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Communicating to PM Doc

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Chronic Pain
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Posted 3/3/2014 4:19 PM (GMT 0)
Hi all, I am new here but not new to CP. Lupus, fibro etc x 5 years (diagnosed that is). I am a member of other forums and can't believe I never found ya'll!

I need help communicating (articulating) my physical pain to docs. I have a decent rheumy I have used for about 1 year (I am in Alabama). But I feel like maybe I am in need of more in depth pain control/management. I don't want to make my rheumy upset and I am not quite sure how best to approach him.

Any ideas? I know my question seems stupid but I have not been successful finding someone that can truly help, you know?

Any and all input is greatly appreciated I am so frustrated
Posted 3/3/2014 5:05 PM (GMT 0)
Welcome to the forum, bam.

My rheumy actually sent me to a pain doc group. Talk with yours. He'll probably be happy with your decision. He might even give you a letter describing what he's been doing for you that would help the pain docs so they don't have to repeat things that haven't worked. Keep going to the rheumy though. He has more expertise in his area.

I would tell the pain docs just what you wrote, that you feel you need more depth to your pain management. These docs can usually do things rheumys don't do - spinal injections, for instance.

Write down a list of what is going on, what's working and not working. List all the medicines you've tried. Take with you any disks of imaging and reports you have. Get copies of what you thing is appropriate. They should be free if you are taking them to a doctor. I make copies so I have them for future, keep them in file folders.

Best wishes.
Posted 3/3/2014 10:54 PM (GMT 0)
I agree with Alcie, your RA doctor needs to know your pain meds are not working and you'd like to either try something to help or get a referral for pain management, my RA refers out. My RA doctor also said he would be willing to work with me on my meds if I can't get help from my pm doctor...so keep the dialogue open with your RA doctor and mention you need more help with pain control...don't be afraid to ask for his/her help...You can always posts in this forum as well...many well wishes and keep us posted how it goes...Make sure to make a note of this so you can remember it when you have your RA appointment.

However, if your RA doctor is not open to helping you, find a pain management clinic...
Posted 3/4/2014 1:46 PM (GMT 0)
Ahh, the magic question.

I think many of us battle with how to articulate our concerns to our docs. Being calm, prepared, honest and open about what works and what aggravates your condition is helpful. Also asking politely for help in conveying your need to address this.

Let us know how it goes.



M.
Posted 3/4/2014 3:14 PM (GMT 0)
Thanks so much! It helps knowing I have friends that are in the same boat, unfortunately.

We have tried multiple drugs. Currently on (spelling may not be the best!): Plaquinil, Temazepam (6mg each night), Percocet (10mg 2-3 x day---doesn't touch it), Xanax 0.25 as needed for anxiety, muscle tightness, etc but I take this maybe 2-3 x/week totAL (not much)

Also have had multiple neck (c spine) injections. My right arm is constantly numb, and has "needles" sensation. Numbness is 2-3 x/day and may last 10 min or up to 4-6 hours. Not related to anything (like its anytime not just when I sleep). Also have a large bony mass on top of my right foot with entire right leg swollen and foot swollen. In fact I can't wear any shoes but flip flops, Ugg boots, or lace up tennis shoes. Anything else and I am dying. Regardless of footwear I have shooting pain on bottom of my foot, and sometimes partially up my leg. Have been referred to ortho for this (ie not a bunion or arthritis). My Mom had neurofibrosarcoma in her right thigh at age 45 and I am a bit over that age and scared. I know it is so rare.

Heck I need to just print this and take this to the doc, I am calmer and better composed talking to ya'll than I am any of my docs lol!
Posted 3/4/2014 3:34 PM (GMT 0)
Welcome to the chronic pain forum. So glad you found us. I think writing every thing down is the way to go so that you don't forget something. There is nothing worse than getting home & then it hits, oh I forgot to tell him/her this or that, lol.

Just be honest with the dr about what is going on. Being very descriptive about your pain will help more than anything. Drs hear all the time oh my back or neck hurts, that tells them nothing. If its a deep burning pain then say so, or an aching type of pain. I think you see where I am coming from, lol. The best way with drs any time is to let them think its their idea to either refer you out to a pain mgt dr or to change up your meds.

Please let us know how your appt turns out.
Posted 3/4/2014 3:48 PM (GMT 0)
YES!! I started a document right after I wrote this and am adding your suggestions now!

I feel like I complain so much. I have worked since I was 14 and had a full career as a manager in a large health facility as well as 15+ years in medical equipment sales. Always been the picture of health, brought home the bacon and fried it up in the pan (if you're old you'll get that!)

The hallmark moment was after some major surgery I contracted MRSA and was septic. In the ICU and hospital for over a week. Had a huge "hole" that had to granulate in over a year, which seemed to trip the autoimmune cascade. Downhill from there. After 2 1/2 years of trying to deal with pain (adhesions in abdomen, lupus, fibro etc) I finally was referred to my rheumy who diagnosed me. I cried, with relief, I wasn't crazy after all!

Sorry guys, just so happy to find you!
Posted 3/4/2014 4:24 PM (GMT 0)
So often it does happen just as you said, its like a domino effect. I had a similiar situation, it started with getting my gallbladder removed which was no big deal. Six weeks later we are out of the country on vacation I get deathly sick end up having two more surgeries back to back. It was a domino effect from that time on & went on for what seemed like an eternity. It triggered an autoimmune cascade as you described. I told my gastro it was like my body attacking itself. That was something I hope to never experience again but the residuals from all of that have been just as devastating in so many ways.

It sounds like you have a decent rheummie & that is so important. You really need him in your corner that is for sure. It seems we see people having problems finding one that understands what pain is all about.

Take care.
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