Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

@do_in_sandiego

Love this thread. Yesterday morning, as I woke with anxiety from work and concern about how long I will be able to work, I was committed to finding a way to relax. I decided to pretend I was retired and had all I needed, and to do what I would do if my time was all my own. With this shift I actually ended up getting a ton of things done (looking to downsize my car, planning healthy meals, cooking a fabulous home cooked meal) and all without feeling stressed out, and didn’t notice the pain nearly as much. I will definitely employ this tactic more often. Research shows the brain reacts the same way to this “pretending” as it does to the real thing, so pretend I will! (At least on the weekends…) Happy Sunday everyone.

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@do_in_sandiego Well, let's all make a promise to ourselves to do something similar! I bet you have prompted several to try this way of looking at a day.
Ginger

Liked by lioness, lillee

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Family get annoyed with the complaints but we are a different family. We have and understand your same language and speak it. So, I don't even bring it up….Here we can freely talk. Smile.

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@lioness

@gingers Have you tried Emu cream I haven't but some people swear by it .This is 3months now and my sciatica still bothers me ,I don't know if I need to think of surgery ,non-invasive or try cream ,acupuncture or what I'm running out of options

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I started out with the cream and now use the spray. Wally World has the best price. If during the night my right hip starts to hurt I get up spray in on, rub it in good, go potty and my hip is ok the rest of the night.
Sundance

Liked by lioness

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So Thankful of the support this site gives!
Sundance

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I want to just say thanks to you all. This group really helps when I am having good days and especially bad days. when I have tried to talk to others about my pain they act as if I am getting on their nerves. My husband is great bless his heart he has really been there for me and saved my life more that once. We knew each other 4 days and got married that was 19 years ago. Yes there was drinking involved after the 4 day fling lol, but there is nothing he wouldn't do for me. I know I am truly blessed. It's hard to have a friend or even keep a friend in my experience when you have severe chronic pain. You all are so special and I hope one day we find the answers to beat our pain or at least ease it where it's not hard to enjoy our lives.

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By the way my name is Kathryn and it's been a honor meeting you all

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@lillee

I want to just say thanks to you all. This group really helps when I am having good days and especially bad days. when I have tried to talk to others about my pain they act as if I am getting on their nerves. My husband is great bless his heart he has really been there for me and saved my life more that once. We knew each other 4 days and got married that was 19 years ago. Yes there was drinking involved after the 4 day fling lol, but there is nothing he wouldn't do for me. I know I am truly blessed. It's hard to have a friend or even keep a friend in my experience when you have severe chronic pain. You all are so special and I hope one day we find the answers to beat our pain or at least ease it where it's not hard to enjoy our lives.

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@lillee
What a beautiful love story! My in-laws also married after knowing each other a brief time. Of course, this was war time. But their marriage lasted until their death.
My husband is also wonderful! He has lived through so much with my pain and other conditions. You are right, when you have someone like that, we are VERY BLESSED! I cannot imagine going through all these things and not have the support (as many DO NOT).
I do, shamelessly, have to admit, however, he does sometimes get on my nerves by being OVER PROTECTIVE. We are retired and spend almost all our time together. I do, sometimes, need a little breathing room.
Do not get me wrong. We were childhood friends, became childhood sweethearts and we weill celebrate 45 years of marriage this September.
Ronnie (GRANDMAr)

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@grandmar

@lillee
What a beautiful love story! My in-laws also married after knowing each other a brief time. Of course, this was war time. But their marriage lasted until their death.
My husband is also wonderful! He has lived through so much with my pain and other conditions. You are right, when you have someone like that, we are VERY BLESSED! I cannot imagine going through all these things and not have the support (as many DO NOT).
I do, shamelessly, have to admit, however, he does sometimes get on my nerves by being OVER PROTECTIVE. We are retired and spend almost all our time together. I do, sometimes, need a little breathing room.
Do not get me wrong. We were childhood friends, became childhood sweethearts and we weill celebrate 45 years of marriage this September.
Ronnie (GRANDMAr)

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I understand my husband is very protective and it can get very frustrating at times, but I find I am just as protective of him. Congrats on 45 yrs Wow good for ya. And having medical issues makes it even harder to make a marriage work. Thanks Ronnie, I love reading your posts, Kathryn @lillee

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@lillee

I understand my husband is very protective and it can get very frustrating at times, but I find I am just as protective of him. Congrats on 45 yrs Wow good for ya. And having medical issues makes it even harder to make a marriage work. Thanks Ronnie, I love reading your posts, Kathryn @lillee

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You are so welcome.
Thank you for the kind words.
Ronnie

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@jennyannsaal

I have been struggling with Chiari 1 Malformation, really bad, since my Recalled Takata Airbag blew up. I am really having a hard time finding a Patient Advocate, when I do not feel good, which is for the last year, I cannot think of what to ask. I just accept what the doctors say, and go home. I need a counselor, who understands what I am going through. Today rather than removing my swollen Gallbladder, the Surgeon wanted to admit me to the hospital for Failure to Thrive. I have lost 4 inches in 1 year. I have insurance, I cannot FIND a proper Counselor or anyone for that matter, who cares, to even hear the word Chiari. Thank you if you can help me, as we are running in circles, and I am so weak, I am tired of thinking of this, dealing with this. I do not plan on Surgery for decompression.

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@jennyannsaal, since you mentioned chiaria 1 malformation, here is a discussion you may find of interest, Chiari Malformation Type 1 https://connect.mayoclinic.org/discussion/chiari-malformation-type-1-20782d/ in the Brain & Nervous System group https://connect.mayoclinic.org/group/brain-and-nerve-diseases/.

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Hello, my name is Suzanne. I live in Green Bay, WI. I live with Fibro, CFS, and Lupus. I have been seeking someone who does lidocaine infusions since almost every other type of pain management has failed me. I was diagnosed in 1997 and I was only 25. This 22 year fight has taken a lot from me mentally, physically, and spiritually. I used to run my own Karaoke shows 3-5 days a week, and I had to give that up about 15 years ago. It was my hope that I would be a singer but at my age I am more just enjoying the times I feel good enough to get out and sing at other shows near me. I am really looking for support, information regarding specific lidocaine infusions, and maybe ketamine infusions as well. Please don't bombard me with your latest natural remedy like CBD or curcumin. I have tired every kind of suggested diet from vegan to keto to raw and back again (did each one for at least 6 months), and none of them gave me any relief. Some even made me worse. I hope to share some trials, tribulations, and conversations here. Thanks.

00 bright red hair

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@ibzanne

Hello, my name is Suzanne. I live in Green Bay, WI. I live with Fibro, CFS, and Lupus. I have been seeking someone who does lidocaine infusions since almost every other type of pain management has failed me. I was diagnosed in 1997 and I was only 25. This 22 year fight has taken a lot from me mentally, physically, and spiritually. I used to run my own Karaoke shows 3-5 days a week, and I had to give that up about 15 years ago. It was my hope that I would be a singer but at my age I am more just enjoying the times I feel good enough to get out and sing at other shows near me. I am really looking for support, information regarding specific lidocaine infusions, and maybe ketamine infusions as well. Please don't bombard me with your latest natural remedy like CBD or curcumin. I have tired every kind of suggested diet from vegan to keto to raw and back again (did each one for at least 6 months), and none of them gave me any relief. Some even made me worse. I hope to share some trials, tribulations, and conversations here. Thanks.

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@ibzanne Good morning, Suzane, and welcome to Mayo Clinic Connect. We're glad you found us, and hope you gain some information here that you can use. We are not medical professionals and cannot give medical advice. But we can share our experiences and what has worked for us in different situations. Each person is so unique and what works for one person doesn't work for another! I'm sure you have found this out based on what you have talked about for your different diets and courses of action that you have taken over the last several years. Being diagnosed at such a young age with this combination of conditions must be really tough. I do not have anything to offer you as what you have tried that did not work for you, works for me. But I do hope others will step up and give some insight. Please make sure that you come back and check in with us. Let us know how you are doing. We value your opinion and would like to hear about what happened when you tried some of those protocols, how it increased or decreased your quality of daily life.
Ginger

Liked by lioness, grandmaR

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@grandmar

@migizii
Hi Sue!
Welcome to our group. We are here to support you any way we can.
I am also 64 and have been living with chronic pain for over a decade.
Thankfully, over the last 18 mos. I have found a GREAT neurosurgeon to help me in a way no one else could.
I am currently pain free!
For me, there were NO 'good' days and it not only impacted my physical health, but it also impacted my mental health.
It is difficult to live with pain 24/7 for years and years.
It came to a point where I had to retire from my job 2 years early (from the minimum retirement age) and go on disability.
Tell us a little more about what you are experiencing, what you are doing to deal with the pain and what you hope to accomplish.

Have a pain free day!
Ronnie (GRANDMAr)

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Hi,
I have been a chronic pain person for most of my life-starting with migraines in my childhood (which with a number of interventions are now occurring only about 5x a month); a genetic hip issue (one hip that over the years has had interventions that work and then stop-the last one being a hip replacement; fibromyalgia being diagnosed about three years ago; and now my foot (probably being aggravated by my osteoporosis). I also have bronchiectasis which causes fatigue and requires daily respiratory treatments, but I try to take everything one day at a time and now that it’s summer, with some time off work-life is easier to maneuver. Presently, my goal is to walk again by healing my fractures in my foot……..doing the bone stimulator, remaining non-weight bearing, doubling down on calcium and vitamin d, and increasing my protein (as I’m not a big eater). Thanks for your caring interest. We all have our human conditions we walk our paths…..your support means so much!

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Family always hears our complaints and often don't know what to do about it…but we are a different family because we share what often is the same come of difficulties are talked about on this stream. We have the empathy and often solutions or near solutions to help one another to get to the next step in our daily life's chapters. We are all at different levels of acceptance and movement but that is okay because we are here to help one another. This is why it works so well.

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I just received an email from Mayo Clinic that was a special report on chronic pain that I thought I would share with the members in this discussion. I think it addresses a lot of questions I've seen and more.

Mayo Clinic Chronic Pain Report — Chronic pain – From living with pain to living your life:
https://mayocl.in/2IDALzR (PDF)

The email also included a link to the latest version of the book Mayo Clinic Guide to Pain Relief which I'm sure provides a lot of good information. I recently received a copy of the Mayo Clinic book 5 Steps to Controlling High Blood Pressure which I've just started reading to see if I can find some new stuff to work on besides the medications I take ☺.
https://order.store.mayoclinic.com/books/GNWEB22

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