not telling doctor about FM blew up in my face...

Discussion in 'Fibromyalgia Main Forum' started by sweetbeatlvr, Mar 14, 2010.

  1. sweetbeatlvr

    sweetbeatlvr New Member

    some of you may remember my post about going to a new doctor and not mentioning the past diagnosis of FM. my reasoning for doing this was because of new symptoms i was having and wanting hm to look at these symptoms with no outside interference (FM) clouding his judgement in my treatment.

    well, it all started out good. he ordered new tests, and it was found that i have bulging discs throughout my whole back, moderate stenosis throughout the whole back (which explains the constant numbness in my fingers and hands), Degenerative Disc Disease, and Facet arthrosis. his official diagnosis was moderate osteoarthritis throughout my neck and back. he said he felt bad for me having such bad arthritis for someone so young (34).

    well, at my last appt, everything blew up in my face. i guess because he was prescribing me pain medicine, he got one of those printouts from the DEA that shows when and by whom you've been prescriped scheduled drugs. it, of course showed the 2 other doctors i had been too in the past.

    i guess his first impression was that i was doctor shopping for narcotics, which is absolutely not true. i may be "doctor shopping" but only to find a doctor who took me seriously. every other doctor, as soon as the word FM comes up, changes their tune, and my treatment changes.

    i explained to him that this was not the case (doctor shopping), and proceded to explain to him why i chose not to mention the FM. that i was having new symptoms that didn't feel like FM and that i wanted a fresh perspective on what was going on. i also explained the horrible treatment i've gotten when mentioning that word (FM).

    i also said how sad it was that i was actually happy that something finally showed up on my tests (MRI'S) that explained the pain i was in.

    well, it was like i never had those tests, and nothing showed up on them, and the only thing he could think about was the FM. he said something about FM having a "mind/body" connection and said the only thing i needed was an anti-depressent.

    he said, that to have pain medicine, something definative had to show up on tests. when i asked, "what about the mri's?", he went on to say something or another about pain being subjective (talked out of his butt for a little more, and kept saying that subjective word). then he said that everyone has arthritis, and that i should not have pain! (all this after saying he felt sorry for me at our last appt.!)

    he then proceded to give me a script for Paxil, which i explained did not work on me, caused bad side effects, but told him that i had some good results with Cymbalta, and he refused to give it to me.

    i give up.

    this last doctor's visit beat me down more than any other visit i've had. i've been really down since it.

    i really believe that the symptoms i am having are coming from back. i have not been able to feel my finger tips in almost 4 months and the numbness is creeping up my arms. i wake up in the mornings and my whole arms feel dead, and my shoulders are "frozen", i have a hard time lifting my arms up, which are all symptoms of the the stenosis.

    i feel like the diagnosis of fibromyalgia is a curse.

    when i am feeling up to it again, i'm going to make an appt with an orthopedic doctor that specializes in spines (at the reccomendation of a friend). he looks at your films (mri's), and comes to his own conclusions. ijust want toknow what's going on with my back. to not feel your fingertips for so long can not be good. i know if left too long, permanant nerve damage can occur.

    anyways, i just wanted to give an update, and possibly my story can serve as a lesson to others.

    i hope everyone is doing as well as can be expected............. Autumn
  2. hensue

    hensue New Member

    Every time I get sick I think it is fibro. Broken ribs, high blood pressure, and headaches.
    Numerous things I would pass off and not go in.

    For one thing who can afford it. He finally got in my face and said fibromyalgia does not cause your joints to swell.
    Or your high blood pressure, when I have a problem he is good at saying come in and get checked.
    I did not go in because i assumed everything was connected to fibro. Or they would say it was.
    That may change I dont know. He is a very smart doctor and believes in Science and prays.

    With that being said at this point I think I am blessed to have him.

    Hopefully you will find someone like that.
    Take care
  3. tig519

    tig519 Member

    Frankly, if doctors did their job the first time around, this kind of situation wouldn't happen. And also if we as patients seek a second opinion when the dx doesn't feel right to us.

    I was just telling my doctor how I believe many people are misdiagnosed with CFS and FM because the doctor doesn't take the time to test thoroughly. Overall pain... boom it's FMS, overall fatigue, it's CFS.

    Maybe if doctors actually took the time and effort we would be closer to cures for these horrible conditions. Instead, there are so many different treatments, I don't blame people for being confused as to what is the magic pill.

    Sweetbeatlvr, I'm sorry this has happened to you as it surely sounds like your spine issues are at the root of your pain. If I were you, and your insurance allows you to see a specialist vs an internist, I would seek out one and get the MRI s that were done. Explain to them up front what happened, and that you feel you may have been misdiagnosed from the beginning (maybe not).

    good luck
  4. victoria

    victoria New Member

    It's so unfair when most pts are likely to blame almost anything on the FM to start; dealing with docs like this makes it impossible.

    Is there a support group anywhere near you, or maybe a state organization, where you can maybe get referrals to good or understanding specialists? Have you checked here or online for such things? There are some good doctor lists that exist...

    I really hope you can find someone who can be objective, you're in my thoughts/prayers!

    all the best,

  5. Chelz

    Chelz New Member

    Oh Autumn, (I love your name!!) I understand. This is one of the reasons I do not frequent the doctor anymore. I also have FM. One suggestions for you, years ago, I had an MRI of my back that also showed bulging disks, spinal stenosis, numbness that goes up my arms as well, although I did not have anything in my fingertips, still the same, I had almost the same symptoms as you.

    If your insurance covers it, please try a chiropractor. The reason I say this is because I have found them to be much more understanding of FM in general. One chiro I went to said that so many of his patients also have FM with bad bulging disks in their backs and mostly the same symptoms as me. I trusted him and just knew he wasn't lying to me.

    The visits helped me and my insurance covered 20 visits and I had to pay only $15.00 a visit.
    This doctor you went to is a just makes me so angry when they mention antidepressants all the time for us FM patients.

    I went on Paxil years ago, and I swear it ruined my life. I gained an enormous amount of weight, had other very bad side effects from it, and not to mention, gaining weight from these drugs will only increase the pain you feel in your back, more weight more pain at least that is what happened to me.

    Doctors need to once and for all understand that FM needs a comprehensive approach. One therapy or drug DOES NOT WORK. We need a variety of things to help us. Diet, exercise, certain meds if need be, massage, physical therapy. Having FM is not for whimps, LOL.

    I have felt before when I went to doctors that they think I am only doctor hoping around, and I'm tired of it. If they only knew what we really went through on a daily basis, they would be ashamed of themselves.

    I now go to massage for my back, but unfortunately it is very expensive and I can't afford to go all the time, but sometimes it can help, most insurance doesn't cover massage, sadly.

    I take MSM for my back and hip pain. I take about 1,200 milligrams a day and I also bought a pair of Dansko shoes, which are made for people who are on their feet a lot (I work in a hospital). They are expensive as well, but I try to do whatever I can to help minimize the back, hip, arm and shoulder pain I get as well. I was just about to make a cold pack for my shoulders because I have a hard time lifting them as well.

    So sorry you had to go through this, again that doc is a jerk, and unfortunately for us, it doesn't help our situations. Don't beat yourself up about it, you are okay. Hugs to you, Chelz.
  6. simonedb

    simonedb Member

    wow really sorry tht happened, messed up.
    Can you go to his superior, document the whole thing, what he said before etc and say you are confused on why he was willing to dx and treat the arthritis til he found out about FM.
    i thought docs are supposed to be working for us not vice versa.
    God this FM dx is b.s., they just think it means childhood abuse and borderline personality and let ya suffer or something.
  7. quanked

    quanked Member

    I will try. I am on overload.

    What came to mind when you said that after the doc became aware of your fm/past medications he refused to give you what you asked for. I have noticed that sometimes people in positions of power/authority seem to relish denying others what they can give (no matter how they rationalize it). Once they know what you want their decision is made--no way are you going to get what you want.

    That being said I imagine he felt like he was being scammed. He does not know you beyond the couple of visits you and he had. It is unfortunate that he could not see past his preconceived ideas about fm.

    The other thing that came to mind was a narrative (I am sure I will mess up here because I cannot recall all the details) that someone told me about a kind of demonstration created for bureaucrats and congress people. It was put on by a nonprofit agency helping welfare recipients deal with the system and teaching them what their rights were.

    The agency and recipients knew what a time consuming, demoralizing, and difficult process it was to be getting public assistance yet the public perceptions of individuals receiving aid from the govenment was one in which recipients were seen as lazy freeloaders (in general).

    The agency put together a teaching event (for lack of better terminology) whereby the bureaucrats and congress people were put through a simulation of applying for and maintaining state aid, food stamps, etc. They learned first hand how much work it was just to keep their benefits in place on a weekly/monthly basis. They learned about the lines, the attitudes, the appointments, the incredible task it was for some people to even get to their appointments and more. For many, if not most, staying on public assistance is almost a full time job not to mention that they have children to care for in the midst of meeting all the requirements to get state aid.

    Why this story came to mind is that I would like to see similar kinds of teaching events for drs/medical service providers/insurance case workers etc. I would like to see these people try to communicate to service providers as patients and customers--I would like them to feel the frustration, the fear, the disrespect, the patronizing and so much more that goes on for those of us with the dd's when we seek medical services. The only problem is that these play actors will not be in the medical state that we are in so they can never know how bad it really is. I cannot tell you how many times I have not gone to the dr because I just cannot deal with frustration of trying to explain my needs combined with feeling like crap.

    Creating such teaching events is now beyond me. But there is no better learning experience than walking in somone elses shoes!

    I understand your frustraton and anger. I can only wish more success in your shopping events : )
    [This Message was Edited on 03/15/2010]
  8. Janalynn

    Janalynn New Member

    WHAT? WHAT? WHAT? What a complete jerk!.....on so many levels! I'm so sorry you had such a completely horrible experience.

    Maybe, just maybe, you could've told him at the first appt what you'd been diagnosed with, after you've already gotten his opinion, but that is NO excuse for how he treated you and his lack of providing adequate care.

    Did you get a copy of your MRI films? (do they put those on a disk now?) If not, I'd march in there, get a copy and also get a copy of your records from him.

    Everyone has arthritis and it shouldn't cause you pain? What kind of idiot Dr. is this? Does he know how to read an MRI? You need treatment for that stenosis. It is effecting your nerves (which is pretty much what it is). For him not to treat that or refer you is pure negligence.

    He should have listened to your logic for not telling him about your FM diagnosis. It really does make sense, whether it was right or not. You didn't want to blame everything on FM and wanted to dig deeper.

    I don't know what showed up on your printout and it doesn't really matter (about your prior prescriptions). It is not uncommon to see different Dr.'s and get different prescriptions. My goodness my girlfriend has seen multiple Dr.s for different things (no FM) and at one time or another they've given her a script for Vicodin or something - even her dentist! BTW- the printout is probably pulled from your insurance information.

    At any rate - DO NOT GIVE UP. Get your back treated by a competent Dr. I'd tell that other guy (after you get what you need) that like you said, you were "shopping" for a good Dr. and you have to continue your search cause he certainly wasn't one. okay, maybe don't say anything, but it would be hard for me to keep my mouth shut. DO rate him on rateMD
  9. loto

    loto Member

    that is terrible! I can't believe how that doctor treated you! With all that proof the mri's gave him, he still blamed it all on FM, and then spoke of the stupid "mind" thing?
    How awful! I hope you're not going back to that doctor. I've come to the point of not returning to any type of doctor I need to see, who makes me feel stupid. They ALL need to get educated!
    I hope when you see the ortho he helps you and treats the proof of the mri's as a separate issue from FM.

    Best Wishes,
  10. sweetbeatlvr

    sweetbeatlvr New Member

    for your kind thoughts, concerns, and suggestions.

    my lessoned learned in all of this... be honest and forthcoming with all information up front!

    although my intentions for not mentioning were sincere and not trying to be deceitful in a way to just get drugs, that is how it played out in the doctor's eyes. i can't say that i don't understand, because i do. it just would have been nice if he would have listened when i explained my reasoning for doing so. it also would have been nice if he would have so kindly not forgotten what his research into my symptoms showed.

    it is not normal for a 34 year old person to have such extensive arthritis, as i do. it makes me wonder if i really do have FM? although, all the other symptoms i've experienced since being diagnosed, maybe point in the direction that i do.

    it is so so sad that someone who suffers as i do, wants so badly for something other than FM to show up, so that i do not have to ride this very un-fun rollar coaster, trying to get the treatment i deserve.

    i do have discs of my mri's and i will get copies of my records from him to take with me to the orthopedic doctor.

    at this point, i need a break from doctors. i am not normally a depressed person, but i have been very depressed since this past visit, crying alot, not wanting to do anything, etc. so sad.

    unfortunately, i do not have insurance right now, so it makes it very hard for me to seek out many other forms of treatment. because at this point, i feel like taking different approaches. for example: seeing a therapist, physical therapy, maybe natural approaches, because i believe the experiences i am having with medical doctors is making me worse.

    i just don't know...

    anyways, i don't want to be a downer. i do, however want to thank each and every one of you. you all have been such a wonderful support to me through these years of suffering with whatever the heck it is i am suffering from! :)

    i wish you all the very best........... autumn<3
  11. Andrew111

    Andrew111 Member

    If you had told the doctor he would have given you paxil and not ordered the tests. My strong suggestion is that you have copies of the tests sent to your house (not the next doctor). Take a look at your tests so you know as much as you can. Then when you go to your next doctor, make copies and take those. Having a copy at home will help you know when doctors are fudging your results.
  12. rosemarie

    rosemarie Member

    I hvae one thing to say to that doctor your saw. I hope you get fibro and no one will beleive you again when it comes to pain. I hope that he gets it and hurts so much that he looks for a doctor to help him but finds some one just like himself. Some doctor that assumes that because you have fibro ALL YOUR pain is due to fibro.
    Yes you should have told him up front , but he was not only out of line in his dx one moment you have severe arthritis and the next its just fibro here take this worthless pill and go away.

    I really believe that if more doctors knew what we go thru on a daily basis we would get better treatment , have doctors who understand what is happening to us. It's not like you went out side and saw some posion ivy and rubbed it all over yourself knowing what it was and what it would do to you.
    You didn't ask for this How hey could I please have fibro gosh it is just what I wanted to have!
    I really am sorry that you were so badly mistreated, I have yet to meet more than 1 or 2 doctors who believe in me and understand or are willing to treat a patient with fibro and not shove it in the corner and say it is depression, when you have an MRI that ssshows taht there is some thing real that cause's pain.

    He needs to grow up , go back to medical school and have some one train him on bedside manners. I really don't wish fibro on any one. just some times I want them to really understand that we are not drug seekers, doctor shoppers, asking for narcoitic because we want to get high.
    I can't take pain meds like tramadol it sends me in to the worse panic attack ever, most antidepressants make things worse.

    I hope that you can find a doctor that will help you soon. I would ask for a copy of the MRI just the written protion of it, get your medical files and keep a record of the treatments, meds you have taken and why. When you go to the doctor I have found that I get a better reaction if I take some one with me and they write what the down what the doctors says to you. That way if the doc acts like a jerk you have proof of how you were treated.
  13. sweetbeatlvr

    sweetbeatlvr New Member

    you are right, that is one way to look at it. atleast i was able to get the tests i wanted.

    i always go and get the copy of my reports. they also give you copies of the discs, at the hospital where i get the tests done.

    this doctor definately down-played the results of my second test (after finding out about the FM). he didn't know that i had already seen the report. i just shake my head.

    when i did tell him i got the copy of my reports, and done my own research, especially about the stenosis. he just looked bewildered, and really didn't know what to say. oh yeah, he did have something to say, "everyone has arthritis, and i should not have pain."

    whatever. i'm definately taking a break from doctors for a little while, i need it.
  14. sweetbeatlvr

    sweetbeatlvr New Member

    i am truly happy for you that you have found such a wonderful doctor, you deserve it!

    we all deserve to have doctors like this, it's just a matter of sorting through the frogs, like you said.:)

    i recently read in our local newspaper about a free clinic for the uninsured in my county. it is not only for those with short illnessness, but those who suffer with chronic conditions.

    because i do not have insurance, and do not have the resources to "keep shopping" for a doctor. i think i may go to this clinic.

    i think the first thing i am going to say to this doctor, before anything else is said or done is, "i just want to get this out of the way first, so you will actually listen to what i am saying to you, i am NOT here for pain medicine. i am here for your help, and understanding of the health issues that i am dealing with. are you up for that?"

    we'll see how that goes. because it seems like if you start describing your pain conditions, they automatically just think you're there for pain meds only, and do not take anything you say seriously.

    wish me luck, and take care...... Autumn
  15. sweetbeatlvr

    sweetbeatlvr New Member

    i am totally with you. although i do not wish for anyone to suffer, i sometimes wish they could just walk for a minute in my shoes, so they could really understand what i am going through.

    and as the person who described (i apologize, the name escapes me), the experiment of sending officials through the process of getting welfare, what a wonderful idea.

    if only maybe one well-respected doctor would take the time to try and get treatment for FM, without disclosing his identity, and would report his findings, maybe other doctors would take his experiences seriously.

    like that show (although i havn't seen it), Bosses (or something like that), where the heads of companies work at the labor jobs of their compnay, getting to see what their employees really go through. they gain a new resppect for the hard work that they do.

    ahhh, to dream.:)
  16. mrlondon

    mrlondon Member

    Who diagnosed your fibromyalgia? Did they ever do any of the tests that this present doctor did? It doesn't sound like it. Fibromyalgia is often over diagnosed. See:

    It sounds like your original diagnosis of fibromyalgia was done by doctors who didn't perform tests to see if your problem could be due to spinal problems. Fibromyalgia symptoms can be secondary to other problems, versus primary fibromyalgia. Secondary fibromyalgia is harder to treat, because it requires treating the primary condition. For example of how fibromyalgia symptoms can be relieved by treating a spinal problem, see:

    Now, given this new doctor DIDN'T bother to test you for fibromyalgia, makes him look bad. If he was familiar with fibromyalgia, he should have tested for it. Therefore, his opinion that your symptoms are all due to fibromyalgia is based on faulty reasoning, and by a person who is inexperienced at diagnosing and treating fibromyalgia. - Mark
  17. Pebbles730

    Pebbles730 New Member

    Hi Autumn,
    I read your post about how you are going to approach your next doctors visit. I thought I would just my thought in there. I was going to suggest not say first off that I am not here for Pain Meds. Once you said the Pain Meds...that is going to send up a red flag to doctors no matter what you say about them. I would make a list of all the medications that you have taken so far, what has helped, what hasn't and how much of it you have taken and for how long. That is just going to make you stronger that you have done your homework and are just looking for someone to treat you and hopefully be able to help you.
    Good luck
  18. sweetbeatlvr

    sweetbeatlvr New Member

    you really did give me some great advice, and i heard it.

    i most definately will get all my info together. i use to keep a list on my computer, adding new meds/effects, and symptoms. i started it when i first got sick almost 3 years ago. my computer crashed last year and i lost all that info! i will do my best to try and remember everything!

    i have been on Cymbalta before, and it worked really well! probably better than any other med i have ever taken. i stopped taking, because i couldn't get a script for it. i had a bunch of sample bottles and weaned myself off of them.

    i still have 3 bottles left, and out of desperation last night, i took one. i wanted to see if it provided me any "immediate"' relief. i knew i was going to have to work today (a hard day at that), and was hurting SO bad last night, after a hard day yesterday..

    the good news is, i woke up feeling better this morning than i have in a long time. barely any stiffness, and very minor aches. if it stayed like this, i'd be ok!

    when i go to the doctor next time, i am going to be very prepared, and i'm definately going to try and get back on the Cymbalta!

    thanks again you all. i appreciate all of you.... Autumn
  19. ladybugmandy

    ladybugmandy Member

    do all doctors find out if you have been prescribed medicines before? does this only happen with narcotics? does this happen in canada too?