Doc whos has Fibro Appt....big disappointment

Discussion in 'Fibromyalgia Main Forum' started by dreamer28455, Apr 24, 2007.

  1. dreamer28455

    dreamer28455 New Member

    ok everyone...sorry for the delay i was sick yesterday from kadian pills the doc perscribed. Also i was in agony from the exam. Ok so here goes....drove 45 mins to get to the office in jenkintown. Handed paperwork and completeed that in about ten mins. The escorted off for a urine test (Not told why) then sent back to the waiting room. So finally about an hour later then doc takes me back. He goes over the paper work i previous meds blood tests ect. He seems like a good guy and is aksing me all the normal quesions about my fibro pain and when i was diagnosed and so on and so on. When he was telling me about the meds and such he was not too happy with all that i had been on. He says he gets by with just trigger point injections (which he tried pushing on me). I told him they hurt me more than they helped me. So he takes me back to the exam room and proceeds to press on me so hard i thought i was gonna die. I'm screaming and crying and he is still pressing and killing me. I've been tested only twice but they never pressed as hard as this man did. So after a terible ordeal of pain he says ok well i confirm that you do have fibro (duh) and also I believe you have sacriliatis(spelling?). Something where my SI joint in my back is messed up. Thats where most of my pain is. So we go back to his office and he continues to explain the diagnosis (i know everything already...i do my research). And he then gets to my urine test. He tested my urine for which meds i was on. He said that darvocet is not a good drug for the chronic pain and if i MUST be on something he wants it to be kadian(morphine sulfate). So i said i was a little nervous because those kind of meds make me sick and loopy but he gave me a low dose and said it should be ok. He then said im going to test you again when you come back and i dont want to find any meds besides the kadian. He then goes on to explain that he doesnt want me seeing my family doc and if i must to not get any perscriptions from him. Im only allowed perscriptions from this guy. So as i'm shakily explaining my pain he gets a phone call..not from a patient...think a company..and has the nerve to tell me to go wait in the waiting room. it is now about 4:30 and my appt was for 2:30. So ten mins later he gets me back in the room. He says he really recommends the pressure point injection and i said i will think about it. Then he tells me to try the kadian and come back in 2 weeks. So then i drive home (takes 1 and a half hour) go to the pharmacy to get the kadian extended release. The pharmacist (who know me very well and is friendly with me) after i asked her opinion she says i wouldnt have started me out on something so strong...go home take it and just stay home in case of a reaction. im like i go home take it and about 3 hours later...i blacked out. i cannot remember that night at all.. i woke up yesterday morning so sick and in pain that i had to call off work! So i callled my family doc and told him how much pain i was in and he perscribed me vicoprofen. Now with the kadian just getting out of my system i am starting to feel better. i should have just stuck with my doc!! He is so nice and i appreciate him so much more now. he is willing to work with me till we find something that works!! The temptation of a doc with fibro was too much for me to pass up and I made a huge mistake. Im never going back there again!! So hopefully with this vicoprofen I will start to feel relief...i think i am already which is why im here at work and able to sit at my computer and type! Is anyone else on vicoprofen? Im also wondering is the ibprofen is better on your body than the actemenphen? ANy advice would be awsome i just wanted to share my story since I promised i would post after the appt!! Much love to all and I hope to hear from you!
    <3 Rachel
  2. Diva55

    Diva55 New Member

    I'm sorry, i know nothing of the drugs but wanted to pop in to say how sorry I was to hear of your awful appointment.

    I was given a trigger point injection years ago from a rheumy who said he specialised in fibro. I suffered for months after with the pain of the injection and couldn't move my arm and it didn't help at all.

    I found out later that Trigger point injections are for people with myofascial pain not fibro pain!

    It sounds like that doctor has myofascial pain and not fibro. He really should have know the difference but sounds like he is indeed ignorant of that fact.

    He should also have known that pressing you really hard on your tenderpoints was a torture you should have not endured.

    I know everyone will be with you on your huge dissapointment with this doctor as he sounded the perfect doctor to treat you.

    Best wishes for better help.
  3. What a bummer. Do I understand he is a dr. who also has fibro? Isn't it so disappointing to look forward to seeing a dr. with hope and come out disappointed. I have never used kadian, it sounds dreadful. Do you plan on returning to him?
  4. dreamer28455

    dreamer28455 New Member

    diva, thanks for your reply. i had two trigger point injections which didnt go well for me either. thats why i didnt want to get one then. even though he swears by em. ugh. i agree with you about how he should have known how bad he was hurting me...and the screaming might have gave it away well now im on vicoprofen which is the best help i've ever had thus far! hopefully it keeps working...i feel that going to that appt made me appreciate my regular doc so much more...he's the right one for not going anywhere else ever again. <3 Rachel

    fibrobutterfly, yes he said he has had fibro his whole life...but im a little skeptical though since he needs nothing to get by on just injections...and he was not sympathetic when doing my exam...i figured since he knows the pain he wouldnt press too hard...boy was i wrong. i felt like i was going to die! i actually am not too disappointed since i have my regular doc to turn to! i am never going back to that other doc ever is not worth the hour drive for no pain relief when i am getting the help i need in my own neighborhood docs office! p.s if you havent used kadian i suggest you dont unless you have an extreme tolerance for high narcotic pain meds. i blacked out on it...blah!! <3Rachel
  5. Engel

    Engel New Member

    I went to a top notch rheumy a week ago and he did NO tests other than the pressing and working my joints (I am still in horrible pain from this exam). He confirmed FMS & OA and ordered Xrays of neck and shoulders (only), put me on neurotin and told me to come back in 6 months. I am like scratching my head ... It has been a week. I have not heard from his office about the Xray results. I need to have my STD extended (I am worse NOW than I was a week ago)and I cannot get through to his staff directly. I have to leave a message with some secretary who was extremely rude to me yesterday when I called. She tried to rush me off the phone and I was NOT DONE. I said this is VITAL about the STD extension. MORE STRESS which I don't need. I also took a look at the neurotin bottle and it is refillable 12 times????????????????? I have never had any script refillable for more than 3 times. I am thinking now maybe my PCP wasn't so bad after all? I am embarassed.
  6. Taterdawg

    Taterdawg New Member

    well Bless Your Heart. I feel like I'm in the same boat as I went to my doctor and then to the doctor that shares her practice and he basically was trying to compete with what she gave me. Ended up having my husband take me to the ER over it.

    I just wanted to say I'm sorry and I'm your in my thoughts.
  7. dreamer28455

    dreamer28455 New Member

    hey girl...i am so sorry to hear you are still in that pain! i remember your post from before...the doc i went to see was a pain management doc. and yes he claimed he suffered with fms lifelong. i think i told you beofre..i was on neuronton and it wacked me out! no pain relief and terrible side effects. i was perscribed that by a rhuemy too. i know they say rhuemys are good for dealing with fibro but i am not going to see mine anymore. he wont perscribe any narcotics and only wants to keep giving me painful pressure point injections which do not help! if you are still in pain from a week ago i suggest you find another doctor especially since this one is not getting back to you and his staff sucks (just my opinion judging from your posts) i definatly advise you to switch doctors!!! you need to get that std stuff taken care of! i am now seeing a regular family practice doctor who is the best...he is working with me and my meds and he ordered the blood tests and lyme tests to make sure i am not suffering from anything else. i am feeling so upset for you! i wish i could help you somehow...have you tried seeing a regular doc? actually i dont care what kind of doc you see just dont go back to that jerk! rhuemys like to give you meds (mostly anti-depressants and nerve blockers e.g. neuronton and lyrica) and send you off and schedule an appt for a long time after...mine did 2 monthes laterr...which i still have to call and does pcp stand for? is that a regular family doc? i think maybe you should go there or find someone who is going to take time to help you. my doc has phone meetings with me each week that take up to 20 mins!! he stays on the phone with me and answers all of my questions. plus he gave me vicoprofen which is something that is helping me for the first time ever. im sending much love to you and please let me know what you are going to are very much in my thoughts and prayers!! <3<3<3 Rachel

    taterdawg, thanks you so much for the kind words! im sorry about your experience...we are sick people and we do not need this extra stress just relief!! i hope you are seeing a good doc now and are doing well!! your in my thoughts too!! <3 Rachel[This Message was Edited on 04/25/2007]
  8. Me again, and this dr. has fibro! I had hoped he might be the one to help us and was looking forward to what he had to say. I am seriously considering forgettting going to any drs. for fibro , all they do is treat you like a guinea pig with try this and that, see you in two months. I hope you feel better soon.
  9. kfran

    kfran New Member

    I am so sorry to hear about you being treated so poorly. My Dr. has fm and is totally different than the Dr. you saw. I would never go back to him if I was you. (((((hugs)))) I feel terrible for you. Know you are thought of. Take care and hope the meds your regular Dr. gave you work. I have been wondering how you have been.
  10. dreamer28455

    dreamer28455 New Member

    fibrobutterfly, i agree with the guinea pig thing but i still havent given up hope with docs all together. i need some kind of treatment i cant do this alone! you just have to find the right one! dont give up hope..i almost did!
    <3 Rachel

    KIM!!!!!!!!! Hey girl!!! I missed talking to you!! I havent logged on since today because i had a horrible weekend with my boyfriend (which we have resolved thank god!) and with this terrible appt!! im glad your doc is working out for you though! how is the guafenisin thing working out? i hope your doing well and you pain is under control!! talk to ya soon!
    <3<3 Rachel
  11. joeb7th

    joeb7th New Member

    The treatment of these auto-immune diseases is so crazy and all over the is just a nightmare from what I read.

    From angry and insulting denial to very sympathetic concern and believing ... from more mild and cautious prescription recommendations to ones that knock you unconscious!

    Whew...and almost all of us after all this ping pong care...are left to our own research and experimentation and encouragement anyway.

    The definitive book has not yet been written about these diseases and the true experience of suffering with them in this country and with our American Medical Society.

    Hopefully, someday the right book will be written and perhaps change the course of the Medical Association Titanic to one of more respect and research and empathy in regards to this class of illnesses.
  12. OhWhatPain

    OhWhatPain New Member

    Well Dreamer I hate what happened with your Rheumi Experience. Ok let me tell a little about myself. First I'm Male and have had FMS and almost all associated symptoms since I was a small child. I am now 41 and I work in the medical field.
    First off I would like to say my comments are my personal views only. Now that being said like some other posters I don't Like Rheumi's for FMS either I don't care if the claim to have it themselves they just don't seem to get it with the exception of a very small group of researchers.
    Your trip to this doctor leads to a switch from probably the mildest narcotic Darvocet to one of the more stronger time released Morphine drugs Kadian..I can see what he was thinking because morphine, or synthetics like Oxycontin do work better on muscle pain and help reduce the anxiety caused from such pain, but I think his leap to even a a low dose of morphine could have been scary my concern would be your age and have you been on any of the pain meds before..Well in saying that if he put you on a low dose of time released morphine I wouldn't totally discount it right off after one day I would try a second day amazingly the body seems to adjust after that first dose..
    Your family doc put you on Vicoprofen, which is hydrocodone (Synthetic codeine) and Ibuprofen, which is a could starter med and it may be all you need to deal with bad days. I used Celebrex for my daily pain drug and Lorcet 10/650 (Hydrocodone/Tylenol) for bad periods. If this doesn't do the trick I would ask my doctor about trying a short acting Oxycodone like Percocet and see how you respond to that and then you can decide what works best for you.. If Oxycodone seems to work better then you could go to the time released Oxycontin and have a short acting opiod with the time released one for breakthrough pain..In my case these are my meds..Now keep in mind I went through alot!!!!!!!!!! of meds and combos and only stayed on what worked..Oh and just as a side note I had been in pain my whole life and didn't know what normal was until my family medicine doc discovered that I had FMS and put me on Elavil as my first med taken at bedtime..Wow the next fourteen days I had no pain..and to tell you the truth at 25yrs old then I cried because it was then I realized how bad I had suffered my whole life, but the body adjusted to the Elavil and the stiffness and pain came back. Most FMS patients newly diagnosed, or seasoned veterans will in MOST cases know more about their condition than the Doctor will because this newly diagnosed patient will be on the internet everyday searching out every bit of research and information there is...You have to find a Doctor that #1 believes that FMS/CFS is real.#2 they also have to be compationate thats it and many times you will bring them the information to help you through drug ttials...YMMV anyway here are my meds and by the way I also have a hiatal hernia and degenerative disc disease.
    Elavil 50mg bedtime
    Ativan 1mg three times a day
    Baclofen 10mg two to three times a day
    Prevacid 30mg once a day
    Oxycontin 20mg usually once daily missing a day every now and then.
    Roxicodone 15mg every six hrs for breakthrough pain, but I alternate this med every time I need a refill with a medicine called Opana 10mg IR this helps to not build a tolerance, which I don't think is a big issue, but its good in the Opiods to have rotating meds IMHO
    [This Message was Edited on 04/25/2007]
    [This Message was Edited on 04/25/2007]
  13. DeborahLynn

    DeborahLynn Member

    are much less sypathetic towards me. They will say something like, "Well, I've got fibromyalgia too, and I get along o.k."

    I think there are different levels of pain with fibromyalgia. There are different symptoms we each struggle with.

    I have chronic fatigue symdrome as well as fibromyalgia, so I can't exercise like my rheumy wants me to. I was in extreme pain last week (I still am in such pain with no relief), and I called him and asked him if there was anything he could do to help me. He said to keep taking my antidepressants and anti-seizure meds, and exercise, and we will wait and see if that helps. Well, NO it isn't helping, and I am in extreme pain and utter weakness.

    My rheumy is a nice person; I just wish he'd learn more about chronic fatigue syndrome. You just can't take medical information to the doctor - they don't have the interest or time usually to find out about a person's condition. Most docs think they already know it all, and anything a patient brings is irrelevant.

    Whew, I didn't meant to rant. I guess I got on a roll because of my frustrations with docs. My family doctor is great, but like I said, he just doesn't have the time to hear me out...

    I know there are really great doctors out there... I just need to find them (it's like finding a needle in a haystack).

    God bless you all!

  14. dreamer28455

    dreamer28455 New Member

    ohwhatpain, all i can say is wow...what a wealth of info!! I appreciate your suggestions about the different pain going to take a lot of this knowledge to my doc on the 2nd. i always save the meds that dont work on me just in case i can go back to them later. i cannot do the anti-inflamatories they are bad on my stomach. i think the doc im seeing now is the right one for me! the rotating meds thing is a good idea and i may discuss this with him also! i would hate for the vicoprofen to stop working b/c im in a really good mood for the first time in a while! again...thanks for all the great really know your stuff!

    DeborahLynn, i dont mind your rant at all...i feel the same way most of the time...its so frusterating! the rhuemy i went to told me to excersize like yea right i get done work and i go home and thats it for out! i hope you find a doc who listens and give you time to talk and helps you deal with the disorders! it is no fun searching from doc to doc..but we have to do it. i really hope your pain gets better and tolerable for you! thanks for the reply!

    <3 Rachel
  15. OhWhatPain

    OhWhatPain New Member

    I too have the stomach problems (Reflux) Bad since I have a Hiatal hernia. I use to take Advil 6-800mg alot, but when Vioxx (Not available now-Celebrex is) first came out I was in love...I also have the constant headaches and that one Vioxx a day eliminated my daily headaches and it didn't cause the bad stomach problems...I won't take Ibuprofen at all..When Vioxx was pulled that left two other drugs of this type-Cox 2 one was Bextra and the other was Celebrex. I ended up on 200mg of Celebrex once a day and two if needed. It worked so I stayed on it. Bextra was pulled off the market so it wasn't an option. The main thing is read,read,read there are sites all over the net..I have been doing this since 1992. I Can't STRESS enough how important your doctor is..Ask around to see if you can find a doctor that doesn't come in and rush out....and they don't let you say much..If you have one of these plan on leaving..Once you have a doctor that listens to his,or her patients then the next quality is believing that FMS/CFS exists and finally compassion for the suffering.. The doctor has to believe your not just trying to score narcotics for the Euphoria effect and this burns my butt...Working in the medical field I get to see the views of some doctors and I really get pissed..I was in the ER with a doctor I had always liked when he walked into the office and said Oh boy another Fibro patient.."Oh Woe is me" I bit my tongue..See I don't talk much about FMS to people because they can't understand it, so I keep quiet, but Everyone I work with knows I have it and I think this doctor realized that after he made his remark about FMS, but its just a reminder of what the average middle age and older doctor thinks..Their not up on new research unless its something they want to know about, so to these physicians we are all a bunch of nut cases..Yeah I'd like to give just one of these people my body for one week...,Which leads me to one final thought on your Doctor..Look for one that is 40, or younger, or just out of medical school...They seem to be more up to speed, but always remember if you get a good doctor that believes they will receive the best information from your research.

    Paul C
  16. dreamer28455

    dreamer28455 New Member

    The celebrex tore my stomach a new one! Lemme tell was bad! I have been doing soo much research since i figured out I had it about 4 monthes ago...but i still learn new things about it daily! I love this site it has helped me so much. i love the people here and it makes me so happy to be able to relate to so many and they relate to me. the doctor i'm seeing now really seems to listen to me. we have talked once a week since i started seeing him...sometimes for over 20 mins! he really is took me that nightmare of a visit on monday to realize how great he is. i should never have went to it...the temptaion of a doc who has fibro was too much to pass up...oh well live and learn. now i appreciate my doc so much more. i really hate that commment your doc made in front of you! how rude! ranting again lol....thanks so much for all your advice and its good to talk to someone about these doctor problems.
    <3 Rachel
  17. obrnlc

    obrnlc New Member

    hi rachel,
    i know how much you were looking forward to this appointment, sorry it was such a dissappointment for you!
    i agree with a prior poster about people who claim to have fibro, then say "i only need an occasional motrin, etc." or something like that that puts us dowwn.
    i was afraid this guy might be one of them, but i do agree with the kadian, since it is what i take, and i thought from other posts you were already on short acting opiates (sorry if i confused you with someone else)
    sorry it didn't work out for you--L
  18. sheep04

    sheep04 New Member

    Hi! I'm new to the message board and just read of your awful experience with this doctor. Seriously, I would report this doctor to your local AMA. This is ridiculous that anyone would treat you or any patient that way!! I'm so glad you had a good pharmacist and a good primary care doctor that could help you out! Stick with them!
    Good Luck!
  19. Adl123

    Adl123 New Member

    Wow! I'm so glad you aren't going back!

    Whenever a Dr. says not to go to your primary, or to any other doctor, that is a sure sign that he's no good. Also, it was sneaky of him to test you for drugs without telling you. I don't know if it's even legal!

    I'm sorry you had to go through this. I hope you find treatment that really helps you.

    What has helped me, and has put my Fibro pain pretty much into remission, is Acupuncture. In fact, a research paper came out from the Mayo Clinic recommending Acupuncture for Fibro. You might give it a try. Be prepared, it takes time. Natural cures take a lot longer than chemical, synthetic ones. The good thing is, that your whole body will benefit, and there won't be any side effects (just a little soreness, and maybe not even that) .

    Good luck, and a big hug,
  20. dreamer28455

    dreamer28455 New Member

    obrnlc, i really was looking forward to this appt! but hey it made me appreciate my regular doc so much more. i am feeling pretty darn good today being on the vicoprofen!! i did laundry and vaccummed yesterday! i think i went a little overboard though....i was achin afterwards but still! i havent been able to do that in a while. the only other opiates i was on was darvocet which didnt touch my pain. the kadian doesnt knock you out? i blacked out the night i took it...cant remember a darn thing! oh well...thanks for the support though!

    Sheep, WELCOME! Thanks for postin to me...this board is great and im usually on here every weekday while i if you wanna chat just post to me. Thanks for the backup of how crappy this doc treated me!!

    Adl123, that drug test made me feel like a criminal!! Even though i did nothing wrong! i have been doing a little research on acupuncture..i have been thinking about it. but im worried my insurance wont cover it and it may not help me and i'll be wasting more money. well everything is worth a try..thanks for the kind words!!

    <3 Rachel <3

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