I have been diagnosed and have seen a rheumatologist once, but, after waiting for over 4 months to see him all he did was say yes you have fibro...the drugs you are on are o.k., we'll look at some blood work and I will see you in 4 more months!!
You see in Canada we wait up to 2 years to see a specialist...I travelled over 2 hours to see this Dr after waiting for 4 1/2 months...(the wait in the city closest to me was about 28 months), only to be basically brushed off and told to wait some more!
Please, any ideas you all have as to how to get some questions answered or what to insist he do to help me would be appreciated. Believe it or not I am a nurse and I have never felt so unprepared and helpless in my life. I have researched fibro online and am well aware of the physiology etc but have no idea how to partner a rheumatologist in my care. I felt like I waited for nothing! Going to another doctor would again entail a wait of months and months so I would rather get the one I do have to actually DO something! I am asking you to let me know how to engage him in my care...questions to ask, tests to insist be done, other health professionals to involve etc.
Before seeing him for the first time I had extensive xrays which I took with me to the appt, he did extensive blood work about which I have heard nothing, even though I called his office several times in the weeks after my appt. I am frustrated so please any ideas would be much appreciated!
"Il faut d'abord durer"
"One cat just leads to another." - Ernest Hemingway
I posted this message 2 days ago and although many of you have viewed it I have, so far, received no responses and I am not sure why...
"I have been diagnosed and have seen a rheumatologist once, but, after waiting for over 4 months to see him all he did was say yes you have fibro...the drugs you are on are o.k., we'll look at some blood work and I will see you in 4 more months!!..." (message clipped for brevity)
Perhaps I was not clear in my post what it is I need. If so please let me know how I can improve my posting abilities. I don't post often so maybe have not stated my concerns clearly. If so I apologize. I really would like some ideas to ask the Dr. next time I see him...questions that will engage him so he may actually DO something...WHAT I need I am not sure, but I feel that HE is the doctor and I went to him for some answers! I feel he really was not all that interested in my case.
Again I would really like to see if I can get him to help me as opposed to waiting for months and months to see another specialist. I thought maybe if I had a list of questions to confront him with I may be able to make him see that I do need help, not just platitudes that I am on the right pills etc. My theory is if I AM on the right pills why do I still suffer every day and not only am I not improving I am getting worse!
Last edited by moderator2; 04-14-2007 at 10:47 AM.
I am answering just so you know we are out there. I really can not be of much help as my trip to the rheumatologist was useless except to confirmation of my diagnosis my pcp and I had made. As you said he gave me pills and told me come back in a month. Had trouble with the pills the way he wanted me to take them - stopped one and the other I take only as needed - usually take at night. I decided against going back to him at this time - my pcp agreed.
Sorry Im not much help either......my Rheumy was a disappointment.
First visit I thought Ok this guy is good and knows about fibro and he is gonna do right by me.
Second appt 4 MONTHS later.....ok this guy is an idiot, is he the same guy I was sooo hopeful about. All he does is say hows your fibro, I tell him and he ALWAYS wants to give me a shot in the hip of corizone! I don't want no shot!
He says there is no miracle pill, well there isn't any miracle shot either. What is that shot in my hip gonna do for my arms, knees, back, shoulder and face!!!!
Then he sends you off with another extended out appt.....Im due back AUGUST, my last appt was FEB. Well Im not going back.......he is useless and he's not getting my money!
I have never seen a rheumy. I often wonder if I should. I am not so sure it will really help after reading this thread. I know that Elmhar posts alot about educating yourself and being your own advacte. I have found that this is what has helped me. I read extensively and come up with my own plan for what I need. I then use my best powers of presuasion to let the doctor's know what I need.
I had a wonderful rheumy! Just by chance, he had back problems, so he needed me as much as I needed him-LOL. So, I got a royal treatment from him. He went over all my meds (sounds like yours did the same), but actually changed a few. He felt that the oxycontin wasn't needed-too expensive-and switched it to methadone instead. Saved me almost $200/month! He also moved around some dosages of anti-depressants, and moved around when I took them, from day to night, to help with the fatigue.
I only got to see him a few times before my insurance changed, but I sure liked him a lot. He also filled out my paper work for SSD and helped me win my case! If not for him, I'm not sure I would have.
I really can't think of any questions you need to ask-it really does sound like your doc went over the things most rheumy's go over when they see you. Like the others said, most are very cold, get you in and out, and on to the next patient. Some don't even believe in fibro, so you're ahead in that department! I suppose you need to examine your own aches and pains and see if there are any issues he didn't address. Does he think PT or any type of therapy would help you? Water aerobics? If so, get a script from him so it will be tax deductable. Does he feel a chiropractor or a massage now and then would help, that sort of thing. Those are the questions I would bring up. What does he see for your future and how does he see you getting through this?? What does he recommend to help you??
Are there nutritional supplements out there he recommends? How about diet/exercise? That's all I can think of right now. Good luck!
You are all so very kind...thanks for the suggestions. I think I am getting the feeling that these doctors are the same no matter what country you live in. Here in Canada we pay for our health care through our taxes so paying for the visit at the time of the visit isn't a problem.
What exactly is it these guys do??? From the answers here it seems they are all pretty much useless! Perhaps I should look for a different kind of specialist such as one who deals in pain management...
I know it can take awhile to finally find the dr who is the one for you, but I am really tired of the brush off I am getting. The problem here in Canada is that the waiting lists can anywhere from months to years and by the time you actually see the dr the whole dynamic of your symptoms may have changed. Sounds fairly hopeless to me. I am happy that at least one of the respondants had some luck!
Anyway thanks for the replies and I guess I will have to do some real searching for the right combination of pills and other therapies.
"Il faut d'abord durer"
"One cat just leads to another." - Ernest Hemingway
I'm new to this post thing..but here it goes..
I was told about six months ago that I have Fibro.
It has taken me about 5 years to find out what was wrong.
I to live in Ontario, and understand your frustrations.
Iam lucky enough to work in the states, and see a U.S. doctor.
I ended up with a Rheumy, which I didn't quite understand why.
But it turned out fibro was one of her specialties.
She has prescribed two different medications.
One for the neuropathy in my feet, and for my attention span.
I still have bad days, and Iam stiff every morning...
I also have spasms in my feet. I get pretty exhusted if I don't pace myself.
I would write down everythings your feel.
Ask the rheumy about it.
I also struggle with smells. and some lights.
My elbows get stiff and sore, my hips hurt sometimes at night.
And the list goes on and on...
My husband and I just got back from a cruise. I found i only had one bad day, which I slept it off. I found the heat made me feel better.
My rheumy also said diet, and regular excerise would help.
Aqua excerise was her wish. i may try it.
Iam not sure if I even touched on what you needed.
I guess the biggest thing is writing down everything..Journal every day how your feeling and what is bothering you.
Even the stupid stuff, because sometimes it becomes the important stuff.
Good luck to you...Hope to see you post again.
Last edited by Passion Flower; 04-27-2007 at 09:58 PM.
ive given up on my rhumie, was thinking the other day, that after two years, thousands of dollars, if not more on tests all of kinds, he isnt any further in his treatment of me than he was when we started. its just come on in, your tests were abnormal, we want to run them again. when i call for results, they say yes, the stats were high, so i ask them, what does the doc want to do about it then? oh, nothing right now, we'll keep checking you!!! after two years, i am no further in treatment (he's prescribed no meds or therapy for me), yet he keeps saying i have an autoimmune disease plus fibro plus osteoporosis. soooooooo, what the heck am i going there for??? it just hit me,these guys have it made. no real treatment, just writing orders for blood tests and mri's, and saying yes this test was abnormal, but we'll keep an eye on it.
i finally get all my meds from my reg doc and my pain management doc. trust me, my rhumie reminds of of Kramer from the seinfield show! and thats scary
If the one you have isn't doing what they should, then I'm sorry to say, but get a new doctor. There's no way around it.
The rheumatologist that I see comes in for about 5 minutes, tells me to continue with my medication, and then leaves. And to add to it, his secretaries are the most arrogant old women I've ever met, and they're always messing up my prescriptions.
I'm on the search for a new rheumatologist.
It's really important to get the treatment you need, and the quality of care that you want. If a doctor doesn't know you, or your case, then I don't see how he's going to help you. Which is why I'm switching to a new one.
And in the US, it takes at least six months to get into a rheum, too, if you're lucky.
The usual sequence of events is That you first talk with the new doctor and supply your personal information. The doctor reviews any records you have supplied. The doctor orders tests that weren't already covered. On the second visit you get meds and maybe other therapies. And then many other visits you get meds that you haven't tried before or something new on the market.
The trouble you are facing is that this is a syndrome and has no set treatment procedure. Everyone is so different in their reactions to the therapies and meds. For some antidepressants are good and others this treatment is depressing and useless. For some Neutrotin is good and others this meds is nerve racking and useless for pain. I think most doctors go through certain groups of meds until they can tell how you react and then don't offer the ones with which they know you do poorly. Unfortunately, this takes a lot of time, money, and disappointment.
Our daughters have been diagnosed with FMS for about 7 years. They have gone through a bunch of meds. The result has been very disheartening. The few meds that have helped have been very little help and many have had major side effects. I think the most that has happened is that we have learned to live with it. Humans are very adaptable.
For your situation, couldn't the specialist consult with your primary care doctor or some other doctor closer in distance to you? The specialist will give the instructions to the other doctor. The other doctor will see you and give the evaluation to the specialist.