Chronic Pain members - Welcome, please introduce yourself

@2muchpain hi Suzanne. If you are ok with it could you share your conditions?

@faithwalker007 and all. The NP’s at the pain clinic do all the prescribing and the doctor they report to performs all of the procedures. Would this be going above my NP’s head to her boss? Would that damage our relationship permanently and potentially cause her to retaliate in some way? She’s a great NP but I think the DEA stuff intimidates her. Please everyone please share your thoughts and thanks so much for listening!

You have no productive patient-provider relationship with her right now, Jen. I’m sorry to be so blunt but look at where you are right now as a patient and what she is doing as a provider.
1. She’s not listening to you.
2. She’s not treating or managing your pain.
3. You are being forthright and honest with your condition and have not done anything to warrant a decrease.
4. You are not exhibiting addictive behavior.
5. You are not breaking any laws.

You may like her, she may like you but THAT IS NOT A PATIENT-PROVIDER RELATIONSHIP, that is a friendship.

She may be afraid of the DEA, but that is NOT your issue, that is hers. She has avenues she can take to deal with that fear or harassment. YOU are not one of them. Denying your care or making you suffer because of it, IS MALPRACTICE. She is walking a very dangerous line.

You don’t need to be antagonistic, or rude to her. You merely need to ask her to please do her job. Either that, or find someone else who will.

@faithwalker007 Renee thank you for your frankness. I left a message at 8:30 am to schedule an emergency appt with her or increase my meds until I am helped by the neurologist she sent a referral to. She believes I need surgery now. She said if I don’t hear from him in a week or 2 to call her office and they will follow up. I did not receive a call back about talking to her (the nurse practitioner) so I will call again tomorrow. I printed out and underlined the pertinent points in the AMA 17 page letter you were kind enough to provide and hope to share that with her. My fear is that I may not be able to find another prescriber given the opioid paranoia. Then where will I be? Absolutely no pain meds and even a small amount is better than none. I admit that after my visit with her on Friday (I cried the whole time of the appt explaining because the pain I am in) my sister rescued me from a possible overdose, not of pain meds). She called at just the right moment and drove 45 min for a welfare check. I don’t remember any part of Friday when she got here or all of Saturday. Please share your wisdom to this response. I really need it. Help everyone!

From what I see you would get more relief from a shot of Jack Daniels than your “Pain Specialist’s” expertise. That’s a sad opinion any medical provider should want a license Pharmacist to have of them. All I see from your provider is fear and paranoia instead of intelligence and responsibility to do the one thing all medical providers INCLUDING PHARMACISTS vow to do and that is to serve the patient with all the knowledge and wisdom bestowed upon them and DO NO HARM.

Okay, now that I’ve vented for my friend, I’ll speak as a professional... lol

Right now, a great many providers in our Nation are losing sight of their oaths and their jobs as doctors, nurses, pharmacists, etc. Not because most of them don’t care or believe their patients deserve the Pain relief. They don’t even think their patients are addicts or close to becoming one. If you were to ask their honest opinion, most would firmly state that they think that the people under their care require the opioids at higher dosages to facilitate a better quality of life.

What almost all would say on the record? They are abiding by the CDC Opioid Guidelines. They are following the DEA regulations, Medicare constraints, Medicaid and insurance formularies to fall within their parameters of acceptable covered dosages.

Only legislators and folks who are ignorant, fearful, or biased against the use of any opioids for Chronic Pain much less acute pain or anything else at all would assume the result of its use will lead automatically to ADDICTION, SUBSTANCE ABUSE OR “USE” DISORDER, DEPENDENCE, OVERDOSE, SUICIDE, DEATH, or UNCONTROLLABLE EXPLOITATION.

The most important part of Chronic Pain MANAGEMENT WITH OPIOIDS is THE PATIENT-PROVIDER RELATIONSHIP.
Why? It’s simple really. I have a phrase that I live and worked by as a pharmacist especially with my CHRONIC PAIN PATIENTS ON OPIOIDS.

RULES WITHOUT RELATIONSHIPS LEAD TO REBELLION.

This lesson by Josh McDowell is the cornerstone to successful relationships and will keep both parties honest and trustworthy within them.

The DEA has made it is almost impossible for both sides of the Chronic Patient-Specialist Provider Relationship to trust one another by creating rules that are making them enemies or suspicious of the actions of the other.

How?

1. The CDC Opioid Guidelines are not applicable to Pain specialists or ANY specialist at all. They are written for PRIMARY CARE PROVIDERS ONLY, but the DEA is forcing all providers to adhere to them as if they are written for all medical healthcare in the USA - misapplying them.

2. The DEA is targeting the Chronic Pain population because this population is the only categorized, tracked, and verifiably and statistically monitored group of Prescription Opioid-users in America. By decreasing these numbers, the DEA and government can positively affect the War of Drugs and Opioids. Through this targeting, the Chronic Pain Patients are not getting the care they need or the relief they deserve and feel betrayed by the healthcare system of America which is supposed to “DO NO HARM.”

3. In the war in drugs, the government has the ability to control what can be dispensed by limiting the funding on Medicare, state Medicaid programs, and Insurances, the CDC, FDA, and any other programs needed to limit access to Opioids including the WHO.
For example, OxyContin is not paid by insurance, Medicaid, or Medicaid above 40mg Twice a day.
Percocet 10/325mg is only paid for up to four times a day as needed for breakthrough pain.
These dosages cannot be overridden even with prior authorization Petition. The v system put into place for the Elderly, abandoned, disabled, and informed is now betraying its own.

Ceiling limits such as these do not consider such issues as rare diseases with no treatments available, unique case circumstances or cure.

Indeed, many Pain patients have been removed, drastically lowered from their pain medications regardless of OPIOID TAPERING GUIDELINES, and are suffering unwarranted and against CDC, FDA, AMA, and medication recommendations and PROTOCOLS.

These thoughtless and dangerous practices among the CHRONIC PAIN COMMUNITY has led to an increase in unmanaged pain and suffering which has led to a spike in suicide. Whether by overdose or not, this spike by many in this community is seen as a preventable not reflection of the life. And they are angry and becoming bitter. They no longer TRUST the providers who give them “care.”

To help prevent these feelings from developing between you and your provider, these are some Actions you can take as a Chronic Pain Patient before your next appointment to your pain specialist:
1. Keep a daily log of Your Daily Pain Cycles, I.E. Pain levels upon rising, changes throughout the day, medications taken and why, spikes and troughs, flares and why if ac reason, etc weather, pressure, events of the day.
2. Collect these materials and have them at your fingertips if needed, The CDC Chronic Opioid Prescribing Guidelines, The AMA’s Letter to the CDC and FDA Regarding the Chronic Opioid Prescribing Guidelines, The Bill of Rights, The United States Constitution, The Geneva Convention, HIPPA, The Privacy Act of 1972, The RARE Disease Act of 2002, The American Disabilities Act, Older American Act and Elder Justice Act.
There are many more. You can look them up for your special circumstances. Do it. Advocate for yourself! No one will.
3. Speak to your provider in his or her language not yours. Your doctor stand medicaleze. You know peopleze. Talk to them on terms they understand.
They want to know your pain level, give it to them honestly, directly, not what you think or want it to be—not average! If it sucks, tell them an 8! If you’ve been close or at the ER, a 9 or 10. Stop sugar-coating. (The down fall with CRPS is that our pain is beyond the 10 scale so we have to try to adapt it to their 10 scale so they understand. A long talk with the provider is NECESSARY so you are on the same page about what your 8 and 9 is VS theirs.)
They want to know what you pain has been like over the last month—TELL THEM in terms they know. “I wake up on average at an 8 or 9, in tears but after I take meds, and about an hour, the level comes down to around a 6 or 7 so I can dress. Food is out but the Zolfran works until I take the next round and I’m at a solid 7 if I’m lucky and I can eat.”
See what I did there? I’m not complaining. “It’s awful, I cry all the time and the pain is terrible. You have to help me!” They can’t work with that. They need numbers. Data to manipulate and goals to target.
4. Set TWO goals for Pain management. A long term goal: a percentage of pain relief you believe to can realistically live with and obtain quality liberty and livelihood with your pain. This goal will not be reached tomorrow or easily but it Is important to set it. THINK ABOUT THIS HARD AND LONG. This is a changeable goal but should be a goal you place on a calendar and aim for so don’t change it too much unless you discuss why, when, and think about it long and hard.
Your short-term goals are simply to help you get through the hurdles and mountains of the journey. Use the goals frequently and for setbacks due to illness, injury, or family stressors. They are vital to your pain management!

I hope this helps.

Remember that providers are scared of the Opioid ENFORCEMENT AND ENVIRONMENT NOT YOU!

Start talking to each other about your fears or you will hate each other. They are not trying to hurt or abandon you.
They are trying to survive, just like you are.

@julie64
Hi Julie, welcome to Connect.

One way to find a specific topic here is to use the search window at the top. Using that I found a discussion that mentions Emgality several times. Here is the link to it: https://connect.mayoclinic.org/discussion/migraine-headache/?pg=1#comment-380952

I am mostly here to follow the Neuropathy Group and a couple others as well on Connect. It's good to find the place where people you have more in common with are interacting. I'm thinking you may be interested in following the Mayo Group called Brain and Nervous System, linked here: https://connect.mayoclinic.org/group/brain-and-nerve-diseases/?utm_campaign=search where you may find others who have had more involvement with encephalitis and meningitis.

I hope you are able to connect with others that also have experience with your conditions. Most folks here are warm and caring and very eager to help whenever possible. Your post here might have been missed by people because it happened to get placed into the middle of another ongoing conversation between a couple of members. One thing you may find useful is to scroll through the discussion titles in a group (like the Brain and Nervous System Group) and explore any that sound like they relate to topics you are interested in. Then read and/or post something there.

My best to you, Hank

Hi everyone, I was diagnosed with small fiber neuropathy. It all stated it vertigo that has since gone away and then one morning i developed cold feet as if I was standing on a block of ice. Then the electric like sensation, crawling, pins and needles from head to feet. had a ton of blood work done but everything checked out. I finally saw a Neurologist. He had skin biopsy done and diagnosed the small fiber neuropathy. I have tried a medications ,like gabapentine, cymbalta etc with no relief. I just had my 3rd treatment of intravenous lidocaine. 2 at 600mg and the 3rd at 800mg. i haven't gotten any relief. my symptom seem to get worse on the day of the treatments. Please does anyone has any lead or suggestions for me. I'll really appreciate anything right now. its been almost a year and I am tired.

Hi @femuchay, welcome to Mayo Clinic Connect. I recommend that you join the discussions in the neuropathy group
- Neuropathy https://connect.mayoclinic.org/group/neuropathy/

There are several discussions specific to small fiber neuropathy too.

@femuchay My heart goes out to you! I hope someone in our Forum can provide suggestions. For my neuropathy only hydrocodone works, which is hard to come by during this illogical opioid scare. Would you consider hydrocodone if you could find a dr to prescribe?

Absolutely!! Right now I’m I’ll try anything. Thanks so much.