Can Doctors Really Help??

Discussion in 'Fibromyalgia Main Forum' started by siteine, Mar 17, 2010.

  1. siteine

    siteine New Member

    Hi everyone I am 22 and have been sick for almost a year now and today i have just decided that I hate it and it is ruining my life. I have just been told by a friend about fibromyalgia two weeks ago and I am certain I have it.

    This is my first post on this site and I almost just want someone who understands me to talk to as well as I am worried to tell my doctor about my fear that I have fibromyalgia. As all the doctors I have gone to in the last year have either told me that my sickness is phycological or that their is nothing wrong with me. Which is soo untrue cuz their are no other 22 year olds around me that can't go to party's and are sick all the time. Also I tried to ask a friend of mine who is a nurse and she ignored me.

    I really don't want to tell my current doctor that I think I have FM because out of all the doctors I have gone to this past year he has been the most understanding, but he has shown signs that lead me to believe he wont really like the whole FM word. So my question is Should I tell him and risk going through what, as I've read in other posts, many of you have experienced time and time again by being shut down by your Doctor. Or should I try a few life changing things, herbal medicines ect before bringing it up to him?

    Please reply to me, today I am desperate as I have never before been.

    Lol and maybe I can sort how how to use this site without bursting into tears every two seconds and find your reply :)

  2. AuntTammie

    AuntTammie New Member

    there are some good docs out there - when it comes to fibro and csf there are very few, but they do exist

    if you are afraid to tell your current doc, maybe you could try calling his office and not saying who you are, and just asking if he treats patients with fibro & if he views it as a psych illness or a real physical illness.....that would give you a bit of any idea whether to proceed to tell him and keep seeing him or if you should look for a new doc

    another option would be just to tell him your symptoms w/o saying that you think it's fibro and see how he responds to that

    as hard as it is to keep looking, though, it is really important to find a doc you can feel comfortable telling everything to and whom you can trust to really try his best to work with if this one does not seem to believe in fibro, you are wasting your time staying with him (& your money and your health)
  3. gapsych

    gapsych New Member

    Aunt T. has given you some helpful suggestions about just describing your symptoms. Ask the doctor what kind of diagnoses would fit your description.

    I find writing down questions in advance of your appointment keeps me more focus as when I am anxious, it is harder to remember what I wanted to say. Also write what he says.

    Perhaps a referral to a rheumatologist would help, but once again ask if the rheumy has experience with FM patients.

    I use my PCP as she knows more than the only rheumatologist in a large medical setting that has FM patients. She turned out to be a sports medicine doctor.

    However my PCP has over 500 patients who have FM, so she has lots of experience.

    Whatever the doctor says, if you have not had blood tests or a complete physical in a while, ask for them.

    Remember the doctor works for you.

    Take care and let us know how you do. I think you will find this site very helpful.

  4. shari1677

    shari1677 New Member

    I would have never thought of it - but calling your doctor's office, remaining anonymous and asking if he/she treats patients with FM is genius! There is no embarassment there!

    I cant complain at all about my doc. He is wonderful! I even tell him when I double up on my meds....after all, they cant help you if they dont know what you are doing medically, right?

    Good luck and let us know how everything is going!
  5. siteine

    siteine New Member

    Thanks everyone. I didn't realize that having people write back to my post would lift my spirits soo much :) I am not a negative person at all despite what my earlier post may have sounded like, and I am very glad for your comments. I think it is genius to call my GP anonymously. I will have to have boyfriend do it as my accent might give me away lol. But I am very glad that you have all replied!!! I have already found soo much great information on this web site as you said I would :D and have made my boyfriend listen to me read aloud while he played video games. I am glad you have all had good luck with your doctors and will most definitely let you know what I find out.... ps thank you for caring about me. Also hope you are all feeling good today :D

    Ps Shari, your doctor is rocking!! Lol double up and admit ... your brave as!
  6. sweetbeatlvr

    sweetbeatlvr New Member

    i just had to respond, and offer my support. i feel for you so much, because from just reading your post, i feel like i have read the words from my experiences.

    unfortunately, Fibromyalgia is a very misunderstood illness, and this is true amongst doctors too.

    i think one of the hardest parts i've had to deal with (on top of living with pain evry day of my life), is realizing that, even though i am very ill, i have not been able to just go to the doctor and have everything fixed, like you think would normally happen.

    as sad as it is to say, i feel like alot of the doctors have unintentionally tried to make me worse. (although, only i can control the way i deal with things).

    i first got sick in July of 2007. i still have not found a doctor who is 100%for me and my treatment. i have been treated very, very horribly by a few, and it has been very mentally draining to say the least.

    i know there are good doctors out there, just from the testimony of some from this board. the number 1 thing i always hear when it comes to finding a doctor is, don't give up, keep searching, you'll eventually find one who will help. so this is what i am doing.

    i just want you to be aware that it does happen and it is not uncommon for those with FM to go through many doctors or years trying to find the right one.

    i pray that you do not have this issue, and that you find someone to help you very quickly!

    if i were you, i would not bring up the idea of FM just yet with your doctor.if he is willing to keep searching for a diagnosis through different tests and such, by all means, allow him! there are many conditions and illnesses out there that mimic FM, or have the same exact symptoms, even something as common as back problems! (which i have found out recently i am dealing with, and am wondering if i do have FM, or has it always been my back?) so you see, you don't just want an FM diagnosis thrown on you without exhausting all other avenues.

    if he starts "throwing his hands up", and doesn't seem to know what else to do, ask him if it could be FM. if he is a good doctor, he will arrange for a tender point exam, either by himself or through a specialist, and see if this may be your diagnosis. if it is found you do have FM, he should offer up different suggestions on treatments, and should never make you feel bad about feeling sick (like it's all in your head).

    if he doesn't do the above things, do not waste anymore time on him, and begin to search for a new doctor! you deserve to be treated with respect, and derserve to have your illness treated with respect also.

    i wish you the very best, and pray that you will have peace while on this journey.

    Autumn <3

  7. heapsreal

    heapsreal New Member

    I think alot of docs get confused between psychological and neurological disorders. I believe cfs/me/fibro is a neurological disorder caused by sometime type of infection, either current, or done the damage and gone so to speak. Herpes type viruses attack nervous sytem causing all sorts of symptoms. Also think that it some how damages our sleep part of our brains so we dont sleep affectively, this can also increase pain levels. There is some suggestion that fibro is a sleep disorder caused by not get deep enough sleep for your body to repair its self through its natural growth hormone secretion which mainly happens during deep sleep.

    I would suggest shopping aroung to find a good doc, but they will probably not cure you but help with symptom management and improve yourcurrent level of function. But i suggest to keep educating your self on the subject and experiment with different diets, exercise(as in very light stuff) etc, maybe even regular massages and find ways to improve your sleep, medicated or otherwise, sleep is one of the most important parts to feeling better with cfs/fibro.

    cheers good luck
  8. AuntTammie

    AuntTammie New Member

    You said, "I would have never thought of it - but calling your doctor's office, remaining anonymous and asking if he/she treats patients with FM is genius! There is no embarrassment there!"

    I had to laugh bc rt away I thought, "foggy genius", that's me! ; ) (what an oxymoron, huh?! seriously I never feel like anythign approaching genius these days bc of the worsening fog, so your comment made me did gap's saying that my suggestion was good)
  9. AuntTammie

    AuntTammie New Member

    I'm glad that we could help, and don't worry your post didn't make you sound like a negative is scary learning that you might have a chronic illness, and asking questions, facing the fears, and looking for support are POSITIVE ways to come to terms with what you are facing
  10. LindaJones

    LindaJones New Member

    The Center for Disease Control has information about fibromyalgia that you can print out and give to your doctor --
  11. TigerLilea

    TigerLilea Active Member

    There is no such thing as phoning and being anonymous these days - not since "call display" came into being.
  12. AuntTammie

    AuntTammie New Member

    if you type in *67 before you dial, caller ID will not work on their end
    [This Message was Edited on 03/18/2010]
  13. heapsreal

    heapsreal New Member

    Maybe you could call a few fibro/cfs groups and get them to snd info to your doc(without him knowing) and tell them your doc would like more info on the subject, give it a couple of weeks then go see him. Just dont grin or laugh when he tells you the symptoms of fibro, that you have probably been telling him, lol
  14. HeavenlyRN

    HeavenlyRN New Member

    Hi. Welcome. I copied the following from something I posted on the chit-chat board. Thought it might help you.

    I'm currently reading a book by Jeri Neilsen, MD. She was the doctor who was spending a year in Antarctica and diagnosed herself with breast cancer. This happened in the late 90's. Sadly, she died recently.

    I came across a couple of paragraphs in there that I thought were interesting, and timely, based on some of our discussions here. She was describing her "recovery" following a car accident on her way to her very first clinical rotation in a hospital. She ruptured 4 discs and it wasn't discovered for many years. The discs were compressing her spinal cord.

    She describes her frustration with symptoms and the difficulties she had being believed and finally being diagnosed.

    ***** "The accident that debilitated my body humbled me at a very important time, right when I began medical training. I learned that a person could lose everything in an instant. It made me realize that all these people who were sick or hurt weren't that way because they hadn't tried hard or willed themselves to be better. It was that they'd had bad luck.

    I know the experience made me a much more compassionate physician, because I was in the same position as many patient with undiagnosed conditions. I dropped things, I had terrible pains shooting down my arm, I developed urinary problems. I knew I wasn't making up these conditions, yet my doctors couldn't find anything wrong, and some of them implied that I was imagining symptoms. The doctors' assumptions changed my whole way of looking at people and their complaints. Just because I couldn't help them didn't mean they didn't need help. As one of my professors told me, there is no such thing as a crazy patient, just a dumb doctor." *****

    That struck a chord with me.
  15. Janalynn

    Janalynn New Member

    I'm glad you found this site!! All of us here certainly understand.

    There ARE good doctors out there. I've had nothing but good ones when it comes to my Fibro.
    If you have one who doesn't "believe", keep searching. The last thing you want is someone who you have to convince. They certainly won't work on your behalf.

    Because there are other illnesses that mimic Fibro, you absolutely need blood tests run etc. (if you haven't already). You should be tested for many other things, Celiac, Rheumatoid Arthritis, Lupus (ANA bloodwork) Vit D deficiency etc.

    The important thing to tell your Dr. is how your symptoms are affecting your life. "I can't do this because.....", etc.
    Even though FM is not an rheumatic illness, seeing a rheumatologist is a good idea. They are very often more informed - that is if you don't have a Dr. who is, and who is willing to treat you. You need someone who is empathetic and willing to go down this road with you. Willing to try different things.
  16. Nanie46

    Nanie46 Moderator


    It is important for you to know that there is a reason that a previously healthy 22 yr old would suddenly become ill.

    I developed FM when I was 27...that was 22 years ago.

    I wish I knew then, what I know now. It would have saved me many years of suffering.

    Something caused you to develop those symptoms and it is likely infectious.

    Many people here diagnosed with FM and/or CFS later found that the CAUSE of their symptoms was a chronic borrelia burgdorferi infection and common associated coinfections like bartonella, babesia, ehrlichia, etc.

    FM may be a diagnosis, but think of it as a symptom of a larger picture.

    In order to get better, you must find the cause.

    You may have even had a "lyme test" which was negative. Then your Dr may have ruled out lyme...which is absolutely wrong. Lyme is a clinical diagnosis based on history and symptoms, not a lab test. Lyme testing is poor and many people who have lyme only had a negative result....including me.

    Unfortunately 99% of Dr's do not understand how to recognize, diagnose or treat chronic lyme.

    Please look at the symptom list on p 9-11 of this wonderful paper by a lyme expert..... and the coinfection symptom info on p 22-27......

    Here is some other info for you to read....

    Please don't discount this very distinct possibility. It could mean the difference between recovery and suffering forever.

    You can also post questions on the lyme board here.

    Good luck, I hope you get some answers.

  17. JLH

    JLH New Member

    First of all, welcome to the board. You said that this was your first post! Hope to see you post more often!!

    Yes, doctors can really help. Like others have said, some doctors will help more than others!

    A rheumatologist is the specialist who treats fibro; however, my internal medicine doc treats me and knows just as much--and believes that fibro is a real disease.

    If you get on some meds to help your different symptoms, hopefully, you will feel better.

    I take Neurontin and Cymbalta for the fibro as well as Zanaflex, a muscle relaxer, to help me relax enough to sleep. I have had a sleep study and now sleep with a CPAP machine w/oxygen to help me sleep better. There is a non-narcotic pain med that docs will normally start you out on -- Ultram or Ultracet, and I think the generic is called Tramadol.

    Good luck, I hope you can get some relief.


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