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Discussion in 'Fibromyalgia Main Forum' started by kfrench, Dec 24, 2005.

  1. kfrench

    kfrench New Member

    Hi I was just diagnosed with Fibromyalgia. After going through 2 years of" you must be stressed." No you don't have Fibro. It is just stress.

    Doctor finally did all the tests (all normal of course).
    My pain got so bad I went to the Hospital. Guess what they said they can't help me go to your doctor. Doctor refuses any medication.

    Finally gives me a referal to a Reumatologist. Well Reumatolgist calls me and says if your looking for a fibromyalgia diagnosis this doctor won't give you one go to the Fibro Clinic at Elks. So I finally discover there is a someone in Boise ID that knows fibro exisits.
    So my first visit is walking into the clinic with no doctor referal hoping they don't throw me out. It turns out to be a physical therapy program and She gives me referals to a doctor and sleep doctor to help me. First visit I am diagnosed with Fibro. I expected to be told there were more tests to be done or something. So I am not sure how reputable the doctor is. Granted I did have a bunch of test results and a 10 page type written history of my ever worsening symptoms.
    So now it is Christmas Eve well I am new at this and I didn't realize just how bad I was going to feel. It had gone from back pain to little twinges in my hands and feet, then bladder pain that never went away, to terrrible back pain with shooting pains down the leg. The scary thing is at the beginning I could tell you where I hurt now I can only tell you where I don't hurt at the moment. Well anyways I called my doctor yesterday asking if I could have some pain pills because I could not cope with the pain. Well she is gone till Jan 3 and the doc on call said my chart said no narcotics. She tells me that the don't give narcotics for fibro. So I ask her what to take? She says tylenol and anti inflamitories work gresat. I am new at this and I already know I am waisting my time taking them. It doesn't even touch the pain.
    I tell my PT I am really hurting and tell her I hurt all over she says well thats the fibro. Apparently they can treat my back pain since my back is out of joint probably from having 3 kids but can't do much except tell me to streach for the other pain. UGH. I feel like my life as I know it has ended I am scared that the pain will get worse and I will not be able to care for my children. It is a struggle to find anything about FIbro in BOise.
    But my worse problem then myself is that my daughter has the same symptoms thankfully not as bad so far but immagine trying to tell someone she has fibro. I go to the doctor and tell him she is hurting all over and he looks at her muscles and says she needs some vigoroue exercise her muscle tone isn't very good. THis was right after I told him about her throwing up after 5 minutes of trying to do her gymnastics class and how if she does exercise she gets very fatigued and has pains and feels like she has the flu for a few days. It is hard enought to accept that this disease affects every movement I make but I can't handle that my 7 year old daugther is possible going to go through the same thing. This was the third doctor we have seen the first our family physican gave her antacids. Then when I was there with my 15 mo old for a well visit and I told her she was still feeling awful and couldn't sleep and tired all the time and stomach aches. He told me well you go and figure out if you have some disease or not and then we will worry about her. This is an appointment I have next month Jan 17 and he said this in NOVember. That was our last visit and we tried a doctor after that that told her she needed to get more rest duh and told me she was doing it for attention and copying me. Sorry I just don't buy a kid giving up gymnastics and bike riding and playing to get attention? Now I can see saying your sick to get out of chores but saying your too sick to go to MC Donalds or your best friends birthday party or to play on the swings out back or it hurts to much to do beads or draw her two favorite things. I am going to take her to another doctor in the same group I am going too. I finally wrote an email to the head of child rehab at the hospital and he refered me there. So there is hope final for us at least finding out what is wrong with us.
  2. jakeg

    jakeg New Member

    Welcome to the board, I'm sure you will find this place to be very helpful alot info to be found here with lots of caring people. Its hard to find a doc that believes in fibro so you need to keep looking until you find one. I,m still looking for one.

    Jake
  3. dononagin

    dononagin New Member

    Welcome home!!

    I was diagnosed 10 years ago with cfs.. took another 10 for them to add Fibro.. actually to find a doctor who believed in them!!

    My doctor that treated me in the beginning moved away.. After that I had one doctor after another do blood tests and say.. ya look good to me!

    I changed docs again recently and told my new doc that I had CFS.. He said it wasn't a diagnosis.. that Doctors just say that when they don't know what is wrong with you..

    but he did send me to a rhumatologist. A rhumie that understands what we are dealing with!

    I'm so grateful to finally have a doctor that believes in me!

    There are meds out there besides narcotics that can help you.

    I take the maximum dose of Cymbalta.. It's an anti-depressant but also effects the part of your brain that percieves pain.. helps quite a bit.. I take tramadol.. a non-narcotic pain reliever that is pretty commen. I do have vicodan though for horrible days.

    We have for the most part all been through it.. The chain of doctors.. the tests.. the being treated like hypochondriacs..

    You know though what you are feeling and don't you give up till someone takes you seriously and can help you!

    As for the kids.. trust your instincts with your babies.. They are your gift.. When it comes to our kids sometimes we have to fight like a mother tiger to make sure they get the health care they need... but you are their protector.. do what ever it takes..

    In the meantime.. fill out your profile when you get a chance.. look around.. ask questions.

    Don't be afraid to just jump in when you feel you can add something and to start new topics..

    We are here for you K.. Your not alone in this.

    I'll look forward to getting to know you.

    Hugs!
    dona
  4. emiltim

    emiltim New Member

    Boy, I sure hope you see this- I'm in Boise too, and I've found some great docs! I think I know what rheumy you had though......Oh,my!

    Hope to talk with you soon....-Julie
  5. kfrench

    kfrench New Member

    Hi,
    I would love any heads up on good docs and bad. Save me some trouble. My first family doc was Dr Ribbens. He is fired. Second which never saw me Was Dr. Rupp. I went to Dr. Quattrone. Seems ok only been once. Just supprised she didn't do any furture testing. She said try sleeping pills, PT at elks Fibro Clinic, and hopefully that will be enough. I have an appointment with dr Loveless Jan 17. Don't know if any of them are good.
    Krista
  6. Musica

    Musica New Member

    I'm sorry you had what seems to be a common frustration in getting diagnosed and treated. At least the first rheumy told you he didn't diagnose it and where else you could go! I hope you get on a better medical track now, for yourself and your daughter. A mother's pain seeing a daughter with the same problems can be worse than her own.

    It doesn't require many tests for fibro. In fact, there AREN'T many. It won't show up in labs, radiology or anything like that. The standard test is the 18-point tenderpoint exam, established by the American College of Rheumatology. It was established for research purposes so you don't have to have 11 of 18 to be dx'd with FM, and there are certainly more than 18 points that can be tender! Still, that is the accepted test - for those that accept FM as a real diagnosis. Unfortunately, many rheumies don't, even though rheumatology is the field that is supposed to have the expertise in it.

    I hope you get good suggestions from the other writer (I wish this site had the ability to see more than the original writer's post when replying!). Also, you might look on the Good Doctor's list (look under the Doctor Referral tab up above).
  7. emiltim

    emiltim New Member

    Hi Krista,

    (edited) Dr. Rupp diagnosed my FM, and even filled out my FMLA paperwork on it. I go to a neurologist now. He is much more encouraging! Not sure if we are supposed to use dr. names on this site, or not.
    I even have a great family doctor that was the first one to suspect that it was FM. I had another dr. tell me that she 'didn't believe in it'.

    Take care,

    -julie
  8. sdown

    sdown New Member

    Hi, Can relate to your nighmare stories about docs. I have a few too. I did find a good one in Kansas City. I live in Alberta, Canada but she was worth the money and trouble to go down there. She suggested a supplement called SAMe for pain, mood stability and basically calms down the nervous system. Its available on this site. I get the Prohealth brand not the naturemade. I find the prohealth brand more potent. Good luck to you!
  9. emiltim

    emiltim New Member

    Dr. Hodges at Satlzer in Meridian is an awesome Family dr. very knowledgable about FM!
    I've switched from Dr. Rupp to dr. Han (neurologist). He spends a lot of time with me, and really listens.
  10. kfrench

    kfrench New Member

    Thanks,

    I need a good family doc. Third doc says he beleives her pain is real BUT that is caused by depression. She denies depression to him, I deny she's depressed. He claims there must be something bugging her that she hasn't told us yet. He asks her if she doesn't want to do activities she use to enjoy before. I keep saying she still want's to do them but it makes her sick. She is to tired and feels sick when she exerts her self. I've have depression and it doesn't make me throw up if I exercise. Exercise makes me feel better. Depression just makes me want to sit around and do nothing or stay in bed. She is always busy. She has changed her hobbies to things she can do like beads and drawing and knitting. He tells me to push her even when she says she is in pain. Tell her she has to live with it and do things I would normal expect from her. Push her to do more than she is comfortable doing. I feel like he is saying be heartless and ignore her pain, I don't see how that will help her to not be depressed if I act like I could care less that she is hurting??? So Thanks for the lead on a differant doctor. I will check out my doctor next visit now that my shock is over on being diagnosed and see what she think my plan of care should be. If it isn't promising I will start calling the few doctors that have been recomended. Aparently there is a Doctor at Mercy North in Nampa that has Fibro and A friend likes her and has done well with her. I still need to get the DOc's name from my mom.