Living with Neuropathy - Welcome to the group

@jimhd I don't know how any of have the strength to deal with all of this. I really don't. My heart breaks for you and all of us here, that we cannot even get the meds we need. To know that there is a med out there that really helps you at the right dosage, and that you have to fight to receive it is horrific. We really do need the law to change. Doctors take care of themselves first, in not breaking the law. And to think there is no real proof that opiods don't help neuropathy is horrific. I can't even deal with this. I am so sorry, Jim. LoriRenee1

I'm so sorry. I am a published author and I don't know how to dial it back. I'll try though.

Oh, LoriRenee. bless your heart. I love you. The issue is not the law. I wish it was. The CDC Guidelines are NOT law, they are the medical recommendations by what is considered or once was, the premier, unbiased authority in medicine and trending of diseased population for the United States. They are not supposed to be politically, enforcement, employment, or penalty-driven. That age is over.

The DEA has taken, with the approval (whether intention, unintentional, spoken, unspoken, written, unwritten, authorized, or unauthorized) of Congress and the President of the United States and the American Public, these guidelines and applied them AS LAW.

They are not merely threatening PROSECUTION for violation of GUIDELINES, they are actually destroying lives by ENFORCING THEM. These ACTS are illegal because GUIDELINES ARE NOT LAWS. These guidelines were not written by Congress, voted upon, passed, and/or signed into law by the President of the United States... the only person who can enact federal law without the express action of Congress.

I love our country but I'm suffering because of it.

@sunnyflower. No, the laser doesn't hurt. There's a wand attached to the machine and the PT uses the wand to go over the area of your body that needs it. It's slightly warm but not burning. Sometimes I don't even feel it. The PT wore dark glasses to protect their eyes. I'm always on my tummy when they laser my back so I don't need glasses. They basically laser me every time. I believe it helps. These machines are very expensive and not too many PT places have it. I know them bc they used to be my clients when I was working in a bank. I've been going there for over 10 years. They treated me for all kind of issues. Once I had a knee problem and an orthopedic doctor suggested surgery. I went there for therapy instead and they fixed it.

I have to be positive about this whole situation, some days I think it'll never get better and feel sorry for myself which is a bad thing. Pain can mess up one's mind. Thank you for your good wishes.

@sunnyflower
Sunny, we are grateful you found Connect also. You have been an absolute treasure! To me and dozens of others as well. Best to you always and always, Hank

Jim, I am so sorry to hear about this!

If possible, I think your therapist should advocate for you.

The magic language is this, are you having a better quality of life and more functionality on the morphine and if so, then you can describe at what doses you had better coverage of your pain. It's all about a quality of life issue and if the morphine is improving that for you. So keep those words in mind!

The CDC recommendation is that 90 MME (morphine milligram equivalent) per day is MAXIMUM dose doctors should prescribe.

I tried to copy and paste the PDF graph of what the equivalence are for different opiates but it did not turn out in a very user-friendly format here.

Actually this chart is so poor that I would recommend you doing a web search asking how many milligrams of morphine equals 90 morphine milligram equivalent or MMEs. I am not positive but sometimes it can be a one-on-one such as one milligram of morphine equals 1 morphine milligram equivalent (MME). Other opiates might be 1.5 mg May equal one morphine milligram equivalent.

I would also make a list of everything you have tried and hopefully it's a long list and neuroplasticity is included but if not don't worry I'm sure you have use many things including exercise, music, meditation, prayer, socializing, heat, ice and there must be many more things.

Most doctors do not want to take a risk with patients who are depressed or have suicidal ideation or attempts. I'm sure you can understand that but that is where your therapist could help. If you have been seeing your therapist regularly that is a plus for you as opposed to some people who don't show up for a lot of appointments.

Well Jim, these are just some brainstorming thoughts I have. I am not a licensed therapist or a licensed professional of any kind but I'm glad to help when I can and I have resources to go to when I recognize my limitations are exceeded in being able to help.

Please keep me posted and I hope this all works out in your favor because you deserve relief!

Take really good care of yourself and I wish you the warmest blessings ever! Your friend, Sunny flower. 🙏😊

Jim,
Be vigilant not to attack or condemn your provider and stay within your pain agreement. The guidelines are also directed toward Primary Care Providers, not Specialists, a fact that the CDC is working on at the moment. The AMA also just released a letter in support of the fact that physicians have abandoned treating Chronic Pain Patients. https://searchlf.ama-assn.org/undefined/documentDownload?uri=%2Funstructured%2Fbinary%2Fletter%2FLETTERS%2F2020-6-16-Letter-to-Dowell-re-Opioid-Rx-Guideline.pdf

This letter was written during the CDC's open session for comment about the Guidelines. They are working on changing them right onw.

Back to your appointment. You are not the intended target of the current guidelines, none of us are. The issue? The DEA has made all of us, the doctors, the pharmacists, and the addicts on the street, the TARGET WITH THE BACKING OF CONGRESS AND THE ADMINISTRATIONS -- PAST, PRESENT, AND FUTURE.

WHY? Because they have been given carte blanche to do whatever it takes to stop the "Opioid Epidemic" and slow the death rate from it. The problem is that they are BREAKING THE LAWS OF THIS COUNTRY.

1. Violating HIPAA.
2. Violating the Privacy Act
3. Violating the the Rights of every patient's Constitutional Right to Life, Liberty and the Pursuit of Happiness
4. Violating the ADA of every disabled person who is a patient.

These are just the violations on the PATIENT'S side. The provider's side include forced compromise of care, violation of the Hippocratic Oath, constitutional rights, and others.

Jim, you have to make your doctor your friend not your enemy. You need to show them that you understand their plight. That if they are following the government's direction, they need to question it.

Back up everything you say with medical facts and the CDC not anything else especially if they are ON BOARD with what they are doing! If they are questioning it like my provider, then give them a reason to treat you the right way like the AMA letter.

We are the patient. We are the one's living in agony. We are the ones that they are committed to serving. BUT... we aren't the ones holding the proverbial gun to their heads threatening to pull the trigger and destroy everything they've worked to build and their entire world if they don't tow the line.

SENATOR BARRASSO is monitoring this: he may be a Wyoming Senator but get in touch with him and mention my name. Tell him your story. We need to start coming together instead of fighting our battles alone.

I'm praying for you and remember, your doctor is NOT your enemy. They may be mislead, frightened, or even brainwashed but it's now our job to teach the medical field that OPIOIDS are actually a real treatment for chronic pain.

NERVE PAIN AFFECTS MORE THAN THE NERVES. It lights up the muscles, tightening them, cramping them, pulling at the joints and causing grinding and severe muscle and joint pain. Nerve pain doesn't isolate to the nerves but involves the muscles and joints AROUND the nerves. If it's in the feet, it involves the ankles and toes. If it's in the back, it involves the spine and upper legs and/or arms. If its in the neck. it involves the shoulders, back and head including migraines and tension headaches.

To treat nerve pain with or without Lyrica, Cymbalta, Neurontin, etc. means to treat it WITH OPIOIDS or to leave a patient suffering unspeakable torture and agony. That is inhumane. A fact the medical and law enforcement community of this nation needs to reminded of repeatedly.

My 4 year life with CRPS has taught me more than my 23 career as a pharmacist ever could. It's taught me that people can never understand what I am going through unless I tell them. And I need to tell them in terms they understand, not me. To do that, I need to know them. Your doctors only understand THEIR JARGON, THEIR WORDS, THEIR CONTEXT, so speak THEIR LANGUAGE when you talk to them, Jim, so they understand what you are saying. 🙂

Good luck and God speed.

Renee

One of these days I'm going to figure out a way to get rid of neuropathy pain. So far I am using gabapentin (900 mg four times a day) and diclofenac sodium gel cream. If it's really bad, I put CBD cannabis (not hemp!) cream down then put the diclofenac cream on top of that. Layer it as often as it is needed. I have banished ALL arthritis and fibromyalgia pain with 6 ml of boron three to four times a day. I'll start working on neuropathy soon. It's starting to hurt right now.

Renee, please don't dial back! We love you just as you are!!! Eloquent writer. Splendid. Words are everything! Yours help us know you and understand /feel your and your husband's experience. Keep on doing what you do!! 🤗🙏