Something weird that my Rheumatologist said to me

Discussion in 'Fibromyalgia Main Forum' started by tandy, Jun 23, 2006.

  1. tandy

    tandy New Member


    Hello everyone~
    I was put on Lyrica a few months ago by my Rheumy.
    I've tried so many things over the yrs for Fibro,..and nothings helping me.
    so last week my dr. asked me how it was going with the Lyrica.? I told him I did'nt notice anything from taking it. I felt no better.
    He just said 'well,...lets not take that anymore ,'
    I've found that Lyrica does'nt help my severe cases of FM"

    I never knew I was a severe case. ???
    I never knew drs. could tell a mild case from a bad case.
    I wonder what makes you as severe or medium or mild case.
    Since our bloodwork and tests are usually normal
    How do they determine how bad we are?

    sure WE feel bad,...we feel downright horrible and sometimes even feel like it could'nt get worse.!!
    I'm waiting for a day when our pain levels can be measured or seen/proven.
    I'd have much to gain. we all have
    Take care
    Hugs
    Tandy
  2. findmind

    findmind New Member

    Hummmm, very interesting.

    Now, until I got this costochondritis last week, I thought I had felt everything FM and CFS could throw at me....

    Boy was I wrong. This is pure agony, and I wonder if this is what is happening to those of you who mention a "flare"?

    The meds make me sick, I can only take it easy, not move around or bend over, and heat/ice exchanging.

    Do drs think we are mild, moderate or severe cases depending on how much we complain about pain? Cuz I've not had any pain meds for FM in a few years, since 6 acupuncture treatments.

    Tandy, how often do you see your Rheumy? Often? Or were you in very bad pain and that's why you got Lyrica?

    Very good question....

    There's always hope!
    findmind
  3. Scapper

    Scapper New Member

    OK, I'm going to take a guess at this one.

    I'm assuming since you've tried many things and it's been years, this is where he gets his wording of severe case. Sort of referring to it as severe and/or treatment resistant. Again, guessing on this one.

    fyi - medication doesn't touch my pain either, not sure why.

    Sometimes when my pain is so high and I have to be out, I too wish others could actually see inside and then they would realize why I'm being so quiet. Until then, it's keep on searching.

    Sorry Lyrica didn't help and I wish I had an alternative for you. I'm currently looking for a good magnesium w/ potassium supplement to see if this helps. Magnesium alone did nothing for me.

    scapper
  4. mainerose

    mainerose New Member

    doctorsbase it on how many years we have had fibro. that is what i was told once. how true it is i do not know.
  5. tandy

    tandy New Member

    about every 12 weeks.
    Unless I need to see him for an emergency.
    Which I really don't do.
    (maybe 1 time ,..in over 5 yrs)
    I have dealt with costrochondritis too.
    My lower ribs hurt so bad sometimes.
    but mostly the lower ribs,...not so much my upper.
    although at times my collarbone has a deep ache.??
    I'll notice it when I get a hug from my lil boy.
    It'll hurt.

    I don't know? I just figured I'd ask and see if others were ever told the severity of their illness.
    I never was untill last week.
    I sure suspected it a long time ago tho!!
    Thanks for replying and trying to shed light.
    Hugs
    Tandy
    adding: all my mysterious pain started when my 14 yr old son now,..was 1 yrs old. (so 13 gruling yrs)
    [This Message was Edited on 06/23/2006]
  6. tandy

    tandy New Member

    once
    in case others want a shot at explaining this.

    I just honestly did'nt think theres a way to tell
    whats mild or severe. after all,...... we're living with this invisable and mostly thought as a "in our heads'
    illness.

  7. Fudge43

    Fudge43 New Member

    tandy .. my rheumy ended up being useless and I found out I was not the only one who thought that .. if it wasn't for word of mouth and this board surprisingly enough pinpointing people in Kingston Ontario, I would think I was the only one .. phew !

    My GP said I was her most significant case .. but I think it is because my clinic deals with active military spouses and their kids .. just a few retired folks like us go ..
    In any case .. it is VERY hard to drag out information about the other fibro patients she has .. and it isn't because she is a snotty doctor .. not at all .. but doctors in general just aren't sure what to do for us .. no set proticol for meds or treatment because we are all so DIFFERENT !

    I'm grateful she doesn't worry about dispensing pain killer scripts .. she knows I'm in PAIN .. so that is a life saver .. and by the way .. I'm on very low doses because I have a long road ahead of me and I'm trying to keep a "cap" on them until I can't any more.

    YES .. hopefully one day there will be a test to illustrate and explain what we go through !

    Joy : )
  8. NyroFan

    NyroFan New Member

    Tandy:

    I play it and miss. My doctor will give me anything I want after discssing it. Last night he increased me to fifty Elavil for day and fifty for night---I find it helps.

    I know I am a sever case and so does he.

    nyrofan
  9. lovethesun

    lovethesun New Member

    has had a couple of other doctors believe the same thing.It's very evident on my face when I am in severe pain,plus I can barely move and my equilibrium is very off.
    Linda
  10. tandy

    tandy New Member


    Its greatly apreciated :)

    So I guess their DX is based on observation.
    I'm not getting any decent pain meds,.... I guess I'll have to kick it up a notch and maybe go to my next appointment without makeup,.. mis matched clothes, near in tears,etc.
    instead of my typical 'hide as much of my true pain as I can'.
    I think I screw myself sometimes by putting on my front.

    Take care all
  11. razorqueen

    razorqueen Member

    when I go to see my dr I sure don't make myself look my best, I want him to see how I look when I am at home. I get tired of people saying "you look fine,etc" just because I've put my make up on and have my hair done and dressed nice.

    Its good for the dr too "see" how we feel instead of us just telling them.

    Raz
  12. tandy

    tandy New Member


    No more 'dressing up' for me.
    not for appoints. that is.
    I outta show up in my PJ's
    :)
    thats the real me!!
    straight from the couch look!! lol

    have a good day~
  13. jole

    jole Member

    I think they judge it alot from their own testing. When I was tested I had All the trigger points, which he said is rare. I also always dress nice, including makeup, because that is just me and I don't go out of my house otherwise.

    BUT they are trained and can see the pain on our face where others do not, and they see it in our eyes. Even my children tell me that. Also the more I hurt the flatter my voice becomes.

    There are other ways for them to tell besides "looks" and I wouldn't want my doc to think I was just sloppy. May not have my hair curled, but it will be clean, as will my clothes.

    He also knows how I walk on a "good" day compared to a day when I'm in severe pain. So I never have to fake it.

    Hope your doc is as observant.

    Friends-
    Jole
  14. julieisfree05

    julieisfree05 New Member

    In my experience, the level of "severity" usually refers to how functional you are.

    I have friends with FM who are able to work full-time and use only OTC pain meds, and others who are so disabled that they are housebound and have morphine pumps.

    I don't mean that if you are able to work your FM is less SIGNIFICANT than another person's!

    I'm just offering an example of how my doctors and friends seem to "define" severity of FM.

    Of course, with good treatment, many people with "severe" case are able to become functional enough to lead fairly normal lives. So, severity CAN flutuate with FM too.

    -julie (is free!)

    Forgive.
    It's a mighty big word
    for such a small man.. - Rebecca Lynn Howard
  15. My rheum. dr. gave me a script for lyrica and told me to stop the neurontin when I ran out of what I have on hand. I have stopped but am so leary to start a new drug, I may just forget getting it filled. I am no tired of taking meds and feeling like a guinea pig.
  16. tandy

    tandy New Member

    Fibrobutterfly~
    I tried both you mentioned
    and neither one did any good.

    I've tried so many I can't recall all of them.
    But nothings helping me.

    I must have a high pain med tolerance because
    drugs that wipe others out,....I can take and go shopping,and drive. I feel 100% fine.
    I never feel drugged. I never get much relief tho.
    The only thing I've ever had that made me loopy was a muscle relaxer called Soma. I'm fine on Darvecet or Lortabs.
    Take care~
    I hope the Lyrica works for you.
    (it has helped some members here)
    Tandy
  17. Tigger57

    Tigger57 New Member

    My rheumatologist diagnosed me with "extreme fibromyalgia". If that is a legal term, who knows? I think it helps them to distinguish the amounts of pain or fatigue one feels.

    Tigger
  18. Mar19

    Mar19 New Member

    It must be a New England thing. Here in the Mid-Atlantic states, my Dx is "extreme" fibromyalgia. OR... Maybe it's a new reality thing????? 8^)

    extreme mar
  19. FMsolider

    FMsolider New Member

    I was told too that I had a severe case of Fibro. I wonder who has a mild one. Anyone here, have a mild case?
  20. Astarte

    Astarte New Member

    Finder…I get acupuncture every week. Is there a certain area that works more for FM than the points for my typical back problems? I will do anything to feel better and you mentioned 6 visits and no pain meds since. That would be my dream.

    Tandy, I wonder the same thing. Also how do you get your dr. to realize your in real pain and not hooked on pain meds? My MD was more convince that I was having withdrawls from Vicodan, (I know I wasn’t) than this being real chronic pain. When I’m in pain and don’t take the pills for days, the pain doesn’t go away like they would if I were after you DT. And I do not take much at all. I can go days on just Motrin, but when it gets unbearable or I need to function socially or for my kids, I take pain meds. Ok, if not wanting to be in pain makes me an addict, I’m sooo there! Lyrica didn't work for me, kept me asleep all day and night...may as well not live at that point.

    My neuro just tells me he can’t figure me out, has no idea what’s wrong with me…that I have “fibromyalgic symptoms”. Is that a save or what?

    Star