Friday, October 12, 2012

No More Rheumatology?

I had my twice annual doctor appointment this past week. My last visit in May didn't go so well. I was hurting and needy and goodness me if some doctors aren't just like a man looking for a one night stand, they don't want you in the problem phase! I felt judged and misunderstood and diminished and not listened to. So I left in a huff and declared I was going to find another doctor which I have not done, no not at all. Haven't even started looking, it's just so overwhelming. I rationalized since my Fibro is pretty well managed, and a new doctor wouldn't be able to do much else for me, I could skip out on practicing what I preach. Not very noble but at least I'm honest about it. Well my mood as of late has been pretty grouchy and I was worried I would wake up the morning of the appointment in hell-woman mode and spew it all over my doctor. After the last appointment it became very obvious negative emotions are a massive hindrance to my communication with her. But I woke up and didn't hate the world and went in with a calm and open mind. I wasn't going to diminish my reality, but I wasn't going to react to it in front of her either.

This time it went well, but I wasn't asking for anything, just routine maintenance. It was probably the most normal doctor appointment I've had since I got sick in 2005, matter of fact. So I came out with it and asked her point blank why I have been hearing from quite a few people that Mayo Clinic in Arizona does not treat Fibromyalgia patients anymore. She got "that look" on her face. Like she knew but couldn't say. She explained it's not that they wouldn't treat a patient who has Fibromyalgia in the primary care department as a primary care doctor, but Rheumatologists weren't seeing Fibromyalgia patients anymore as a specialty. Now this is one of my worst fears come to life, that Rheumatology as a practice would kick Fibromyalgia to the curb since more and more research is confirming Fibromyalgia is neurological and not a rheumatic illness after all. So I asked if Neurology was picking us up? No, she all but laughed, they were not. Now I personally have never been to see a Rheumatologist but hear their consult can be quite necessary to confirm a diagnosis or support a disability claim. They are the specialty that has housed our illness for over 20 years and established the diagnostic criteria necessary to separate Fibromyalgia from a "wastebasket" diagnosis. Is it possible we, the misunderstood, underrepresented, overly-blamed, confused, exhausted, pain-racked Fibromyalgia patients of the world will be left with even less acceptance in the medical community? Less doctors with a responsibility to help us? No specialty to claim a field of study or channel of research?

Holy Mary Mother of God I had to get my rosary out and run a few decades! This was not good news, not at all. We can't take less, we need far more! How are people going to survive this illness in the changing world of healthcare and insurance and medicare? So many are hardly surviving it now. We don't have any give to spare! How do you make a school of medicine claim an illness? Is there a process, a petition? Are people already doing this? So I came home full of questions with no answers and a heavy sadness in my heart. This problem seems insurmountable, how to get adequate medical care and social services to Fibromyalgia patients. So many people have this illness but because of the stigma of it not being real, since it's a new variant to modern medicine, nobody wants to admit to it or talk about it. How many times can someone tell us our illness is our choice or all in our heads or because we are depressed or drug seekers before we just shut our mouths and go about our business, swallowing the pain of a thousand swords? For so many it doesn't take long. We have a problem friends, and I don't have any answers. Yet. But at least I now know why Mayo will no longer treat Fibro.

Thanks for joining,
Leah

18 comments:

  1. To be perfectly honest, I have never heard of Mayo helping someone with Fibro in our local center (Rochester, MN). I think that a GP who is open minded, knowledgeable and willing is by far more important than any specialist at this point. I saw a Rheumatologist a few years ago and while he did diagnose me, he didn't help me get better, in fact he forced medications on me that I had already gone through. It was a worthless ordeal in my opinin.

    I am praying and praying that neurologists pick us up here shortly. They are the key to this as many neurologists also study sleep behaviors and that is vital to us.

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  2. This is very frustrating news. I already feel like my rheumatologist is becoming less and less helpful but hearing about the Mayo Clinic has me even more uneasy. I work a full-time job and when I'm off I don't have the energy to look for another doctor who would be a little more understanding... I've contemplated looking elsewhere but fearful that I'd end up in the same situation.

    I wish there was an easier understanding of this diseas. We'd all feel better faster... that's for sure!

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  3. Do you know if this is just limited to the mayo clinic in Arizona or all mayo clinics?

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  4. I'll have to call my rheumatologist and see if they are still working with FM patients. I only see them 1x a year to update my meds and talk through what has changed since i'm not insured. I just can't afford a huge bill.

    Thanks for the update.

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  5. Wow, this is not a good step. I do hope that neurology will pick us up.

    Heather

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  6. I just recently went to my rhuematologist and he has said nothing about his field droping us. Without him I wouldn't be able to get up in the morning. I do have insurance and I see him every three months. If it makes you feel any better, I am still in pain, can't work, clean my house 2/2 in one day much less 3 days! I try to eat healthy foods and exercise, but what is one to do when walking 1/2 a block is exhausting? I was so happy to find this blog. I also have carpel tunnel with failed surgery and can't type for long periods so I use dragon speak. The drugs I have to take to just live make me tired, forgetful and basically useless. I wish there was a cure. I tried working for 4 years after my diagnosis but it became impossible since I have so little energy. stress pushed me over the edge. It's good to share with others who know what I am talking about.

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  7. Many GP's do treat Fibro even the Nurse Practioner at my doctors office treats Fibro, CFS and relative illinesses. But I quit seeing my Rhum when he patted me on the leg and said Oh you are going to be just fine and all the while I felt like I was dying with pain, the strongest meds my Rhum gave me was Ultram which is not great for major pain. So I opted for my General Practioner until he left the office for another job. He was great and was up to date on the information on Fibro not all doctors are. even the Nurse Pract were good. But the best for Fibro when it gets out of control is a Pain Managemant Doctor, someone who believes in Fibro and who will treat Fibro. Find your self a Pain Management Doctor. They are usually in all major cities and cost no more than Rhum and insurance will cover for PM but if you can find a good GP to treat you that is great also.

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  8. I have not seen a rhuematologist since my diagnosis a long time ago... thats how sucky my treatment has been. I do have chronic migraines as well and my neuro did prescribe me Lyrica as a preventative/FM treatment and that is the extent of my FM treatment to date. But I have wondered about this due to the fact FM is neurological. So when I got bounced to a new neurologist and thought hey maybe this dude might know a little about FM and could answer some questions I had regarding whether the vertigo I have is FM related or migraine associated vertigo... well lets just say if we expect treatment from neuros we should all run screaming into the streets because I knew more than he did about FM. So much for my idea of seeing on specialist. I suppose I ought to insist now on seeing a rhuematologist again. Nevertheless I think neuros should pick it up... it is in their arena, they are just intimidated by the lack of ability to treat it. But honestly... they haven't had any luck with my migraines either... maybe because they have never looked at the whole picture before. I know in Canada it is firmly in the hands of rhuematologists for sure.

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  9. I as diagnosed by a Rheumatologist but I felt like she felt then it was a 'non-diagnosis' and immediately discharged me back to my GP as there was 'nothing she could do for me'.

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  10. What a depressing situation.

    I was diagnosed with chronic myofascial pain syndrome in my 20's by a rheumatologist who said that the good news is that I wouldn't get any worse (he was wrong), and the bad news is that I wouldn't get any better, and, oh yeah- there is nothing he could do for me. That was the end of that experience.

    Now I see a doc who owns a pain/rehab clinic and he isn't much better. He is typically callous, takes calls during my appts, pushes drugs irresponsibly ("so what if you blow your kidneys or liver? just get a transplant!"- I'm not kidding), has no concept of quality of life, and seems to have less than a cursory knowledge of fibromyalgia (his colleague was the one who changed the diagnosis to fibromyalgia just before I turned 40).

    I don't know, any neurologist I have seen (9 so far), has no idea about fibromyalgia. Not sure that is a step forward.

    Sounds like we are being orphaned, and it makes me have a little panic to think about it....

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  11. I was diagnosed in 2004 by my rheumatologist and I experienced my share of being a guinea pig for all the latest medications. He only saw me every 6-9 months & I depended on my primary care provider for treatment. After becoming unable to perform my job in 2009 and ultimately losing it along with my healthcare, I could not afford the cost of a visit to my rheumatologist. I filed for disability and I finally saved the money needed to visit him only to be told he was no longer accepting fibro patients! but he could refer me to another group. So I contact this group of doctors, make an appt and then I am contacted a week later to be told they would not accept me as a patient since I did not have health insurance. I explained that I would be paying CASH, upfront and was still denied!!!! If not for my primary care physician & my psychiatrist I do not know what I would do-they are the only ones who seem to care!! It is a sad situation to be so alone with this horrible illness. I hope and wish for this nightmare to go away.

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  12. Hi,
    Will you please post a link to your Blog at The Fibromyalgia Community? Our members will appreciate it.
    Members include: Those living Fibro, Family and Friends, Experts, Support Groups.
    It's easy to do, just cut and paste the link and it automatically links back to your website. You can also add Articles, News, Photos and Videos if you like.
    Email me if you need any help or would like me to do it for you.
    Please feel free to share as often and as much as you like.
    The Fibromyalgia Community: http://www.vorts.com/fibromyalgia/
    I hope you consider sharing with us.
    Thank you,
    James Kaufman, Editor

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  13. I saw my Rheumy yesterday. She didn't mention anything about no longer seeing Fibro patients, so I asked. She gave me the same kind of look that I imagine Leah got. She took a long, deep breath and said the way they were handling it in their practice is that if you are already a patient then they will continue seeing you. But they were not seeing any NEW patients. But she said "The sad part is that neurologists havent picked up Fibro patients yet"

    Thanks for the blog Leah :)

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  14. My rheumy told me (since I don't like taking medications) that I don't have to take anything at all, its just a matter of how much pain I can tolerate. I asked her about whether I should see a neurologist, and she said the neurologist would probably just send me back to rheumatology. Sigh. We are really our own best physicians and advocates.

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  15. Finally, an issue that I am passionate about. I have looked for information of this caliber for the last several hours. Your site is greatly appreciated.

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  16. I live in southern CA and my internist referred me to a fm specialist a couple months ago. I haven't gone yet but I'm hoping to get some answers to some questions which my rheummy (I also have RA) didn't know. My biggest frustration right now is finding a counselor who is knowledgeable about chronic pain and the feelings of loss of my life dreams and being disabled.

    Thank you, Leah, for all you do. You are the voice of so many:-)
    Carol Scheer

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