How to explain neck & back pain to nurse practitioner

I feel like my last appointment with my pain management doctor was a complete waste of time.
I'm sure most of you go to your p.m. every month. Im not sure how the appointments work with you all but with me, i see the nurse who relays what was said to the actual p.m. doctor. Then the doctor oks med changes and or just signs the monthly script (from his office, i only met him once at my first appointment).
Well this last month has been horrible for me. Pain has been through the roof every day. My neck (i have a fusion C 4-6) and now also have scoliosis. Plus my last xray showed herrinations in my lower spine.
I was hoping for a med change because I can't keep going through each day like this. Instead she prescribed a topical.
I obviously am not explaining myself correctly. I couldn't even try to talk after she said that she was going to do the topical because i was trying not to cry (but tears were flowing). At this point i knew if i tried to talk i couldn't because I was to upset and in pain.My blood pressure was super high that day (as i was in severe pain).
I now have to wait until next months appointment. And i have tried every homophobic thing made, done tens, do sports massage when i can afford it (my insurance doesn't cover).
How do i get through to her next month so that the doctor understands my pain ?
I don't want to piss anyone off by requesting a different nurse or the doctor only. I will if i have to but i would prefer not to make waves. It's so hard now a days to even get decent pain management care as it is.
Thank you in advance for any information/help you have for me.

Hi Avid1, I will try and think of something more useful to say tomorrow, today is crazy but I want to say I not only feel your pain I literally feel your pain. I resent the whole climate around pain medication these days (for those of us that need it legitimately) and I resent the way we are treated...less than patients in any other realm. I also find it difficult to communicate because I am anxious at the appt and have high BP from the time I leave for the appt. You deserve better and I am sorry you have to go through this.

I'm mostly on board with Seashell. Only difference is I only get to see my PM every 3 months, no NP, whom I don't want to waste time with.

I keep a notebook on my kitchen counter for daily notes about pain, activities that cause it. (I have specific food intolerances that trigger nasty reactions.) I keep track of reactions to medicines, including whether they work.

I suggest that you summarize in a couple of sentences what your one main concern is for the month. I get to have 2 since I only see the doc every 3 months. I've said it many times: doctors will only listen to the first complaint. This month my complaint is that my nighttime pain med ("long acting" oxycontin) isn't getting me through to morning, and it's taking me until the noon dose of hydrocodone kicks in before I can function. The morning oxy doesn't work more that being able to get a cup of coffee, and maybe get dressed.

(Optional blather)
I'd like to get another scan of some sort and get a script for a back brace. (My old brace from 10 years hasn't fit for years and my spouse borrowed it and lost it anyway.) I would like an injection, but they don't work any more, and my doc said last time to try a heating pad, which is nice for a little while, but I can't just sit around all day! My lower leg feels swollen, ankle and foot still hurt horribly, not better from 3rd surgery after break 3 years ago. The podiatrist seems to think the pain doc can inject some nerve is my spine to fix that. (Opinions?) The ankle causes me to limp, stress my knee, which stresses my hip. My shoulder and neck area ache abominably after any light work. My floating ribs are hurting today from raking leaves. The pain meds give me constipation. Nausea and belly pain. My neck and shoulder ache all the time, wondering if another joint is fusing itself. I'm totally exhausted all the time. My eyes keep losing focus, vision blurs. Is it my tumor in my head? Worse muscle spasms - is it the post-polio or the cervical break? (Not nearly the end, but if it bored you, then the doctor would certainly not listen, and I do have other doctors for some of these things.)

Alcie, I could not agree more. I also think it comes down to things they should hear for diagnostic purpose and/or things they should hear for treatment. I also think the PM dr's only treat things they can give an injection for and gloss over the rest.

Darla:
First . . I am not under the care of a pain management physician or pain clinic. I may not have a comparable experience of disheartening physician inattention as you (and others) write about.

Second . . . My health issues are complex and not amenable to improvement or betterment. My appointments rarely/never broach discussing options to find a “fix” or cure. Easing of distressing symptoms (nausea, pain, low blood pressure) is at the centerpiece of my medical care.

The 1/2 page to 1 page synopsis serves as a starting point for the appointment and, most importantly, serves as a guide throughout the appointment to keep physician-patient conversation focused on issues that are of Top Priority to me.

I identify 2-3 most concerning issues that I am experiencing currently. Top Prioroty concerns or issues.

I mention what I am doing on my own to ease the issues/concerns identified (example: holistic and over the counter medications and supplements; diet modifications; exercise, stretching regimens; mindfulness).

I explain how the presenting problem(s) impacts me in the course of a day.

There is a wonderful functional pain scale that is available on line that is helpful in translating to physicians and others how pain is life-altering. It is called the “Ability Scale.” It has 8 different daily activities (ex. Getting out of bed, climbing a flight of stairs) with a pictorial schematic where you then circle the degree of difficulty you experience in accomplishing each task. I complete this survey every 3 months. It serves as a helpful way of communicating how I am fairing in the moment as well as a providing a comparative historical history over time.

I will need to research where I first located the “Ability Scale” and report back as to where to find it on the internet.

I often will offer my own ideas and suggestions, based on research and known best practices, and my rationale for offering the idea or suggestion. Stretching to offer ideas on treatment may not be an option for everyone. I do have the benefit of a long-established relationship with most of my providers. Often I will paraphrase an idea by stating . . . “Are you open to considering ________ (fill in the blank)?

As I mentioned in the earlier post above . . .

I give one copy of the 1/2 page to 1 page narrative to the physician at the start of the appointment as he/she enters the door. They have come to expect that I will come prepared with an agenda and appreciate the organization it provides to our conversation. The office staff scans the page into my electronic medical record. They become part of my complete medical record.

I keep a second copy for myself and use it to refer to during the appointment. I take notes to what is said and discussed. I keep a copy of each in a 3 ring binder.

I use this technique with each of my providers. A typed 1 page narrative that bullet points my 2-3 most pressing or primary concerns. My providers are Palliative Care, endocrinology, and rheumatology. Palliative Care provides benefit of ensuring communication between my providers. I recognize that communication lapses between different specialists is a real obstacle for most patients.

Creating a thoughtful agenda really makes a physician appointment far less stressful. It also gives you, as the patient, a way to make sure that the appointment serves your needs (and not the agenda of the physician). Most importantly, creating a thoughtful agenda helps even the power balance between you, as the patient, and the attending physician. It can be quite empowering.

Good luck,
Karen

Thanks, Seashell...I never heard of that site. I will definitely check it out. Thanks for all the information!
--OK, I did check it out. So helpful!! Great site, too. Thank you! Just to note for anybody...they have an arthritis version as well. Great tools!

Post Edited (Darla) : 11/28/2018 5:09:40 AM (GMT-7)

Thank you all for your replies. I had another horrible month of back pain .

But two updates. I saw my primary (they called me in for a check up). I told him how I've been miserable the last 2 months (above and beyond the normal daily pain). He ordered an MRI. I'm just waiting for my insurance to approve but it's set up for this Friday. I have a feeling that something is not right. I don't know if my spine is curving more or the discs are bulging more, but something off. This is stop you in your tracks pain. Crying pain. Awful, everyday, horrible pain. So, i am grateful that my primary is so nice and did ok a MRI to see what's going on.

Now part 2. Today i went to my Pain Management. Luckily, i had a different nurse practitioner. Omg, what a difference. She read through my history first out loud, which was cool because you kinda don't know what they actually write down about you. I did add a couple of things but all in all was suprised at how much they actually had right.

I told her about the last 2 months & about the upcoming MRI. I Also told her that i am not leaving here without some sort of med change. Well, holy crap. She was completely different than the other NP there. She actually said she would have me take 2 of my break through pain meds instead of one per day. (Btw, i asked the other NP for this last month and she said no....wth??) So, hopefully this will help for this month.

I am just really suprised at what a different experience it was with the newer NP. Not just the med change but the whole visit. She just really seemed to care. I hope this month is better and i get some answers from a new MRI.
Again, thank you all for your replies. It was a lot of great information, some things that I hadn't thought of.

Avid:
I second Darla’s proclamation. “Isn’t it amazing how good it is to be heard?”

It can feel like a breath of fresh air when a physician/nurse actually adopts a passive position of LISTENING to what you have to say. Honoring and validating your narrative and your reality.

You live in your body and know it best.

It is equally uplifting that the nurse practitioner that you saw today was also agreeable to providing an additional dose of your daily breakthrough medication. I hope this additional dose brings you better pain relief and comfort.

When my pain is at its worst, pain itself becomes all consuming. Pain, as it’s own entity, overrides anything and everything else in my awareness. All I want . . . All I want is relief. So I can appreciate why the misery you have been feeling over the past two months was reaching a tipping point. Something needed to change.

I hope the MRI study goes well tomorrow and that the findings provide some helpful insights. Know that we are thinking of you.
Karen