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  • Losing My Doctor

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    Old 06-04-2013, 09:52 PM   #1
    Bjorie
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    Losing My Doctor

    I have limb girdle type 2a and live with chronic pain every single minute of every single day. I was diagnosed with this muscular dystrophy disease 24yrs ago. My doctor that I've been seeing for 9yrs is leaving and I am so worried about seeing a new doctor. We had a great pain management plan using 5-325mg Percocet 4x a day. I've been doing this for 7+ years. The very first thing the new doctor I saw yesterday wanted to do was cut down the Percocet and wants to "experiment" with other medications. I just want the same pain management plan that has worked for me for a long time. Should I tell this new doctor the way I want to keep things?

     
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    Old 06-05-2013, 12:59 PM   #2
    gmak
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    Talking Re: Losing My Doctor

    Quote:
    Originally Posted by Bjorie View Post
    I have limb girdle type 2a and live with chronic pain every single minute of every single day. I was diagnosed with this muscular dystrophy disease 24yrs ago. My doctor that I've been seeing for 9yrs is leaving and I am so worried about seeing a new doctor. We had a great pain management plan using 5-325mg Percocet 4x a day. I've been doing this for 7+ years. The very first thing the new doctor I saw yesterday wanted to do was cut down the Percocet and wants to "experiment" with other medications. I just want the same pain management plan that has worked for me for a long time. Should I tell this new doctor the way I want to keep things?
    Dear bjorie, It is very hard to lose a pain dr that you have a working relationship with. I cant think of a time in my chronic pain course or journey that upset me more than when my long time NS retired or my pm dr left to be a rehab hospitalist but thank God he changed his mind & does see a few pain patients including myself. I did, however, have to go to a new pm/anes dr in the fall of 2012. He did not want to prescribe medicine exactly like my old dr but, of course, developed a treatment plan based on his expertise & opinion. I know when the old plan worked its hard but, percocet is considered a short acting narcotic that last 4-6 hours which can result in something called " chasing the pain" which means when the sa med level drops in your bloodstream the pain returns & so take a pill & basically this keeps going on all day & the level of pain relief goes up & down resulting in always waiting for a pill to take affect. You said that you have constant 24/7 chronic pain & there are long acting medications that are taken every 8, 12 or 24 hours or patches changed every few days that keep the level of analgesic steady for hours in the bloodstream resulting usually in a higher level of functioning for a chronic pain patient like me. Generally, or in my case a breakthrough medicine, a short acting medicine is prescribed also for the rare occasions that the pain escalates even while the long acting med is "on board" in the body, these are prescribed to take 1 or 2 times a day usually but some drs prescribe them more often. Also, there are certain medications that are considered adjunct therapy which means that they assist in lowering pain levels but are non narcotic. Examples i have been prescribed over the years are neurontin or gabapentin, lyrica or pregabalin, cymbalta, lexapro & there are others as well.
    Each pain mgmt dr has the responsibility of managing pain & finding the "right working" combo can take time & i have found it is by trial & error for the most part. My job was not to tell him, the PM dr, what to
    prescribe but to report back to the dr the effectiveness or ineffectiveness, side effects associated with any medicine, that were not tolerable or that the dr may think denoted an allergy. It is a process & from my experience the answer to your question would be a no, if i were you i would not tell him what to prescribe. The pm dr uses many other modalities to try to manage pain like PT, TENS, aquatherapy, injections, trigger point & epidural steroid injections, & i feel like my job is to go in open minded because my old dr is gone, in the past, & this is how pain management works is to let the new dr try what his
    treatment plan is for me because he is the manager now not myself. I hope that everything works out for
    you & you find relief. Pain mgmt is not bad imho, it is just different than the old way i was used to where
    i said "i hurt" & the dr said "take this", that way has passed away for me.

     
    Old 06-05-2013, 02:52 PM   #3
    Lotty667
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    Re: Losing My Doctor

    One of the things that we as long time PM patients have to understand is that in this day and age, doctors are having to justify (or be able to justify) every narcotic they write to law enforcement. As our older doctors retire we are getting a crop of doctors who have been trained differently and we have to be able to adjust.

    My feeling is that if my pain is so bad that I NEED a narcotic pain reliever then I should be willing to trying anything to either not need as much or hopefully not need them at all.

    There are some wonderful doctors out there, we just have to give them a chance.

     
    Old 06-05-2013, 07:50 PM   #4
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    Re: Losing My Doctor

    Thank you so much for your insight. I think what scares me the most is going through all the different meds again. I have been going through this since 1989. I have listened, tried, and tried again many, many different doctors, meds etc. It was a huge relief to finally find a system that worked for me. I don't know if I have the strength to be the experiment anymore. But, I will approach this with a better attitude. Thanks again.

     
    Old 06-05-2013, 08:21 PM   #5
    gmak
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    Re: Losing My Doctor

    Quote:
    Originally Posted by Bjorie View Post
    Thank you so much for your insight. I think what scares me the most is going through all the different meds again. I have been going through this since 1989. I have listened, tried, and tried again many, many different doctors, meds etc. It was a huge relief to finally find a system that worked for me. I don't know if I have the strength to be the experiment anymore. But, I will approach this with a better attitude. Thanks again.


    Hi bjorie, I think if the alternative is pain we can become more agreeable than we think to new drs suggestions, or I did & I actually lowered my daily opioid intake! Your new dr may be open to looking at a list of medicines that you have tried in the past & how they worked, he may appreciate it but i had to be open minded & try his suggestions, actually i had to follow them. I discovered after 12 years with the same dr & starting over @ a pm/anes that there were new medicines for pain & other adjunct meds that i had not tried & other modalities too. I did have to re- try a medicine that i stopped before because of blurry vision, lyrica & the visual difficulties turned out to be early glaucoma & the lyrica works tremendously, i still take it now.

     
    Old 06-09-2013, 11:02 AM   #6
    Moldova
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    Re: Losing My Doctor

    Quote:
    Originally Posted by Bjorie View Post
    I have limb girdle type 2a and live with chronic pain every single minute of every single day. I was diagnosed with this muscular dystrophy disease 24yrs ago. My doctor that I've been seeing for 9yrs is leaving and I am so worried about seeing a new doctor. We had a great pain management plan using 5-325mg Percocet 4x a day. I've been doing this for 7+ years. The very first thing the new doctor I saw yesterday wanted to do was cut down the Percocet and wants to "experiment" with other medications. I just want the same pain management plan that has worked for me for a long time. Should I tell this new doctor the way I want to keep things?
    Hello to you dear,
    oh, I can only imagine how hard this on you and how scary this is. I travel to see my PM DR every month (law requires) and it takes me 2 hours each way, but it worth to me!! The thought of loosing him for some reason makes me fear my future.
    Of course is so important to have mutual respect and understanding and believe in your DR. I don't know who is your new DR but he may be as good as your old one if not better.
    Why I think so? Remember, this is just my opinion, I am not a DR, just base my opinion on my own experience.
    The fact that you for 7 years on same dose and same medication makes me wonder how is it helping you still? Usually our bodies build tolerance pretty fast, depends on a person, but most of the times doses get changed and medications get changed pretty often.

    I think your new Dr wants to try something new. You said you experiencing pain every single moment of the day, this means to me your dose/med is not working anymore. Good doctors who hear our problems well, try to find something better to avoid pain the best they can. They don't keep us for so many years on same meds and doses if we still in pain. My PM always says: if you in pain after I prescribed you this meds, it means I failed you.
    So to me personally, if your new Dr wants to change something which most likely is not working for you anymore, it means he cares and wants to relieve your pain, tries to give you better quality of life.

    Don't be negative until you learn more about his professionalism. And another thing, you are a new patient to him, he doesnt know you well. You know what is going on with drugs and people who abuse them nowadays, right? I am sure most of us, who need them for real pain, are good smart people, but b/c of bad ones they have to be careful. So give him some time to know you better and I am sure you will be in a good hands, you will see...
    Good luck to you

    Moldova

     
    Old 06-09-2013, 02:07 PM   #7
    Bjorie
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    Re: Losing My Doctor

    Thanks to you Moldova for your advice. I never looked at the other view of maybe my old Dr. wasn't really addressing my problems. I don't see a PM Dr. I see an internist who I don't think is very educated in my specific disease. So my plan is, the next Dr appointment I have I'm going to show him all my medical info from the MDA and physically show him how I walk with and without my canes. He only saw me sitting in my wheelchair, never asked about any strength tests etc. So I'll show him. I'm also going to list all the medications I've had since 1989. I'm very will versed in my disease and will teach him if it's necessary. My old Dr knew quite a bit about Limb Girdle so that helped. But if this Dr and I are to have a good DR/patient relationship I need to know that he's familiar with my disease. I see an MDA Dr once every couple of years, but my disease is a genetic defect. There is no medication to help, just to help with the pain and what I can do to improve my quality of life. My fear with this new Dr was his prescribing Venlafaxine 37.5mg. He said it would help me sleep better at night which should then help with pain. I came home looked it up on the internet (I always do) and it's for panic disorder, severe anxiety, depression. I called my old Dr's nurse, she looked up the new Dr's notes. He stated I showed anxiety which I was unable to control. That statement about my personality is so off base, I got angry. I googled Vanlafaxine and pain and came up with the fact Dr's do use it to treat nerve pain, like Fibromyalgia etc. I am very, very, against depression medications and will not take this one. So when I see him again, in about three weeks, I will have to tell him that also. I'll figure this out or find a Dr more versed in my disease. Thanks to all of you for your insight. I really appreciate it.

     
    Old 06-10-2013, 09:20 AM   #8
    Moldova
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    Re: Losing My Doctor

    I'll tell you something very important. I have very honest and good relationships with my Internist; he is a very well known Dr over here, has his office and a Director of Internal medicine at the teaching Hospital.
    When I asked him if instead me going to NYC to see my PM, very hard for me and costly, can he Rx me my pain medication.
    He said he can Rx them to me without a problem, but he has absolutely no training in Pain mgmt and doesn't know what Pain Mgmt Drs know. He didn't feel fair to just prescribe, because Internists do not have special training which is a must to treat chronic pain patients.

    I don't like the fact they marked you as a nervous patient, it may affect your new doctor's first impression of you. But try to stay calm no matter how upset you are. By being nervous, show them your anxiety and anger will not bring you in a good place. No matter where you are this is not a good thing, but in pain mgmt office or simple your DR office this is definitely no-no. Believe me, they know who is in pain and who is very sick and who is faking so no need to prove them you are in pain and this is why you so upset. It can only toughens your choices of getting good relationships with your Dr.
    Another thing, if your Dr prescribes you medicine, always discuss with him/her what this is for. I never refill any prescriptions before I go on Internet and do my own research. Often I would call him back saying I don't go on this medication because... and tell your reasons.
    I hope everything will work good for you and you will find the right answers for yourself.

    Moldova

     
    Old 06-10-2013, 09:36 PM   #9
    Bjorie
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    Smile Re: Losing My Doctor

    Moldova - Your words help me more than you know. Today I made an appointment with my MDA Dr. I see him on Monday. I want to talk to him about all these things that are happening. I will get his advice since he is the specialist regarding my disease and then I will see the new Dr again with more knowledge. In my opinion knowledge is king. I see the new DR July 1st. I'll write again after these appointments. Thank you

     
    Old 07-01-2013, 09:35 PM   #10
    Bjorie
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    Re: Losing My Doctor

    Well I have learned so much since my last post. I saw the MDA doctor July 17. I was informed I have LGMD2I not 2A as I always thought. This just tells me I have a greater risk of breathing problems and heart problems. So we are being proactive and I see a pulmonary doctor and a cardiologist soon. I also saw my new doctor again today and had a great visit with him. I informed him I wouldn't take the Venaflexine (?) and really just wanted to continue my pain management plan that had worked for me for so long. I printed out and gave him lots of LGMD2I information, all the doctors I'm going to be seeing, got out of my wheelchair to show him how I physically do things and he was very thankful for all the information. He has agreed to the same pain management plan I've been doing for so long. Now I have high hopes that I can build a good doctor/patient relationship with him. He is willing to listen to me and thanked me for all the information. I told him my belief knowledge is power is he agrees fully. Whew!!! Lots of stress gone. Interesting about the LGMD2I thing.

     
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    Old 07-02-2013, 01:35 PM   #11
    gmak
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    Re: Losing My Doctor

    DeDear bjorie, I can hear your "Whew!" all the way to Texas! Thank God that provision has been made for a new caring, expert dr to take care of you! I really am so happy for you! The stress of being hurt or sick is enough without worrying about having no dr to take care of you &cause more pain. I dont know much about limb girdle2a or the other but i will read up! Truly so glad & hope that this treatment plan & dr help you even more than before.

    Last edited by gmak; 07-02-2013 at 01:38 PM.

     
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