Monday, January 30, 2012

I Am Pissed

A friend with Fibromyalgia is new to the area where I live and asked for a doctor referral. Oh that is easy, I thought to myself, and sent her the info for Community Internal Medicine at Mayo Clinic, where they provide primary care for Arizona residents. I mean you can't get better care than Mayo, can you? That is where I go and my doctor is the best doctor I've had since becoming ill. She appreciates I am proactive and I appreciate she actually listens to me and works with me to make life manageable. So my friend went and saw a doctor who referred her to a Rheumatologist. WELL the Rheumatologist got mad at my friend, his patient! He was upset the referring doctor sent a Fibromyalgia patient to him. He told her he does not treat Fibromyalgia patients, nor do they at Mayo Clinic in Arizona. She asked for another doctor referral and he all but told her Fibromyalgia was not an illness medical doctors are interested in treating.

So when she messaged me with this account I hit the roof! Not only was I embarrassed, I felt absolutely terrible my recommendation caused her the distress that comes with doctor appointments of this nature. I know I have been there myself, and most Fibrates I talk to have gone through it too. I then got on the Mayo Clinic website and stared disbelievingly at the "Preparing for your appointment" page for Fibromyalgia patients. What the hell is going on? A friend who is a knowledgeable advocate for patient rights suggested she "send a complaint to the Arizona State Attorney General for refusing to treat. Also to the Arizona branch of the AMA. Maybe put a little birdie in the ear of some hungry reporter? And, make sure Mayo Clinic knows about this person." All excellent advice. That a healthy person would have to put forth quite a bit of effort to follow through with. And we are sick, which decreases our ability to defend ourselves and make a fuss the world, or at least the local news, would find worthy of championing.

I am becoming increasingly less patient with the slow progress Fibromyalgia awareness is making. Specifically the lack of continuing education for doctors in practice. I see a message all over the place, doctors offices, hospitals. It says "You have a right to not be in pain". Well I want to take a out black Sharpie marker and write across every damn one of those notes, "Unless you have Fibromyaliga. Because we are so stupid we can't tell the difference between a drug seeker and person who legitimately is in pain due to a medical problem. So if you are a Fibromyalgia patient you are indeed expected to live in pain". And that pretty much seems to be the response so many of us face in the medical community. I started The Fibromyalgia Crusade with the best of intentions. And on Prednisone. So all my grand goals and ambitions were put to the side when I came off the drug and had to start all over at square one to get my Fibro, and my life, managed. But this is just getting silly. So in the next few days I will write out a letter folks can send to doctors that do not treat them well, acknowledge Fibromyalgia is real or flat out refuse to treat. I have had it. I am pissed. I am ready to kick some ass. And when I get this mad I usually don't settle down until a few heads are rolling...

Thanks for joining,
Leah

27 comments:

  1. Several people that I know have had the same problem with the Mayo Clinic in Rochester, MN. They are not known for believing in things such as Restless Leg Syndrome, Fibromyalgia or Chronic Fatigue.

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    1. oops would you do me a favor and modify my username to just my first name. I wasn't "of right mind" when I filled out the lil box.

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  2. This is just sad! I hate the turmoil we go through just to get adequate healthcare for our condition! I hate igrronant people who have no clue what we deal with on a daily basis and do not have enough respect to have compassion to treat us like a normal human being . Just because we have fibro doesn't make us unworthy of proper care by the medical society. My lord these people need to get a grip! If only they could walk in our shoes for one say tho I would not wish it on my worst enemy they may actually find some understanding and compassion. So glad you are such a fighter . You make the rest of us want to fight right along with you rather than give up in this insane war with our bodies and careless people who really have no clue! Get them heads turning girl!!!!!

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  3. Leah, I'm all the way in Kentucky, but you let me know what I can do to help and I will do it. We all need to bind together and help one another through adversities such as this. Be it writing to Mayo, or the other folks you suggested. Our destiny's lie in our hands, and if we don't raise the hell needed, that is what they'll do, make us live the rest of our lives in pain, and they wont do the research needed to find a cure, they wont do anything but let us suffer and those after us.

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  4. Leah,

    I hear you and agree with everything you've said! I'm so lucky to have found a compassionate primary care physician who believes in the diagnoses of Fibromyalgia and works with me very closely! She truly cares!

    Unfortunately, I cannot say the same for the numerous specialists I've had to see since being diagnosed! The judgment in their eyes when I uttered the word "Fibromyalgia" was enough to make me want to get up and walk right out the door before they even said anything to me.

    If I can help you in anyway with this huge task you want to take on, please let me know!

    Britta

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    1. I to am struggling for seven yrs since I had a trans vaginal mesh my world has turned upside down the drs are jokes i need a resolution Iam going there the same now filling for disability ho figure Mrs cocova.ps discussed .

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  5. Comments to Mayo Clinic: https://forms.mayoforms.org/forms/up/mc506400.cfm

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  6. I'm with you, Leah! I feel the same way. Not just with doctors, but with family and friends too. As many followers as you have and as many people on FM Funhouse, couldn't we create a list of doctors that DO believe, treat, and are compassionate about FM? I haven't quite found one yet, but if I could find one in my area, I would give him/her my business instead of the endless search I've been on for too many years. We need to let these doctors know that we're not just seeking drugs, we are seeking pain relief. Let me know if you would like some help.
    Susan

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  7. I've been pretty lucky so far. I have had several doctors that both believed me, and the first that diagnosed me. We sit and go over different meds and holistic things I can do to make things better. The last time i saw my GP, she spent an hour with me, and this is the doctor that is usually so busy you cannot get an appt. I think it is pure luck on my part.
    Lee Ann

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  8. Kudos Leah!
    I'm in Oklahoma, and have a very compassionate primary care doc. I KNOW how lucky i am. BUT we still have NO good treatment for pain. I'm in if you need me.

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  9. Hi above me, Oklahoma also - OKC. Leah, I am confused about one thing, i'm so tired so please forgive me if i'm extra - foggy. Your Doc is at Mayo and treats you for FM but would not treat your friend?

    My parents wasted thousands of dollars (it still just makes me mad and sad) at Mayo in Rochester when i had been sick for two years. (I am in year 20 now) We were there for a week, so on top of hospital/doc/lab/etc bills, we had a hotel bill, food. They sent me home to "get therapy" and anti-depressants! I wasn't even depressed - yet. I had no idea what lay on the road ahead. I hope somehow, some day, that money will come back to my folks, they deserve it for all they have done for me.

    I wish all of the best luck and best doctors possible, and hope we can finally yell loud enough that they hear us.

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  10. I'm in the military and ran into this exact account. I was in tears, running a fever, and joints hurt like heck. All the rheumatologist could say is I don't treat fibromyalgia patients and am I being seen by mental health. WTH? He also suggested I try the Neurology department, maybe they can treat you. I didn't know what to do except the tears kept coming.
    After that I gave up. I had to just accept the daily pain.
    It's been 2 years since and during this time I had a heart to heart talk with my family practice MD and now have a good patient and doctor relationship. She knew nothing of fibromyalgia before I became her patient but she listens to me and knows I've done my research from symptoms to medicines.
    I hate it when I hear others have gone through this because I know exactly how it felt to be treated like a leper in biblical times.

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  11. I am sorry your friend had such a bad experience. My local Rheumatologist sent me to a Rheumatologist at the Mayo Clinic in Florida. All of the doctors that I saw there were so wonderful. I was treated as if Iwas the only patient they had. After 3 days of intensive testing I was diagnosed with Fibro and Lupis plus I already knew I had hashimoto's (throyditis). They gave me a treatment plan that has made a big differnce for me. My take away from this is there are Great Fibro docs we just have to look until we find the one that is right for us.

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  12. I hate to say that I'm not surprised. Even as a doctor who specializes in Fibromyalgia, I find that a lot of my colleagues aren't understanding or supportive of those who are suffering with fibro. It's disappointing but please tell her that we're not all like that!

    Don't give up... If your doctor doesn't believe or he thinks you're crazy - FIND A NEW DOCTOR!

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  13. I hAve experienced exactly the same thing in Canada. In fact I am going back tomorrow for round two . We got into a huge argument over her ignorance , had I not already had a great family Doc and a Chronic pain team her horrible insulting comments would have destroyed me. What these ignorant doctors do not understand is that we are the strongest people on the planet having to live with daily with this disease , we need to stop waiting for all doctors to validate us and validate each other .

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  14. I'm calling out Texas Tech University Medical Center. This is supposedly a Medical School AND a place for people to come receive medical care, usually done by Residents and or Attending Doctors. I was treated the same way, unbelieving doctors who eventually told me I was just a drug seeker. Never mind that I have "No hx-history of drug abuse," that must be my problem according to the consensus among doctors there. I assume they came to a consensus, since I was "fired," as a patient. They were very slick and cautious with their language, stating, "They could not provide me with the level of care I needed for my pain treatment." Sadly/amazingly, one of the doctors was in his last rotation before finishing his Residency. The fine training he received at Texas Tech Medical School lead him to tell me, "Fibromyalgia is CAUSED by depression." I was shocked at the abyssmal level of education and knowledge that he showed. I was further sickened when a few months later I saw him take out a full page Ad in the Lubbock Avalanche Journal that he had opened his own practice! How many people has he turned away and hurt since all of this occured a few years ago? Also, I was referred to pain doctor and told "I don't treat fibromyalgia patients." This of course was after Ralph Menard had my money, and had charged me about $1500 for the first visit (those of you who've seen pain doctors know they charge exorbitantly for the first "assessment." Make bloody sure that your doctor will treat fibromyalgia BEFORE you see them. Also, get the doctor on the phone. If they care enough about their business, they will talk to you. One pain doctor whom I assumed to be an oasis in Lubbock because she does "treat" FMS patients, turned out to be a tremendous disappointment. As soon as her expensive injections didn't work, she suddenly "Didn't know how to help me, and could do nothing for me." Mind you, the visit before, she was stating she would RX me Savella, and other meds as needed. But, when I told her the injections didn't help, Savella was now not viable! Again, I couldn't qualify for her biggest money makers, injections, nerve burns, etc., so I was thrown into the garbage pail - Dr. Selma Wilson of Lubbock, TX. I then saw another Dr., Hemmo Boesscher, also a pain doctor. At the time I saw him, "Fibromyalgia is caused by muscle tension," he stated. Of course, he became angry when I presented him with studies on Lyrica which performed better than a placebo, thus throwing out his "muscle tension theory." Never mind that, he clung to it and then labeled me a "drugseeker," Amazing how that works isn't it? So, my story is keep moving on, keep seeking additional medical help, and you'll eventually find doctors who know what they are doing. That journey took me 6 hours away from West Texas to Dallas, where I've seen 2 doctors who are experts in the treatment of FMS. I'd be happy to recommend someone if contacted via here. Find a support group, be it online or in person or both, and they will already have the run down of who is good and frankly, who is horrendous regarding doctors.

    I choose to be anonymous, as I still might have to deal with these people to get medical records, etc. I am also concerned as being labeled a problem patient and informally blacklisted as a result. I'm very happy my Doctors in Dallas didn't even waste their time asking for the records that I stated were available. Why? They'd heard the my story many, many times before - unfortunately, not just in West Texas...

    Keep fighting, don't give up! Don't personalize their ignorance where you feel even worse about yourself! It is not your fault. Rather, it is their IGNORANCE!

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    1. Wow...I am here in West Texas and I see one of the physicians you mentioned..primarily for another problem..please help will post more and specifics if your out there.

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    2. My reply to your post was deleted when my tablet froze....please let me know if your still active on this page..I can completely relate and actually see one of the physicians mentioned above, primarily for something other than fibromyalgia so I have tolerated the situation for some time now. Needing your help will 're post if your here....as my hands are killing me n aren't doing what my brain is trying to have them do..thank you n bless y'all

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    3. Can you tell me who you see in Dallas? Also how they treat your FM? You can email me at sannice1979 at Gmail.

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    4. Anonymous is as Anonymous does,
      so I find it very funny how you have the ability to slam hospitals and doctors who "could not help you" but will not report doctors who did? maybe the diagnosis is correct, "drug seeker" the Lubbock doctors would not give you what you wanted so you trash them and go to your dallas drug dealers, yeah I would say that a 6 hr drive would be easy and not cause any pain if all you were after were some drugs. get over your habit and don't cry when you don't get your way.

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  15. Good job, "Anonymous"! It sickens me too, at the level of care most doctors will do, so many pulling out on writing Rx for 3rd levels and the FDA removing 5 medicines since November 2011. My own pain doctor told me when I "STARTED" under his care, that pain MUST be remedied, cause of the adverse reactive state it leave on the body, all negative. But, as my journey of CHRONIC pain has been revealed through years of monthly appointments, he is starting to question my need for this level of meds. I don't know, I do have co-morbid conditions that feed my disability including major spinal issues, so maybe I am confusing FM with Back. But, when I hurt all over, feeling like I've been beaten in my sleep, when my legs and arms and shoulders are twitching spasmodically, I need help! I, too, want to call out Parkland Hospital here in Dallas, as my own Doctor did a residency there. When he developed FM himself, he asked his attending physician about FM, and was told bluntly, "They are ALL drug seekers!" Needless to say, my own dr. didn't share his symptoms, but has shared with his patients the ignorance that is shared in medical school! Tsk! Tsk! Tsk!

    FM is all-encompassing, and I want to encourage those who are suffering, it compromises all bodily systems, so don't believe a doctor who has a quick solution, as you will need multiple-modalities to best MANAGE your symptoms. I have passed forward the original post, because it awoke a raw nerve that I work to keep under my soap box or I would go psychotic trying to march on Washington, hobbling and popping my meds in unison. Thanks for spilling it, Leah. Sometimes your own cathartic moment, helps others, too! Bless you all!

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  16. BRAVO!!! When you have this letter written, please let us know. I run a support group in Tucson and situation with docs here is pretty abysmal in regards to Fibro. I don't think this kind of thing is going to stop until we start making noise about it. Perhaps when we start pushing for docs who will take us on as patients they will start searching for better information? Maybe we should be lobbying the med schools and authors of textbooks???

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  17. I aggree with Jess. I am recently diagnosed with Fibro. The situation here in Tucson is a joke. I have spent months trying to find a doc that will treat my Fibro. The ER or the Urgent care centers will treat me better than my Internal Med doc. At least they will write a script for a pain med. My doc treats me like a druggie.

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  18. Wow Leah...you have persevered through so many issues, I congratulate you for your inner strength. I googled "mayo arizona does not take fibromyalgia patients" and found your blog. In early Jan 2012, my husband called Mayo in AZ to see if they would accept me as I have been having many symptoms that local Colorado dr's have said might be relapsing polychondritis and/or ankelosing spondylitis. The problem was that my local GP, my allergist, and my pain doctor kept trying to get each other to do a referral for a Rheumatologist, meanwhile I am having all sorts of symptoms that are getting worse as each day goes by. My husband said, "Fine, we'll go to Mayo and get you diagnosed with this RP Chondritis thing so we can get you started on treatments." Much to our shock, as we gave them the list of symptoms of RP Condritis, Ank Spond, I mentioned I had been diagnosed with Fibro about 10 years ago. The conversation stopped abruptly when the Mayo person said "We will not accept you as a patient if you have been diagnosed with Fibro". After my jaw was picked up off the floor, I said that I did not want to come for a Fibro diagnosis or treatment, but for different symptoms all together, unrelated to my fibro issues. The lady on the phone said she would check with a nurse to see if that was acceptable and said they would call me back. The call back never happened! So, I have deteremined to NOT tell new doctors that I have had the DX of fibro, so as not to be "discriminated" against. This is so confusing, and I have lost my respect for Mayo because of this. I have found a good internist who took my on as a patient, and we are working through the RP Chond symptoms and I have an appt. with a Rheumy in May. I will not be sharing the fibro DX with the Rheumy until I can evaluate their position on it.
    Leah, thanks for shraring your story!
    Rachel

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  19. I was told the same thing when I called the Mayo to make an appointment. Ridiculous! I will no longer use them for anything!

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  20. Glad to find others with issues with Mayo. I had our local doctor provide what was needed to get my wife into Mayo in Rochester MN and we were rejected. The goal was to get a complete evaluation based on the Dr recommendations and was rejected becasue they felt our Dr was doing all that could be done and they had nothing to offer. My wife has had FM for over 15 years and on 12 medications. My goal was to start from the start and get a review then recommendation. I think in the future it is best not to mention FM as this is not somthing they want to work with. I could push and get her in the FM side of Mayo but based on the fact she was rejected makes me feel they do not have anything to offer. I am not saying Mayo is a bad idea but this is not an area they want to invest in. It is much to hard to deliver good results and could result in less to positive feedback. I guess they are not willing to take the risk. At this point all they can offer is studies, books or artical on the topic. I think this is short sided and not an approach a leading health care provider should take.

    I am still trying to find a good path for my wife. So any suggestions would be great.

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  21. Princess and Frogs back here... Shelley E. I see Dr Kenneth Kippels in Dallas: 972-701-9696. He not only HAS FM and CFIDS, he is compassionate, works the SHINE protocol, and sources information to me, to share with my support group. The only way, we are going to get doctors to start facing FM as a real disabling disease, is to teach them ourselves. I have passed several books to my own physicians so they can learn... if they are willing. Y'all, do NOT keep silent. For in silence, we are ignored. Speak up! Speak Out! Join a support group so you are heard!

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