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Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: 17 hours ago | Replies (7067)

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@faithwalker007

THINGS TO DO AND/OR REMEMBER AT A PAIN MANAGEMENT APPT (NOT a mental health appointment)

I suggest educating everyone around you:
1: Print off the 2016 CDC Opioid Guidelines
2. Print off the 2018-9? CDC Warning Regarding the Misapplication of the CDC Opioid Guidelines with Chronic Pain Patients
3. Make and Print a list of your disease states and past treatments for pain and current treatments
4. Define for you what would be an acceptable goal of control for you. I.E 50-70% - for me it is 50% and I’ve reached 40% with my DRG SCS and pain management which includes various non-controls and controls including opioids.
5. Show everyone including family and providers how, when, and why your physical body, mental capacity, social abilities, and family life is dependent on pain management of which opioids is part of to lead a quality life.
6. Print off the doctor’s HIPPOCRATIC OATH.
7. Print of your local, State, and federal legislators contact information and the DEA, your State Board of Pharmacy, State Medical Board, and every major newspaper and television station in the area.
8. A journal to take notes on everything that happens in the appointment and take notes while it is occurring. Note everything from the front desk reactions, to the med assistant’s and nurse’s behavior, to the doctor’s reactions and behavior. If you want take a recorder and ask for permission and record the appointment.
8. Caution: do not threaten, accuse, insinuate, assume, pretend, or share your feelings (unless asked) about anything. Tell them the TRUTH objectively and quantitatively, in other words, in terms they can measure, test, affirm, and value. If they want objective or descriptive values, they will ask. At that time, be ready for them and be succinct, clear, and understandable. I.E. anxiety, depression, fear, suicidal tendencies, etc.
9. Stay in control of the appointment. Remember, this is your care not the doctor’s. He or she is there to assist you and help you, not the other way around. If he can’t, it is his job to find someone who can, not make excuses about why she can’t or why healthcare has abandoned the chronic pain patient. If they do that, you need to remind them of their job gently.
10. Do not take abuse. Do not assume responsibility for your condition. Do NOT EVER SAY YOU’RE SORRY for anything you are not guilty for especially your pain.

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Replies to "THINGS TO DO AND/OR REMEMBER AT A PAIN MANAGEMENT APPT (NOT a mental health appointment) I..."

@faithwalker007
Great list Renee! Some really good things for people to keep in mind. The better organized someone is going in the better their appt. is likely to go for them.

@faithwalker007 Renee, I have had to be my own advocate since 1988 when I went through a long diagnosis period for systemic lupus. The one dr told me it was "all in your head"!
While your list is great, and is a wonderful resource for everyone, I must add on that not everyone will feel comfortable approaching their medical teams with facts and factual information, ready to self-advocate. Some people may want or need a cohort to stand by them and back them up. Enlist that person now, if possible! And be prepared for a less-than-positive response from your medical team. They aren't used to patients standing up to them and demanding good treatment. I've been there, done that.
Ginger

@faithwalker007

I can't get my new laptop to recognize Internet sources, so until I get that fixed I can't print online things. Our daughter and family are coming for Thanksgiving, and I hope her husband will be able to help me. He's an IT with the Coast Guard. I should be able to print wirelessly from my phone, and did it easily with my old pixel 2, but I haven't been able to get the printer to connect with my new LG. I guess I need to just play with it until I get it set up.

Thank you for your suggestions. I'm going to start putting together in a notebook the things you listed.

Are you doing better than you were a few days ago? I miss the days when life was on an even keel, before I climbed onto the roller coaster. You were in a ton of pain and were mostly in bed when you showed us the picture of your beautiful dog, if I remember correctly.

Jim

Very well said @faithwalker007 . It can also be of value to not say we feel a certain way rather we have observed such and such.

A little bit off subject but in regard to family members or friends or people in our lives that need to adjust their expectations of us, it can be beneficial to show them the list of your medical conditions and diseases and point out specifically which ones are painful in nature. If the people care about you and you care about your relationship with them, you could say that you felt you needed something from them and that was to understand your situation so that they can adjust their expectations and then show them the list. That way, you are almost put into the position to have to show them to make for the best relationship. You have not accused them of doing any thing wrong rather it is something you need from them and important to you because you value the relationship.

I had to do this with my daughters at separate times but was resentful because they put me in the position to have to validate myself. I spoke to this some time ago when one of my daughters said she had talked with the other and they had agreed they would take turns coming every other week or so to help me with things. When it never happened, the daughter who told me about it, alluded to the fact that the other had said that they wanted to be careful they did not enable me.

They knew about all my doctor appointments, Diagnostics, procedures, surgeries and illnesses for years so that should have been enough and that really hurt me and made me resentful.

It could be a very helpful thing to do what I did only before resentment builds.

Blessings, Sunnyflower