Chronic Pain members - Welcome, please introduce yourself

Sorry for the delay in answering @ken82. I’ve been prepping for the RDLA Conference with Congress at the end of the month.
I understand what you are saying and if I was citing statistics or studies for a specific PUBLIC purpose, I definitely would. To not do so, is called PLAGIARISM. But I’m not doing that.
What is on Mayo Connect penned by me to Friends in times of need or in response to the same, is my PERSONAL OPINION AND DRAWN FROM MY PAST EXPERIENCE—which the person is informed of. It is written completely OFF THE CUFF and is extracted from what is stored in my brain from the life I and my husband have lived over 40 years as Chronic Pain and disabled warriors.
We were two professional people, not burdens but then our bodies could no longer tolerate our diseases or the impact of them and any attempt to earn a living, play, or function in a normal way became impossible or harmful.
In other words, life officially became a burden for us and all around us. Severe, unbearable pain with non-stop sciatica? Burning legs and foot with a combination of sensitivity to touch and cold. Lower back pain that is touched but not managed by a SCS. And exhaustion that makes a seven day hospital shift look like a cakewalk. The perfect spouse for a man with loose, painful shoulder joints that slip in and out during sleep, a hip that is constantly sliding out of socket and injuring his surgically-repaired labrum, and the nerve-damaged feet which keep him awake and destroy his p pool mornings.

Sorry for the delay in answering @ken82. I’ve been prepping for the RDLA Conference with Congress at the end of the month.
I understand what you are saying and if I was citing statistics or studies for a specific PUBLIC purpose, I definitely would. To not do so, is called PLAGIARISM. But I’m not doing that.
What is on Mayo Connect penned by me to Friends in times of need or in response to the same, is my PERSONAL OPINION AND DRAWN FROM MY PAST EXPERIENCE—which the person is informed of. It is written completely OFF THE CUFF and is extracted from what is stored in my brain from the life I and my husband have lived over 40 years as Chronic Pain and disabled warriors.
We were two professional people, not burdens but then our bodies could no longer tolerate our diseases or the impact of them and any attempt to earn a living, play, or function in a normal way became impossible or harmful.
In other words, life officially became a burden for us and all around us. Severe, unbearable pain with non-stop sciatica? Burning legs and foot with a combination of sensitivity to touch and cold. Lower back pain that is touched but not managed by a SCS. And exhaustion that makes a seven day hospital shift look like a cakewalk. The perfect spouse for a man with loose, painful shoulder joints that slip in and out during sleep, a hip that is constantly sliding out of socket and injuring his surgically-repaired labrum, and the nerve-damaged feet which keep him awake and destroy his p pool mornings.

I have been a member of The Chronic Pain group for over a year and I believe this is my very first post. That's not because I don't have anything to say - I could go on forever but my chronic intractable pain is so intolerable and overwhelming that I literally don't have the energy or time to express my thoughts and feelings since my pain clinic abandoned me almost 3 years ago. The pain is so all-consuming that I can only stay awake for about an hour and then I have to knock myself out. I just wanted to let you know that I read your posts when I can and you have my greatest admiration. Thank you for all you do!

He has to justify lowering your dosage, woogie. He can’t just spout something like “opioids don’t work for nerve pain.” If you were maintained at a certain level and now you are not, TELL HIM. NOW. Call his office this minute. Report your symptoms, your pain levels. Show him what his actions are doing to his patient. You are the patient, not him. The guidelines are not for him or you, they are for others who do not KNOW WHAT THEY ARE DOING OR DON’T NEED THE MANAGEMENT. You need to be vocal. I know it’s hard to do so when the doctors are the ones who are supposed to know what to do. But they are not acting like doctors right now, they are acting like confused sheep.
Go to the AMA website and print off the opioid letter stating they don’t agree with the guidelines. Take it to him. He is the specialist not you. Ask him to act like one. You are the one who must LIVE with his actions, not the DEA, not the government. And you are suffering. Is that his intentions, what he was taught to do?

Make him think about what he’s doing. Do not speak to him in YOUR language, but HIS. Doctors only understand what they know. Go to him on his level. He took an oath to DO NO HARM. The government DID NOT.

@femuchay
I'd advise spending a few hours perusing through the neuropathy group that Colleen gave you the link to. I spent my first 2-3 weeks on Connect reading through the neuropathy discussions and learned a lot, before I even wrote my first post. My wife only gets relief from her neuropathy from medical marijuana. If you have access to it you might consider it. She only uses it for relief about 3 times per week, but it lasts a few hours and gives her a real break from the pain. Plus it helps her get to sleep, but not until at least 2 hours after smoking it. Also, depending on your particular lifestyle, you may find a benefit in eating healthier and exercising more, unless these areas are already optimized. Best, Hank

I saw a spine specialist this week and asked if I took any meds for my arthritis...I said no (ie, NSAIDS, Tylenol, etc)....I said they don’t work...he nodded in agreement. I said the chronic pain community used to have pain medication that worked until the opioid crisis took the option away. These medications do work and help chronic pain sufferers and most often do not cause addiction. I am not I need of this level of intervention, at this point, but wanted him to hear the truth.

@migizii I just got on here after a hiatus but I am full of arthritis osteo and have been talking with parrotqueen she has helped me out with arthritis and osteoporosis One thing she said was take Boron I was dubious at first but started with 1pill now I take 4and she was right I don't have any arthritis pain anymore Research it for yourself like I did but it really helps I haven't taken my pain pill for a couple of days now

Hi. My name is Julie and I had encephalitis and meningitis of unknown origin which lasted 6 months and that cleared up about a year ago. During these last 12 months the headaches continue daily and are very incapacitating and brain recovery is difficult and slow due to the ongoing headaches. I’ve had/ have numerous oral medications and the Cephaly device, as well as had 3 Occipital injections, 2 trials of Botox injections with no response, and now am on month 2 of Emgality. My neurologist is working his way through the options and I do appreciate that but love that I found this group and maybe will get some good support and advice. Is anyone else on Emgality? If so, how long was it before you saw results?

I have been a member of The Chronic Pain group for over a year and I believe this is my very first post. That's not because I don't have anything to say - I could go on forever but my chronic intractable pain is so intolerable and overwhelming that I literally don't have the energy or time to express my thoughts and feelings since my pain clinic abandoned me almost 3 years ago. The pain is so all-consuming that I can only stay awake for about an hour and then I have to knock myself out. I just wanted to let you know that I read your posts when I can and you have my greatest admiration. Thank you for all you do!