New and confused

Discussion in 'Fibromyalgia Main Forum' started by tulaloo, Jun 25, 2008.

  1. tulaloo

    tulaloo New Member

    Hi, I found this board by accident and started reading. I'm really impressed with everyones knowledge of their diseases. I really don't even know what to call my illness, the words fibromyalgia and chronic fatigue have been mentioned briefly but I was never told that is what is wrong with me. To make things even more confusing, a friend of mine with lupus went to the same rheumatologist that I saw. She asked if she might have fibro along with lupus as she'd had terrible aching lately. The rheumy replied, "you don't have fibro, that's a wastebasket diagnosis"! I wonder why she would tell me that's what I have then? It's like being in no mans land.
    I asked my g.p if I could have U.C.T.D as I've had a positive ANA for over 5 years and he told me, "no you don't have that, you have a grumbling disease". Now what the heck does that mean? Could that mean that he thinks it's all in my head?
    I look forward to reading and learning from your posts.
  2. JohnThreeSixteen

    JohnThreeSixteen New Member

    I already don't like your Dr. (sorry)

    Check out the Dr. thread on here and see if there's a recommended one who is close to where you live. I also am new here and was also impressed with the knowledge that the posters here have armed themselves with. It's our life and we deserve to be taken seriously and to receive answers and find relief.

    Good to have you here!
  3. Mikie

    Mikie Moderator

    Second, our illnesses can be very difficult to diagnose but they are real. It doesn't sound as though either of these docs is very knowledgeable of them. I agree that a look at the Good Doctor's List here might help you find a better doc. If not, post with your location in the title and ask if anyone has a doc to recommend.

    If you do some research here or on the web, you can find the criteria for diagnosing CFIDS/ME and FMS. New research is pointing to some genetic markers for FMS as well as for CFIDS/ME. Just to make things more interesting, there may be subsets of these illnesses. And, just to make things more confusing, there is a lot of overlap of symptoms between our illnesses, Lupus, RA, and MS, among others. A good doc will rule out these illnesses before looking for CFIDS/ME and FMS but these conditions can co-exist with those illnesses. Fibro shows up a lot in people with CFIDS/ME, Lupus, RA, and MS.

    If you were confused when you came here, I can only imagine how you must feel after reading this. Take heart. All of us who sound so knowledgeable had to go through a huge learning curve on our way to identifying our illnesses and finding treatments to help us heal.

    Best of luck to you.

    Love, Mikie
  4. redhearts2

    redhearts2 New Member

    LOL...gotta laugh at that one..sorrry....what an ass that doc is....I agree with the others...find a new doc...!
  5. CarolK

    CarolK New Member


    Knowledge is your best weapon!! Learn all you can about FM and CFS and learn to turn a "deaf ear" to the critic's and nay-sayers!

    Patients and doctors have been arguing about this for years and years. If your doctor thinks "it's all in your head"... then find a new doctor! Don't let anyone put you down and make you feel like you are a "nut-case"! Shame on them for doing so!!

    Many on this board will tell you that they have had to go to many different doctors before they found the right one. You may have to do the same.

    Another thing that helped me is... quit wasting your breath trying to convice others that you are genuinely ill. Just smile at them and be confident in do not have to prove anything to them!

    Hang in there Tulaloo...never give up! Be your own advocate!

    Blessings... CarolK
  6. msbsgblue

    msbsgblue Member

    Mine was diagnosed by my PCP. I didn't need a rheumy.
  7. lvjesus

    lvjesus Member

    What the hell is a "grumbling disease"? He should have "your foot up his ___" disease.

    Better try and find someone else. My fibro was dx'd by my PCP. Where do you live?
  8. tulaloo

    tulaloo New Member

    It's comforting to know that I'm not the only one who is puzzled by my diagnosis. I have been ill for so long it seems and adding new symptoms all the time. It came on me so slowly. Over the years I've developed arthritis, raynauds, severe Gerd, IBS, severe fatigue, neuropathy in my leg, and my most troubling symptom at the moment, post-exertional fatigue. The only blood work that has been abnormal is the constant low titre ana, low wbc, and high creatinine. I know they are all connected somehow. I am saddened at the attitude my Dr.s have had so I quit going.
    Hi Iv, I live in Canada, in an under serviced area so I doubt I would be able to see anyone else and I also need a referral from my g.p. I'm not sure he'd be willing to give me one.
    Hi Msb, I have seen 2 rheumy's, the first one said he didn't know what was wrong with me, at least he was honest.
    Hi Carol, Thanks for the advice. It's a breath of fresh air for me. I've more or less come to this conclusion over the years that I probably will never have a diagnosis but I'd like to at least be taken seriously.
    Hi Red & Mikie, Thanks for the support, it's nice to know I'm not the only one who is going through this. Apparently people with M.S used to be told it was all in their heads as well.
    Hi John, Thanks for the welcome, I will check out the Dr.s list in case there is anyone in my vicinity.
    Thanks again, sometimes I think I'm going crazy, I push myself as hard as I can to prove to myself that I must be either imagining it or malingering but.... it only makes it worse.
  9. tulaloo

    tulaloo New Member

    for you knowledgable post. I just wonder why some Dr.s have such an attitude about these diseases? It's an awful thing to say but I really wish more of them would feel like we do. Also you mentioned about putting more info in my profile. Do you mean symptoms or location? I'm a little brain fogged these days.
    I've also seen it mentioned about Herpes virus here. I beleive I must have had it at one time as I had pre-cancer of the cervix but never tested positive for it. The Dr. said sometimes it burns itself out. I wonder how many others have had it here.
    Thanks again,
  10. deliarose

    deliarose New Member

    I agree your doc is an ignoramus with the social skills of a rhino.

    And more than that, dammit, it's dangerous to ignore symptoms like yours.

    Clearly you need a different doc. At least one who is more open minded.

    Also, I would look at Rich Van Konynenburg's work. It's all over this board. Search under his name. And I woudl start by trying to get a panel from a specialty lab in New Jersey called Vitamin Diagnostics,.

    You want teh methylation panel. It runs about 300 bucks.

    I tried every drug on teh market. Flew round the country seeing specialists.

    This panel and Rich's protocol set me on teh path to recovering my health.

    See my posts or anything with methylation in the title for more info.

    It is a long haul, but it works and I think teh science is sound.

    Good luck
  11. tulaloo

    tulaloo New Member

    so very much for all the information. Wow, I've got to get busy. I have been tested for most autoimmune diseases. There were a couple that my lab didn't do but the Dr. didn't send me elsewhere to have it done. As my ana has never been higher than 1:160 my Dr. says it can't be lupus. It is always speckled pattern but the last time it was also nucleolar which suggests scleroderma. I do have some symptoms of that as well and my hands have been swelling. My palms are as hard as a rock and I can't always open my hands up but my Dr. tells me this isn't scleroderma as that starts at the tips of the fingers and works it's way up. So I don't have that either. I know that lately my worst symptom is post exertional fatigue. When I'm working I feel the energy drain from my arms and legs and I have to lie down or I would fall down. It takes several hours before I'm even able to get up again. that's why I'm thinking it must be CFS, that and the fatigue.
    The only drugs I have been given are anti-inflamitories(which help immensly), beta blocker for migraines, and blood pressure, elavil for pain and nexium for Gerd.
    Sorry this is so long.
  12. Waynesrhythm

    Waynesrhythm Member

    Hi Tula,

    Welcome to the board! Love your username. I don't know how old your doctor is, but it sounds like he has a serious case of Curmudgeon's Disease. Very serious indeed! :)

  13. katiebug61

    katiebug61 New Member

    I've been diagnosed with FM. I think mine intensified after I had pneumonia in Jan. After I finally started to realize what I thought I might have, I went to see my GP. She sent me to a rheumy. He took lots of blood, (I think he is part vampire,) and ruled out RA and Lupus, thank goodness, I think? I started doing lots of research and everythign I read says Lyrica is the treatment of choice. What I read online, outside of this board, says FM is NOT progressive. The Drs finally found the right dosage, for now, and I am feeling much better with only some tiredness breaking through. Am I just in a good period right now and it is going to get worse down the road, or can there be mild cases? I have the fibro fog and memory problems even with the Lyrica. I feel overwhelmed very easy. I am looking forward to my vacation to see if I feel improved while away from work. We can't afford for me to quit and my job is not one I can do from home. Any advice? Thanks and I LOVE THIS PLACE!!!!!
  14. tulaloo

    tulaloo New Member

    you Katie. I'm going to ask my G.P about Lyrica also. I take elavil now and it does help some. I have to take celebrex to help with painful joints and I don't like to take it often as I have stomach problems. I've learned a great deal on this site as well.
  15. Janalynn

    Janalynn New Member

    "Fibromyalgia - it's the diagnosis given when nothing else can be found. If your friend has Lupus, then your doc doesn't need to throw in FM, since FM just means pain."

    I'm sorry - but that is the kind of statement that many of us are fighting every day. I have FM and was diagnosed with classic symptoms - not because they couldn't find anything else. AND yes I have severe and sometimes debilitating pain, but I also have a host of other "problems". Yes of course, they ruled out other things (thankfully)since so many other diseases, and conditions have the same or overlapping symptoms.

    I went for many many years without a diagnosis, but not really anyone's fault. I had several tests done over 20 years ago for severe leg pain, (all normal), then had nerve conductor tests because of numbness, was diagnosed with IBS etc. I really truly thought "this is the way I am". Not until my leg pain just became unbearable did I seek a more concrete answer. My PCP was new to me, had only seen her once before for oddly enough, arm pain that was HORRIBLE. She immediately suspected FM, after looking at my history. She sent me to a top rheumatologist in the area who confirmed her suspicion. (unfortunately he only diagnosis, doesn't treat). Since then, I have visited another rheumatologist in another city as another resource. NONE of them have ever referred to Fibro as a wastebasket disease. To me, that is the old way of thinking before anyone got any education. I've been very fortunate in the team of doctors that I've seen. The only not so great experience I've had is with a pain doc. That's just cause she was weird - but she herself has Fibro.

    Search for a doctor who you can have a good rapport with. That is essential! As others have mentioned, do your homework, be your own best advocate and don't stop til you find an answer.

    In the meantime - get some relief, whether it be for pain or fatigue or whatever other symptoms ail you.

    Support has saved my life. I'm glad you found your way here!
  16. tulaloo

    tulaloo New Member

    Just wanted to say I have been to my G.P and asked about Lyrica and was told, "that they are giving lyrica for everything lately but, it hasn't been approved for anything". So, in other words, no lyrica for me.
    He did take blood again and I have to go back next week. I don't expect much tho.

    I did ask my G.P why the rheumy told me I have fibro if he believes it to be a wastebasket diagnosis and I was told... wait for it...... that's what they tell you when they don't know what is wrong with you. I give up.