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diagnosed with fibro,dont know where to go

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Old 04-17-2007, 05:51 PM   #1
Join Date: Apr 2007
Location: mill creek,wa
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Iansmama HB User
diagnosed with fibro,dont know where to go

this is my first post, I am new here. I have been diagnosed with fibro, by more than one doc, but they put it as "they don't like to use that term". ok, I have been living with pain for about 4 years or so now, and am frustrated and dont know where to go. The docs seem to say it's ok to take med, but they seem uncomfortable to be that actual one to write it,( on top of that, they dont want it to be a long term thing, yet, its not like my symptoms just simply disappear when the meds are gone! ) I went to a back/pain clinic who said its fibro, but said my regular doc should be in charge of meds...basically..Im being bounced around, and Im tired of running in circles, it seems like nobody really wants the responsibility of a patient with fibro symptoms, ..they just seem to expect that it will get better on its own, by suggesting exercise ...any suggestions on where to go now? I am worried that I will be left in pain on my own!!

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Old 04-18-2007, 07:08 AM   #2
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Re: diagnosed with fibro,dont know where to go

welcome mama,
keep searching. i went thru 17 doctors over 7 years to find the helpers i have now. all 8 of them are wonderful. i have more than fibro so i require more doctors. giggle. lots of other junk that also cause pain. you learn to live with it. you learn to not give up on yourself or that one special doctor who is out there. get out your phone book, like i did, and start calling them all. ask the receptionist if the doctor is familar with fibro and does the doctor treat it. does the doctor have other patients with fibro. this saves you time and expense. this is your body and your responsibility. find that doctor. do not give up. do not.
no doctor can make the pain go away. not going to happen. i live with pain every day. you get used to it and learn to work around it and with it. my body and i take turns. somedays are for me to play and others are for body to rest and heal.
again i welcome you here. may you find answers. oh yes, are you in washington state or that other washington?

Old 04-18-2007, 09:58 AM   #3
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elmhar HB Userelmhar HB User
Re: diagnosed with fibro,dont know where to go

Hi Iansmomma,

From experience I found that when I am in a rut, going around in circles with the docs, sooner or later it becomes clear that it's time to make a change.

There are a few things I've found to be very helpful.

1. Network in the community to find other fibro/chronic pain sufferers. Maybe a support group, or maybe more informally, friends, relatives & coworkers. The goal is to gather info on who is happy & making progress with their treatment, and who their doc is. Also, who has had miserable experiences with whichever docs. Good intel, can save some time & grief in what is essentially a trial & error mission, finding a doc who is experienced & competent with your concerns, as well as likable.

2. Learn all you can about fibro & the available treatment modalities. A great place to start is one of the books by Jacob Teitelbaum, MD: From Fatigued to Fantastic or Pain Free 1 - 2 - 3 . I found both books at my local public library. Dr. T. provides thoughtful commentary on the whole gamut of traditional medical, alternative, and self-help approaches. I've been greatly benefitted by his books.

3. Once you know the sort of treatment you want to try, you can make up a couple of "qualifying questions" for potential new treatment providers. You can phone the office & pass the questions through the doc's nurse (don't leave them with the receptionist), who will usually call back in a day or 2 with an answer. Some of my past questions have been, does doc X run a certain test, or does doc X ever prescribe such & such a med, or even more general -- what is doc X's view on fibro treatment.

Best wishes.

Old 04-18-2007, 01:21 PM   #4
Join Date: Apr 2007
Location: The prairie plains, IL USA
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EverythingHurts HB User
Re: diagnosed with fibro,dont know where to go

I read the OP and I can share my personal experience, maybe this will help, if you can find the right doc.

I have been in pain and with FM symptoms for 5+ years. My Primary Care (PC) Dr prescribes all my current long-term maintenance meds. If I tell him another Dr has prescribed something, as long as that Dr sends a report to my PC Dr, he will prescribe the Rx refills for long-term maintenance through my mail-order pharmacy, which sends me 90-day supplies of the Rx.

My PC Dr also monitors all my meds to make sure I don't have any drug interactions. He also oversees my general health by receiving reports from all the other Dr's (specialists) I see. I'm lucky that I have a very good PC who works with me and the specialists I see to make sure I get the treatment and meds I need for my various medical conditions. He's been my PC Dr for over 12 years, since before all my pain and FM symptoms started.

I think if you can find a good PC Dr who will oversee your meds, you won't have to worry about not having meds when you need them. I know it's hard to find a good Dr who will do this, but perhaps if you call around and explain your situation and state that you are seeking a PC Dr to oversee your health issues and prescribe your maintenance meds, you can find one based on that criteria.

If you see a Dr who doesn't want to prescribe meds, ask him to refer you to a Dr who will prescribe and oversee your medications. I don't know what they're called, but I know there are Dr's who do that. I was once referred by a neurologist to a psychiatrist for the sole purpose of having him oversee all my medications. He saw me once a month and wrote refill Rx's for meds my other Dr's had prescribed.

My PC Dr is not in the same medical system as most of the specialists I see, but they still send their reports to my PC Dr. It helps if you can find a PC Dr in a big medical group who can refer you to specialists within his group, but it's not always necessary. (And sometimes you can find better Dr's outside your PC Dr's med group.)

Good luck finding the right Dr. It's not easy to do, but don't give up, eventually you'll find the right Dr. Just tell the Dr's up front what you need and ask if they will do that for you. If they say no, keep calling Dr's until you find one.

And as far as Dr's who tell you your symptoms will go away on their own, I've heard a lot of that crap from Dr's too. I tell any new Dr right up front that I have had these symptoms for X amount of time and it is NOT going away on it's own. I tell them I need some pro-active treatment options and an agressive plan of action to follow. I ask them what options are available for me to try and if they tell me something I've already tried, I tell them I tried it and it hasn't helped, so what can I do NOW? Sometimes you have to be insistant and agressive in getting a Dr to help you. (But remain nice and polite, of course.) If a Dr can't offer any suggestions, then ask him to refer you to another Dr who may be able to help you. I've found some good Dr's that way, by asking a Dr who can't help me to refer me to someone else who might be able to help me.

Good luck, and hang in there!

Last edited by EverythingHurts; 04-18-2007 at 01:37 PM. Reason: Add more info.

Old 04-18-2007, 07:54 PM   #5
Join Date: Apr 2007
Location: mill creek,wa
Posts: 8
Iansmama HB User
Re: diagnosed with fibro,dont know where to go

thanks to all of you for your responses, I feel not so alone in this now thank you!

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