My rheumatologist no longer sees fibromyalgia patients

Discussion in 'Fibromyalgia Main Forum' started by IntuneJune, Oct 6, 2006.

  1. IntuneJune

    IntuneJune New Member

    She says, she can do nothing for FMS patients so she has stopped seeing them in her practice.

    Either this is very maddening...... or she is the only HONEST rheumatologist I know.

    (I am still able to book appointments with her because of my other problems).

    I was booking once a year appointments with her thinking that she would be abreast of new breakthroughs..... She used to prescribe meds for me but since I was not getting the expected relief, I discontinued them. I have been seeing her almost 30 years.

    As a fibro-patient, anything I need, I can get from my PCP and being here on the board keeps me up with the latest anyway.....

    But I do wonder how this impacted her other patients.

    Fondly, June
    [This Message was Edited on 10/10/2006]
  2. My rheumatolgist isn't taking any NEW fibro patients as they take up too much of his practice he said. Hmmm you think that would clue him in that we NEED HELP and there are ALOT of us out there.
  3. Redwillow

    Redwillow New Member

    I live in Ontario Canada. I waited almost a year to get to see a rheumatologist. She very quickly diagnosed me with FM but then informed me that she isn't taking anymore Fibromyalgia patients.

    I was too tired and stunned by the diagnosis and the couple of pamplets that she handed me to ask why at the time.

    She wrote an excellent report from the one visit that was 3 1/2 pages long and sent it to my GP. That report helped me get my disability but I was still upset to be diagnosed with something chronic and then be told that she wouldn't take me on as a patient.

    I have since found another rheumatologist who is extremely nice. I have to drive 2 hours to see her but at least she was willing to take me as a patient and seems to understand FM.

    hugs Redwillow
  4. CAAnnieB

    CAAnnieB New Member

    June,

    A Rheumy I saw for a brief time finally told me that she "doesn't do pain management"!...I thought, "What?!!!...This lady sees people with Rheumatological conditions/Arthritis/ FM & they are ALL dealing with pain! How can she not "do" pain management?!"...Never went back to her as she had nothing to offer me besides recommending water exercise...which I do on a regular basis.

    I saw a WONDERFUL Rheumy before that one who unfortunately retired. She herself had Arthritis of some type & I think it made her a very special Dr...She was probably the best Dr. I've ever seen. I remember having to wait a long time in her waiting room, but I didn't mind at all...because I knew that she was being thorough with each patient & once I got in to see her, she would spend as much time as necessary with me to address all my concerns/ symptoms. She was a gem.

    The last pain Dr. specialist I saw pretty much told me there was nothing more he could offer me...He didn't believe in pain meds for FM, I couldn't tolerate the anti-seizure med he prescribed...so he told me to "accept the cards I'd been dealt"! (Seriously, those were his exact words.)

    I have since found 2 Dr's who tried very hard to help me. One was a Neurologist/ Pain Dr. The other is my current FM specialist.(Actually he is Board Certified in Internal Medicine & Rheumatology- specializing in Fibro)

    Honestly, who WOULD want to treat us?! Hardly any treatment works longterm & let's face it...We DO require a lot of time & effort! Our conditions are so complex & ever-changing. There seems to be no standard treatment which works for all of us.

    I think the only Dr's who are really willing to go the extra mile for us are either motivated by 1) money (those who don't take insurance & charge an arm & a leg) or 2) they have had personal experience with our DD's (themselves or a family member)...therefore they are truly dedicated to finding effective treatments or 3)they are simply exceptional Dr's doing their best to help. Most physicians do not have the time to keep up on all the latest research/info on our DD's.

    My current Dr. & his P.A. fall into the second category above. They are very compassionate & dedicated to helping. I'm blessed to have found them. I'm also thankful for my Family Dr. who has supported me for years in my quest for better treatments along the way.

    It does make me sad to think of how many Fibro/ CFIDS patients are turned away from Dr's...and if they don't have the resources or energy to pursue other options, are they suffering and left without much hope? Sadly, it seems we have become the patients no one wants to treat because they honestly don't know what to do with us!

    I think your Rheumy's position is both maddening & honest...

    Hugs,
    Annie
    [This Message was Edited on 10/06/2006]
  5. NyroFan

    NyroFan New Member

    intunejune:

    I think that is really awful. I know I would not like it if my rheumatologist ever said anything like that.

    Luckily when I leave he puts on my receipt the diagnostic codes:

    729.1 Fibromyalgia
    722.4 Cervical Disc Disease
    401.1 Hypertension

    I don't know how a doctor can ignore a disease with a diagnostic code, is real and needs really good pain management.

    I am sorry this happened to you. Luckily you have options, so you can breathe a sigh of relief.

    I hope it all works out with you.

    nyrofan
  6. CanBrit

    CanBrit Member

    My Rheumatologist did, and said the same thing a few months ago. He said that if I had any further concerns or changes come up, I could call and make an appointment, but that my drug, blood & other test needs can be met by my family Dr.

    I'm from Canada and I just heard recently that my province, Ontario, has a new medical billing code for CF/FMS patients that better refects the time needed to be spent with CF/FM patients.

    If you have health insurance, is it possible that it's the billing that's an issue for your DR as well? In the grand scheme of things, my family Dr is looking after my care perfectly well, so I'm very lucky.

    All the best June.

    Eileen
  7. Granniluvsu

    Granniluvsu Well-Known Member

    Hi June,

    Something similar happened to me( in a round about way). When I was searching for a rheumy that would take me (after having symptoms for over 20 years)I was very careful to call them first to see if they would treat and dx FM, etc. I had made an appt with one who was as close as I could get and made and appt. At that time I asked if she treated and dxed people with this DD. She or her nurse said yes she does. I had to wait close to two months to get in to see her.

    Meanwhile a friend of mine goes to a very well known rheumy for her very bad arthritis. So I thought I would try and call her for an appointment. I did and was surprised when her nurse said she does not treat or dx FM, etc. At least her office did give me the names of a few drs. that did work with FM pt's. One of them was the one that I had already made an appt with.

    That was weird enough but then I met someone else on a message board she said that she was just referred to this Dr.for all her good work with FM.(the one whose office said she did not work with FM pts, etc.) I was shocked and told her that she had better ask questions first before getting there and finding out she was out all her money and that that dr. would not dx or treat her. I told her that I understood the nurse at her office to say NO that they did NOT work with FM patients. I guessed that pehaps she did do so at one time and then had decided either it was not worth her time or to time consuming for her.

    Well, she did take my advise called and was told the same thing. I just told her who I was going to so I am not sure what happened. It is really ashame. It ONLY took me 20 plus years to get dxed. I brought all my recent labs with me and my history to the rheumy and I almost dxed myself. When I first got symptoms nothing was known except through a blood test they did determine that I had Ebstein Barr Virus thought to be at that time something like mono and then later on, one of the possible causes of CF/FM/CMPS etc.

    I at least feel good that I finally have a dx and don't feel like a nut. Some docs do think you are one. I am sure you know that. It is a shame that some docs don't want to deal with people like us. I suspect it is for a variety of reasons. Pretty much also if you are not completely thrilled with your doctor you may not have that many choices or places to go for care, esp if you do notlive in a big city. I have to go farther and farther to go to my specialists. My endo almost did the same thing. She helped me with my hypothroidism and my osteoporosis but after going to her for almost a year she decided it was not worth it for her to come one day to my area. So I had to search for another specialist alot closer. To see my old one I would have had to go about 30 miles one way. No, not the way I feel, unless REALLY desperate !!

    I don't know if I helped you at all but I can empathize with you in this doctor search and dr.'s who decide not to work with you esp after they have been treating you. That is really bad news. Finding one that dxes you and then says she cannot work with you is really bad !!! It is like going back to square one. All these specialists are driving me crazy anyway. It is so frustrating !!! It is bad enough having this DD without having someone to be there to at least trying to help you.

    Blessings,

    Marilyn (Granniluvsu)

    Bye for now.
  8. IntuneJune

    IntuneJune New Member

    Thank you all for your concern, but please don't worry about me.

    She will continue to see me for other things that fall under her umbrella, but I was shocked to hear she dropped FMS patients.

    I approached her as she had said nothing to me about this, "I have heard you no longer accept fibro patients" and she confirmed this.

    She dx'd me about 25 years ago, then it was fibrositis and on that visit said if I had walked into her office the week before, she would not have known what was ailing me. She just returned from a conference for rheumatologists and this was one of the presentations.

    Having been at this stuff for so long, going the pain med route...she was liberal with me as far as pain meds went.... the muscle relaxants, the antidepressants..... and turning to other ways to help myself, I was going once a year, figuring, if anyone heard "breaking news" for FMS, she would be the one.

    If other rheumatologists follow her lead, then what speciality would keep tract of us....

    This is my concern.... if rheumatologists drop us from the speciality, who will be in the front line investigating the latest for treatments, causes.

    Yes, we can be treated by PCP's on these same protocols, but we cannot expect our PCP's to be on the cutting edge of every kind of ailment out there.. they do not have enough time.

    I have often wondered if we belonged in a neurologist's office in the first place, but I would bet they, as a group, would not take the fibro community on.

    Love, June

    [This Message was Edited on 10/06/2006]
  9. IntuneJune

    IntuneJune New Member

    Again, thank you.

    I wish I could remember all your names to address you individually. This board is wonderful for emotional support, guys, you are great!! Thanks.

    Right now, I am no longer taking pain meds. This rheumy and I really have a long track record. And we went the pain med route. The pain meds did not address the fibro pain, maybe the first week or two but then, I was back to square one, she would up the dose with the exact same result, she was always willing to support me with the meds but it just was not making a difference. So it was I who decided to cut back and then cut out.

    I did ask her for a script for PT, she had never brought that up. I got tremendous help with going to PT because I fell literally into the hands of a myofascial release therapist.

    Over the last few years, I was the one who was bringing up the some of the latest information... not her.

    So when I heard the "rumor" I was not surprised she confirmed it.

    I think she was just being honest, she said nothing she did really helped the FMS patient, it certainly was true in my case.

    I get more help with reduction of symptoms from (in no particular order):
    My allergist (staying away from trigger foods, controlling environment)
    Myofascial release treatments
    Aquatic therapy/exercise (became certified to instruct it was so helpful)
    Juicing
    Stretching, stretching, stretching
    Klonopin at night
    Learning from this board (where I first learned about Klonopin.)
    Having a PCP who goes along with most ideas I bring to him in printed form.
    Supplements, magnesium, calcium, etc.
    Probiotic

    Well, there is probably more, but cannot think now.

    Again everyone thank you.

    Don't worry about me. But I am worried about CSFers/FMSers as a subset of patients.... if this is going to be the trend.

    Love to all,
    June



    [This Message was Edited on 10/07/2006]
  10. Adl123

    Adl123 New Member

    Dear June,
    It sounds to me like she is being honest. I dumped my Rheumy, because he had no idea of how to treat me, without prescribing something to which I'm allergic. And, believe it or not, he did. Even after I reminded him, he said to try it to see if I would have a reaction. What an immoral jerk!

    Actually, the only person who has been able to help me in the past 11 years, is my acupuncturist, who is also a Dr. of Chinese Medicine. He listens to me, and prescribes herbs that are actually helping me. My Fibro pain is almost completely gone! My energy is better and I can read and think again.

    Good luck.
    Hugs,
    Terry

  11. Mindy7

    Mindy7 New Member

    Hi,
    I'm new here, It is really comforting to hear about others having the same problems. Last summer every joint in my body swelled up and hurt, I was so exhausted, only ya'll understand! I went to my Dr, had high ANA, went to rheumy, who gave diagnosis of polyarthritis, but then told me more than likely I had Lupus, gave me Deomedrol Methotrexate and Daypro. Felt better for a while, then the muscle pain started. When I went back he said it was Fibro, but prescribed nothing for it. Upped the Methotrexate. Each time I told him about the muscle pain, he said once we get the inflamation under control, it would stop. It never has. After the depomedrol shots, it eases for a little while only to return worse than ever.
    In the meantime I am missing work right and left, and last month I called his office and asked him to write me an excuse for work, and I was told he couldn't keep writing me out of work every time I felt bad. Feel bad??? I figured he just doen't get it. I have an appointment with a Neurologist that I hope and pray will have a better understanding.
    Work has become a complete nightmare, I spend all my time off trying to get over working. Housework and any sort of life with my family has been pushed to the side, it is all about surviving my job. The people at work were real understanding in the begining, but they have become real tired of me being unreliable, and causing them to have do my work, when I am out. A few even give me harder assignments when I'm there to "teach me a lesson" for "laying out".

    Sorry to be whining, but a year ago I was superwoman with the job, the perfectly clean house, and energy to have fun with my family besides. I don't even know this person I have become. To be honest I don't much like her.
  12. dani78xo

    dani78xo New Member

    i acutally think that's quite ridiculous.
    FM is the top third reason to go to a rheum.

    my rheumatologist is really helpful. he sees a lot of patients with FM, and he's told me that he sees A LOT of FM patients who improve immensely after starting treatment (the stuff he prescribes is mostly pain stuff, like celebrex, and anti depressants.)

    needless to say,
    i really can't imagine a rheum not taking FM patients.
  13. charlie21

    charlie21 New Member

    All I can say to that is it is a good job our doctors don't select what they wish to treat when the going gets tough. Your rheumatologist is in the wrong job. My doctor is doing everything he can to eleviate my symptoms, and has never given up on me. It is disgraceful. They get paid a lot of money to do there best. Not saying they can cure this DD, but they can help to make you comfortable, and not write you off when the going gets tough. How are you going to get the best out of the rheumatologist if she/he simply is not interested. It almost feels like she/he is saying actually they don't really believe in it. That has made me so angry. My rheumatologist was rubbish as well, my doctor now looks after me. Please see my article on Mirapex and FM breakthough. Just about to take the drug, on order at the moment, may give you a bit of hope. Charlie
  14. pam_d

    pam_d New Member

    ...That's my frustration!

    There is a doctor in my area who is on the co-cure good doctor list who no longer accepts Fibromyalgia patients, like your doctor, June.

    I called several years ago when I moved here---had read so many good things about her, I thought this would be an excellent doctor for me.

    Instead I was abruptly told she no longer accepted FM patients, and when I asked if she had a recommendation for another doctor in the area, was told bluntly "No".

    I e-mailed the Co-Cure "good doc" list to let them know because, why give false hope to others looking for a doctor in the area? And they e-mailed back to say they'd amend the list. That was four years ago, and her name is still on the list.

    Frustrating, especially when so few docs in this area treat FM.

    Especially frustrating for you, June, when YOUR doctor has been a doctor you've been seeing for a while, and already like and trust. Tough to start over...

    Hugs,
    Pam
    [This Message was Edited on 10/08/2006]
  15. Ranigar

    Ranigar Member

    in my little town.One Rheumy and when I went for my appt. the nurse said he wasn't seeing anymore Sjogren or Fibro patients so she didn't know why they hadn't told me.I stayed and when the Dr. came in I namedropped a Dr. friend of his so I guess that's why he's treating me.It's not that he wants to that's for sure.He tells me the blood test results at my 6mo. checkup and asks if my mouth is dry,Sjogren's,and says ok shall we leave things as is?The whole time he's slumped over looking bored.If I have a complaint he'll suggest a med I've been on and can't take so he'll shrug it off.My point is,if they are the Specialist we're supposed to see for this illness and they do get paid more then the GP who doesn't know how to treat us why in the world are they turning us away?And yes I'm traveling to the nearest big city for a different Dr. but not before my appt. this month so I can give this Dr. a piece of my mind first.I'm feeling better lately and was in so much pain the other two appts. he had me at a disadvantage.
  16. suzetal

    suzetal New Member

    He would have a waiting room full of patients standing room only.You could hear him making his ski trip to Spain plans He must of been on that phone for an hour.Ticked me off.I was in a lot of pain and barely able to stand there.

    When it was my turn I told him that I did not believe he was the doctor for me.He asked me why my husband and I both laughed and told him his whole waiting room could hear his phone conversation.

    And when a doctor puts himself before his patients hes not for me.

    I am now treated by my GP she is fantastic and my neurologist she is also fantastic.Both believe in FM and CFS and up to date on new research ( with my help from this board) Neither are afraid to try new things.They support me 100% My GP always sets aside an hour for my appointments shes also a great listener.

    Sue
  17. IntuneJune

    IntuneJune New Member

    Thank you everyone. This really would be scarry if I really depended on her. Luckily, the scripts I need for FMS, namely the Klonopin, I am getting through my PCP.

    I am hoping that this is not a trend with rheumatologists, or IF IT IS:::

    What specialist should be treating us??????

    Love, June
  18. snooker11

    snooker11 New Member

    Neurologists, pain doctors, psychopharmacologists, I think would be the ones who will hopefully continue to treat people with fibro since recent findings have suggested that fibro is a brain/chemical disorder than an inflamatory, arthritic, disorder.
  19. jake123

    jake123 New Member

    Instead of saying that my rheumatologist doesn't treat fibromyalgia patients anymore, I will say that this fibromyalgia patient will not see him anymore, I quit, I refuse, I will not go to him anymore just to watch him read my file.
    I also refuse to see my PCP anymore. So I'm in a fix. The two doctors I will see are my psychiatrist and my neurologist.
  20. IntuneJune

    IntuneJune New Member

    I know of no neurologist in my area who sees FMSers.

    Snooker, are there neurologists in your area?

    Jake, how did you "find" your neurologist and how is this physician approaching your FMS.

    Thanks

    June