Some tips on how to talk to your pain doctor (long post)

[eagleweasel]

Hi everyone. I've been dealing with high levels of chronic pain for about 3 years now, and I've seen 7 doctors for pain evaluation and management. In reading through these forums, I realized that I have a mental list of things I make sure I go through with my doctors at a first visit, one I've built little by little in trying to make myself understood. I thought it might be helpful for others who are facing a first visit with a pain doctor, so I've tried to put my thoughts in some sort of order.

I know this is kinda long, but I really hope you find some helpful things in here.

1. It's really helpful to be very clear about the degree to which your pain interferes with life. The most useful questionnaire I was given asked me to list how many days a week pain interferes with: work, social life, daily activities (bathing, dressing, etc.), and relationships with family and friends.

2. Pain scales are very annoying--it's hard to collapse all the things that your pain is down into one number. So, I started doing some things with the scales that seemed to more fully express my pain.
--They often ask how much pain you currently are in. Also make sure they know your minimum pain levels, your maximum pain levels, and how often you hit these highs and lows.
--There are a bunch of different pain scales. Some make more sense to me than others. When I found one that really made sense, I started bringing it with me, and showing them how I scored on that one as well as whatever one they used. Google around and find the one that makes the most sense to you.

3. In addition to pain scales, a list of adjectives to describe your pain can be really helpful. Here's one I've used: http://www.chcr.brown.edu/pcoc/MCGILLPAINQUEST.PDF

4. Tell them everything you are trying for your pain--ice, heat, medications, acupuncture, physical therapy, etc. The broader your attack, the more seriously they seem to take you, so make sure you've tried a few things besides meds before you go.

5. Tell them all drugs, supplements, vitamins, and herbs you take--there are some potentially fatal interactions between some of these and medications that are commonly used for pain. Don't rely on your memory, bring a list.

6. Make a list of the activities that make your pain worse, and how often you have to engage in these activities, or how detrimental it has been to have to avoid these activities.

7. Don't limit your description just to your pain. Also tell them about any limits in your range of motion, weakness, tingling, numbness, changes in gait or sitting/lying/standing position.

Some other tips that seem to help:

1. See your doctor with as little medication in your system as possible. Take what you need to get through the appointment, but no more. This will get you the most accurate evaluation.

2. The examination is, unfortunately, likely to be painful. So bring whatever pain medications you have with you to take as soon as you leave!

3. Tell the doctor before they start the examination what kinds of poking and prodding are going to cause you the most pain. A good doctor will do what they can to limit the pain of the exam.

4. Take someone with you, if you can, and have them take notes. You need to focus on communicating, and there will probably be a lot of information flying around.

5. Don't be ashamed to lose it. This is not the time to play the strong, quiet type, or to skip over topics because you're afraid you might cry. Your doctor needs to know everything, and know just how bad it is.

6. Be explicit about what you're hoping for, in terms of pain reduction, and ask your doctor how realistic that is. They may not be able to give you an answer right away, but it's important to start that conversation. Unfortunately, complete relief may not be possible, and the sooner you get a sense of what is possible, the sooner you can start adapting and living a better life.

[auburnfan123]

good post. its best to be totally honest in the situation.

[Stevo1]

@eagleweasel Excellent Post!!!

[NewmanMD]

In states of chronic pain one must always consider whether it is consistent with the level of tissue damage. Pain can be caused or aggravated by mood states. Sleep is especially important as wel as ensuring you do not have sleep apnea.

Muscles relax in deep sleep allowing blood flow. To avoid full opiods I often find a combination of Tramadol 200mg xl is very good . It is a seratonin norepinephrine
inhibitor as well. Both seratonin and norepinephrine have descending spinal tracts which inhibit pain signals. Thus cymbalta as opposed to prozac.

Clonazepam 1-2 mg for sleep, flexeril at night to help spasm (Amrix is the best but is 14$ per pill-- in the muscle relaxer department). Trazadone at 50mg helps sleep and improves cellular norepinephrine and dopamine production.

Lidocaine patches to affected area when needed, some low dose testosterone may help if it is muscular in origin.

Gabapentin at 300mg at night as well can help. This sounds like slot but there must be synergy and multiple actions to help.

Your doctor must ensure you are sleeping at night and awake during the day.

I assume you have back pain that is chronic but hard to identify with certainty. Tramadol can be the basis both for mood and pain, then top it off.

Top down and bottom up. 50% of people who snore have apnea. If this is you and you get treatment and sleep, pain improves. Good luck

[boilermaker]

@eagleweasel OUTSTANDING really! If only all patients where this well prepared and educated before going to see their physician then too many good things would result like, lower insurance costs for one due to the reduction in wasted time on both the physicians and the patients side, also faster evaluations by the physicians which would result in happier patients and less problems!

[schumer]

I am a pain survivor. Been dealing with it and working like a one armed paper hanger for 23 years. I have been addicted to pert near all of the pain meds. I said enough is enough at methadone. Doc got me off it using subs. I only use that when I REALLY hurt so severely Tamadol 50mg & 5mg/325 every 8rs will not hold the pain. My doc did not give me the Tramadol. Got it originally from a dentist. I use it, get it online. Greatly strengthens the Hydro, BIG HELP.

I have got Degenerative Joint Disease, bone crumbles and creates floaters, DJD in the Thoracic & Lumbar spine and it is starting to spread to all my joints. My doc told me to go to physical therapy. I obeyed and got my trunk muscles ROCK HARD. It hurt so bad but I stuck with it. I am convinced, after obeying orders and listening to the people in the Doc's office that it's what you are doing besides pain med to stop the pain that largely influences the DOC.

In 23 years I have watched the Docs go from no hesitation to write narcotics to many refuse if your leg is traumatically amputated. GUV is making it crazy. People on Medicaid selling their Scrips on the street is pretty much the reason why. I say that based upon reading more than posting and reading the provided media concerning this phenomena the posters provided.

I highly recommend getting in as good a shape as your pain permits. Muscles support the joints that are usually the sources of allot of pain. Worked for me & my doc trusts me. Always asks me if my meds are working, do I need anything. I cannot blame doctors for covering their asses. It is a tough place to be in for us patients and the docs cause of people who abused it. Sad but true.

Talk to your doc about what you can do besides Narcotics to relieve the pain. Demonstrate your willingness to co-operate and work hard. Docs are eyeballs peeled looking for drug seeking behavior in any & all narcotic prescribed patients. LE is watching, counting and asking for justification for every single pill your doc scripts. I am not being critical of anything or anyone. Just what I have learned dealing with the problems I have to live with and the many people I come into contact at the hospital and on forrums like this one.

When I look at the XRAYS I know the day will come when I have no choice but be on serious pain med. Till then I'll tough it out and put up with as much pain as possible and religiously do strengthening & stretching exercises.

Just be honest. Make a concerted effort to loose weight, eat right exercise and show up with pills left over in your script bottle every time you go see your DOC. I empathize with those unable to do any of what I have suggested. This is what I was fortunate to be able to do. Take care folks!! Please to meet you all!!

PEACE EVERYONE!!!

[NewmanMD]

Hi Schumer,

Consider testosterone cypionate 200mg/cc. Use 1cc IM q week for 4 weeks, then go to 1-1.5 cc every other week. It may help with the muscles around those spineever stronger. It will decrease the inflammation and will not be worse for you than the pain.
Ask to have your testosterone checked. Get it to upper normal. see what happens. Caution if can't pee well, may need finasteride with it. Arimidex prevents it from converting to estrogen, a potential problem if you are heavy. Finally, watch the cholesterol.

But mainly consider relief. This should help. Good luck

[eagleweasel]

Thanks for posting schumer--that's a lot of good info in there. I hope I'm as tough as you 20 years from now...got only 3 years of this crap under my belt, and can't imagine getting to 23. You rock.

[gideongillmore]

I agree completely. Be willing to do whatever you can to help your pain, besides narcotics. I've had chronic pain for 7 years and 6 weeks ago finally had a spinal fusion at L5-S1, my leg pain had me bed ridden, at the age of 29. I know I will have to go back to pain management at some point, but I'm trying now (even though I'm still recouping from surgery) to wean down off pain meds. I'm sick and tired of being in pain, but I'm also tired of needing pain meds too. I'm going to work my butt off (literally!) in PT and get in as great of shape as possible in hopes of helping my pain. I've got 4 screws and 2 metal rods in my back for the rest of my life, but I'm determined to get as well as possible. Best of luck to you all!

[refpoc1]

i know for me it seemed i always want to minimize my pain when seeing the Doctor but get me home i am screaming in pain,, i will blame it on my passive agressive issue,, but what also helped me was to see the Doctor early in morning when my pain was at its worse then later in afternoon

[Gammachick]

I found this thread very helpful. Thanks for the wonderful post.

[akl63]

Just to add. Quality of life is affected. Can't do everyday things, get outta bed and dress yourself normally, take a shower, do laundry, stairs, dishes, walking distances.

They like to here you aren't functioning like a normal human being.
And don't hold back, if you're upset show it. Anxious, let them know its constantly on your mind. I acted tough way to many times and said the exact same thing as other times, and was treated different. Work yourself up into a frenzy if you need to be able to show emotion. It makes a difference, as the OP said.

[chera]

This was a very good post
The pain doc I see upon arrival has all patients complete an evaluation via computer each and every visit that actually addresses most of the things you mentioned ( pain affecting various activities, a variety of pain scale related requestions etc). These kinds of things are extremely important proofs for them to have on record, not to mention how helpful they can be to your treatment plan. The past few visits, I've noticed we have been given a couple new pages of questions to answer that relate to how pain effects our mental health/anxiety levels and a final page assessing if our current medications are working for us. One question asked if we found ourselves counting how many pills we had left throughout the month and another asked if we found ourselves running out of medication early. At first, I thought they might just be asking this to see if we were abusing our meds. But, the doc and I had a geat discussion in which she told me that alot of people don't feel comfortable just coming out and asking for their dosages to be increased, but through analyzing the answers to our questions they could tell when and if we needed it.

[Pain]

Great Post....

[Pvcpipe]

Really solid post.

I think pain docs get tired of hearing "10 out of 10" on the pain scale. A 10/10 is like a compound fracture with the bone sticking out and breeze blowing on it.

Trying legit physical therapy is a legit prerequisite these days prior to narcotic use.

[Buno]

Great post - I am seriously going to print this one out. Hubby and I are going to have to talk to a new doc here soon so we want to make sure that we are covering all of our bases because he's doing a lot more to be proactive than just popping pain meds. Thanks once again!

[chell55]

Really solid post.

I think pain docs get tired of hearing "10 out of 10" on the pain scale. A 10/10 is like a compound fracture with the bone sticking out and breeze blowing on it.

Trying legit physical therapy is a legit prerequisite these days prior to narcotic use.

When I went to a neurologist for my back pain one time and was asked to rate my pain 1 to 10 I said to him that that was difficult for me because even though I was in a lot of pain, when I thought about a 10 I thought about that man that had to amputate his own arm when it got stuck between two rocks. The doctor started laughing and said you have to remember that the pain scale is about your pain. What is the worst you have felt. He said some people have not had much pain so when they do start to have severe pain it is a 10 to them. That really helped me. I realize now when I fill those out it is about the worst pain for me not someone else.

[refpoc1]

oh, ya, the big 10, i told my Dr if i hit the big ten they will know it, no need to tell them, because all i can do is moan, groan, , it happend a few times but i am not really mobil or able to move myself, it would be fearful to see me walking in Drs office having the big 10,

[billyboy1965]

The question is so subjective. I rate the pain of a Novocaine needle a 10. On a scale of 1 to 10, how hungry are you? On a scale of 1 to 10, how bad do you need to urinate? On a scale of 1 to 10, how tired are you? On a scale of 1 to 10, how drunk are you? On a scale of 1 to 10, how intelligent are you? On a scale of 1 to 10, how happy are you? On a scale of 1 to 10, how depressed are you? On a scale of 1 to 10, how hungover are you? On a scale of 1 to 10, how horny are you?

A "10" to me could be a "4" to you and a "6" for the national average. Everybody has his own tolerance. And that's how I answer the question.

[53chevy]

yes the pain scale is subjective to the individual. i cut off a toe with a circlular saw once so i use that as my 10 . but then chronic pain , becuase of familaraity to the pain , may not seem like a 10 when it is really getting pretty close just because we get used to familiar pain. acute pain is unexpected and our bodies percieve it as being worse.
dr. usually want to get you down to to 2-3 on the scale but yet with chronic pain you may hover around 4-5 and never feel like you go much one way or the other most of the time .
acute pain may spike to a 8 super fast but then slowly go away with proper treatment . chronic pain may climb to 7-8 and stay for long enough for it to become a 5-6 . so the point is never be afraid to just tell the dr. what you think it is to you. but remember if you always say it's aten , he's gonna stop beliving that fast. try to be truthfull going both ways .