Monday, June 22, 2009

Making Your Pain Doctor A Partner

I saw my Pain Management Doctor last week. It is time for a medication change due to my ever-increasing pain. I don't take medication changes lightly; the process can be particularly non-pleasant at times, depending on what you are doing with the change. This decision has been awhile coming, right alongside the pain that just keeps coming. My choices are few. I need a partner to help me with this.


Enter the kindest, most professional, (without being like a robot), empathetic, with an 'I want so much to know what you feel when you tell me of your pain' look in the eyes; Pain Management Doctor. It was time to get down to business as we began. We consistently have a nice time together; we talk well. You know 'those' kinds of doctors?? I was married to one, {gasp} and feel that he is such a kind, caring, thorough and empathetic doctor, whose patients just adore him. We'd get the most wonderful gifts at Christmastime; mmmm fresh Persimmon cookies from one lovely patient--every year like clockwork, I was faced with a huge tin of the best cookies I have ever tasted, and what is a girl supposed to do?? Admire them? Ahhh NO, I made great use of them!! Point is that doctors whom patients can talk to, and feel deeply heard by, is the key to the successful partnership of the doctor-patient relationship.


My doctor and I worked together to come up with what to do as far as what medication to change, and when we figured out which one, it was up to me in the end as what to do. This is the #1 most important attribute that we, as pain patients, simply must have with our doctors. The ability to work together on any part of our pain management care.


When you visit your pain management doctor, the feeling in the room is ultimately that of teamwork. Talk together. Figure out what you are trying to accomplish first and foremost during that visit. Remember, come prepared!! Help your doctor out a bit too. I brought my daily medication log, jotted down the monthly 'total' of how my pain had done over the time since I last saw my doctor, and that helped so much in my visit.


I spoke with my doctor about feeling that deep pain the most when I stand up, and that I felt as if I would benefit from 2 rods in my back, long enough to cover 12 levels, (all the Thoracic vertebrae), and he said, "You feel unstable in your spine?" Yes!! That was perfect! The word described exactly how I feel in my spine. And it's a great medical term to put down in my chart.


It is through our talking, getting to pinpoint exactly what we are there to do: Accomplish solving a problem. And for that, we all need ourselves and another person who will talk openly, honestly, seriously, and with an attitude of doing it together.


I could never do this myself. I know what to use, how to take it and how to titrate up or down. Nursing and years of pain have taught me this. Options for complete medication change are not many in the pain arena. Then there is the how to change it when things need to be altered. I knew the options available to me, and therefore, had been considering them days before the doctor visit. This made the decision simpler, faster, and more of a feeling of unity when my doctor totally agreed at what I chose to do.


My spine feels unstable. Great word doc! Today is one of those days when the pain is constant, unrelenting, deep, with neuropathy (**nerve pain), and severe muscle spasms. My back has gone through a real workout, and the paraspinal muselces, (**the muscles that run along your spine in the vertical position) are now extremely tight. When I stand up, my back says, "I don't want to be in this position." I am compacting my spine, yet laying down is not an option. I must SIT, and always against heat. Yes, yes, I've tried heat for 20 minutes and cold for 20. That was more effective when I was recovering from a surgery. But now I speak of what works for pain that lasts all day sometimes, with no relief, such as today has been. The cold and hot are long gone as I have found that heat is the only relief, modality-wise. (Modality--**A method of application or the employment of any therapeutic agent.)


In an office visit, we are all aware that time is, and always will be an issue. In any medical exchange. Yet there are time issues with those on the phone, your appointment to have taxes done, your haircut; oh it would be nice to have the person you are working with spend as much time with you as you'd choose; but we all know it just doesn't work that way!


Ergo, (wow I really don't like that word, but it is a good one!), why I make the most out of the time with my Pain Doc, by bringing daily notes and things that jog my memory. The relationship with your doctor needs to be one of openness, almost like one you'd have with a psychologist. The doctor needs to know everything you feel, every medication you are taking, if anything as in a fall or accident has happened, and just to cover everything that could have precluded the increasing pain. This needs to be talked about with precision and knowledge, as serious decisions are involved.


This is your partnership. This is your LIFE! Work on having a close, open, honest, respectful relationship with your Pain Management Doctor. Above all, work on your own side of this partnership, by keeping a pain journal, pain log, whatever works for you. Be kind to yourself, respect your doctor just as she/he respects you as a person, and I wish you the best of care for your pain.


It takes two!!



Gentle Hugs... <3

13 comments:

  1. Shauna,

    Having a partnership with one's doctor is absolutely imperative.

    If patients don't care for a paternalistic relationship where they literally show up, listen passively, receive "doctor's orders", and leave (often unhappy with those orders) then patients have to step up to the plate and do their part, whatever it may be.

    What that part is depends on the illness.

    You've done a great job outlining things the patient of a pain management specialist can do.

    Other patients may wish to track other symptoms of their illnesses in between appointments or track patterns of food reactions to keep their specialist appointments efficient in a similar manner.

    Key to all of this, of course, is finding doctors who believe in the partnership idea! Sadly, not all do.

    I totally agree with you, though, that patients have a responsibility to show up for appointments prepared and best able to make use of the time available (which we all know is limited in this era of "managed care"). The better the patient is prepared going into the appointment, the more productive it will be because no one knows the patient better than the patient!

    Doctors can't be magically expected to "solve"/treat every medical problem or even close without much-needed information from the patient.

    It is crucial for patients to provide the appropriate information and to communicate openly and honestly with their doctors.

    Again, it's a two-way street and patients need to have found a doctor with whom such candid conversation is possible.

    Finding a doctor who is ready to operate as a true partner is a gift. If one is fortunate enough to find such a gift, it's important to approach appointments as well-prepared as possible.

    Great post!

    Jeanne

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  2. Wow. I wish you the best. And, I agree, 'ergo' is a great word.

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  3. Jeanne...

    Thank you for leaving such a great comment. I see we agree on it all!!

    Because of our time with our illnesses, we have had a lot of experience. That's why I believe that other patients can benefit so much from our writing or answering a question; b/c we have dealt with it so long and we know the ins and outs and the changes over the years.

    Thank you Jeanne!!

    Gentle Hugs... <3

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  4. Hey there Mi,

    Just got back from 'your place'...left a message for you, I like your blog!

    Nice comment, thank you. And yes, ergo can always make an impact on/in a certain point we are writing about!! ;-)

    Gentle Hugs... <3

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  5. Shauna,

    Patients really can be enormously helpful to each other. We do have a great deal of experience and that can be put to use helping others find resources and coping skills.

    Jeanne

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  6. Shauna,

    It really breaks my heart to know that you experience so much pain. I know what living like that is like and I understand.

    Like you, I have a pain management doc that I adore and respect. I know that she will not be able to cure me, but knowing that she does care about making my quality of life better really does help in our partnership.

    Great post! I am sending you healing thoughts and hoping that your pain level improves rapidly. It is a process, but knowing that you have the tools to provide you with some relief really gives you power over the pain. Sometimes, that is the most powerful drug of all.

    Hugs,
    Debbie

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  7. really very good comments. and i agree that ergo is a really very good word you have use.

    Lululemon athletica

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  8. Hi !

    Here is a link to a horrible scandal in Sweden.

    http://swedish-scandaldoctors.webs.com/

    Regards Michael

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  9. Jeanne,

    You said it ALL in your comment!! That is the definite thing we all have in common...knowledge!! And personal experience with an illness (or a few), most times is greater than the actual help of a doctor in certain situations!!

    Gentle Hugs my friend...

    <3 xoxoxoxo

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  10. Shauna,
    I'm so sorry that you're in this much pain. You are so right about a working relationship with your doctor. My rheumatologist is excellent to work with and we are looking at changing my RA meds my next visit in July. I am a little intimidated about changing meds, but the Enbrel just isn't working as well as it has in the past.

    Take care
    Terry

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  11. Dear Debbie,

    Thank you for your sweet comment and sharing your own struggles with us. It is a HUGE blessing to have a PM doctor that listens and is a partner in your life of pain! I am very glad that you have that.

    Thanks also for the wonderful thoughts and I agree...we do have tools available to us and although pain daily sometimes has no words to describe it, having others that understand is also one of my biggest tools!!

    Gentle Hugs <3


















    c

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  12. SHAN,

    Thanks for your comment! Yep...ERGO IS a great word!! <3


    MICHAEL,

    I had a chance to look into the scandal you referred to. From what I saw, it goes very deep. My heart goes out to that woman. Thank you for your comment.

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  13. Terry....

    I hope that your med change goes well for you. These days no one needs to be in pain. Well, I mean that we have so many medications available to us to at least try out, see what works, and keep looking and trying when one doesn't work. It is time-consuming as you know and doesn't happen overnight!! But we hang in there and will work with our docs to find the best pain-relief that we can.

    Gentle Hugs!! <3

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Join in the conversation on chronic pain. Thanks for your input and point of view.