Haven't been on the board for a while....

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by SusanEU, Oct 30, 2012.

  1. SusanEU

    SusanEU New Member

    I am so sick of this fibromyalgia, ups and downs over the years, on effexor, elavil, 1/2 ativan for sleeping (sleep, what's that??). Now the doctor wants me to try 25 mg of Lyrica. Sick of taking meds and don't want to add another one to the mix. I feel like the doctor (or anybody else) has a clue as to how much suffering one goes through to live a close to normal life. She says I should go out more, take a class, exercise...blah blah blah...we've heard it all before. oh yeah, I'm going to take a class after dragging my butt to work everyday on no sleep, in pain most of the time and totally exhausted. I just had to get that out, no one except those of you in this community can understand what it's like to feel all broken inside, but because we aren't covered in bruises, it isn't taken seriously
  2. Susan,
    Yes, we here can relate all too well... I've temporarily given up on going to doctors until I can find a good alternative doc in my area... In the past, the traditional docs have done me more harm than good because, as you said, they are clueless about our diseases. Unfortunately, I have both FM and ME/CFS and my life is far from what it used to be... and def far from "normal"... I've had to learn to adapt to a new "normal", as we all have. But I felt such empathy when I read your post, that I just had to respond...

    I'm so sorry that we all have to suffer so much and yet we have the added suffering of being misjudged and misunderstood because we don't "look sick". I've even tried giving info about ME/CFS to my family and folks I was once close to... but they still don't get it. For the most part, I suffer alone... and sometimes it gets to be too much... if not for my faith, I would have given up a long time ago.

    Fixing the sleep issues (which we can ALL relate to) is crucial to our recovery or at least improvement in our condition. I struggle with this one too... big time. What do you take to help you sleep? I'm always looking for things to help me get more sleep and better quality. Some things will help for a while, then I have to tweek the dosages and/or add something new. I have a whole regiment of natural sleep supps and tea that I take at night. Until recently, it was working great... but I think my all my hormone levels (thyroid, adrenal, etc) are out of whack lately and is exacerbating everything. Since I don't have a doc right now, I have no one to order labs... and I need that done badly... trying to get in with a new doc is taking forever... so the saga continues...

    But I'm glad you came back to this board... it helps us all not feel so alone... I am so sorry for your suffering... I will be praying for you and hoping you start feeling better soon.
    Hang in there... there are plenty of us on this board who care.

    Blessings and Gentle Hugs,
    Shel


    [This Message was Edited on 10/30/2012]
  3. SusanEU

    SusanEU New Member

    Thanks for your reponse, Shel. I really appreciate it, the acknowledgement means so much.

    Right now, I only take 0.5 of Ativan at bedtime, which does help somewhat. The Elavil seemed to help for a few months, but not anymore and I don't want to up the dose because I'm already gaining weight and craving sweets. Thinking I might try the Lyrica this weekend (just in case I don't feel well on it, cause I still have to go to work), it's only 25 mg.

    Take care and gentle hugs
    Sue