepting and its been almost 3 years since i was diagnosed. Feel free to ask anything on this board. no mater how trivial, dumb or embarassing you may think the question is, we have heard it all and will support you even if we are only giving our opinions! You will see that you have found a HOME here with us.
    god bless Sheri
  5. jennypee

    jennypee New Member

    Welcome Delie! I'm sorry for why you had to find us, but glad you're here!

    This board has been a wonderful source of information and support, and I don't know how I survived before I found it.

    I don't have any info about that drug, but you can use the search function to look up posts about it-- I know there are people here who take it.

    Good luck!

    Jennypee
  6. Moonshyne

    Moonshyne New Member

    I'm fairly new here myself... but you will find alot of help, support and information here. I can't help you with the drug issue either... but I can tell you CFS/FM is a hard path to live.

    I lost most of my friends shortly after my diagnosis several years ago.. since I am no longer "doing" for everyone I apparently serve no purpose to them. I have learned you find out who your friends really are when your down! My best friend of almost 30 years dumped me too.. so I feel your pain my friend! Don't let it get you down tho, know that she apparently wasn't the friend you thought she was and try to find some new friends. Not easy I know.

    Do the best you can with each day and post here when your feeling down...someone here will help pick up your spirits.

    Best of luck to you....


  7. Delie

    Delie New Member

    Thanks for all these welcomes, I feel like I have gained new friends.
    Losing my best friend is still painful. We have been friends since I was 14, 43 years ago. Had our babies at the same time, been through good and bad times together, shared secrets, and laughter and tears. And now nothing.
    oh well..
    My family, hubby, son and his family, daughter and her family are wonderful. Hubby came from a family where his mom did everything for them, and has he grown up since we married, lol. From the beginning of our marriage I taught him to cook, clean, even wash clothes! Always with the understanding that maybe one day in the future he may have to know those things..who knew.
    I don't try to involve our children too much, they have their own families. The grandkids come over, spend the night, and help their po-po clean, during the evenings we sit together, either work on crafts, gds like to knit and crochet, or watch a movie together.
    Tomorrow we celebrate Thanksgiving, we have always done it the day before, that way they can spend Thanksgiving or Christmas with their spouses family. Our dil is hosting it this year, I will make the turkey, and oldest gd (she's 13)is making the dressing under my supervision. Tonight I already made the pecan and pumpkin pies. It may had taken me longer but by golly I did it.
    Look at me, I have gone on and on.

    I will do a search on the drug. I am afraid of agreeing to the study. I do carry with me my bottle of NitroQuick, just incase. Another thing was when I wouldn't sign and told her that I didn't like the side effects, she called my doctor, and he showed up at the clinic to talk to me. My questions were if he thought I had fm, he should had told me before, explained the disease to me, started me with medications that had been on the market longer instead of steering me into this study. Hey, I'm forward with my doctor, I like him, and he knew he has to be very front with me, that's the way I am. So, he said I am not going to push you, and I said "No, you're not" and "I'm taking this form, and letting my hubby, and children read it before I decide. Standing outside was the clinic worker and the first thing she said was did she sign? He said no, and we will let her decide. I felt like I was just a number to her.

    Look at me, I am just going on and on. It feels so good to talk to others, friends that can understand why you may be afraid, what this pain is all about, why simple accomplishments mean so much to one. There are times when a cup, a carton of eggs, fall from my hands, that I just cry and cry. And music, I used to love to dance,and I hear the songs playing on the radio, and my legs say "lets go" and my body hollers "no, don't move" I look in the mirror and ask "Why me"

    Delie
  8. Musica

    Musica New Member

    I have RA and osteoporosis, as well. Also obstructive sleep apnea, which is also common for FM. Although I don't have an official FM diagnosis yet, I think we have been heading there for a year. FM is often diagnosed after everything else is ruled out.

    FM involves global pain. Besides the left hip and leg pain, do you have aching all over? Does it feel muscular and not just in the joints? Did your doctor do a tender point exam, where he pressed on various spots all over your body, especially around your elbows, knees, hips, buttocks, neck and upper back? Also, is this doctor who said you might have FM a rheumy?

    I would want to be pretty certain about FM before taking a trial medication, but that is just my feeling. I have heard of Pregabalin for FM before, just don't know anything about it. I wonder if he is trying to recruit people for the study so possibly jumping to a diagnosis? I don't know enough background on you to really be able to have an opinion, just throwing out thoughts.

    Weather changes can definitely affect RA and osteo, too! I know people who have RA and FM, and a lot of times it is hard to tell which is flaring. What pain med are you on? I am taking tramadol (generic for ultram), which seems to be good for RA and FM pain.

    About the loss of friends... people with RA and/or FM seem to experience the same thing. Family and friends understand for awhile, but then they tire of you canceling out of things, always being tired/hurting/stiff, or just not being able to be with them as much. It's hard for them to understand. They think you should be able to get back to where you were, not realizing it may never be possible. Unfortunately, a lot of family and friend relationships are adversely affected. I'm glad you do have family who are supportive, although I know losing a best friend hurts a lot.

    Welcome, as you explore the new world of FM. I hope you can quickly learn about it so you can make an informed decision about the medication. And I hope you don't have FM!
    [This Message was Edited on 11/23/2005]
  9. Delie

    Delie New Member

    In answer to first question : no , pain just on my hip and leg
    second question: just on my neck, and back, pressure wasn't painful, on a scale of 1/10, 10 being the highest, I go for a 2.
    No, he's my family doctor.

    Yes, his name is on the form as being the investigator.

    After doing a search and reading I have decided to say no. Also to look for a rummy and a neurologist.

    I take tramadol for my pain. Was on Ultram for years but developed a reaction to them in the summer, so he switched me to tramadol> they are not as strong as Ultran was, so I end up taking more some days, then the one dose I would take daily before.
    There are nights when the pain is high that I can't sleep, but its not every night. Makes me think that if I have it, its on the first stages. I don't know. That's why I was surprised to be told I had it.


    Delie
  10. Sheila1366

    Sheila1366 New Member

    I know of people with RA and FM.A friend of mine told me her FM hurt worse than the RA.I do know all that you have must cause alot of pain.Pain in hips and chest are unfortunately common with FM.So sorry you have something else to deal with.Keep us updated on this new meds.I hope and pray it works for you.

    Take care,
    Sheila