Chronic Pain members - Welcome, please introduce yourself

Hello ken82! I appreciate what you are saying. I’m very careful posting links on any professional chat site especially the Mayo. I do not want to affect their database. First, let me tell you a little about myself.
I am a registered pharmacist of 24 years, disabled and inactive but licensed with the state of Wyoming and formerly licensed with the state of Texas. I have worked 15 years with the Department of Health and Human Services, 8 years with the Public Health Services at the Indian Health Service in the Wind River Service Unit at Fort Washakie and Arapahoe in Wyoming, and 3 years with the Veterans Health Administration at Fort MacKenzie or the Sheridan VA Medical Center at Sheridan, Wyoming and 2 years at the Doris Miller VA Medical Center in Waco, Texas. In addition, I’ve worked nursing home, special needs, mental health, clinical health, oncology, and retail pharmacy including managerial.
I have also served on Pharmaceutical Therapeutics, Quality Control, Infectious Control, Tribal Emergency Management, and IT Committees. In addition, I have served as Pharmacy IT Liaison and Pharmacy ADPAC for the implementation period of the Electronic Health Record into the Indian Health Service as well as supervised the Pharmacy DEA audit of the Wind River Service Unit. I also was the Service Unit liaison for the State of Wyoming Immunization Department for ordering, storing, and tracking of all Immunizations.
During this entire period, my husband became disabled with Chronic Traumatic Arthritis and Chronic Pain due to 39 surgeries and an unconfirmed diagnosis (which my son most likely has as well) of classic Ehlers Danlos Syndrome. I also became disabled with complications of a TKR and onset of Complex Regional Pain Syndrome, type 2. Our pain is managed partially to within livable levels with my husband’s at about 75% and mine at 40%.
I continue to speak professionally from the oath I took as a pharmacist because I AM a licensed pharmacist with the state of Wyoming. I pay my fee every year to keep it. If by the hand of God, I ever get treated to the point I can stand, sit, or walk and think clearly enough while doing so to work again, I intend to do so. The State Board knows who I am, why I am not working, and encourages me to hope in that day.
Today, I am an advocate for the Chronic Pain Community of Wyoming and the Nation. I am an advocate of the Rare Disease Community of Wyoming and the Nation. I am a member of the national organizations, RDLA, and NORD. I am also part of Wyoming Independent Living’s Advocacy Network, Don’t Punish Pain Rally Network, and RSDSA for CRPS. I’m also active in the promotion of Service Dogs and the appropriate treatment and usage of Service Dogs, Therapy Dogs, and Emotional Support Dogs.
I advocate through Social Media, my writing, my art, my website, my blog, and testifying before the state and federal legislature. I also speak to providers and nurses and patients all over the nation and globe about how they are treated for pain. What they are feeling about their care, what their providers have said, or not said about it . I also know how to decipher statistics, drug studies, and distinguish the appropriate and applicable language within them. I have been doing it for 30 years.
As for sources, I do not “litter” my posts with sources because I’ve been cautioned many times in sites such as the Mayo NOT to do precisely that. Most if not all of my sources come from CDC.gov, FDA.gov, DEA.gov, the Pain Network, RSDS.org, NORD.org, WebMD, or drug references I have forwarded to me.
As a pharmacist, I speak straightforward— am blunt— and do not lie. Why? When pharmacists do such, people die.

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@faithwalker007 Thank you for your Bio.....
Well then, why not preface some of your posts about drugs and those fields you have expertise in which something like: "As a Registered Pharmacist for XX yrs.... or "as a long time member of this or that organization....." .. even "as a staff or supervisor at this place or that for XX years.." .. So many who come to Connect are not aware of your background.. Give the new contacts a reason to trust what you write... informed opinion is better than just opinion.. but back-up gives a feeling of consensus and support to anyone's writing.. like NIH materials usually have been peer reviewed and published prior to the public having access so they come with credibility....

As a registered Architect for decades.. a Bachelor of Architecture from Univ. of Illinois, a Master's from Oklahoma State, and a PhD from Texas A&M.. the statistics I can handle.. Practiced for 20 +yrs.. taught at Universities for 20 +yrs.. now retired for a long time, I began my career as a Marine Corps Officer... After being treated at Mayo, MN for problems, I wanted to help where I could..

I was told that folks like long time contributors could put links or references on Connect from credible sources after I have been a contributor for a period of time.. K

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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.

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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.

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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!

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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.

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@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

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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.

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@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

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