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    Frustrated with physicians
    amyobannon posted:
    I'll try to give the Readers Digest version. I am 41 and have had ongoing chronic widespread pain for several years now. With the exception of an acute cervical herniation 18 months ago and a bulging lumbar disc, the doctors cannot find anything wrong with me. Here's my issue, no doctor will listen to me. I recognize alot of the signs of Fibro, but I know that it is a rule out diagnosis. I have asked a NP friend (who lives in another state) how I should proceed. She tells me I should start with a rheumatologist. I lost my primary physician over a year ago and cannot find one that I bond with. She used to take me into her office days before each visit to just sit down and listen, I can't find another doctor who takes that sort of time with me. I have seen several doctors in the last few months, no one wants to acknowledge my Fibro concerns because I am functional. I am not crying or lying in the floor writhing in pain, I am not overdramatic about it. I have a disabled child, he needs me and I have just learned how to function and be in immense pain at the same time, but should I have to? I'm not asking for pain meds (although I have been on them long term at times while in pain management a couple of years ago). I am always tired and severely depressed. I live in a state that utilizes a narcotic monitoring system and I feel like that is haunting me. I don't doctor shop, I don't jump from physician to physician and I have always been upfront about what medications I am taking when I see other docs. All I want is a referral to a rheumatologist. Why would these physicians be denying me this?
    dollbug responded:
    Hello amy and welcome....MiMi in NC....I want to know if your insurance company requires a referral before you can get an appt with rheumatologist....if that is the case then you will either have to go to a family physician and request this or perhaps you can go somewhere like a prime care and ask for a referral there. Now you can also do this: you can call around and try to find a family doctor who actually treats FM and make yourself an appointment with the doctor, if they are taking new patients. I am sure you already know that there are still a lot of doctors who do not even believe that FM is indeed a real illness, so you should try to find one who does.

    I think we FMers all get sick and tired of being sick and tired and going to doctors who do not understand what we are dealing with everyday.

    There are other means of coping without pain pills. Research indicates that doctors do not like to give pain medicine to FMers.....this illness is long term.

    I hope you will check out the info under *tips* and *resources* here....I am sure you will find some good *tools* that perhaps you have not thought of trying.

    There are so many things that we can do to help ourselves....and we should indeed explore these options and figure out how we can cope better by doing things differently.

    Vitamin D....I would encourage you to be sure and ask your doctor to check your Vitamin D level, which is important to a lot of people. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well. This is just a simple blood test BUT you must ASK the doctor to run it is not included in the normal bloodwork that is done.

    We, FMers, must keep on keeping on until we find what works for us.

    Take care and good luck.


    missist replied to dollbug's response:
    First off, Hi there!
    Second off-- don't assume a rheumatologist is going to be 'better' cuz chances are they will be as bad or worse. They are quite busy seeing 'interesting to them' patients with auto immune things. If you are sure you have fibro--you probably do.

    Look first for a better primary care doctor. Which is hard. I had one I loved but I moved away, when I came back I went to where I had her again--and turned out she was not taking patients anymore as she is only there part time. However--the dr I did get is up to date on chronic pain and gave me what is considered good--although I had to drop 2 rxs, traded for another. Its hard to get a combination that works for you--and RX's are only part of the solution-- you also need to live in such a way that you can take care of yourself better-- pacing, resting, a little exercise, hydration, etc. some like supplements--I have used them but most don't do much for me-except Vit D-- when I am low.

    For pain-- I personally take an nsaid, & an anti depressant. I'm a little off currently--I could use just a little more help--but I don't know if my gutt can take more pills.

    I'm hoping and hoping that a hot tub will land on my porch. LOL.

    I do exercise that fits my personality--which is working on my gardens. (not veggies--flowers & herbs)

    I have tried all kinds of classes and such--but they wear me out and I don't feel like I've accomplished anything--but if I get worn out in my garden--at least I've also made something prettier.

    Anyhow-- my best to you-- I used to think a rheumatologist was the 'magic bullet' but found out several thousand dollars later that it was pretty much another dead end. Still--you might be luckier.

    I will add you to my prayer list, God Bless,
    amyobannon replied to dollbug's response:
    No, I don't require a referral from my insurance, but the rheumatologists require one from a PCP.

    I don't want pain pills, I want to stop hurting, I don't particularly care how we get there.

    I know my Vitamin D is low, I am supplementing.

    I am just tired of MD's assuming that I am seeking when I'm not, they don't take the time to listen.

    Thank you.
    amyobannon replied to missist's response:
    I am only seeking a rheumatologist for two reasons, 1. I was told by a friend that it was a good starting point to rule out other autoimmune issues and 2. I can't find a primary doctor who is willing to take this seriously. I would PREFER to have this taken care of my a really good PCP.

    Relaxation is a hard thing for me, I have a child who has Cerebral Palsy and Autism so relaxing for me is actually cleaning the house. I don't get enough sleep, but I sacrifice myself for him. I don't have much help. I am on Vitamin D.

    A hot tub would be great.

    I actually do exercise, run on the eliptical - the smoother movements are easier. It doesn't ease my pain, but gives me a bit more energy and helps me sleep a touch better.

    The prayers are the only reason I get through my days without being hammered on bourbon. They are always welcome and appreciated.

    Thank you
    missist replied to amyobannon's response:
    Hi Amy..
    I hope I didn't come off to flip or something. Its hard sometimes to talk online cuz people don't know you and can't see your face etc..

    I was sharing what I found out-- I've been to 2 rheumatologist the one who diagnosed me in 1988 and the one I saw fresh out of med school at Duke in NC last fall.

    Neither of them really helped.
    I did spend a LOT of $ and got lots of tests which i'm pretty sure I'll have at least half again when I see a neurologist soon.

    Currently Rheumy's are supposed to handle fibro--but they seem to me like they'd love to hand it off to the Neuros--which would be a little more appropriate once auto immune is ruled out.

    I hate to have my 'mood' right now effect how I'm saying things. I"ve been pretty frustrated myself.

    Anyhow-- yes I will definitely pray for you. I hope you find better docs than I did.

    A hot tub would be great for ALL of us--and that's on my prayer list too. LOL.

    my last bout of exercise caused my most recent flare which has lasted almost a year now. LOL.

    Peace Sister!
    amyobannon replied to missist's response:
    You didn't. No offense taken. I'm just irritated in general with the entire situation.

    Thanks again.
    BetteK replied to amyobannon's response:

    Have you asked your neighbors to recommend a PC practicioner? I assume your son has a doctor at your new home. Why not ask at that office for the names of some family practicioners? I had been to see an eye specialist who was great when I thought to ask her for a recommendation. She pointed me to a wonderful neurologist who was really up on fibro.

    If you are able to function, you are probably getting some benefit from your present medications. You should be thankful for that. Too many "experts" consider a 16 % pain reduction to be a good outcome.

    Your exercise experience does not surprise any of us. I got a major flare from a physical therapy evaluation. Like a fool, I weathered the PT course. It took a long time for that flare to leave. One type of exercise that seems to be less of a problem is aquatic. Check out a warm water aerobics class in your area or the possibility of aquatic physical therapy.

    Unfortunately, we grow new neurons and new sensitivities, after 10 years of aquatics, I started sweating every time I entered the pool. Now even my showers are a little cooler.

    The same thing happened with another therapy you might try. I tried to keep an open mind about acupuncture, but I was doubtful. It gave me some days that were actually pain free!
    Then my scalp got sensitized. It's been 5 years, and it finally stopped hurting to shampoo or brush my hair. But those little needles are painless, and they do work.

    No, there is no such thing as a magic bullet, but there are ways to make your days better. And there are wonderful people here who truly understand. We are a caring bunch.

    Welcome to the family,

    booch007 responded:
    Good morning,
    This is the tough part that we need to get through here. The fit of physician is so tough at times. Then it is the trial and error of meds to help lower the pain threshold . It is fact.

    I hear the tension in the posts above on that passage for them and I can also get into mine but lets just say it was 9 MD's and I am in the field and KNOW PEOPLE.....didn't matter.

    I see neurology with a myofascial arm and they care for me great. I walked in their door as I have nerve impingements that create neropathy feelings. I use trigger point injections as my main therapy above my meds. THEY added all my meds. I walked in on Motrin and it wasn't helping and I began bleeding.

    I work full time, I applaud you as I too have learned to function within this body I have to accomplish the day I need to have. For you it is a tough walk though I bet.

    Your Internist can be your anchor in this, or a rheumy that gets you. It is many trials though. I would like to say a call to neurology and ask if they care for people with myofascial issues and see if there is a yes.

    The American Rheumatology Society had their big meeting years ago and wanted to move the FM's over to neuro as they are a neurochemical issue, but it has not happened. $$$ rules alot of practice. It would drop Rheumy schedules quite a bit.

    A new patient gets 40 minutes and a follow up is a 20 minute visit, if they follow the rules of the road. So don't look for an hour of listen and love. Reimbursement to the docs has dropped year after year and they are pushed to DO MORE...SEE MORE. It takes the personal out of it and some are bitter to be forced into practicing a certain way.

    The other thing changing in Health care is the melding to LARGE GROUPS...the lone standing physician is going to the past. So then Corporate rules....another thing that can trickle down to the patient.

    These are the realities, but you can truly find the gem among the stones......that zebra among the horses waiting to meet you. Maybe the NEW partner in a group that still has all his passion in his pocket.

    For me I always reccomend the large medical facility near you or travel to start in the system again, once established you can your credibilty and some meds have been given to tune you up. I am hopeful it will happen for you.

    You can also send out a help here....tell us where you live and if someone is near you , you can privately talk and she can hook you up with someone good. WE are not allowed on FB to suggest a physician. But the process can begin here. WE ARE A SUPPORT GROUP and we are open 24/7, what is better then that!

    Good luck and hopeful things get better for you. Please look tot he right in resources for the MEMBERS TOOLBOX for hints and tools to help you further.

    Hugs, NAncy B

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