New here and need your expert advice...sorry long..

Discussion in 'Fibromyalgia Main Forum' started by xo4damama, Sep 6, 2002.

  1. xo4damama

    xo4damama Member

    My
    Last edited: Oct 15, 2014
  2. xo4damama

    xo4damama Member

    My story is much like everyone else's. For years I went to dr's and for years I was told there was nothing "physically" wrong with me. About a year ago I was dx with undiferentiated connective tissue disease complicated by fibro. I have ignored the fibro title since I know that most people do not even believe it really exists. I went in for an EMG this week, and the neuro told me that my results were very characteristic of fibro. So does that mean she found nothing?? She said the muscles in my back were very tight, but there was no actual reason for it. The rest of my muscles showed no inflamation. I have the usual knots in my back and neck, and often the pain or numbness runs all the way to my fingers. Is there any real physical evidence that someone has fibro as opposed to something else? If this is so hard for me to accept, how can I expect anyone else to? After almost a year I still have not told anyone about the fibro dx.

    Also..is the terrible fatigue I feel from the CTD or from the fibro? Then again I also have Hashi, so who knows!! I guess what I am wondering is how do we know if this is caused by the fibro or something else?? HELP!!

    Do you take meds for fibro? I am on plaquinel and a variety of other pain, allergy, and sleep meds. Any advice would be very appreciated!
  3. MicheleF

    MicheleF New Member

    There's a lot of info here in the library & the members are very supportive. Sometimes the weekends are slow, so you may want to keep checking.

    Fibromyalgia is diagnosed based on criteria by the College of American Rheumatologists (something like that, little sleepy here!) There has to be widespread pain in all 4 quandrants, 11 out of 18 tender points identified. Having tender muscles (as I do in my back behind my ribs) doesn't necessarily mean fibro. The parts in my back that are most noticeably sore aren't part of the official points. I recommend you check out the home page & library for more specific info.

    I have fms & cfids. I have a wonderful rheumatologist who does believe in both. I am using a combo of supp--vit/min/herbals plus Klonopin for restless legs. I've changed some diet habits, cut way down on caffeine, exercise, etc. Some use pain meds; I'm not opposed, just don't have that need at this time. There's a lot of things that you can do to help with the symptoms, and plenty of new research that does identify that fms is not "all in your head"!

    You can search messages for a specific symptom. We get some bizarre ones...I had the pins/needles sensation which have pretty much gone away since I started taking magnesium. In my most humble opinion, I've learned that ignoring things usually makes you feel worse. If you don't admit you have something & you do, how are you going to get better? We are here for you... to vent, to find support, to find answers. We're all in the same boat (though some are much worse than others).

    Take care. Michele
  4. MicheleF

    MicheleF New Member

    a better day today. Just wanted to reply which will "bump" this to the top so others who missed can see it.

    Take care. Michele
  5. MarilynK

    MarilynK New Member

    Welcome to the board, glad you found us.
    Sorry you are feeling bad.
    I have had FMS\CFS for over 20 years and i still go thru
    times when i dont whant to exept it.
    The fatigue can come from fibro,
    Try to find a doc. that belives in fibroM.That is very important and get the stage-4 sleep.
    I am on Remeron, antidepp.Wich i just started and so far so good. And also on Ultram for pain.
    I am in a terrible fibro fog today so i have to stop.
    Others will be along and share.
    Again very happy you found us , these people here are great.

    Take care
    God Bless

    Marilyn
  6. PMangels

    PMangels New Member

    I'm glad that you found this site. There are many here who have a lot of knowledge to help give ideas what works for them.

    I was diagnosed with FM 10 years ago, but I'm sure I had it a couple years before that. My regular doc was not getting me anywhere so I found me a rheumatologist. She has helped a lot. I have sleep problems too and still do at times. That's what makes me so fatigued. My rheumy tried a lot of things on me before we found something that would half work. Right now I take Prozac 20mg in the morning to boost the seritonin in the brain. I understand that FM patients are low on this chemical. She supplements that at night with Doxipen 20mg. Last time I went to her I told her I thought maybe I was getting immune from it because it did'nt seem to be working as well. She said that I need a stronger dose as my body is adjusting to it so she upped it to 30mg. She says she has some patients on 200mg. I'm afraid I would never wake up with that dose. I work and can't be hung over although there are days I feel like Im in a fog. It's not a hung over feeling; it's just like I can't get things together. It's not a pleasant feeling to me. I also take Vioxx 25mg. I take Ultram for the pain if I need it. I'm on Mirapex .0125mg for Restless Leg. I think I need a stronger dose of that.

    I'm sure there will be others that will post and give you ideas too. PRO HEALTH which sponsers this board has supplements we can buy too. As of yet I have not tried any but have been reading the posts on people who have and I am trying to decide which one(s) I would need. I would like to get off some of the meds I take because I know there are side effects from them. This is all the info I have for now on me.

    Arlene
    [This Message was Edited on 09/07/2002]